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Saturday, November 29, 2008 8:04 AM CST Happy Belated Thanksgiving to all!
What a wonderful Thanksgiving we had. There are so many wonderful things to be thankful for this year and we appreciate each and every one.
We are thankful for the wonderful, life saving gift of Abby's new heart.
We are thankful for the doctors and nurses that made Abby's transplant and recovery possible.
We are thankful for all the wonderful friends who supported us during our journey to get Abby's new heart, with the gifts of time, talent, prayer and financial support.
We are thankful for all the unexpected kindnesses bestowed on our family over the course of the past 2 years.
We are thankful for our three beautiful girls, each is a gift from God.
We are thankful for our family, we are so lucky to have such great parents and siblings. We love you all!
We are thankful for the house we have, the cars we drive, the food we eat, the clothes we wear.
Each day is a gift and even though life is returning to normal for us, we are forever changed by the "journey to a new heart". We know that life is precious and delicate and that we are completely in God's hands.
We are thankful for God and the everlasting love he gives to us all.
Happy Thanksgiving always,
Love, Heather, Mark, and the girls
Sunday, November 16, 2008 11:04 PM CST Abby will have insurance again next year.
In late October we were able to sign her up for a new type of insurance through General Mills with a higher lifetime maximum. This puts an end to a great deal of uncertainty. We are so grateful.
Since Abby hit her previous lifetime maximum in 2007, we’ve received tremendous support and seen the best in people who have reached out to help us. Just to have Abby listed for a new heart, we had to prove that the ability to finance her care. We must rank as one of the luckiest families on the planet to have come through a tumultuous year and to now be, not just whole, but thriving on so many fronts. It’s a bit overwhelming.
Thank you, all of you who have helped us through fundraising and prayers. You’ve had a terrific impact on our lives. Know that you are in our prayers and we appreciate the gifts we’ve been given every day.
God bless - Mark
Wednesday, November 12, 2008 10:05 AM CST Hi everyone,
I hope that many of you had a chance to watch part 1 of the KARE 11 story last night. Keep watching today to see Jack Corbo's story, get your kleenex ready because it is very sad...Jack should still be here today.
If you missed the story you can watch it online.
Here is the link to the page where you can see the story.
http://www.kare11.com/news/news_article.aspx?storyid=528661&catid=2
Just paste it into your browser.
I hope that this helps Gina!
Thanks for checking on us and praying.
Love, Heather
Tuesday, November 11, 2008 9:30 PM CST Hi everyone,
Well tonight is the beginning of the KARE 11 Extra on Abby and Jack Corbo and the experiences that our families had with the U of M. Seems that it is already creating a lot of buzz and controversy even though the story has not aired (you can read the blog on the KARE 11 site tied to the Extra story). I just want to say that everything regarding our story with Abby and what we know about Jack Corbo is true. We did not sensationalize anything for the cameras and told the truth about what happened (some of the footage you will see is from our home video camera). Our goal with doing this story is to create awareness, get the U of M to make necessary and positive changes to their pediatric transplant program, and hopefully save other children's lives. These are children we are talking about and we want the best possible care for these special children in need of new hearts.
The journey we had with Abby to get a new heart was long and often scary. We were lucky to find out the truth in time to get Abby a heart to save her life.
Please watch the story with an open mind and heart.
Love, Heather
Monday, October 27, 2008 9:40 PM CDT It has been entirely too long since I updated Abby’s CB page, but I have to admit that life moves fast when we are having fun. Let me see if I can summarize what has happened during the past month.
On October 11th our neighbor Matt Udermann planned a Welcome Home Party for Abby. It was a beautiful evening and a great turn out. The kids had a blast running around with the other kids, eating pizza and popcorn and then snuggling up on sleeping bags and blankets to watch an outdoor movie. Thank you to Matt and our other neighbors that helped coordinate the movie night and gave up their backyards for the evening. It was so much fun! Our friends Bob and Tammy Brice and their sons Carter and Conley drove all the way from Des Moines, Iowa to come and participate in the movie night. They spent Saturday night at our house and we had a good time catching up with them also. We are so thankful to have such wonderful neighbors and friends!
Then the weekend of October 16-19th (over MEA break) our new friends Lyn and Erin from St. Louis drove up to spend the weekend with us. They arrived on Thursday around lunch time. The girls were so excited to see them. When we were in St. Louis is had become a regular part of Abby’s day to stop down and see Lyn and Erin in the apartment office. Thursday evening Lyn and Erin helped Abby, Clare and Eva put on a fashion show for their parents. Lyn brought a whole suitcase full of dress up costumes for the girls. The show was so cute and the girls loved it. Then on Friday we had a relaxing day, did a little shopping, and then went over my parents’ house (Oma and Opa’s) for dinner. My brother and his family joined us also, so it was a very fun evening. Saturday we drove out to Mark’s parents’ house for coffee cake and then drove to Nelson’s farm near Litchfield, MN for a day of pumpkins, horse rides, wagon rides, baby chicks, and mini donuts. The weather was a little windy, but it was still sunny and warm. The girls’ favorite part was riding the ponies and horse. They had no fear; they all just jumped right on and took their rides. Even little Eva! When her rides were over she would instantly start giving us the sign language for “more”! I have great pictures from this day and will try to get them posted shortly. Then on Sunday we had a nice breakfast and got Lyn and Erin on the road back to St. Louis. We are so thankful that they made the trip to see our family. We are so lucky to have made these great friendships from our time in St. Louis. We look forward to seeing Lyn again in just a few short months when she visits for Christmas.
On Sunday night after Lyn and Erin went back to St. Louis Abby was not feeling very well. We tucked the kids into bed and Abby had a very hard night. She couldn’t get comfortable, was having a hard time taking a deep breath, she said that it hurt to breath and was miserable. Mark and I debated about taking her into the ER during the night, but we know that this is not usually the best for Abby because they don’t know her history and usually go overboard on tests. So, I took Abby into her pediatrician on Monday morning. Sure enough, as we suspected, a chest X-ray showed that she had pneumonia in her right lung. So, she was put on a Z-pack (zithromiacin) antibiotic for 5 days. She missed Monday and Tuesday of school. She is now feeling much better. We had an appointment today 10/27/08 at the U of M and her chest X-ray was much better. There is still a small amount of fluid on her right lung, but it is getting better each day. We will go back again on Friday for another X-ray.
Monday 11/3/08 Abby will have a biopsy at the U of M. If everything looks good with the biopsy then we will go to monthly visits. That will be awesome. Her appointment today was excellent. Her heart is functioning just wonderfully. There is a number that Dr. Braunlin watches that tests the stress that the heart is under. Today Dr. Braunlin told us that Abby is only the second patient in her career who had a normal number (just like someone without a heart transplant)! The normal range for this test is between 50 and 125 and Abby was at 67! These types of numbers help us know that her heart function is great and that her body is accepting the heart completely! We are always so thankful and humbled by the family that gave the gift of life to our Abby. We think about that family often and know that their grief must be overwhelming at times and that they miss their daughter each and every day. We have not written to the donor family yet, but we are planning to write a letter and send Abby’s picture soon. We hope that our words and photo may give them some peace as they enter the holiday season for the first time without their precious child.
This past weekend Abby and Clare went with some other neighbor girls to see “High School Musical 3” in the theater. I went with them and it was really fun. It is so nice to do these types of normal things with the kids and watch them enjoying every minute.
Well, Halloween is quickly approaching. We are hoping that we get a little warmer weather by Friday night. Our friends the Mitchells will join us with their two little girls for some trick-or-treating on Friday. Mark turns 39 on Thursday, so we will have two fun nights of celebrating this week. Mark says that he just wants a pumpkin cake and a relaxing night with the girls…will do. Happy Birthday Mark, I love you!
Last, KARE 11 news has been working on an investigative story involving Abby and some other heart children since May of this year. It is currently slotted to air on November 11, 12, and 13 during the 10:00 news. It is a 3 part story. Rick Kupchella is the reporter on the story and he has done a great job researching and writing the story. We hope that many of you will be able to tune in on these evenings. It will give some insight into our struggle to get Abby her new heart.
Abby continues to amaze us each and every day with her growing strength, laughter, spirit and normality! If we are not updating often it is only because life is good and we are enjoying it whole heartedly.
Love to all,
Heather, Mark, Abby, Clare and Eva
Wednesday, October 1, 2008 4:12 PM CDT Sorry for the lack of updates recently. No news is good news. Mark traveled for work half of last week and he is gone in California and Washington state all of this week. So, when it is just me home with the three girls there is not much time for typing updates. I am pretty tired by the time 9:00 PM rolls around and then I just can't get motivated to type a decent update. I started this update at 4:00 PM today and then everyone woke up from their naps and it got postponed again. I am going to try and finish this update tonight before I go to bed.
First of all, I want to say congratulations to Manning Scott, his parents Kylee and James and his family as he received his gift of a new heart on September 27th. We met sweet Manning when we were at Children's Hospital in St. Louis and we have been praying for him for many months. We thank God that he was given this wonderful second chance at life. The new pictures on his website, post-transplant, look wonderful. It is amazing! He still has a recovery road to journey, but he is over the biggest hurdle of them all. If you would like to congratulate the Manning family go to www.carepages.com and enter manningsheart.
Also, please pray for our heart friend Riese. Riese and Abby were in the ICU together since they were just babies. Riese also has HLHS and her heart is not doing too well. She keeps going into atrial flutter and then needing cardioversion (stopping and re-starting the heart) to get a regular rhythm back. This is hard on her and she is also taking high levels of medication to try and prevent the flutter. It seems that there may be another heart surgery in her future or there is also talk of transplant. We are praying for Riese and her family (her mom is due to have baby #2 tomorrow and we have been there and it is hard to deal with all that stress). Please send up some prayers for Riese. www.caringbridge.org/mn/riese
Now about Abby. She is doing so great! Great is really an understatement. She is terrific. She had her 4th heart biopsy on Monday and it went very well. We got the results back on Tuesday morning and there is no rejection. We get nervous waiting for the results and are thrilled that her new heart is working so well and compatible with her body. Because of the good biopsy results we are weaning the steroid that Abby is taking, Prednisone. Also, we were able to stop Abby's diuretic all together, because her kidneys are working very well and she doesn't need the extra help peeing anymore. Slowly we will get rid of more and more medications. We will go back for another biopsy on October 16th. Then if that biopsy looks good we will be able to wait a month before the next biopsy.
Abby did get a runny nose during the second week of school. Of course, I was very worried about how she would weather the cold, but amazingly she did great. Before Abby got her new heart a minor cold would knock her out for weeks and she would be so very sick. With her new heart she felt a little stuffy and under the weather, but she was still running up and down the hill in our backyard and had energy and was able to sleep through the night. It is awesome. We are still being very careful with her and don't want her to be exposed to viruses and bacteria if possible, but we also know that she will be better at fighting these bugs now with her new heart. We are also incredibly thankful to Abby's teacher, classroom aide and school nurse for helping to keep Abby healthy at school and being so great about hand washing in class. They have been very accommodating and understanding and this is making Abby's first year of school fun and safe. Clare's teacher and assistants have also been wonderful. Clare has another little girl in her class, Kendall, who was born with a major heart defect and also needs to be very careful about picking up colds and germs. We are thankful for these wonderful teachers and schools for our children.
Abby loves school and her dance class. She gets a little frustrated in dance class when she has trouble doing all the steps that the teacher shows. But, as her legs and muscles continue to get stronger these things will become easier for her. She tries very hard and loves going. I am very proud of her effort and am amazed that she is in a dance class just 8 weeks post transplant.
We are getting more and more settled into a routine now at home. It feels really good to be doing normal things and I think that it is helping us all relax. Sometimes it is hard to see how stressful a situation is when you are in it. But when you have a chance to step away from the stress it becomes clear how hard stress is. I actually feel like a different person now than I did over the summer. I tried to stay positive while we were in St. Louis and waiting for Abby's heart, but it was very difficult. I like having my family all in one place and I like being able to clear my mind and think about the future. Abby's transplant is a miracle and it has been life changing for all of us close to her.
Well, one more thing that I need to mention before I sign off tonight. One of our neighbors, Matt Udermann, has generously put together a Welcome Home Party for Abby. The party will be held on Saturday, October 11th right here in our neighborhood. It will be a pizza dinner and then an outdoor movie with popcorn and other treats. Please plan on attending if you can and bring your blankets and sleeping bags for the outdoor movie in case it gets cold. The party will be held at 2347 Kelm Street in Chaska. Dinner will start at 5:30 PM and the movie will be at dusk. It will be a child appropriate movie. It should be a fun night for all! Thanks for planning this Matt and we are really looking forward to attending. Please see the photo page for a flyer with all the details for Abby's Homecoming Party.
I am sure that there are other things I am forgetting to mention right now, but I will try to be better about updates more often.
Love,
Heather
Monday, September 15, 2008 9:06 PM CDT What a fabulous family weekend! At the last minute, Mark and I decided that it would be fun to take the kids up to Alexandria for the weekend. Mark’s parents have a place on Lake Ida and his brother Mike and wife Jackie are here visiting from Colorado. They were all planning to be in Alex for the Grape Stomp Festival, so we decided to head north as well. We made reservations at Arrowwood Resort on Lake Darling, just a few minutes south of Lake Ida. We had never been to Arrowwood, but it has an indoor waterpark so we thought that it would be fun for the kids. Our expectations were exceeded. The kids LOVED the waterpark. This was the first time in almost 2 years that Abby has been able to go swimming. It turned out to be a great weekend for an indoor waterpark, because it rained the whole time. All three kids did great in the water. Even little Eva went down the biggest kids’ waterslide all by herself. Abby was tentative at first about the water, but she got more and more comfortable as we spent more time there. One of her favorite things was going down the lazy river with her Dad. Clare and Eva couldn’t get enough of the waterslide. I think that Eva drank at least two or three gallons of chlorinated water this weekend. We had to drag them out of the pool and when we left Abby said that we “just didn’t stay long enough”. On Saturday morning when we were having breakfast with the kids, one of the staff members, Shari, came up to us and asked “are you the Ostlies?” She had been following Abby’s site for some time now and just couldn’t believe that we were at her resort. The staff was very friendly and we were even treated to some sweatshirts for our family before our stay was over. Thank you Arrowwood for making great family memories for us and showing us a great weekend. It was also very nice to spend time with Mark’s family this weekend and catch up with his brother and sister-in-law. We will be seeing more of them this upcoming weekend. We also bummed into another heart mom at the Grape Stomp. It was great to see you Lindsey and good luck with the birth of baby number two any day now. Riese – we are looking forward to having you come for a sleepover sometime after your new baby sister or brother arrives.
Thank you to our good friend Erin Mitchell for dropping off a wonderful meal yesterday. Erin, you are always so thoughtful and kind. Thank you for your friendship.
Abby had her third biopsy today at the U of M. She did very well. Dr. Braunlin is frankly very impressed with how well Abby is recovering and just looking in general. Dr. Braunlin continues to watch her medication levels very closely and makes the necessary tweaks to keep things just right for Abby. We were down at the U for most of the day. Paula, the transplant coordinator, called me around 4:00 this afternoon with the great news that Abby’s heart has zero rejection! Awesome! Thank you God. Abby and our family have been blessed. Abby will have another biopsy in two weeks, and then in that biopsy looks good we will start to cut down on how often she needs to have these procedures. I made a phone call to the transplant team in St. Louis to let them know this great news and once again express our gratitude for their care of Abby this summer.
My thoughts are starting to run together. I have a few more things to say, but if they are going to be understandable I better wait until tomorrow.
Thank you for checking on Abby and our family. Abby was also on WCCO TV on Saturday night this past weekend. They have a link to the story on their website if you are interested in seeing it. It was a very nice homecoming story.
Monday, September 8, 2008 8:54 PM CDT Good evening everyone.
We hope that you all enjoyed the beautiful weather this weekend. This is the kind of weather that we Minnesotans live for! Just awesome. Feels like we should start picking apples and pumpkins soon. This year we may even take the kids to the orchard for fun.
Abby enjoyed her first two days of Kindergarten very much last week. She was so disappointed that she had to be even a few minutes late on Friday, because she needed to have labs drawn before school. Today she had to miss all of her school because we had the usual run of post transplant follow-up tests at the U of M. She has labs, x-ray, echocardiogram, EKG and then we saw Dr. Braunlin. All of her lab results look excellent. Her x-ray shows that her right lung is almost completely clear of fluid. This is great news. Her right diaphragm is still paralyzed, but we are all hoping that it recovers on its own in the next several months. The echo and EKG show wonderful heart function. Dr. Braunlin says that Abby's heart tones sound "crisp" and that all is wonderful. We don't have to go back a second time this week. Abby will have her third post transplant biopsy via heart cath next Monday. We don't anticipate any rejection or change in heart function, but it is very important at this point to be proactively cautious. If there were any signs of rejection they want to catch it early and treat is appropriately right away.
Abby has so much energy. It is fun to see that her legs are getting stronger each day and that she is starting to pick up her feet and knees higher when she tries to run. Slowly and surely she is gaining strength. Of course her mouth never stops moving. She talks constantly and is always asking questions, telling us something, or just babbling in general. She and her sisters have a great time playing together. Abby and Clare have been trying to include Eva in their pretend play a little bit more. Eva doesn't have a lot of words yet, but she understands everything and she can tell a whole story with her hand gestures. It is fun to watch her.
This weekend we had a nice time just doing normal stuff at home. Saturday morning we had some friends over with their kids for brunch. Then Saturday afternoon Mark had to clean out our dryer vent...he said that it was fun and he wasn't kidding because it feels great to do normal life things. We also kept trying to unpack from St. Louis and worked around the house. Sunday we took all the kids to church and then did a little back to school clothes shopping. Very nice weekend. We now have so many things that we want to do, because we are spending time thinking about when the call will finally come.
It’s getting late and tomorrow is going to be a big day. Clare starts preschool tomorrow and Abby has school. Also, Rick Kupchella from KARE 11 news will be coming to Abby’s Kindergarten class tomorrow to get some footage of Abby in school for an upcoming story. That should be fun.
Thursday, September 4, 2008 6:47 AM CDT I got a call from Paula, the transplant coordinator at the U of M, just before we left for Abby's Kindergarten orientation yesterday morning. Abby's biopsy showed NO REJECTION!!! Her heart looks as perfect as it could 4 weeks post transplant. Praise God for He is good. Bless the family of the child whose heart now gives Abby life and help them find some type of comfort knowing that their devestating loss saved the life of another child. Thank you for praying, we see the wonderful results in front of our eyes every day.
Today is Abby's first day of Kindergarten! I can't believe that she is actually going to school. If you would have asked me three months ago I would have told you no way that it would be possible. But, here we are on September 4, 2008 and our sweet 5 year old Abby is starting Kindergarten just like she should. She is ready. She did a great job at orientation yesterday. She bravely walked up to lots of the other kids and asked their names and introduced herself. I just sat back and watched and was beaming with pride. What a good girl. She won't participate in recess time for the first few months, because her chest is still very fragile and we wouldn't want it to get injured. Other than that, she will be careful to wash her hands really well and often and school will be great fun.
Clare has pre-school orientation today. She is very excited and ready for a new adventure. She is looking forward to meeting her teacher and seeing who will be in her class.
Eva is just the sweetest baby ever. She had her 18 month well baby check-up on Tuesday. She weighs 32.2 pounds and is 37 inches tall. Just for reference, Clare and Abby are both 40 inches tall. Eva is way above 97th percentile for height and weight. What a big girl. Mark and I look forward to attending the 2028 olympics and watching Eva win the gold medal in sand volleyball. Awesome.
I am taking the girls into General Mills this afternoon for a visit. Mark's team meets at 1:00 for a full team meeting, so we will go and say hello. It should be a fun visit.
Thank you for checking on us. We love the guestbook entries and I am happy to report that I have much less time to check them now, because I am busy doing NORMAL family and life things. Have a great Thursday everyone.
Love, Heather
Monday, September 1, 2008 8:41 AM CDT If you missed the Fox 9 news story about Abby last night, here is the URL that you can paste into your web browser to watch the segment.
http://www.myfoxtwincities.com/myfox/MyFox/pages/sidebar_video.jsp?contentId=7330580&version=1&locale=EN-US
Watching the morning news it looks like it will be a hot Labor Day. We already got the pool filled for the girls and Grandma and Grandpa Ostlie are coming over for some lunch and playtime today. We are having a relaxing morning here. Clare and Eva are still not feeling well. I took them into urgent care yesterday morning and the doctor said that Clare has likely developed Bronchitis, because her lungs sounds have a rattle. She put both of them on an antibiotic, so hopefully after another 24 hours they will start feeling much better. I am glad that Clare does not have to start preschool until next week, because by then she should be feeling much better by then.
Abby has her second heart cath/biopsy tomorrow. We need to be down at the U of M by 6:40 AM in the morning. The cath is scheduled for 8:40 AM. Abby will need to be intubated for this procedure. We are praying that again the biopsy is negative for any type of rejection. We should have the results of the biopsy back by 5:00 PM tomorrow. If we have the results by the end of the day we will post them, if not we will post them on Wednesday.
Abby is just a fireball. She has so much energy and has been running up and down our hill in the backyard with ease and not even getting out of the breath. It is great to see. What a wonderful new start to life.
Have a wonderful Labor Day and good luck to all the kids starting school tomorrow. Be safe and have fun.
Sunday, August 31, 2008 4:05 PM CDT Hi all,
What a great Sunday!
The girls are out swimming in the pool for probably one of the last times this year. It is really fun.
Just wanted to remind everyone that Abby will be on Fox 9 News tonight, Sunday, August 31, at 9:00 PM. We hope that some of you are able to take time out from your labor day plans to catch the news clip. Otherwise, you will be able to go to the Fox 9 website and see it after the news airs tonight.
We are so glad to be home together.
Love,
The Ostlies
Friday, August 29, 2008 7:07 PM CDT Abby and I are still at Oma and Opa's house. Clare and Eva are feeling better each day, but they still have slight runny noses and coughs. Mark and I wish that we could have been back together by today, but since we have worked so hard this week to keep Abby healthy, it seems only best to wait until Clare and Eva are feeling 100 percent better. All of us have had a good week, despite the fact that our family is still split in two. Hopefully, we will be together tomorrow or Sunday at the very latest.
Mark, Clare and Eva have been taking frequent bike rides and walks outside. The girls know that if they are good the bike ride usually includes a stop at the DQ for a little ice cream treat. They have also been trying to get things unpacked in Chaska and somewhat back to normal. I brought all the laundry with me to Oma and Opa's house and have gotten most of that done. Clare and Eva are good helpers and are enjoying being with their Papa very much.
Oma took Abby and I to a new park in Apple Valley one afternoon. The park has some waterfalls and lots of open green space. The playground is very nice and it even has a splash pad for the kids. Abby was shy at first, but then after not too long she was walking on the splash pad and going through some of the sprinklers. We had a great time that afternoon.
Last night Abby took her first real bath post surgery. All the time that she had her Broviac IV line she really couldn't take a bath, at least not one with much water, because we had to protect the IV line from infection. So, last night we filled the tub extra full and even turned on the spa jets. She floated on her tummy and even put her face in the water. She loved it! Then this morning she woke up and wanted another bath right away. It is so nice that she can do these normal things again.
Today we went and got Abby's ballet and tap shoes and a leotard for dance class. Both Clare and Abby will be starting dance class at the Dance Arts Center in Chanhassen in September. They are both really excited to start taking lessons. Clare and I will make a special trip to get her dance things next week. I couldn't even guess at a shoe size for Clare, because she has grown so much this summer. Eva is not old enough to start taking lessons yet, but I have a feeling that she will need a leotard like her sisters to wear on the night that they have class. Eva won't want to be left behind.
Finally, Abby's quote of the week is, "My new heart came with laughter". This was not prompted by an adult, she came up with it all on her own. So sweet.
Abby wants to go to the park right now, so I will give a more detailed medical update next time. Her heart is doing great. We have had two follow up visits at the U of M. We have had a few medication changes. Her next heart biopsy/cath is scheduled for Tuesday, September 2nd at the U of M.
Thanks for continuing to check on us. We are so thankful for all of your love and support.
Tuesday, August 26, 2008 6:13 PM CDT Busy day today. I picked up Clare and Eva this morning to bring them home. They are sick, so Abby and Heather went to Oma and Opa’s house. We can’t knowingly expose Abby to this even though it’s no fun to be apart especially on our anniversary. My folks have had the girls for several weeks and hopefully can enjoy a well-deserved break. They are excited to be at home and having fun after more than a month away.
Sorry for the wrong message about the news story last night. We’re now told it will air tonight or tomorrow night at 10 pm on channel 4.
God Bless - Mark
Monday, August 25, 2008 6:01 PM CDT We’re home.
WCCO (channel 4) was just here to get some footage for a story for the 10 pm news tonight. Abby acted shy, but I it will still be fun to see her on the news.
It’s been a wonderful past couple of days. Leaving our friends in St. Louis was hard, but it feels so good to be home. Everyone traveled like champs. We left on Friday, stopped in Des Moines and stayed with the Brice Family. Tammy had a princess lair prepared for Abby to sleep in and she was a complete giggle monster upon arrival. We had a great Saturday morning with them, then made our way to Greene IA for a visit with Great Oma. This too was much fun and we topped of the visit with the best steak dinner ever.
We pulled in just before 9pm to giant welcome home signs and chalk art. It was quite fun. Immediately, Abby wanted to invade our neighbors’ home to see if her friend, Lauren, was up. She was (we had called ahead). She settled down easy that night after a long day and slept well.
Sunday morning we had an incredibly warm reception at church. It was a gift to be able to see the joy and satisfaction on the faces of so many people that have been on this journey with us. We got a jump on unpacking with the help of Oma and Opa, but still have a bit of work ahead of us.
Clare and Eva have colds so they are still with Grandma and Grandpa, but we should be reunited soon. We had our first follow-up appointment with the UofM today and everything about her heart still looks good. Abby’s right lung still has not expanded so we need to be very cautious about any colds that could lead to pneumonia.
A special thank you to Erin Mitchell for making sure we came home to a stocked home. And thank you to all who have made this such a wonderful homecoming.
God Bless - Mark
Thursday, August 21, 2008 11:54 PM CDT Abby has continued to recover well from both the transplant and her urinary tract infection. She is doing so well that we have been cleared to return to Minnesota. We will travel home tomorrow or Saturday. We’re packing up the apartment here, and trying to keep the other recovering patient (Heather) from overdoing it. Our friend Marcia drove in from Chicago on Wednesday to help with packing and lifting. She’ll stay until we leave, and we appreciate her making the trip.
Abby has entered unofficially into a macaroni and cheese eating contest. It’s great to see her having an appetite, and we are more than happy to satisfy her cravings.
The other big news is that on Wednesday, her broviac line was removed in a simple, very brief procedure. For the first time in 18 months, she has nothing connected to her. No lines, no dressings, no backpack trailing her. She’s sure to get a few swims in before summer ends.
One thing we haven’t shared yet is that her diaphragm on her right side is currently paralyzed. Breathing and speaking is a bit laborious at time, but not slowing her down. We should know within six months if this is permanent.
Heather isn’t feeling her best post-surgery. She returned to an ER this evening and left with some antibiotics. We hope tomorrow is a better day for her, and will decide on our travel schedule based on how she’s doing.
Thanks for checking on us. Signing off from St. Louis.
Monday, August 18, 2008 7:51 PM CDT Hello all, this is Heather writing tonight.
We got the results of Abby's first biopsy back around 5:30 PM this evening. Abby is rejection free at this point! Her heart showed zero signs of rejection and we are all thrilled with this wonderful news. Like Mark explained earlier today, they did put a stint in Abby's superior vena cava to open the vessel wider and allow more blood to flow through. This part of the procedure also went well and they will do another x-ray tomorrow morning to make sure that the stint is correctly placed. If everything looks good with the stint on x-ray tomorrow morning then they will discharge Abby from the hospital. She will come back to the apartment and then on Wednesday or Thursday of this week they will remove her Broviac (central) IV line. The Broviac is the last piece of hardware that she needs to have removed before she is completely FREE. The Broviac removal will be an OR procedure, because it has been in for 18 months and will have lots of scar tissue around it. She will not need to be admitted for the procedure, but will be in the OR under anesthesia. Then if everything goes well with the Broviac removal they will send us back to Minnesota on Saturday, August 23rd. Abby will then have her first follow up appointment at the U of M on Monday, August 25th. AND...if Abby is feeling well enough and everything is going great she will be able to start KINDERGARDEN on September 4th. WOW!
I thank you all for your prayers for me and my own recovery. I am very sore today and still taking some serious pain medication. I will not be allowed to pick up anything more than 5 pounds for about 4-6 weeks and I need to take it easy. This is going to be very hard for me with three little girls and the fact that I so badly want to be getting us all back to a normal life. I am just thankful that I did not get even sicker and that the surgery went well. Abby and I will recover together and she is actually delighted that Mommy now has a scar like her. I proudly join the "scar club" for Abby, but Abby is a much braver and stronger person than I am and has endured so much more. I am so proud of her strength and resilience and of what a lovely little girl she is.
I am getting very tired now. It has been a big day for me and for Abby. We will update again tomorrow when Abby is back at the apartment.
Love, Heather
Monday, August 18, 2008 10:59 AM CDT Abby is now getting her heart cath and biopsy. They only wanted her lightly sedated. She has quite a tolerance built up for narcotics, so after trying three different drug protocols, she eventually settled down.
The procedure started at about 9 am and I just go word that things are going well. They will need to place a stint where the superior vena cava connects with her right atrium to increase blood flow. This is something they suspected might be necessary immediately after the transplant, and should not create significant risk. The cardiologist that updated me also mentioned that Abby could be discharged later today if all goes well.
Heather too will be dischared today. Hopefully it will be restful for all of us after a whirling weekend.
Enjoy the collage of pictures above. Abby has been diligently working on her best crazy faces and I did my best to collect some of them.
God Bless - Mark
Sunday, August 17, 2008 Heather is sore and sad, but healing. She’ll be discharged tomorrow. Abby had a really good day. She was a ball of energy and really excited to get a day pass to visit Heather. She was glowing sitting in bed with her mama comparing stories about their scars, IVs and medical procedures in general.
Word is that Abby’s biopsy may now be on Tuesday. I should know with certainty before noon. She’s feeling so good that, in my opinion, the infection explains her lows at the end of last week and there is no fear of rejection. Her right lung is still giving her some trouble and she’s a little pale, but she’s a trooper. She’s really funny when she’s goofing off with the nurses and running around their area. Rather than scold her, I told her to be extra naughty so that we get kicked out of here. She loved this idea and the nurses played along.
My great friend, Joe, drove in from Nashville this morning to be a witness to our chaos and help out. It’s fair to say that he was amazed to how active and energetic Abby was today. When she’s chasing around and asking to play tag, it’s impossible to comprehend what she went through just two weeks ago.
Thank you for all the warm thought and prayers. We know they make a difference. Thank you also to the St. Gerard’s Choir for the generous care package. I put a substantial dent in the pail of cookies in the past two days; they are wonderful.
God Bless - Mark
Saturday, August 16, 2008
Sorry for no update today. Usually, no news is good news, but not today. Abby is doing well and continues to get stronger every day.
Heather is sore, sad and resting in a hospital bed of her own this evening after emergency surgery. She woke this morning with cramps and sharp pains that barely allowed her to walk. By early afternoon she had spent several hours in two different emergency rooms and ultimately learned that one of her Fallopian tubes had been ruptured by an ectopic pregnancy causing internal bleeding. We had no idea that we were expecting and the doctors quickly informed us that the baby would not survive. Heather required an emergency surgery that finished about 7:30 this evening.
She should be discharged some time Monday, but is sure to be sore. She’ll also have lifting restrictions for a month or more, which will make it more difficult to care for girls (for example, Abby can only be scooped up like a baby for a few months).
Heather’s original plan was to “tough it out” until Monday. I’m thankful to God tonight that she didn’t. One of the ER doctors told her that this could have been life threatening to her if she had waited. I’m also thankful to the nurses here and Lyn who made sure that Abby was well cared for and entertained today while I was with Heather.
This is life. And no matter how extreme and fantastic, I’m thankful for it every day.
God Bless - Mark
Friday, August 15, 2008 12:00 PM
They have decided not to do the heart cath and biopsy today. The docs truly feel that Abby is not suffering from rejection, but rather that the fever and low red blood cell count have been caused by the UTI and kidney infection. They are planning to give Abby IV antibiotics over the weekend and make sure that the fever is gone and that she is feeling better. Then they will plan the heart cath and biopsy for Monday. I think I would have felt better if they would have done the cath today, just because we could have ruled out any rejection, but they were not coordinated in the cath lab for doing the stint today, so it is likely that they would have needed two procedures instead of one if she would have gone in today. So, we will make sure that Abby eats well and gets plenty of rest this weekend. You can see in the new picture from today that she is still pale, but she is trying to feel good. She is posing with Lyn, her 3rd grandma, from our apartment building. I sure am worried about my sweet Abby. This bump in the road to recovery was not in my plan. I just hope and pray that she can get through it and that the new heart is not rejecting.
Clare and Eva will be going to Lake Ida near Alexandria today with Grandma and Grandpa Ostlie for a week. They will meet two of Mark's sisters their and their families. I am missing those little girls like crazy and it is hard to be away from them for so long. I am longing for Abby to be well so that we can take her home and hopefully get going with a new "normal" life; for all of us.
9:32 AM
Abby had a hard night. Around 2:00 AM her fever had climbed above 102 degrees. The resident on overnight decided that they should get a blood draw from Abby's arm, just so they could culture it and make sure there is not an infection in Abby's blood that they missed. So, we had to wake her up and stick her arm to get blood in the middle of the night. Then finally by around 3:30 AM the fever broke and she relaxed her breathing somewhat. She then rested more comfortably until morning. We are worried about the infection that it causing the fever, but everyone seems to still think that it is just the UTI that got out of hand.
Abby will have her heart cath and biopsy today. That should help them rule out any rejection that could be causing the fever. At the time of the heart cath they will also decide if her Superior Vena Cava needs a stint put in to hold it open more widely. This will be done during the cath if it is deemed necessary. We are still waiting to hear what time the cath will be. It might be in just an hour or so, or it could get pushed back to this afternoon. We are hoping for this morning, because if she has it this afternoon she can't eat or drink anything until then. That always stinks.
Abby is now sitting up in bed and seems to have a little more color in her face today. Her hemaglobin did come up from yesterday and is now 11, which is the very lowest end of what they consider acceptable for a hemaglobin level. They are not planning on giving her more red blood at this point, but they will consider it if she bleeds much during the heart cath.
Thursday, August 14, 2008 5:10 PM
Abby's hemaglobin level is very low. This is the red blood cells in the body. They will be giving her a transfusion of blood to boost her hemaglobin level. Low hemaglobin explains why she has been so tired and sluggish the last 36 hours and also why her skin tone is slightly yellowish/green. She needs more red blood cells. The cause of the low red blood cells is still under investigation. It may be that her UTI spread to her kidneys and the infection grew, so that decreased the red blood cells. Like I said earlier, they will keep her on IV antibiotics for the next 24 hours to knock out any infection that is brewing. They just came in around 4:45 and did another echo cardiogram. The intensivist, Dr. Sharkey, was in the room for part of the echo and she said the heart looks good, but they wanted some detailed pictures just for comparison and before the heart cath and biopsy tomorrow. The true test for any rejection will be the biopsy. Please pray that the new heart is not rejecting and that is not the source of these problems. We don't know what time the procedure will take place tomorrow, but should have more information later after the doctors finish evening rounds. It is most likely that we will be in the hospital through the weekend.
2:14 PM
Abby has been readmitted to the hospital. She continues to run a fever (around 100 degrees) and just doesn't look or feel very well. Her skin color is kind of yellowish and she aches everywhere. Both Dr. Canter and the transplant coordinator basically took one look at her and knew that she would be readmitted. They will put her on IV antibiotics for the next 24 hours and then see how things are going. Also, Dr. Canter said that they will probably move her heart cath and biopsy to tomorrow. We don't know this for sure, but I think that he would like to take a look at things internally and just rule out that anything is happening with her new heart. He doesn't suspect that anything is going on with the heart, but would like a definite answer. They suspect that her urinary tract infection just got out of hand and it is making her have the fever, but they will do blood work and a urine culture again today to check everything out. Abby is not too happy being back here not even 24 hours after discharge, but we are glad that they will figure things out and get her feeling better. Another bump in the road...ho hum.
Thursday, August 14, 2008 8:59 AM CDT Abby started running a fever during the night. It was around 99.5 to 100 degrees. This is not extremely high, but obviously it is a concern for her because she just had a heart transplant and she is immune supressed. I called the on-call cardiologist around 4:00 AM and let him know that Abby had a fever. He said that unless she was throwing up or having other flu like symtoms we should just wait until morning and talk with the transplant coordinators. So, we go her through the night and then called the transplant coordinator this morning. She will speak with Dr. Canter and they will decide what course of action to take. It is likely that we will make a trip over to the hospital to have some blood drawn and for them to take a look at Abby. Then they can culture the blood to see if there is a new infection brewing. We know that Abby is fighting a UTI, but they have put her on medication for that already. It is hard to not over react to this type of thing, because we just don't want to see any signs of rejection. No one feels that is happening, but we want Abby to feel as good as possible. After we hear the plan of action we will post again.
On Tuesday this week we got to have a day pass to leave the hospital for a few hours with Abby. We took her to Build-A-Bear and she made a tiger stuffed friend. All kids that spend time in the Cardiac ICU here at Children's get a $25 coupon for BAB, because the founders of BAB sponsored the Cardiac ICU when it was built just a few years ago. This was a fun treat. We also stopped and picked up the new Holly Hobbie movie at Target, because Abby loves these movies. It was nice to be away from the hospital for a few hours. Abby did a lot of walking at the mall and she was tuckered out after that.
Well, I just got a call from the transplant coordinator. They want to see Abby in clinic this morning and will do some checks and lab work. We need to be there at 9:45 AM, so it's time to get going. We will update later when we know more.
Please pray that nothing is going on with Abby's new heart and that this temp is just a result of something that we can treat easily.
Wednesday, August 13, 2008 4:33 PM CDT Abby's been discharged.
We'll post some new pictures soon, but she is resting well right now here at our apartment. This is much quicker that we anticipated prior to surgery and we're delighted. She will still need a lot of R-n-R, but it is sure to be easier at the apartment.
Thank you all for your continued prayers. We'll update with more info as time permits.
Tuesday, August 12, 2008 9:53 AM CDT Abby does have a urinary tract infection and her white count is down. Oral antibiotics should take care of this, but they may kick it off with a 24 hour IV med. She is very tired this morning, despite good sleep last night. Perhaps she simply needs the rest. Her rejection meds need to be taken on a fairly strict schedule. Thankfully, she is very good about this and woke up enough to take all of her medicine. Good girl.
Next Monday will be her first biopsy. This was changed for several reasons, but mainly, she is showing no signs of rejection and every indication is that the grafting is working very well.
Before the news of the IV antibiotic, there was discussion about taking her out of the hospital today (either a day pass or discharge). Even a small change of scenery will be good for her spirit whenever it happens. A chance to go to the apartment and relax sounded good to her last night. Maybe there is a way to make this happen, but I expect she could be discharged tomorrow.
God bless you all and thank you for your guestbook entries and prayers (they're working) - Mark
Monday, August 11, 2008 12:51 AM CDT We are still waiting for the doctors to come and tell us the plan for today. The chest x-ray from this morning did look slightly better, but there is still some fluid on the right lung that they are concerned about. Dr. Huddleston, the surgeon, is making a plan for what to do about the fluid issue. Also, this morning Abby's blood draw came back with high white cell count. When she came out of surgery her white cell count was 4, then a few days ago it started to elevate to 15, and now today it is 28. So, she must have some sort of infection somewhere. They did send blood and urine cultures to the lab this morning and will see what the results show. The lab cultures that they did from several days ago were not growing anything, so this even higher elevated white cell count is a mystery of sorts. We hope and pray that they find the source soon and are able to target any infection with antibiotics. It makes us uneasy when we know that an infection may be brewing, because she is on immune suppresion drugs and will not be able to fight infection as efficiently as usual. Please pray for this cause with us. Abby was not feeling so great this morning, but she has perked up now and is eating a chocolate chip cookie and white cheddar cheese puffs. Yummy.
Also, we told you about a little boy namming Manning a few weeks ago. He is one year old and is waiting for a new heart here at the hospital. His condition is worsening and he needs a new heart very soon. Please channel some prayers for Manning and his new heart. You can read about his journey at www.carepages.com, with the key work manningsheart. I know that his family would appreciate the prayers and support very much.
We will keep you updated today as we here more from the doctors about Abby's culture results.
Sunday, August 10, 2008 10:10 PM CDT Abby had a very good and uneventful day. Sundays are usually rather slow around the hospital from a medical standpoint. The doctors are mostly off work on Sunday so things are much more quiet. This morning Oma and Opa left St. Louis to head back to MN. We packed up some things from our apartment here for them to take back to MN. Then Lyn, our friend from the apartments, came to visit Abby in the hospital and have lunch with her. She brought her a beautiful silver sterling necklace with a pink heart that has a cross in it. When Abby's chest is healed she will enjoy wearing it very much. Thank you Lyn. After lunch Abby took a really long 3 hour nap. We actually had to wake her up from her nap. Then after she woke up she wanted to go walking. She walked all the way around the unit on her floor and to the elevator, she rode the elevator upstairs and then out to the beautiful garden they have here. The garden has wonderful fountains and a stream and stepping stones. She was literally trying to run around the garden, because she was just so happy. She was really tired when we came back to her room, but it was so nice to see her having lots of energy.
The plan for her care is to take an x-ray of her chest tomorrow morning to see how her lung looks and how the fluid is doing. Dr. Canter says that if the fluid is not increasing and the lung looks at least ok, he will maybe send up back to our apartment for the next week and then we will come back to the hospital around the 16th for her biopsy and to check the lung and fluid in her right chest. That would be so exciting if we could be discharged for the next week. We will see what the x-ray shows in the morning and then update everyone.
Abby and I are both getting sleepy now, so I am going to sign off for the night. Please remember that no news is good news. If we don't get the journal updated as often it is just because Abby is feeling good and we are out and about with her.
Thank you for praying for a swift recovery and soon return to MN.
Saturday, August 9, 2008 3:12 PM CDT It’s been a busy day, but Abby is feeling much better today and is not running any temp, etc.. We’re still waiting for definitive lab results, but no one suspects any infection at this point. She had a good rest last night. Monday she will have a heart cath and biopsy. During that procedure they may need to evacuate another pocket of fluid. If that is the case, she’ll need another chest tube for a few days.
This morning Clare came for a visit before she and Eva left for Minnesota with Grandma and Grandpa. They were excited for the trip until it was actually time to leave. They will have great fun at the farm until for the next week or so.
Abby’s last chest tube was producing very little, so it came out this morning. This was the first time I was present for an event like this. I couldn’t believe how long the tube was in her chest. It’s no wonder that she was uncomfortable. It was no fun for her to get this out, but she felt better almost immediately. Since then, Heather, Oma and Opa all washed up, including her hair. She looks and smells delicious.
God Bless you all - Mark
Friday, August 8, 2008 3:50 PM
It has been a busy day here at the hospital. Abby had a CT scan of her chest where they inject contrast into her system to look for any concerning areas. She did really well through the procedure. They already have the scan back, but they are waiting for the radiologist to read the results before they give us any definite findings. They did a blood draw by sticking her arm so that they get a "clean" draw. That was not fun, but we want to be sure that they are checking her blood for any infections that could be brewing. They also drew blood again from her Broviac line; just to culture that and make sure that there is not a line infection. Man it sure would stink if her Broviac had an infection now after going almost 18 months and never having an infection. They should get these blood results back within a few hours. Dr. Canter, the cardiologist, will be around this afternoon and he and his team will have a pow-wow to discuss the findings and make a plan for treatment, if a new plan is warranted. Mark and Abby are both taking a nap right now, to try and recover from the long night they had. Abby seems to be more comfortable now, although she is on Oxicodon (sp?) which is a narcotic for pain and Tylenol. We will update again after we speak with the doctors and have some results from the tests today.
Also, just to note, we may be leaving the hospital as early as Monday...if everything goes very well. We will then be back in our St. Louis apartment for at least one more week and then back to the hospital for another biopsy. This is just a very tentative plan at this point. If you are sending something to Abby, you may want to send it to our apartment, because then we will for sure receive it. The apartment address is:
4615 Lindell Blvd. #801
St. Louis, MO 63108
11 am
Abby had a rough night. She wasn't comfortable and finally fell asleep for about 2 am for a few hours. Her temp is up and her white blood cell count is up more than 3x from yesterday. She also had short shallow breathing throughout the night and so had an xray just before midnight, but nothing new was found.
The Docs are concerned that something might be brewing, so she'll have quite a few tests today. She's more comfortable now and resting lightly, opening her eyes every couple minutes.
Hopefully, we'll have good news this afternoon.
God Bless - Mark
Thursday, August 7 5:30 pm
Abby took a little walk this afternoon both with and without help.
Monday will be her first biopsy to rule out any rejection. As early as early as Tuesday, she could be out of the hospital and back to the apartment. This sounds very quick, but she's doing exceptionally well. The following week she'll have another biopsy in St. Louis. After that we'd love to be recovering in Minnesota. We'll see. . .
2:30 PM
Abby is taking a nice nap now. She had a very busy and exhausting morning. She woke up early around 6:00 AM and then she went back to sleep about an hour later and slept until almost 9:00 AM. She felt good when she woke up, but shortly after that the nurse came in and drained her chest tubes, which is very painful. She didn't feel well after that. Then she ate a little bit of breakfast and it was time to remove two more of the chest tubes. This is obviously painful because they are going into holes in her chest with stitches holding them in place. So, they remove the stitches and then just pull the chest tubes out. Ouch! I was in the room when they did this, because Abby really wanted me to hold her hands. I got to have my first look at her incision, and it looks really good. The skin just has small steri-strips (like tiny band-aids) holding it together and they will eventually fall off as she heals. Inside her chest there is surgical wire holding her chest bone together as it heals. This is all an amazing process and we are so proud of Abby for being such a brave girl through it all. Someday she will understand just how amazing she is for going through all of this with relatively little complaint.
We are hoping that Abby's last chest tube will be removed tomorrow. That will make her much more comfortable. We are planning to have her walk around some this afternoon. It may be painful at first to start this process of walking again, but we don't want her to lose muscle tone because she is in bed so much. Later we should have some pictures of Abby on her feet to post on the website.
9:51 AM
Good morning. Sorry for the lack of update yesterday afternoon.
Abby moved to the stepdown unit at about 3pm yesterday and is doing well. She walked/waddled into the room with help. She's still feeling pretty rough, but has her happy moments. Grandma and Grandpa arrived in the afternoon and Clare is visiting for just a few minutes this morning; she mustered a smiles for everyone.
Her appetite is coming back slowly, but it's hard for her to eat very much. Two more chest tubes will come out today. Despite the fact that she'll be pretty sore, we'll need to get her on her feet more to help her lung expand.
One of the highlights of last night was when Oma, Mama, Papa and Nurse Grace all danced around her bed to Stevie Wonder's "Isn't She Lovely". She did her best to be grumpy during the whole affair, but a few smiles did sneek out.
God Bless
Wednesday, August 6, 2008 12 pm
I just wanted to add this new picture from this morning. She looks really good. I love those ruby lips.
You may have noticed that Abby had an amazingly upbeat picture toward the end of the Fox 9 story last night. Just to clarify, that was in pre-op. She was very excited to be going to get her new heart; it's fair to say that she didn't entirely know what she was in for and we didn't want to scare her.
Rick Ankiel (#24 for the St. Louis Cardinals) and his wife just stopped by with an autograph and stuffed clydesdale. Abby is sleeping, but it is really nice for the kids on this floor to get visits like this.
10 am
See my previous journal for getting up to speed with today's plan for Abby.
They were able to remove two IV lines, the catheter, and one of the chest tubes. They were planning to remove two chest tubes, but there was some confusion and apparently the tubes were mislabeled at some point during the night, so they only took one out. That leaves two tubes draining from her right side and one from her left side. It is likely that two more will come out tomorrow. Abby tolerated the procedure alright. She was crying a lot and singing about "I hope my mom is here and that she loves me". I was asked to just step out of the room while they worked and Abby was given some pain drugs that made her a little out of it. They said it was so cute the way she kept singing to not think about the pain. That is our Abby girl...singing through it all.
Now Abby is resting well and I bet that she will sleep for awhile. She ate 3 bites of sausage, 2 cheetos, and had a few sips of lemonade before she fell asleep.
Tuesday, August 5, 2008 10:24 PM CDT Entry from Wednesday, Aug 6 7:25 AM
Well here is the plan for today. They will be taking two of Abby's four chest tubes out this morning. The chest tubes are very uncomfortable, so she will be glad to have several come out. Actually, she will not be happy when they are coming out, because that part will hurt, but after they come out she will feel much better. They are also going to remove the arterial line in her hand, so both hands will be free. They will take out the central IV line near her neck. They will remove her catheter. So, all of these things being taken away will mean that she will have NO IV POLL! She will still have her Broviac line in her chest and two chest tubes for drainage. It is our job today to help her sit up and move around more to get her right lung to expand. This mornings x-ray showed that her lung was still collapsed. She will feel much better when that lung expands again. We may even try letting her stand on her feel a little bit today. Probably a nice sponge bath and hair was will also be in order. She was much more coherant when she awoke during the night. Around 5 AM this morning she ate half a bowl of Cinnamon Toast Crunch. For those General Mills employees checking on Abby...don't worry we won't let them feed her any Kellogg's cereal!
Entry from Tuesday, Aug 5 10:24 PM
If you missed Abby's follow-up story on Fox 9 News tonight, cut and paste the link below into your web browser to watch it online.
Thanks to Ellen Galles and the Fox 9 team for following Abby's story and letting all the MN viewers hear the great news that Abby got her perfect new heart.
http://www.myfoxtwincities.com/myfox/MyFox/pages/sidebar_video.jsp?contentId=7144001&version=1&locale=EN-US
Abby is resting well right now. She has only had Tylenol for pain today. Tomorrow we will get her out of bed and standing on her feet. We will also be most likely moving to the step-down unit at some point tomorrow. The doctors will evaluate everything when they round in the morning. I am going to sleep here at the hospital with Abby tonight, so that if she wakes up here mama will be able to provide some comfort.
Clare and Eva got a very special treat today. Lyn and Erin who manage the apartment building we are living in planned a special pool party lunch for the girls. They set up a kiddy pool in the ballroom room and had helium balloons, beach balls, towels, sand toys and a nice lunch for the girls and Oma. The girls were thrilled and they had so much fun swimming in their own indoor pool. I know that Lyn and Erin are thinking just like I do, that Clare and Eva need some special attention right now while Mark and I are spending so much time at the hospital with Abby. Lyn and Erin - you are the best! God lead us literally to your doorstep and you have become like family. Thank you!
Mark's parents will be driving into town tomorrow. They are planning on spending a few days in St. Louis to see Abby and then they will drive Clare and Eva back home with them. Clare and Eva will probably stay with them at the farm until Abby comes back to Minnesota, which the doctors are telling us might not be very long. It is crazy! Sometimes it is hard to believe that we are actually POST transplant. We know that the road ahead will probably have a few bumps now and then, but it sure feels great to have jumped over the biggest hurdle standing between Abby and a normal life.
Thanks again for all your prayers.
Tomorrow I will post the hospital address and Abby's room number so that people can send get well wishes if they want.
Good night!
Tuesday, August 5, 2008 5 pm
Abby has been resting most of the day and, thankfully, more fluid has come out of her new chest tube.
Fox 9 did a quick phone interview with Heather today and will be airing a "congratulations" at 9:18 pm on channel 9 in Minneapolis, or streaming on the web at http://www.myfoxtwincities.com/myfox/
If she tolerates the activity, she may be prompted to stand tomorrow.
God bless
2:30 PM
Abby woke up and she had some really hard coughs. They hurt her chest, but it was easy to hear that she was getting rid of junk that was sitting in her upper airway. Then after she had all those hard coughs the nurse aspirated the new chest tube and got 54 mls out of it. That is awesome. It made a big difference in her O2 levels, as she is now back in the high 90s and I think she is resting more comfortably as well. Also, before she fell back asleep she ate 1/3 of a hotdog and 2 bits of orange popsickle. She is a good girl.
1:30 PM
Well, the doctors ordered an ultrasound on Abby's right side of her chest to see if that would show the problem. What they saw is that Abby has a colapsed right lung. There is not much that can really be done by the doctors to expand the lung, Abby needs to just sit up the best she can and take really deep breaths and have good coughs. The problem is that this type of deep breathing will most likely hurt because her chest is so tender still. Ideally they said that it would really help if she could just get up and walk around, but she is not quite ready for that yet. So, they are also ordering a blowing device that Abby will blow into and try to make the bubbles go up in the tube. This should help her expand the lung also.
9:45 AM
Abby tolerated the procedure to place the new "pigtail" chest tube just fine. They were able to drain about 35 mls of fluid off her right side, however the x-ray after placement of the new chest tube did not show a lot of improvement. They think that probably they did not fully access the area where the fluid is pooled. They will continue to aspirate the line (try to draw fluid from it) every two hours. If they don't get much from the new chest tube they may start some therapy to pat her chest and try to break apart the fluid that is stuck there so that it can release out of the chest tube. Please pray for the fluid to release as it will make her feel more comfortable and her breathing to ease.
They had to give her a lot of sedation to get her to sleep for the procedure, so now they are not going to allow her to eat anything for the next 4 hours. We are hoping that she sleeps most of this time so that she does not feel hungry and beg for food when we can't give her any. Please also pray for healing rest during this time.
7:46 AM
Good morning Abby fans!
Let me begin by saying that everyone here thinks Abby is doing just fabulous. The doctors are very pleased with her recovery progress. There is one main issue that they will address this morning. Her chest x-ray shows that the hematoma (collection of blood) in her right plural space (the area between the chest wall and lung) has gotten worse over the past 24 hours. They were hoping yesterday that this hematoma would go away on its own, but it seems that will not happen. So, they are going to insert a small chest tube, called a pigtail, into her right side this morning to drain the blood/fluid out of her plural space. This is not a new procedure to us as Abby has had this same issue in the past after surgery. The hematoma developed because she experienced so much bleeding after surgery. She will feel much better and breathe easier after the blood is drained. They are planning this procedure for around 9:00 AM. The doctor performs the procedure at the bedside and it usually takes about 30 minutes.
Otherwise here is the update on her progress:
The Dopamine was turned off completely yesterday.
The Milrinone was weaned down over night is now at a rate of only 0.25 mgs/kg/min and will be turned off completely later this morning.
She is breathing room air with only the help of a little blow-by O2 support (meaning a tube that blows oxygenated air at her face).
She has been approved to eat and drink what she wants. Last night she had a bite of buttered noodles and a bit of hot dog, but then feel asleep with the fork in her hand.
Both of the peripheral IV lines in her hands gave out last night, so they were removed. She now has one free hand and one hand still has an arterial line in it.
Her chest tubes have very minimal drainage and at least two of the three tubes will likely be removed tomorrow.
The pacemaker wires were turned off early yesterday and her new heart has held a very steady rhythm on its own since that time.
She is puffy today, especially in her hands and feet, and her urine output slowed down overnight, but the blood lab results show that her kidneys are doing just fine and so the doctors will keep her on Lasix as a diuretic and feel that when she begins moving more the urine output will pick up again.
Her INR (clotting factor) went back up again, most likely because of her long history of being on the blood thinner Coumadin, so she is receiving more plasma this morning to help with her clotting factor.
She is very angry at us this morning because she can't have food until after the new chest tube is placed this morning. But, she is also very sleepy so we are trying to just let her keep resting until the procedure is finished.
We are very pleased with her progress and so are the doctors. She is doing great! The recovery battle will continue here today and we will keep you posted on changed and progress throughout the day.
Thanks for all you wonderful prayers and support. We know that it is making a difference in Abby's recovery process.
Monday, August 4, 2008 3:20 pm
Abby got to have a second apple juice and some sips of chicken broth. She enjoys every drink that she gets right now. She is still asking for food, but she is not awake enough to really chew and eat without risking that she could choke, because she is still not fully with it. She is experiencing some pain right now so the nurse just gave her some morphine for the pain. That should help her relax and then hopefully she will sleep for a few hours. She isn't up very much today, but the time that she is up is hard on her, so we do want her to rest comfortably.
Mark just went back to the apartment to spend some time with Clare and Eva and Oma is going to come over to the hospital to see Abby. Our plan is that if Abby wakes up we will wash her hair and try to get the dried blood out of her hair. The long pigtails in her hair are already getting nappy and tangled, so I will try to brush through it and then wash it. That will make her feel better. When she was first awake today without the breathing tube she asked me if she could have a shower. Not yet sweet girl, not yet.
2:40 pm
I can't resist posting the new picture above. She so desperately wanted to smile.
She's slowly eating ice chips and drinking sips of apple juice. None of this is coming fast enough for her and she wants to do everything herself even though her hands are both wrapped. We have to be cautious about too much too soon. She sat up twice now and then decided laying was much more comfortable.
The pacemaker is now off and she's holding her own.
8:50 am
We can now hear her squeaky, demanding voice. It's beautiful. She's mostly grouchy, as expected, but she's managed a few smiles too. It's very difficult to understand anything she's trying to say, so we're encouraging her to stay quiet so she doesn't get to frustrated and stressed. I just got the best mean face, bared teeth and all, when I told her to be still.
Thank God she's feisty; trying to sit up and move around to itch herself. No one wants her to actually move too much, but the desire and strength are great signs. Heather asked her:
* do you know you're in the hospital? - yes
* do you have any ouchies? - no
* do you know that you have your new heart? - her eyes said it all, both suprise and disbelief. She tried to sit up to look at her own chest.
We're feeling great this morning as she's now breathing on her own. Her heart is still being paced, but it sounds like a precautionary measure. Newly transplanted hearts are stiff and so they see pressures fluctuate a lot when she gets stressed.
We'll do our best to keep her calm.
Thanks for checking on her.
God Bless
7:30 am
Good morning everyone,
The night went very well. Abby's bleeding reduced significantly overnight. There is still about 35 mls of blood draining from one chest tube every few hours, but it does not seem of concern to the docs here. I just listened in on rounds and they are planning to turn off the sedation meds now and get her EXTUBATED! Hooray! She was up during the night some and telling me that she wanted a drink and that she was hungry. She also wanted me to itch her nose and arms. She is peeing like crazy, with just the help of a little lasix, it is amazing what a fully functioning heart does for blood profusion to the kidneys. The puffiness in her face is gone this morning, which is also a great sign of recovery. The new heart is working really well and everyone tells me that it is "a great heart". We are so thankful! Her color is awesome and for the first time in her life she has fully pink feet and hands. WOW, what an amazing 24 hours this has been for her.
We know that the journey is not nearly over, and she will be sore and cranky when she wakes up, however this it is so thrilling to know that she has a new start to life and will someday just be functioning like every other kid.
Thank you all so much for you wonderful guestbook entries. We read them all often and they help us feel connected to all of you. The prayers are working, so please keep them coming. Pray for a smooth extubation this morning. One awesome guestbook entry was from a woman in Kansas City, MO that found one of Abby's birthday balloons. Can you believe that they made it all the was to Kansas City, how fabulous!
We will update again post extubation.
Sunday, August 3, 2008 6:15 PM
The paralyzing drug has worn off and Abby was starting to open her eyes and move around quite a bit. More than they want her too, so they just gave her some more sedation (not more of the paralitic). Before the sedation took affect she looked at me and even with the breathing tube in her mouth I could tell that she said "hold me" and she was trying to pick up her arms. They will put her hands in restraints, just soft child ones, that will keep her from picking up her arms and damaging one of the IV lines that she has. The bleeding is still moderate, but slowing. We are hoping to see great improvement with the bleeding overnight. She has started to pee and there is no more blood in the urine. These are really good signs. They did put one stitch in her right arm near the site of one IV to help stop the oozing of blood, and it worked, so this was a good decision. Overall, she has many stick marks and IV lines. She will be bruised and sore from head to foot as she recovers, but we are thankful for the chance to have a recovery.
Some of you have inquired about sending things to the hospital for Abby. At this time her room is pretty full with equipment and there is not a lot of room for anything extra. Once Abby is awake we will post a hospital address and room number for those of you who would like to send a "get well" wish.
4 PM
About 6 PM they'll start reducing the paralyzing drug to allow her some small movements, but they'll still keep her heavily sedated. Stillness has been important while they were trying to get her bleeding under control, but now they'd like her to start making little movements in order to help get rid of some fluid (pee).
Many of you are familiar with how Abby has held onto fluid after her other surgeries. It looks like this will be no exception. Her kidneys are working well, but they simply have a lot to process given all of the intravenous fluids she's been given in the last 24 hours.
It looks like she will be heavily sedated and have the ventilator breathing for her at least until Tuesday morning.
I may post a picture, but be aware that it is an unedited snapshot of reality. If you have little ones, please review before sharing.
2 pm
Abby is stabilizing well. She is losing blood at much slower rate; 35 mls/hr vs. 150 mls/hr this morning. Her urine is slowing turning clearer from a redish/pink. In simple terms, she lost about 2/3rds of her blood this morning, which had to be replaced. On this front she is doing much better.
Her heart is being paced electronically to keep a good blood pressure. All in all she's doing about as well as expected and getting lots of attention from a great staff.
9:30 am
We have finally been able to see Abby. She has 5 IV lines, 2 in one wrist, one in her other wrist, one in her neck and still has her central Broviac line. She has 3 chest tubes that are draining fluid and blood. She is intubated, so she has the breathing tube in her mouth/throat. She has a tube in her nose to draw air out of her tummy and so that the nurses can give oral medications. She has external pace maker wires, which are currently helping to keep her new heart on a regular rhythm. She has a catheter to drain pee and which is also currently also draining blood. She is receiving many IV blood products and she is on Dopamine and Milrinone to help her heart get used to being in a new body. She is also getting a drug to keep her motionless, a drug for pain, and a drug so she won't remember any of this. Lots of stuff. She is puffy in her face from the surgery, which we have experienced many times before. Even though we have done this 3 times in the past, it is still very difficult to see our baby girl like this.
The main concern right now is the bleeding. She is bleeding quite a lot; it is oozing from her IV sites as well as draining from all of her chest tubes and in her urine. The bleeding is caused by a few factors, first the trauma of such an invasive surgery and also the fact that she was on a blood thinning drug prior to surgery. They are giving her lots of help to get her blood to clot properly and get the bleeding to slow down and stop. We have been told that this is not uncommon after surgery, especially for a child that has been through many previous open heart surgeries. They are looking for the bleeding to trend downward today, and just move in the right direction, so please pray for the bleeding to slow and stop. If the bleeding gets worse or does not slow then they may need to open her chest again and look for any vessels that are causing the problem and need to be cauterized.
Mark and Oma just went back to the apartment to see Clare and Eva and to give Lyn and Erin relief. They are both going to shower and try to take turns getting some sleep. Then when they are clean and rested Mark will come back to give me a break to do the same thing. At this point they are not planning to extubate her today. They need to get the bleeding under control and keep her still and pain free today.
Like I said in my previous journal, Abby is very delicate right now. Her body has been through a major trauma and the new heart is in shock and needs to get used to being in Abby's body. Please pray that things continue to trend in the right direction and that we see improvements throughout the day.
Our journey is far from over, please stay tuned and continue to pray for Abby.
Sunday, August 3, 2008 5:45 AM CDT The surgery is complete!!!
We just finished speaking with Dr. Huddleston, who did the surgery. We thank God for his skilled hands and the competent staff in the OR. He said that things went very well. The crossmatch between Abby's blood and the donor's blood was negative, which means that there will be no extra risk of rejection of the new heart. This is a very good thing and it means that they will just put her on the normal course of anti-rejection medications. The surgery took a bit longer because there were several bleeding vessels that they needed to take care of. Over the course of Abby's life her body has grown extra vessels to supply oxygen to her lungs and compensate for her weak heart, so these create a more complicated surgical procedure. The docs will keep a close eye on her bleeding (via the chest tubes) but they are not anticipating any problems.
Coming out of surgery she will just have one IV medication, Dopamine. They are hoping that she may be able to get off the breathing machine even later today, if things look good with the bleeding etc. Then after she is off the breathing machine they will wean down the Dopamine and eventually just have her on oral medications. She will also be getting sedation today and diuretics starting tomorrow, which will help with the puffiness from extra fluid patients experience after heart surgery. This is an absolutely amazing surgery. We are so thankful that a very unselfish family shared the gift of life with our daughter. Abby has a very special angel in heaven that will forever be a part of her. Thank you God.
We will be able to see Abby in about an hour. I have pictures to post from pre-surgery and I will also take post-surgery pictures to put on the website. I forgot my camera cord at the apartment, so sometime when I have a chance to get it I will post the pictures.
Thank you to Lyn and Erin for taking care of Clare and Eva last night and sleeping over with them so that Oma could be at the hospital with me while Mark was still driving back here and so she could be with us through the night. Lyn and Erin have become like family to us and we are so thankful for good people like them who give themselves so kindly to help us in a time of need.
We are all tired here. Not much sleep during the night. I think that we all got a few restless naps in while we waited, but our energy is on a low. Please raise us up in prayer and help give us strength to be strong through the coming days of recovery. We need to be strong to help Abby be strong.
We talked with Abby many times about how she will feel when she wakes up from surgery, but she will still feel like she got hit by a bus and things will be sore and scary for her. We need to be her source of calm, peace and comfort. It is so good to say that we are no longer waiting, but that we are now on a road to recovery. Thank God for this fresh start and new beginning.
We will update more after we see her.
Sunday, August 3, 2008 4:07 AM CDT We were just informed a few minutes ago that Abby is off the heart/lung by-pass machine and the new heart is pumping on its own. They are now taking care of some bleeding that was happening in her chest cavity and then they will begin to close her chest. It will still be several hours before we will see her, but they have told us that she is in stable condition at this point. She is very vulnerable at this point, because the new heart is delicate and she has gone through a great trauma, but everyone seems positive. We are now waiting to talk with the surgeon when he is done closing her chest. Keep the prayers coming there is still much to be done.
Sunday, August 3, 2008 1:50 AM
Abby's old heart is out and they are now sewing in the new. This may take some time and then comes a tricky transition off the bypass and onto the new heart. We'll update again when we have more news.
12:37 AM
The nurse, Jeanne, just came back to let us know that Abby's new heart is here and they are starting to take Abby's heart out and begin replacing it with her new heart. It is really happening. This is Abby's chance at a new and full life and we praise God for this wonderful opportunity. Abby is on the heart lung by-pass machine right now and there is still a long way to go...keep praying.
Saturday, August 2, 2008 11:40 PM CDT We just got a phone update from one of the nurses in the OR. They began Abby's procedure at 11:20 PM (meaning that they made the incision). Prior to making the incision they were able to get all of the IV lines in place that they needed. The heart is not yet here, but is on its way. They will plan the timing so that Abby is ready to receive the new heart just when it gets here. So far everything is going well. Please continue your wonderful prayers.
Also, please pray for the family who is mourning the loss of their child tonight and who was generous enough to donate organs and life to other children. For that we are forever grateful and we pray for that family to have peace.
We will probably not have another update until sometime after 1:00 AM.
Saturday, August 2, 2008 10:04 PM CDT Our sweet Abby Leigh was taken into the OR at 9:50 PM. They were slightly delayed in getting her into the OR, but that was actually a good thing because Mark made it back here in time to hold her and kiss her in person before surgery. Mark said that he physically leaned through the mile markers as he drove back toward St. Louis. We are all so happy that he made it back in time.
Abby was such a good girl while she was waiting for them to take her to the OR. Her Broviac line was not drawing blood anymore (after 17 months) so they ended up having to stick her twice to draw blood. That was not a fun process at all and she cried a lot. After that she calmed down and was mostly just begging for food, because they wouldn't let her eat or drink anything before surgery. We watched some movies and just held each other. It was a nice time before surgery. Then they brought us down to the outer surgical area and they gave her some "feel good" drugs that made her sort of sleepy and goofy. She was not totally sleeping when they took her from my arms, but she was loopy enough that she just smiled at us and said "night night". We are very happy that she will recieve a new heart tonight, but it was so hard to give her up so they could take her into the OR.
Now they will spend an hour or so just putting in IV lines and getting everything prepped for surgery and then they will begin. So we estimate that they may begin the actually incision around 11:00 PM. They are telling us that it will be a 6-7 hour surgery. So, we should have a full update by morning, for those of you that are ready to hit the hay. Otherwise, stay tuned and we will have more updates as we receive them.
Thank you all so much for the prayers and good wishes. We are so thankful for all of them.
Saturday, August 2, 2008 4:52 PM CDT Here we go...again.
Yes, we just GOT THE CALL!!!!
I was actually downstairs folding laundry of all things and then they called Mark and he called me back. He was driving home to MN, so he turned around and is on his way back down. He was near Waterloo, IA when he turned around. Abby and I need to be at the hospital by 5:30 PM, and they are estimating that surgery will be at 8:45 PM. Mark is hoping that surgery is a little late and that he will be here before she goes into the surgery. However, he and Abby had a long talk this morning before he left and she knew that he might not be here when the call came. We are a little in shock. Just wasn't expecting it to come today. So, here we go. Please get the prayers going. This will hopefully be the real deal and not a dry run. We are so thrilled. Pray that this is the perfect heart and that surgery goes well. We will take the computer with us and keep everyone updated as things progress.
Love to all.
Pray like crazy!!!
Saturday, July 26, 2008 11:57 AM CDT Happy Birthday to our sweet Abby Leigh!
She is 5 years old today. We are so thankful to have had these 5 wonderful years with her and we look forward to many more happy and peaceful years in the future.
Today we took Abby, Clare and Eva along with their cousins Emma and Nora to the Build-A-Bear Workshop here in St. Louis. Abby didn't feel the best, but she tried to have fun and she was proud of the bunny that she made and the wedding dress that she picked for it to wear. The girls all got special wish hearts to put into Abby's bunny...and I think they all wished for Abby to get her new heart. We all have that constant wish. We are planning to try and eat out this afternoon at a fun eatery called Fitz's that brews root beer. Then tonight we may just go back to the hotel where Abby's cousins are staying and hang out by the pool.
Yesterday the kind and generous employees (that have become like our family away from home) of our apartment building gave Abby the most amazing surprise birthday party. They held it in the ballroom of the adjacent building to ours. They had over 100 helium balloons dangling from the ceiling and princess everything! It was awesome. The cake was delicious and they even had a blow up pricess castle and bubble machine. It was like a fairytale; probably better than anything Disney could offer! Abby got to open wonderful presents and then break a pinata filled with candy and other surprises. There were even special gifts for Clare, Eva, Emma and Nora. At the end of the party we attached little notes to the strings of the helium balloons and went outside to release them into the air. It was a beautiful moment for all of us. We'll see if anyone logs onto Abby's website because they found one of her birthday balloons. Special thanks to Lyn and Erin who masterminded the surprise party and to everyone who worked so hard to make Abby's 5th birthday unforgettable. Thank you!
I have great pictures from yesterday and today, so I will post them when more time allows.
Thank you to our wonderful friends and family who have called today to wish Abby a Happy Birthday and to those who have sent gifts for her birthday. This is a very special birthday for her and you have helped make it so.
Holly - Abby opened the Holly Hobbie costume that you sent and she LOVES it! It is adorable...it even has a wig. I have great pictures of her in it, and will post those later also.
Love to all,
Heather, Mark, Abby, Clare and Eva
Monday, July 21, 2008 9:27 AM CDT Good Monday morning to everyone!
It seems that I just didn't have the energy to update the journal last week. Sometimes when you are living the day to day drama it's just too much to try and write about it all at the end of the day.
Abby had a great week. She and I both had a wonderful time while Oma was here. Oma took a flight back to Minneapolis on Friday. It was nice to have another adult here to talk with in the evenings and Abby had so much fun getting Oma's undivided attention for almost a whole week. We did lots of coloring and reading, watched a few movies, and even took Oma out for dinner a few times. We were sad to see her go.
This weekend Abby and I didn't do too much. The temperature has been in the high 90s for the past week and the hot weather is really hard on Abby. We did some great art projects and jewelry making this weekend. Yesterday, Lyn, who is the apartment manager in our building, took Abby and I out for dinner and then came back to the apartment for some play time before bed. She has become like a third Grandma to Abby. She and Abby have a great bond and we are so lucky to have met her here in St. Louis. We have already met so many kind and loving people here on our journey, and we are very thankful for that.
Mark took Clare and Eva up to his folk’s place on Lake Ida near Alexandria this weekend. They had a rainy Saturday, but lots of fun in spite of the weather. He is enjoying his time with them very much. He is also working hard to keep up with everything at General Mills during this difficult time for our family. It is a lot for him to balance and he is doing a fantastic job.
Abby will be celebrating her 5th birthday on Saturday, July 26th. Mark, Clare and Eva will be flying down with Mark's Aunt LuAnn on Thursday and Grandma and Grandpa Ostlie, Aunt Pam and Cousins Emma and Nora will be driving into town on Thursday also. They will all be in town for the weekend to help Abby celebrate her birthday. It has been almost 6 weeks since Abby saw her sisters and she is counting down the days until they arrive. Abby told me, "When I see Clare I am going to run to her and scoop her up and swirl her around." They will have so much fun together. Of course we are all praying that Abby gets the best birthday present possible, a new heart.
I haven't slept well at all since our "dry run". I think that it is a combination of Mark not being here and also just thinking that I hear ringing or am missing a call. We just want Abby to get the perfect heart while she is strong and healthy. I know that we will handle "the call" just fine whenever it comes, but it would be so nice if Mark and I could be here together.
Abby is feeling really good these days, and for this we are so very thankful.
Please pray for a little boy that we met at the hospital who is also awaiting the gift of a new heart. He just turned one year old yesterday and he is in desperate need of a new heart. His name is Manning. You can read about him and his journey by going to www.carepages.com and using the keyword manningsheart.
Thank you for continuing this journey with us. We are thankful each day for our wonderful family and friends and all the prayer warriors that lift Abby up in prayer each day. We believe that the perfect heart and new start to life is very near for our dear Abby.
Love, Heather
Monday, July 14, 2008 6:51 AM CDT Well, for those of you just checking the website for the first time after the weekend, we had a very exciting and disappointing Sunday. At 6:30 AM yesterday morning the phone rang and it was one of the transplant coordinators from SLCH. She said that they had a "potential" heart for Abby. We were so excited. Mark and I were both here and Oma too. It was perfect timing. We got to the hospital around 8:00 AM and they started all the prep and tests for Abby. We were told that the OR time would be about 12:30 or 1:00 PM. Then just a little before noon the surgeon and cardiologist came in and informed us that the heart was not good. It was damaged and they would not take a risk with Abby by using the damaged heart. So, we experienced what is called a "dry run" in the transplant world. This was so disappointing. Obviously, we are happy that they will not take risks with Abby and it was not meant to be her heart. All the same, we felt so sure when the call came that God had planned it perfectly so that Mark and I would both be here and that it was her time to get a new heart. I guess that God has a different plan and we sure hope that it is revealed soon.
We thank you all for your prayers and support yesterday. We were all wiped out coming home from the hospital. I think that everyone was running on pure adrenaline and then it was like the air got let out of the balloon. Even Abby told Mark last night that she thought her wish was going to come true yesterday and she wondered if she would ever get a new heart. It is hard for an almost 5 year old to understand, especially when we were all so excited.
I took Mark to the airport around 5:15 AM this morning and he is currently flying back to MN. He will go to work today and then see Clare and Eva after work. His sister Pam will be spending the day with Clare and Eva at our house. Thanks Pam! He felt bittersweet emotions in leaving us here in St. Louis. Now he feels almost certain that the call will come and he will not be here. It is a terrible feeling. We don't have any firm plans for when he will return to St. Louis. Tentatively, we are thinking of bringing Clare and Eva down for Abby's birthday (July 26th) if Abby has not yet received a new heart.
Last week when I was in MN, I took Clare and Eva up to Gull Lake for my family's annual summer vacation. Oma and Opa and my brother and his family were there and we all had a great time together. It was wonderful to spend a week with Clare and Eva having fun in the sun and water. They are such great girls and it was very difficult to leave them and come back to St. Louis. Having my family in two different locations is not fun at all.
Well, we continue to wait and have faith that Abby will get a perfect new heart just when she is supposed to.
Happy Monday. Love, Heather
Sunday, July 13, 2008 11:47 AM CDT We have sad news. No new heart today. The heart was very damaged and they are not willing to take a risk and give Abby a poorly functioning heart. This type of "dry run" does not happened very often, but we certainly want to get an excellent heart for Abby. This was not it. We are very sad. But, we must move forward and know that the right heart is coming.
Ironically, the heart that was discussed today was from Minneapolis.
Thank you for praying and checking on us so diligently. Pray that the perfect heart is coming.
Tears...
Sunday, July 13, 2008 10:27 AM CDT 11 am update
The docs performed a virtual crossmatch with the donor's blood and Abby's. It was negative, which is good and indicates a lower chance for rejection.
*************************
The estimated OR (operating room) time is between 12:30 and 1:00 PM this afternoon. Right now we are just hanging out. They have taken blood samples, throat swab, peed in a cup, chest x-ray. She can't eat or drink anything now, which is really hard. She is very hungry and just keeps asking for food, but she can't have anything before surgery. They have told us that the heart is about 1.5 hours away. One of the surgeons, Dr. Huddleston, will be flying to look at the new heart and determine if everything is a green light. Then he will fly back with the heart and Dr. Ghandi, the other surgeon, will be prepping Abby in the OR. Once Dr. Huddleston calls and gives the final green light then Dr. Ghandi will go ahead and make the incision. They have told us to expect Abby to be in the OR for at least 5 to 7 hours. It will be a long day, but such a good one.
Abby talked to Clare this morning and she said "Hi Clare, I am going to get my new heart today, what are you going to do?" Love it!
Keep praying, pray, pray, pray.
We will probably update again when she is in the OR.
Sunday, July 13, 2008 6:50 AM CDT God is great and he works miracles.
Today is the day!
We just got the call!
Abby is going to get her new heart today!
The transplant coordinator called at 6:30 AM and said "Hi Heather, this is Peggy, we have a potential heart for Abby."
She said potential because they are sending a surgeon to go and look at the organ and make sure that it is not damaged.
They want us to be at the hospital with Abby by around 8:00 AM, so for right now we are just going to let her sleep a little bit more.
Mark and I are both here!!! He was supposed to fly home at 1:00 today. Oma is also here. God is so good. We will both be here for her surgery!
Please pray on this beautiful Sunday...this is going to be a huge surgery for Abby and there is lots of risk.
Pray for Abby to be strong through surgery. Pray for the surgeons to have careful and healing hands. Pray that the heart is a match. Pray that God holds Abby in the palm of his hand during surgery and recovery.
Thank you God!!!
The tears of joy are flowing.
We will take the computer to the hospital with us and try to keep everyone updated as things progress.
Love,
Mark, Heather and Abby
Thursday, July 10, 2008 11:30 PM CDT This will come as shocking news to some of you and you may even not want to believe it, but I have solid evidence that Abby can be quite a stinker. We’ve done fairly well adjusting to the fact that I’m not a clone of Heather and approach things differently. Still we’ve had our share of stand-offs this week.
Don’t get me wrong, she’s still a sweet little poop, but she likes to push the envelope. We have had a great deal of fun just playing and being together too. I’m not very excited about the prospect of going home Sunday aware that the next time I see her could be on the other side of surgery. I'd prefer more weeks like this first.
Abby had a good clinic appointment today. Some of her medications have been adjusted within the past few weeks and she’s responded very well. The team at Children’s Hospital performed a transplant this past weekend. I was very encouraged by this. The procedure went well, the recipient is doing well and, no, the donor was not a match to Abby.
Thank you all for keeping up with us and praying,
God bless - Mark
Monday, July 7, 2008 7:10 AM CDT Happy Third Birthday Elizabeth Mitchell! We’re sure that your party in Neverland was delightful yesterday and hope that you had a wonderful time. We love you and wish to see you soon.
It was a hot one in St. Louis yesterday, but we still got outside for a couple of short stints. Abby is a hot body at night no matter how cool I make her room. It's like a meat locker with the air conditioning blasting and a fan running, but still her she gets sweaty and will cover with only a sheet. Her body must be up to something when she sleeps.
We have visitors this morning. Pigeons are perched outside the window while we have breakfast. They're entertaining and certainly out of the ordinary for us. Abby's sure that they're coming to visit her.
Wishing you all a great start to your week,
Mark and Abby
Saturday, July 5, 2008 6:53 PM CDT Happy (belated) Birthday to Isaac and Jackie O.
Heather and I have effectively made the swap. We owe a very special thanks to Rose Schoenecker for arranging companion flights for us. This was a great way for us to spend more time together by traveling more quickly and at a lower cost than driving. Thank you, Rose.
It was nice to attend Abby’s appointment on Wednesday. Her cardiologist tends to be very brief, but we do get all of our questions answered. The more answers we get about this process, the more we understand that the UofM gave us much misinformation and it’s impossible to understand why. It’s clear that she was not given the correct priority and has basically been blessed with survival over the past year. It would be easy to be angry, but, instead, I feel more assured about our decision to bring Abby to St. Louis and our need to enjoy our present moments together. More to come on this topic, but I must share the following: when asked how long they’ve seen someone survive on Abby’s required medications and levels, the response was about 6 months was the longest they’d seen before Abby. This kind of knocked me off my feet as she will mark 17 months on these heavy IV drugs next week. I’d like to believe that she’s simply stronger and less at risk, but all of her test results continue to show that she is incredibly fragile and lucky to feel well day-to-day.
We checked out the zoo yesterday. Despite all of the great animal exhibits, the carousel was Abby’s favorite. Abby has made good friends with the people that manage our apartment building and I think that the general manager, Lyn, has made Abby an honorary granddaughter. They are all incredibly kind and sweet to her. We picked up some groceries on Thursday and Abby picked out a cake to share with them. Later that night, we had a cake eating and fingernail polishing session in their office. We’re also planning on going to a movie together on Monday. I can’t hold a candle to my wife when it comes to entertaining, but I’ll try to make the week fun.
Well, we’re off for an evening walk. Be well, God bless, and thank you for checking on us.
Mark
Sunday, June 29, 2008 11:21 PM CDT The weekend was nice and calm for Clare, Eva and me, which was great following a few hectic weeks. I swear that Eva would be content to pass the whole day sitting on a swing. At the park today, Clare was very aware of everything that other big girls (meaning her age 3-5 yrs) were doing and was showing an uncommon amount of independence. She misses Abby terribly, but, in a way, it’s nice to see the activities she chooses on her own when she’s not being bossed around by a very dominant big sister.
With the help of my cousin, Shalon, I slipped away yesterday to attend the funeral of Bert McCarthy. The McCarthys welcomed me into their lives more than 20 years ago (really!, wow time flies) and are incredibly warm and loving people. Before Bert became ill, he and his heroic wife, Ellie, lived in Norwood across from the church where they attended mass daily and where he is now buried. During the service, I was humbled by being aware of all of the prayers that Bert, Ellie and the rest of the McCarthys sent up for me and my family in that church over the past 20 years. My understanding of Bert as a sincere, faithful servant of God, made the service even more beautiful to me and a fitting send off.
In the week ahead, I’ll be heading down to St. Louis Tuesday after work. Clare gets excited whenever I talk about going to St. Louis because she knows that it means that her Mama is coming home. I ask her if I’m chopped liver and she confirms that I am. Despite my status (chopped liver) Clare told me she loves me at least a dozen times today. I’ve been blessed with really sweet girls. Heather and I will spend Wednesday together and with Abby. We’ll talk about how the decision to take on this situation was a good one and how all of this is for the best, but, in the end, it will be very hard to see my wife leave knowing that when I see her again it will be for about one day. At the end of July, I may drug Clare and Eva, strap them into the car, and drive them to St. Louis where we could spend a week together as a family. I am really looking forward to some one-on-one time with Abby this week.
Thank you to cousin Mary, auntie Jeanne and others who participated in a Tastefully Simple fundraiser last week in Glencoe. We so appreciate your sustained support through prayers, guestbook entries and activities like this. The funds are welcomed and will be put to good use. Shalon also mentioned Saturday that she has bracelets available. Anyone who still would like one will find her contact information via the fundraising link above.
One last note about my email (mark@ostlie.net). Last time I checked it, it had over 22,000 messages and over 9,000 after applying the spam filters. Someday I may try to use this address, but for now you’re best off contacting heather@ostlie.net to get in contact with our family.
Thank you, as always for your prayers and interest in our story,
God Bless - Mark
Saturday, June 28, 2008 10:22 AM CDT Just a quick note:
If you are trying to call me and are having trouble getting through, try using a 1 in front of the phone number. Some other people have needed to use a 1 when dialing my cell phone number.
So dial 1-763-360-9937
I have call waiting, so there should never be a busy signal or it should go straight to my voicemail.
Hopefully this will help you get ahold of me.
Thursday, June 26, 2008 9:59 PM CDT Happy Birthday to our nephew Brett Rasmussen!!! He is 15 years old today!!! We hope that you had a wonderful birthday Brett and that you celebrated with family and friends. We love you!
Abby had her clinic appointment with Dr. Canter today. Everything went well. She is not experiencing any side effects from having her IV hydration fluid stopped. Dr. Canter made the decision to stop the IV hydration when Abby was in the hospital, because she eats and drinks regularly, so she doesn't need the hydration support. Since stopping the IV hydration I believe that she also does not need as much diuretic support to pee. So, Dr. Canter made the decision to stop the IV diuretic that she now gets twice a day and switch her to an oral diuretic that she will take twice a day in pill form. We will see over the weekend how her body responds to this change. If she starts to take on extra fluid, then we may need to use the IV diuretic and try to wean her body off of it. Please pray that this change goes well and that her body accepts the new diuretic.
We had some excitement two nights ago. At 11:30 PM the fire alarms in our apartment building went off. I was still awake (it is hard for me to fall asleep in a new place when I don't have my hubby by me) and so I walked into the hall and sure enough everyone was heading downstairs. So, I went and scooped Abby out of her bed and we walked down the eight flights of stairs to the lobby. There were seven fire trucks outside the building and everyone just waited and watched from the lawn as the fire fighters stormed into the building in full gear with hoses and axes. It took about 30 minutes for them to clear all the floors and then we were safe to go back into the building. I spoke with the fire chief and asked him what happened. He said that they think someone was smoking on 4th floor too close to a fire detector and that set them off. Bummer. This time is St. Louis is sure an adventure.
It is nice to have internet and TV now in our apartment. It makes me feel much more connected to the world. I sure miss my family and my friends. To all my dear friends, please know that I haven't forgotten about you, it has just been busy here and talking on the phone can be hard when Abby is awake because I am her entertainment. I love you all and I miss you.
Tomorrow Abby and I are getting a visit from my Aunt Carolyn and her husband John. They are making their way from Texas to Illinois to visit John's family so since they are driving through St. Louis they will stop for a visit. It will be fun to have them here, especially because it will be their first time meeting Abby. They are bringing their dog Coco, so I am sure that Abby will have fun meeting her.
Well, I am tired tonight, so off I got to bed.
Pray for that special new heart to arrive tonight.
Love, Heather
P.S. Mrs. Pam - try calling my cell phone again, it is working well 763-360-9937 we did not receive a zoo card in the mail yet.
Tuesday, June 24, 2008 8:24 PM CDT The show last night was very fun. Abby was the only little girl that got to go backstage and meet the cast, so that was a super treat! I didn't say this last night, but she carries her IV meds in a High School Musical backpack, so the cast signed the backpack as well as a t-shirt that I bought for her. She was pretty shy when first meeting them, but then during and after the show she kept asking if she could go and talk to them some more. I got pictures of her with "Troy" and "Gabriella" which are her favorite characters. I will post them soon, but I don't have much time tonight as Abby is ready to go up and start reading books.
We just did a video call with Mark, Clare and Eva using our web cam. It is awesome to see their faces. It just made me cry, because I miss them so much and want to hug and kiss them and just be mama. Eva was sucking her thumb and snuggling blankie and Clare was just excited to talk. I sang them a few bedtime songs and that was the part that Eva liked best. It seems so hard to know that it will be more than a week before I get to see them again. It just breaks my heart, but I am more than willing to endure this separation for Abby and her new heart.
Abby and I had two trips to SLCH today. She has had tummy pains the past two mornings, so we went to get her electrolite levels checked. When they drew labs this morning her glucose came back elevated, so we went back this afternoon and had it rechecked. It was normal during the recheck, so they think it might have been a fluke. I am watching her pretty close though, and hopefully she won't have any more tummy pains. The hospital here is awesome and we really enjoy the transplant team. We are so thankful to be here, and hopefully the call will come soon.
Well, Abby is itching to get back upstairs. More tomorrow.
Thanks again Tara C. for watching the girls this afternoon. That was so kind of you!
Love, Heather
Monday, June 23, 2008 4:04 PM CDT Well Abby and I are getting settled in here in St. Louis and Mark made it safely back to MN. He was very glad to see Clare and Eva. He said that Eva just starred at him for the longest time when he walked in her room on Sunday morning. They were both really glad to see him and play with him all day on Sunday.
Happy belated birthday to Mark's sister Pam (her birthday was yesterday). The kids had a great time swimming in their pool and just hanging out to celebrate her birthday. We love you Pam and miss you.
Tonight I am taking Abby for a special treat here in St. Louis. There is a huge outdoor theater called "The Muny" here and tonight is opening night of "High School Musical". I got tickets to the show and then talked with the stage manager and she is going to give us backstage passes to meet the cast before the show! Abby is going to be so excited. I am planning to take the camera along and gets lots of pictures of her with Gabriella, Troy, Sharpay and Ryan...fun! The show doesn't start until 8:15 tonight, so Abby is going to take a second nap today so that she can make it through the whole show. I can't wait to see her little face.
We have our next appointment with Dr. Canter and his team on Thursday morning. Abby is feeling really good.
I don't have much regular internet access yet, so my updates are still far between. Keep checking and praying...please.
Love, Heather
Friday, June 20, 2008 10:04 PM CDT Well it has been quite a week. We apologize for the lack of updates, but we did not have an internet connection at our St. Louis apartment until today. We have settled into an apartment (well sort of, because there is still a lot to be unpacked, cleaned and organized) but we have beds and a new address here.
Mark and Heather Ostlie
4615 Lindell Blvd. Apt. 801
St. Louis, MO 63108
Mark and I looked for apartments on Tuesday in the afternoon while Abby was taking a nap at the hospital. We looked at several very yucky apartments (think cheap college apt) and then finally we stumbled upon the apartment that we now moved into. It is in a nice, safe building, with lots of access to groceries, the public library, cafes, shops, and best of all it is only 6 blocks from the hospital. I took Abby to the hospital today to have her labs drawn and we counted the blocks as we walked. Also, it is very close to Forest Park, which was built to host the World's Fair here in St. Louis. Forest Park has a great Zoo (we hear) that is free to public. It seems like a good area. We can see the hospital from our south facing apartment windows.
Abby was discharged from the hospital on Wednesday and we spent Wednesday night in a hotel nearby. On Wednesday afternoon we had to go and pick out the furniture that we are renting for this apartment and sign the lease agreement. Then Thursday we met with our new home infusion nurse to learn about Abby's new pumps and medications. Thursday afternoon we made a run to Bed, Bath and Beyond and Target to get bedding and other household things that we could not bring with us. This adventure is sure not cheap. But, hopefully Abby will get her new heart here very soon and we will be back in MN before the end of the summer. That would be so great.
Well, Mark leaves tomorrow morning to head back to MN. He is going to take the Amtrak, because the plane tickets were just too expensive. He won't arrive at home until late in the evening, but then he will be at home when Clare and Eva wake up on Sunday morning. We all miss them so much. It is so difficult to be away from my babies. Mark will be in MN working and with Clare and Eva until about July 2nd and then he will return to St. Louis and I will come to MN for a week to be with Clare and Eva. Going almost 3 weeks without seeing them is very hard. I hope that they don't forget that I am their best mama. I just have this feeling though that I may not be returning to MN until after Abby gets her new heart. I think that it may arrive very soon, so then I will need to stay. I will be so happy, scared, nervous, and excited when that moment arrives.
Alright, I feel like I am rambling now because it is getting late. We now have a good internet connection, so we will be updating the website more often. We will also try to get some new pictures on the website soon.
Thank you for the prayers and well wishes.
Love, Heather
Tuesday, June 17, 2008 7:34 PM CDT Dear Family and Friends,
This is going to be the short version of what has been happening in the past few days.
Saturday we planned on leaving MN in the early afternoon, but Abby’s urinary tract infection was so bad that she was doubled over in pain. We took her to the ER at Minneapolis Children’s just to check things out. They confirmed the UTI and gave her an IV dose of an antibiotic. Then we got her on a different oral antibiotic and a medication for pain. By the time we got finished in the ER it was already almost 7 PM so we decided to just sleep at home and get a very early start driving on Sunday.
Abby still had a lot of pain during the night, but she was feeling better when we woke her around 4:30 AM to start our drive. We drove to Des Moines and arrived at the Brice’s’ house around 9:30 AM. Our good friends had a wonderful breakfast prepared for us and it was great to stretch our legs and let Abby play with their boys Carter and Conley for a little while. Then we got back on the road. We drove and drove and drove with a few stops for snacks and bathrooms. We arrived in St. Louis just after 9:00 PM. We checked into the hotel, showered up and we were all sleeping shortly after 10:00 PM. None of us even moved until after 8:00 AM the next morning.
On Monday morning we had a chance to survey the area around the hospital. It is very nice. There are lots of shops, eateries, apartments etc. We got some bagels from Panera and had a leisurely few hours getting ready to head over to the hospital. At 10 AM we walked through the skyway over to SLCH. It is a beautiful facility (we will take some pictures soon). We admitted Abby and then waited for them to get a room ready for her. Abby is staying in the cardiac step-down unit from the PICU. After we got up to floor 7 West there were lots of new people to meet. We met with the transplant cardiologist, Dr. Canter, the transplant surgeons, the transplant coordinators, the social worker, and the nurses (of course) and a few more people that I am forgetting right now. Then in the afternoon Abby had lots of tests. She had an echocardiogram, EKG, renal ultrasound, and ultrasound of her major vessels. She fell asleep during the last ultrasound. Then later after a nap she had a chest x-ray and blood work done. It was a long day for her.
The entire staff here at SLCH seems very friendly, caring, and genuinely glad to have Abby and our family here. We asked Dr. Canter what the average wait time is for Abby’s age child and he said 6-12 weeks. But, Abby will be at the top of the list, so that may make things a bit faster. Just a few minutes ago the transplant coordinator came in and I signed the papers to put Abby on the transplant list here and remove her from the MN list. We are also getting things figured out to have a home infusion company down here. That should be completed tomorrow and then she will be discharged from the hospital.
Mark and I are still looking for a place to live while we are here. We are actually going to head out and check out a few apartments while she is napping now. I am sure that there is more to update, but it will need to wait until later. Thank you for all the well wishes and prayers. Keep them coming and pray for that new heart to come very soon. Dr. Canter said that his shortest wait time was 6 hours. They listed a child and the call came 6 hours later. Isn’t that crazy?
More later. Love, Heather
Friday, June 13, 2008 8:08 AM CDT Abby will find a heart in St. Louis!
As of 5:00 PM yesterday it is official. We are going to St. Louis! The SLCH Transplant Team had their meeting yesterday at 3:30 PM and agreed that Monday will be the day that they will meet our sweet Abby.
We will be departing from Chaska around noon on Saturday and driving to Urbandale, IA (just outside of Des Moines) to spend the night with our friends the Brices. Then on Sunday (Father's Day) we will drive the rest of the way to St. Louis. On Sunday night we will stay at the Parkway Hotel, which is connected to SLCH. Then on Monday morning at 10 AM we will go to admitting and Abby will be checked in. Dr. Canter (transplant cardiologist) feels that it is necessary for Abby to spend a few days in the hospital. This is important so that the transplant team can get to know her, she can be evaluated by the team, and they can make sure that she is getting the correct medications etc. Since Abby hasn't been seen by a transplant cardiologist since January, Dr. Canter just wants to be thorough and make sure nothing is being overlooked in her care plan. We feel comfortable with this decision and so does Dr. Singh (Abby's primary cardiologist here in MN).
So, Abby will be staying at SLCH for at least Monday and Tuesday. Mark and I will keep a hotel room at the Parkway Hotel during this time and take turns sleeping. We have been told that there are no sleep rooms at the hospital, so we will be sleeping bedside with Abby (which basically means no sleeping).
Being in the hospital will give us a chance to ask lots of questions, learn how things work at the hospital, get oriented with where things are, get to know the staff and have then get to know us. This should be a good experience.
During the first week that we are in St. Louis Mark and I will also look for a place to live. Then Mark is planning to return to MN on Friday, spend the weekend with Clare and Eva and then return to work on Monday. Then Mark will work until the 4th of July and then come back down to St. Louis. We will then trade and I will come back to MN for a week. This is how the summer will go for us until Abby gets her new heart and then we will both be in St. Louis for some amount of time until she is ready to leave the hospital.
Please pray that we have safe travels this weekend and that everything goes well with the SLCH transplant team. We will have the laptop with us on our journey, so we will keep you updated daily on our adventure.
Love to all,
Heather
Wednesday, June 11, 2008 3:59 PM CDT Progress is being made. We are 95 percent of the way there. We have been promised that ALL of the paperwork will be signed and approved by the end of business today. And we have a TENTATIVE APPOINTMENT to see Dr. Canter and the SLCH transplant team on Monday morning. Tomorrow afternoon Dr. Canter meets with his transplant team to discuss their patients and he will give his final "ok" during that meeting. Keep praying that there are no more set backs or red tape to cross. We plan on driving down this weekend if we do indeed have a Monday morning appointment.
Please keep checking the website tomorrow for what will hopefully be a most joyous update that EVERYTHING is in place and we are ready to go.
I better start packing...
Thanks for the prayers and love.
Heather
Tuesday, June 10, 2008 12:42 AM CDT Minnesota Medical Assistance has completed their portion of the contract to get Abby to St. Louis. Now the ball is completely in St. Louis' court. They need to decide if they will accept the terms of the contact. Federal Law says that Medicaid programs are only allowed to pay cost for patients that are seeking out of state treatment; that the treatment facility cannot profit off the transaction. From what we have heard, SLCH is trying to word the document in a way where they could ask our family to provide some type of payment (fundraising money) to the hospital. It is not legal for them to ask for this type of payment prior to treatment, because it puts conditions on when treatment will be provided. Again, it all just comes down to the money. Mark told them yesterday to tell us what they would like to receive above cost. But, they haven't provided any numbers, because legally they are not yet allowed to do so. So, we are now waiting entirely for SLCH to say "come on down". Does it feel like we are on a game show? Spin the wheel and whoever gets closest to one dollar wins a new heart! Sorry if the sarcasm is bit much, but seriously we are just trying to get Abby in the right location so she has the best chances of getting a heart.
The St. Louis transplant team has been wonderful to work with, even though we have only talked on the phone and not in person yet. They are very kind to us, return our phone calls almost immediately, and are patient with our questions and listen to our concerns. We look forward to working with their whole team.
So...we wait...some more...
Maybe we will have an answer by the end today.
Love, Heather
Monday, June 9, 2008 8:49 AM CDT One more thing for this morning. I just found out from Robin Corbo that Cynthia Herrington (heart transplant surgeon at UofM) resigned over the weekend. Dr. Herrington's last day is June 18th. So, this basically means that there will no longer be a pediatric transplant program at the UofM. Now it is even more critical that Abby gets to St. Louis. I wonder why no one from the UofM called to let us know about this major and very important change in the transplant program? WOW.
This is my update from earlier this morning:
Well, things did not get resolved on Friday. We finally have a name of the woman who is supposed to seal the deal between MN Medical Assistance and SLCH. Her name is Anne Barry and she is the Chief Compliance Officer and works for Commissioner Cal Ludeman. I was very frustrated to learn that things had not been resolved on Friday and I tried to make an appointment with Ms. Barry. I think that it is important at this point to meet with people in person and stress how critical timing is for saving Abby's life. So, Mark drove over to St. Paul this morning and just went to Cal Ludeman's office and is going to wait and see if he can get an appointment with either Commissioner Ludeman or Ms. Barry. It is also frustrating that no one can even tell us the steps in the process that are left to complete. We need to know what should be happening and who can get it done. Abby needs to be in St. Louis and it needs to be soon. It has already been 4 weeks since we began discussions of going to St. Louis. If Mark is able to get an appointment then I will drive over to St. Paul and join him. This whole process seems unorganized and confusing even to the people that are supposed to know what is going on. In the back on my head I have visions of all our family and friends standing on the Capitol steps with pink and turquoise "Send Abby to St. Louis" signs. I sure hope that it doesn't come to something like that, but at this point nothing would shock me.
I want to say a huge thank you to everyone who has emailed me with offers of housing and help for us when we arrive in St. Louis. Please understand that I just don't have a ton of free time to respond right now. I have all of your emails saved and I will be sure to take you up on your offers when the time comes. Thank you for your generosity and help. We are so thankful for our wonderful friends, family and even helpful strangers.
We will let you know what happens.
Love, Heather
Thursday, June 5, 2008 4:11 PM CDT Please say an extra prayer tonight that the meeting tomorrow between the Commissioner of MN Medical Assistance and the CFO of St. Louis Children's Hospital goes well and brings us the good news we are waiting for.
We really appreciate your prayers, support and love.
Thank you,
Heather
Thursday, June 5, 2008 9:53 AM CDT Sorry for no update yesterday, I didn't mean to keep everyone waiting. I was pretty frustrated and just didn't take the time to sit down and write a journal update. The meeting yesterday was cancelled by the Commissioner from MN Medical Assistance. I guess that she had something better to do. So now the meeting is scheduled for Friday. I wonder if it was her child if she would have postponed such a critical meeting by even two days. I doubt it. So, we continue to wait for answers.
Last evening we had Todd and Robin Corbo over for coffee and dessert. They lost their son Jack a few months ago while he was waiting for a heart transplant at the U of M. They were also lied to and mistreated on several occasions by the U of M transplant team. It was nice to meet them in person, hear about their son Jack and his journey, and just listen to what they have gone through. These are very difficult times for their family and they could use some extra prayers. Please pray that they have peace and comfort. www.caringbridge.org/mn/corboboys
The duck story will need to wait...Eva is crying and needs a diaper change.
Love, Heather
Wednesday, June 4, 2008 7:52 AM CDT Still waiting to hear...
The CFO of St. Louis Children's Hospital and the Commisioner of MN Medical Assistance will have a conference call this morning with all of the people who have been involved in the approval process. Hopefully we will have some good news to report later today.
We had a great weekend. On Saturday morning we got the kids ready and packed a picnic lunch. Then we drove over to Minnehaha Falls for some sight seeing and picnic in the park. It was a beautiful day and the kids had a great time just being outside in a different enviroment. Oma and Opa joined us there. We all rented one of the 7 passenger bikes (I will try to post a picture). After I had sanitized the bike (funny to see) we rode around the park. The kids had a great time.
Then Sunday we got them a new blow up whale pool and then swam in the back yard. Of course Mark had to bring out several buckets of hot water from inside so that the pool would be warm enough to actually swim in. Our good friends the Mitchells brought their girls over for a visit, so all 5 girls we suited up and enjoying a splash in the pool. It was great to see the Mitchells as we have been trying for months to get together, but every time we schedule something one of the kids has had a cold. It was nice to enjoy some warm sunshine and fresh air. The kids were all enhausted on Sunday night.
Everyone at our house is feeling great. We are just waiting to hear about our St. Louis hopes.
Ok, the kids are "starving" so I need to go. Next time I will share our duck story from last Friday. Look forward to that, it is a great story.
Love, Heather
Friday, May 30, 2008 12:20 AM CDT Well we have not received final approval yet, so it looks like we will not be heading to St. Louis this weekend. We are waiting for a contract to be approved between St. Louis Children's Hospital and MN Medical Assistance. MNMA has requested cost numbers from SLCH for Abby's surgery and treatments and physicians fees. It seems that St. Louis provided some information but not everything that MNMA requested. MNMA is authorized by the federal government to pay cost for all of Abby's treatments and in some cases they have authorization to pay above cost. SLCH is requesting 60 percent of their charges be paid by MNMA. However, MNMA can not yet verify that the 60 percent is only cost and not adding a profit margin for SLCH. It is all somewhat confusing. Once MNMA has the cost numbers then they will write a proposal. It will be reviewed by SLCH legal department and financial staff and then be accepted or rejected. The two sides basically need to negotiate until they come up with a deal that is accepted by both sides. You can all understand how this can be a long process. We are hoping for answers either later today or in the early part of next week.
We will keep you posted on any news that we hear.
Here is one funny thing that Abby said to Mark the other night. He was just about to carry her upstairs for bed and she said "Stick with me Dad!" while giving him the thumbs up sign. So funny. Now it is their little joke. We don't know where she heard this expression, but the way she says it just cracks us up.
Mark and I are exhausted. It is amazing how tiring it can be to just wait around. I would feel so much better if we could just start packing or do something to prepare. But we wait, wait, wait. I know in my heart that going to St. Louis is the right thing for Abby. So, we just want to get going.
Pray for our needed contract to be negotiated soon.
Love, Heather and the gang
Tuesday, May 27, 2008 1:19 PM CDT Update as of 3:54 PM
Well, it seems that in this process there is always one more hurdle to overcome. What I have learned in the past few hours is that Abby has approval from CDMI (Care Delivery Management Inc.) for receiving treatment in St. Louis. This group of individuals determines/approves the medical necessity of receiving treatment out of state. CDMI said "yes" there is a medical necessity for Abby to receive treatment in St. Louis. Now, we still need MN Medical Assistance to approve a contract with St. Louis on the payment rate. They need to come to an agreement with the hospital and also the physicians group on payment. So, we need that final approval before we can take Abby to St. Louis. No one can tell me how long this process takes. But, I have talked with everyone involved to stress the importance of speedy negotiation and approval. Hopefully this financial contract can be approved this week so that we can still head down to St. Louis the early part of next week.
Update from early today
Praise God! Medical assistance has approved Abby for treatment in St. Louis!!!! This is the best news, as we have been so worried that the financial part of this care plan would stand in our way to getting Abby the best care possible. But, all is approved, and we are thrilled. I am waiting to hear back from the St. Louis transplant team as to when they will be able to see Abby. We are thinking that it will probably be late this week or early next week. We will keep you all posted as plans are confirmed.
Thank you for all the prayers! They have been answered.
Love, Heather
Saturday, May 24, 2008 11:41 AM CDT Hi everyone,
We have been waiting for several things to fall into place before posting more specific information about our new care plan for Abby.
Mostly we were waiting for Mark to share some information about our plan with his team at work. He was able to communicate with all of them this past week, so now we are able to tell everyone about our plan.
We are being advised to change Abby’s care to St. Louis Children’s Hospital because of the larger donor pool in this region of the US and the excellent reputation of their transplant program. The medical professionals currently involved in Abby’s care at Mpls Children’s Hospital and the U of M agree unanimously about this recommendation. Paperwork is being processed, and, if all of the right hurdles are overcome, we could be taking her to St. Louis within days or weeks.
Abby has been on the heart transplant list for a year and her condition warrants the pursuit of aggressive options. Most of the time she feels pretty well, but her condition is volatile and the valleys are very deep. We need to help her get a heart as soon as possible and it seems that St. Louis may be the answer in helping to receive a new heart more quickly.
Our current plan is for Mark and me to take Abby down to St. Louis and meet with the transplant team. We will get settled into some sort of housing and then Mark will fly back to Minnesota. Then we will work out an arrangement for taking turns being in St. Louis with Abby and being in Minnesota with Clare and Eva. Initially we are not planning to move our whole family to St. Louis, but we may change our plan with time. During the first week or so that we are in St. Louis, Clare and Eva will be taken care of by their grandparents. Mark will try to keep working as much as possible, but obviously this will mean some changes to his work schedule. We appreciate so much how supportive and helpful his co-workers at General Mills are during this difficult time.
From a medical standpoint, the transplant team in St. Louis is ready to receive Abby at any point. We are waiting for approval from Minnesota Medicaid (Medical Assistance, which is Abby's insurance, to approve her out-of-state treatment. This approval process has proved to be very difficult and fraught with red tape, but we may have an answer as early as Tuesday. We have been assured by many people in the process that because all doctors are in agreement that going to St. Louis is best for Abby that it should be approved. Please say extra prayers that we get the necessary approval and that it happens quickly.
Abby's care in St. Louis will take place at St. Louis Children's Hospital; www.stlouischildrens.org.
Here are a few statistics about St. Louis Children's Hospital Transplant Program:
Seventy-five percent of the program's patients come from outside the St. Louis area. Cardiologists from as far away as Florida, Minnesota and Texas refer to St. Louis Children's Hospital so their patients can benefit from the skill, experience, support and commitment to quality of life that make the heart transplant program one of the strongest in the country.
The heart transplant team at St. Louis Children's Hospital recognizes that home is really where the heart is. The average length-of-stay for heart transplant patients at St. Louis Children's Hospital is 11 days.
Centrally located in the Midwest United States, St. Louis Children's Hospital also has an important geographic advantage over many other pediatric organ transplant centers, with the ability to retrieve organs from virtually anywhere in the United States.
We are excited about the potential of making a change that will help Abby receive a new heart more quickly. We are also saddened that our family will be divided for some amount of time. God has pointed us toward St. Louis and in our research and conversations with the professionals in St. Louis we are confident that this is the right decision for Abby's care. Please pray that our transition is smooth and that we get approval from Medical Assistance to take her to St. Louis.
We will keep you updated on new information as it comes to us and will let you know when/if we get the thumbs up to head south.
Thank you for the continuous prayers and love.
Heather, Mark, Abby, Clare and Eva
P.S. Abby and Clare both have a bit of a runny nose that started this week. An extra prayer would be appreciated for both of them that it passed quickly and does not cause either of them too much suffering. So far, Eva does not have any symptoms.
Monday, May 19, 2008 9:08 PM CDT Great news! As of this evening, Abby is now listed nationally for heart transplant as a status 1A (which is the highest status) and yes, she IS still at home! Many of you may recall that back in January of this year I questioned the transplant team at the U of M about why Abby was listed as a 1B rather than a 1A. They told me that 1A status was only reserved for patients that were in the hospital and that had an estimated time living of 2 weeks or less. They told me that it was not possible to have Abby listed as 1A status while she was at home. I pushed a little, noting that Abby is on the same medications that many hospitalized patients are, but that we are actually able to keep her healthy here at home (because she is not exposed to all the germs that hospitals have). Again, I was told that Abby could not be listed as a 1A while she is outpatient. So, at the time I trusted that what I was hearing was accurate and tabled my efforts to have her status elevated. In hindsight, I wish I would have pushed more, but am excited that Abby’s status is now changed.
During the past two weeks Mark and I have been advised to explore new options for Abby that may help her receive a heart more quickly. We have been speaking with other transplant programs in the U.S. and discovered that programs with children just like Abby (on IV meds and outpatient waiting for a new heart) have them listed as status 1A. The day that I heard this information I just broke down crying on the phone with a transplant coordinator from St. Louis. She was just giving me the information, but I couldn't help the flood of emotions that came with that news. I must have asked her to repeat the information several times. "So, it is possible for Abby to remain outpatient and be listed as a status 1A given her IV drips and medical condition?" Every time the transplant coordinator answered "yes". This was great news, but at the same time I was frustrated and angry with the U of M program for not telling me the truth about what is possible for getting Abby listed at the highest level. If you are reading this and reacting like I did, you are now realizing that this means that it is possible that Abby could have been listed as a status 1A for the entire year. Doesn't it make you want to scream? Being angry hasn’t helped, but you can be sure that going forward we will be more proactive. Anyway, there is a bit more background information that I cannot share at this time, but we are thrilled that Abby is now listed as a 1A!
The other option that could help Abby get a new heart more quickly requires approval from Minnesota Medical Assistance (Medicaid), which is Abby's insurance. Getting anything approved through MA can be challenging and full of red tape, but I feel confident that I have now contacted the people that can approve our request, so hopefully we will get a thumbs up shortly. It may have also helped that I enlisted our State Representative, Paul Kohls, to help make a few phone calls to the right people. He was very responsive and eager to help.
Abby is a beautiful, intelligent, brave, strong, loving little girl who desperately needs a new heart. We are trying to stack the cards in Abby's favor. We are recruiting the best of the best in the transplant world to play on Abby's team. We will do everything in our power to help Abby win this fight!
Please keep fighting with us. Pray for MN Medical Assistance to approve the new plan we are putting in place for Abby's care. Pray for a new heart to come very soon. Pray for Abby to remain strong and ready for surgery and recovery. We thank you all so much for your support and love. We read the guestbook everyday and are uplifted by your journal entries and love for Abby and our family. Someday when we are past this difficult time in our lives we will be sure to pay forward all the kindness and support that has been bestowed upon our family during this journey (and we will teach our girls to pay it forward also).
We will keep you posted on further developments in Abby’s care plan.
Goodnight.
Love, Heather
Wednesday, May 14, 2008 10:02 PM CDT Much activity at our house this past week . . .
This Friday will be the one year anniversary of Abby’s listing for a heart transplant. It’s been quite a year and we wouldn’t trade the time we’ve had together as a family for anything. We’re so thankful that Abby’s such a tough little cookie and still strong enough to face the surgery and recovery ahead of her. We know she’ll do her part and we’ll certainly continue to do whatever we can. We’ve felt very helpless in this process, but then, last week, Dr. Singh approached us about exploring an alternative that may help her get a heart faster. We can’t go into too much detail yet, but ask for your prayerful support so that the right decisions are made by us and the medical professionals. This may mean some significant changes that arouse both fear and hope at the same time.
This is Heather writing now (Mark wrote the above paragraph). I spent several hours on the phone today with medical professionals in the pediatric transplant field and I learned some very significant information that may help Abby get a new heart faster. One thing I learned is that it may be possible for Abby to remain outpatient and also be listed at 1A status (this is the highest status a person can be while waiting for a transplant). This would be a very positive and exciting change. There are more details that we will be confirming over the next few days and will be able to share as we know they are accurate. For now I ask that you pray for guidance for us as we make significant decisions over the next few days. Thank you.
On another note, I finally took Eva in for her one year photos (she was really 15 months). Toni and I had a great time with her taking pictures. Toni has posted a few of the photos from our photo shoot on her website. Go to www.frontporchphotos.com and then click on Studio Blog and just scroll down until you see Eva. What a great baby she is!
We promise to update as we have more information to share!
Love,
Mark, Heather, Abby, Clare and Eva
Tuesday, May 6, 2008 11:49 AM CDT A very quick update. I brought Abby back home this weekend (as my mom, Oma, started feeling a little weird and we just didn't want to take a chance). Then yesterday I took Clare into the doctor, because she still has a runny nose. I suspected that she had developed a sinus infection and this was confirmed by her pediatrician. So, she is now on antibiotics for the next 7 days which should help her clear up the runny nose. She is not contagious, so we are all under one roof again. Abby quite enjoys that someone else in the house is also taking medicine and they take their medicine at the same time (almost like a little game). We went for a walk this morning and enjoyed some of the glorious sunshine. Now it looks very dark to the west of our house and I think that the forcast is correc that we will get some thunder storms. I have more thoughts that I would like to add, but the girls are wanting some lunch now so I will go and make something yummy for them.
God bless you all and thank you for your prayers, love, and kindness.
Love, Heather
Friday, May 2, 2008 4:32 PM CDT I am at home with Clare and Eva today because Mark really needed to be at work today. Abby stayed with Oma for the day and I will go back there this evening to give Abby her medicine and stay the night with her. Clare just really isn't feeling that well yet. We just have been so causious about Abby not getting this cold that it seems silly to take a chance at this point, so we will go at least one more night apart.
Driving home this morning, I put in the Sara Groves CD "Add to the Beauty" and was just listening to the songs. I got to song number 4 on the CD called "It's Going to Be Alright" as was totally brought to tears. It just is the most fitting song for our family right now and it was what I needed to hear. Thanks to Sara Groves for the great uplifting music. If you would like to hear the song go to her website www.saragroves.com and follow the links to the CD and song title. It is awesome.
Thanks for all the encouraging and supportive journal entries. They mean so much to us.
Love, Heather
Thursday, May 1, 2008 10:21 AM CDT I apologize that there has not been an update in several days. Like I said in my previous entry, Eva started to have a runny nose and we were concerned that she had gotten a cold. Well on Tuesday when Clare woke up from her nap it seemed like the faucet in her nose had suddenly turned on and it was overflowing. She could hardly breathe because her nose was so stuffy. So, I kept her and Abby apart and then when Mark got home from work we talked about what would be best for us to do so that we could try and protect Abby from getting this cold. After some deliberation, we decided that it would be best for me to take Abby and go to Oma and Opa's house. Yes, it is a lot to pack up all of her medications and supplies, but we knew that Clare and Eva would be better sleepers in their own beds and hopefully extra rest will help them both recover more quickly. So, on Tuesday evening I brought Abby to Apple Valley. Mark stayed home with Clare and Eva on Wednesday and then today our "saint" Teresa is at the house with them. So far (keep your fingers crossed) Abby does not have this cold. This is what we hoped for. Eva has been sleeping pretty well at night in spite of her runny nose. Clare had a hard night on Tuesday, but Mark said that she slept better last night. She still sounds like she is talking under water, so Abby and I will spend at least one more night here in Apple Valley. Luckily, Abby's favorite home infusion nurse, Lori, lives just in Lakeville, so she was flexible and stopped here this morning to draw Abby's labs. Thank you Lori.
A small side story...when we got Abby's lab results on Monday her INR level (the thinness of her blood, regulated by Coumadin) was too high. So, we have not given her the blood thinning medication for two days and we needed to get it rechecked this morning. Usually we don't have to draw labs on Thursday mornings if everything on Monday looks good, but since there was a concern about the consistency of her blood we needed to draw labs today. So, a big thank you to Lori and Fairview Home Infusion for being so flexible with us. Hopefully Abby's INR level will be back in range today.
So, once again my family is split apart. Eva was crying so hard and yelling Mama at the top of her lungs when Abby and I backed out of the driveway that even I had tears running down my face. Clare understands a bit more why it is important, but she was still sad to see us go. Frankly, it totally sucks when this is what we need to do so that we can protect Abby. It is not fair. I know that Clare and Eva will not remember these days when they get older and they will only remember feeling loved and secure, but while we are in the midst of it all it seems just harsh and sad. I tell my three girls all the time how proud I am of each of them for their bravery and unselfishness during these times of trial.
It is not just the girls who unselfishly change plans to protect the health of our family. Mark, who is so very busy at work, changes his plans to make himself available to care for the girls when Abby needs to be separated for her own protection. This is hard for him, because the work doesn't go away just because he isn't there. It will mean lots of late nights and weekend work to try and catch up. And, for me that means long days of caring for the girls by myself and not seeing my husband. We also appreciate the efforts of our extended family that drop everything at a moments notice when we call for help. Thank you.
I don't know if those of you that read this journal care to hear about this next subject, but here it goes. Personally, I have really been struggling recently to keep faith that Abby will receive a new heart. I pray and pray and pray, but sometimes it seems like it just isn't working. When will her new heart come? Will it come in time or not? Will her body accept the new heart and recover? The road has already been long, but even if she does get a new heart the road is still unknown and may be fraught with difficult intersections. I want to just yell and say to God "let's get on with it already". I know that God does not determine the timing of these events. He can see the path, but does not make the path. I cling so tightly to the hope that one day Abby will run around without the IV pack, will go to school, will be able to play with other children and go to public places without being so worried about germs, and will get to pursue her dreams to be a dancer, singer, piano player, nurse, and wedding planner (these are the career aspirations that she has recently listed). I feel myself giving up hope that the phone will ring soon and it will be the call for a new heart. I don't want to wish away these days with Abby, because everyday that we get to share with her is precious. But, I want her to live a more normal life; I want all of us to live a more normal life. So, at this time I ask that all of you who faithfully check Abby's website and pray for her please help me to keep faith. If the power of prayer is strong, please tell everyone you know about Abby and her journal and ask them to pray. Maybe if we expand our prayer circle it will make a difference?
Abby threw up about 5:15 AM this morning and then she just couldn't fall back asleep. So, she is resting now and hopefully she will feel much better after some sleep. She wasn't feeling so well when nurse Lori was here this morning and I think that she just needed some more rest.
One last thing, I want to extend a huge thank you to the Just For Kix dance programs in Lewiston and Rochester, MN. Ashley Heydt, the director from Lewiston, had a heartwarming idea to have her dance students do a "kick-a-thon" to raise money for Abby. The kids did an awesome job and raised more than $1000 dollars. When Jen Alleckson, the director of the Rochester program, heard about Ashley's idea for a kick-a-thon she decided to do the same thing. The Rochester dancers raised more than $2000 for Abby. I want to thank these amazing JFK directors for their thoughtfulness and caring and all of the dancers and their families from Lewiston and Rochester for these generous donations to Abby and her medical expenses. We are humbled by your kindness and forever thankful for the help you have given to Abby and our family. Thank you. I cannot say enough good things about the entire Just For Kix company. I loved working for JFK and I miss being a part of the JFK family. I miss my wonderful students and parents and thank you all again for your support during the past year. If you would like to read more about the Just For Kix program go to www.justforkix.com
Well, I am going to go and check on Abby. She worries me when she gets so tired like that and can barely keep her eyes open long enough to get tucked into bed.
Please keep praying for Abby and her new heart.
Love, Heather
April 27, 2008 9:10 PM CDT Hi everyone,
It's Sunday evening and the girls are all tucked into bed. I feel bad for not updating the site much this week. I do have some things that I would like to write, but I just haven't had the energy this week. Sometimes the writing just flows freely and other times it seems like pulling teeth just to get a paragraph typed. Anyway, no new worries about Abby. She has thrown up a few times this weekend, but is still hungry and for the most part has been energetic and happy. Eva's nose started running tonight. That makes me worried. It could be just teething, but come to find out that my brother and his baby are not feeling well and they were at our house on Thursday. Of course, at the time they didn't know they were sick (we don't blame them or even know if that is where Eva might have picked something up). So, we'll see what tomorrow brings for her. If it seems bad and she is sick then my mom will take her. These darn spring colds...why now? I will try to gather my thoughts this evening on what I really want to write and try for a more in depth journal entry tomorrow.
Thank you all for praying for Abby. We appreciate your prayers and ongoing support more than we can ever express.
Love, Heather
P.S. For those of you who don't know, on May 16th Abby will have been officially waiting for a new heart one year. That is when she was listed last year. It is amazing to us that a year has already passed, and no new heart. I try very hard each day to pray and believe that her special new heart is coming very soon. Pray with me, please.
Sunday, April 20, 2008 9:22 PM CDT I needed to log in again and update Abby's website one more time before going to bed. Just a few weeks ago I asked for those of you that check Abby's website to pray for a little baby named Luke Haberman who was born with HLHS. Tonight after writing on Abby's website I went to check on Luke via his CaringBridge page. I was stunned to read that baby Luke passed away. He was doing so well and doctors thought that he was really looking good. Apparently he became distressed and was taken by ambulence to the hospital and passed away. Please send your most heartfelt prayers to Luke's family as they are devestated by his passing. What does this happen to babies and small children? I don't know. I know that God has a plan, but sometimes it seems so terribly unfair. Someday I will have lots of questions for Him when we meet, or maybe all of our confusions about life simply become clear in death. I pray that God is holding Luke in his arms tonight and that God gives peace and comfort to Luke's family during this most difficult time. My sympathy goes out to the Haberman family.
www.caringbridge.org/visit/lukehaberman
This is my update from 9:22 PM on Sunday night
Hello everyone,
I apologize for not updating earlier this weekend, but things have just been busy at the Ostlie house. Clare and I returned home on Friday evening, just a little before bedtime. Clare has been feeling good all weekend, so apparently she is now over whatever illness she had. Abby and Eva did not get sick, so we spared them from getting whatever Clare had. That makes me so thankful that I took Clare and went to stay at Oma and Opa's for a few days. I know that Clare really wanted to be at home with her sisters, but she understood why we needed to stay away and now we are so thankful that we did. Everyone is reunited now and we had a good buy very busy weekend.
Every spring our neighborhood along with several other neighborhoods in Chaska known as the Jonathan Association has an annual garage sale weekend. Two years ago Mark and I had a garage sale with our neighbors and it was great. I wasn't planning on having one this year, because we have enough to think about right now! But, as time passed we started getting a few things together and thought what the heck let’s have a little garage sale. Well then my mom and dad decided that they would like to put some things in the garage sale, and of course they offered to help run things. No problem. Then my Oma, who lives in Iowa in the same house that she has lived in since she got married, decided that she might be moving into a townhouse soon and selling her house. So, she needs to get rid of a lot of stuff and so we offered to have some of her things in the garage sale. All in all this garage sale has now turned into the "garage sale of the century". You would all laugh so hard if you could see our garage right now. It is packed from front to back with all kinds of stuff. We really couldn't fit another thing in there if we tried. The funniest thing is something that Mark said last night. To summarize, he said you know what will probably happen, Abby will get her call for a new heart on Wednesday night (the night before the garage sale starts) and then we will have a garage full of stuff all year. I would definitely take a garage full of stuff all year if it meant that Abby would get her new heart. Pray for that!
So if you are in the market for some great garage sale finds head on out to Chaska on Thursday-Saturday this week, April 24-26. Just at our house we have a full living room set, solid oak dining room table and chairs, antique table, two dressers, an antique writing desk, futon, exercise equipment, tons of toddler and little girls clothes and shoes, toys, antique games, antique dish ware and other house wares, a lawn mower and an antique push mower, two TVs, entertainment center, computer and printer, and much more. Plus, there are tons of garage sales in Chaska that weekend. So, get on your walking shoes and those $1 bills and come out for some bargain hunting.
In closing tonight let me just say that I am so glad my family is all under one roof. I love our little girls so much. Each one of them has a unique and special personality that makes me smile and thank God for them. I hope that you all enjoyed the beautiful weather today! It finally feels like spring! The girls were so glad to be outside in just t-shirts. Love it!
More later,
Love, Heather
Friday, April 18, 2008 9:54 AM CDT Clare did not throw up at all during the night. She slept pretty good; asked for a drink of water a few times. She woke up at 6:15 this morning and told me that it was morning time. She was hungry, so she had a little bit of oatmeal and even a few bits of English muffin. All of that has stayed down and she seems to have more color back in her cheeks today. She is also acting happier today and back to more of her normal personality. We will stay at Oma and Opa's house for a good part of the day and just make sure that she feels alright, we don't want to repeat our mistake last time of taking her back home too soon.
Abby and Eva are feeling good and we amazingly seem to have avoided this sickness for them. Mark and I also feel good, so it puzzles us as to what Clare got sick with. I anticipate that we will be able to return home this evening sometime, but the day will dictate how Clare is feeling.
Clare and I are homesick for the rest of our family and they miss us too, but we are making smart choices in protecting the health of our little Abby. All of these sacrifices will seem very worth it when Abby gets her new heart and she is strong and her body is ready to accept the new organ and fight to recover quickly from surgery.
Please continue to pray that Abby remains healthy and strong and that her new heart arrives at the perfect time. She needs it soon so that her body is able to fight through the recovery period and she is able to return home in as short a time as possible. We are all so very ready for our special phone call to come. Our minds and hearts are prepared for battle and our warrior Abby will prove her strength. She is wise beyond her years and her soul is ready for its new lease on life. She will sore to new heights when she has a "whole" heart. I believe that God has a wonderful plan for Abby; she will serve him well.
Love and peace from our family to you.
Heather and family
Thursday, April 17, 2008 9:45 AM CDT Update as of 12:54 PM
Clare and I are back at Oma and Opa's house. She did not keep the toast and cereal down this morning, and was feeling rather miserable. We just can't take the chance that she could pass this to Abby or Eva, so we abandoned ship AGAIN! I wish that little Clare was feeling better, but all I can do is try to make her comfortable and give her lots of love. Abby and Eva are having fun with Teresa at our house today. We are watching like hawks for any signs that either of them is getting this same sickness. Anyway, I talked with the nurses line this morning and they said that Clare should remain away from Abby for another 24-48 hours at least. So we will be split up again for a few days. UGHHHH! Thanks for checking on us.
Morning update
I guess that I spoke too soon yesterday when I updated and said that Clare was feeling better. She threw up (just once) during the night and did not sleep well. No fever, but she looks pretty pale and tired. She seems to still have something going on in her system. Teresa is here today to help with the girls, so we will try to just keep Clare away from Abby and Eva and make sure that she gets lots of rest. Everyone else is feeling well. Hopefully this will be the last day of it for Clare. Clare did eat a good breakfast, one piece of toast and some Honey Nut Cheerios. So, it seems to be staying down ok.
I will try to update more later on Abby and how everthing else is going.
Love, Heather
Wednesday, April 16, 2008 5:09 PM CDT Just a quick update to let everyone know that Clare and I are back home today. We really are not sure what was causing Clare to have tummy trouble and a fever on Monday night into Tuesday, but she seems to be feeling good today and is eating well. Yesterday she did not have much of an appetite, but she did drink well. It was good to be causious in having her away from Abby, but we are all glad to be back home this afternoon. We appreciate that Grandma and Grandpa dropped everything to come and help with Abby and Eva and that Oma and Opa opened their house to the be the "sick house". Now hopefully we are all well and will be able to enjoy the spring without any more colds. Thanks for praying.
More tomorrow...
Love, Heather
Tuesday, April 15, 2008 11:56 AM CDT Clare began running a fever during the night again last night. She tried to sleep with us for the second half of the night, but she really couldn't get comfortable. I couldn't sleep so I got up and showered really early, packed up our stuff, and took her to the ER in Shakopee around 7:30 this morning. They checked her urine, throat culture, ears and looked her over for any signs of infection, but all the cultures came back negative. It seems that she must still be getting over the bug that started last week or something. So, we are at Oma and Opa's house again and per the advice of her peditrician will remain here for the next 24-48 hours to see if the fever comes down and if she starts to feel better. Poor little pumpkin. Abby and Eva seem to be doing just fine (thank God) and we want to protect them from getting this if possible. So, we will wait and see how Clare feels. For now I will provide the TLC that she needs and hope for a quick and full recovery.
Thank you to my neighbors who have been providing meals for our family the past week. We are so thankful as we haven't had much time for cooking with the ups and downs at our house.
Please continue to pray that Abby stays healthy and that she recieves the gift of a new heart soon. She really needs it very soon...I will go into more details later. But please pray.
Also, please pray for the family of Jack Corbo. He was also waiting for a new heart, but passed away and became and angel yesterday. This family is going through the most difficult time, please pray for them to have peace. These children suffer so much and yet they battle with power and remain joyous even until the end. I don't know his family personally, but I can relate to the road that they have walked and extra prayers are always welcome.
www.caringbridge.org/mn/corboboys
Love,
Heather
Thursday, April 10, 2008 11:41 AM CDT Happy Birthday to you,
Happy Birthday to you,
Happy Birthday Dear Clare,
Happy Birthday to you!
Dear sweet Clare,
You are 3 years old today! It was a wonderful and amazing day when you were born 3 years ago. At 10:07 AM our family was blessed with a beautiful 6 lb 13 oz baby girl. We named you Clare Elaine Ostlie and you have brought so much joy to our lives during the past 3 years. We love you so much.
Mama, Papa, Abby and Eva
Clare and I were able to come home last night, so all of the Ostlie 5 were sleeping under one roof again. Clare seems to be feeling much better, maybe just a little run down still. She is glad to be back with her sisters. Mark is home from work today to Clare's birthday. We are going to have stroganoff and cake tonight for dinner.
Thanks for all the prayers for Abby and Clare over the past days. We appreciate them so very much.
Love, Heather
Monday, April 7, 2008 9:14 PM CDT Abby came home today. I'm aware that her sleep pattern is off as she was sitting beside me eating chips and trying to explain why it wasn’t past her bedtime when I started writing this. She did have a three-hour nap today.
We’ve now have a little change in her cocktail of meds and a specialized monitoring device, but no real explanation for her short onset lethargy. The truth is that her heart has lasted longer that most professionals would have guessed. From now on she is not to exert herself; even if she feels like “running” or riding her tricycle, we need to hold her back from doing too much. It’s senseless to put unnecessary strain on that little heart.
Heather and Clare are staying at Oma and Opa’s for a few days. They both are now sick and since Clare is running a fever, we need to keep her clear of Abby. We all miss them, but this is the right thing to do. We always ask for prayers for Abby, but of course we welcome them for Clare and the rest of our family as well. Little Clare has a very tender heart and is old enough to know that she prefers her whole family to be home together. You’d have sworn her lip was about to fall off when she was asking to go see Abby at the hospital this weekend and was told no.
A child close to Abby’s room died this weekend. She asked me to explain dying today. I’m sure she’s asked about this before, but she approached the question kind of like she had learned a bad word and wasn’t sure if she should mention it. The way I explained was kind of like the opposite of being born. We all come into the world one day to be with our family and friends and we all die one day as well so that we can return to be with God. Over time, all of the people we love come to join us with God. She seemed to like that fact that dying is something that everyone does rather than a few unlucky people. She told me, though, that she thought dying was sad. I told her that it is sad for us because we miss the people that die and we wish that they could do more fun things with us. She quickly changed the subject to lunch to save me from continuing to try to explain something that I don’t understand. I’m easily distracted with food.
Thank you all for once again checking in on our little sweetheart. You are appreciated and your prayers and wishes make a difference in our lives.
God Bless You - Mark
Sunday, April 6, 2008 10:20 PM CDT Abby is still in the hospital tonight. Mark is staying overnight with her tonight and I am at home with Clare and Eva. She had a better day today and seemed to have more energy and better color in her cheeks. She has been eating well over the past 24 hours and all of her lab results have been good. Her calcium was a bit low, but nothing to be alarmed about. They are giving her some calcium in her hydration IV fluid so that should help. They have mainly been watching for any irregular heart rhythms over the past 48 hours, but so far there really isn't anything abnormal. This is a good thing, but it also makes it difficult to explain why she is having sudden changes in her energy level and color. More than anything it must just be that her heart is deteriorating futher and it causes her to have sudden drops in energy.
We don't know the plan for sure for when she will come home, but it will most likely be tomorrow. Since they haven't seen anything irregular to worry about there is really no reason that she can't come back home. So, hopefully she will be coming back home at some point on Monday. We will keep you all posted.
I need to get some sleep now, because sleeping on a pull out chair next to Abby last night was not exactly a restful sleep.
Thank you all for the prayers and well wishes. We appreicate it very much.
Love, Heather
Saturday, April 5, 2008 7:35 PM CDT First, thank you all for the prayers and warm wishes. Heather will be staying the night with Abby. Her strong appetite kept up all day. Tonight, I thought she looked good when I left. We'll see what the professionals say tomorrow, but I'll be surprised if she's not home by Tuesday.
I'm off to tuck in the other pumpkins.
God Bless and Goodnight,
Mark
Saturday, April 5, 2008 1:50 PM CDT Abby will be spending at least a few days at Children's Hosptial. She needs to be assessed for irregular heart rhythms etc..
Lethargy and nausea is her main symptoms. She ate well this morning and eventually perked up, but very little. She should be tired since she's been having trouble sleeping for stretches of more than just an hour or two.
When I saw her main surgeon today, he commented that she's a pretty sick girl. To me it doesn't seem that she's in a terrible spot, but it's possible that Heather and I simply are accustomed to seeing her swing up and down to unnatural degrees, so we have a different idea of what's normal or reasonable for her. She's a strong, joyful little peanut.
I pray we have good news to report soon.
Mark
Saturday, April 5, 2008 8:44 AM CDT We are taking Abby into the ER to see Dr. Singh, she had a hard night and is not feeling well this morning. Very lathargic and tired. We'll see what Dr. Singh has to say. Please pray that this is a short visit and we are able to come back home today.
Tuesday, April 1, 2008 9:55 PM CDT Today a special present was delivered to our doorstep. Here is the story...
My friend Erica was on her way over with her baby Caroline to have lunch with us. It was about 11:00 AM and Abby, Clare and I were sitting on the couch just beginning a cuddle and story reading time. We were also watching out the window for Erica to arrive. We spend about 45 minutes reading stories and during that time I never saw anyone pull in the driveway or deliver something. Then we went into the kitchen to start making lunch and I wasn't watching out the window so much. Erica and Caroline arrived at around 12:30 and when I went outside to greet them I discovered a gigantic box sitting on the sidewalk slab right in front of our porch steps. From the picture on the box it was easy to see that the contents of the box included a brand new PLAY HOUSE for the girls!!! Amazing! The following message was written on the outside of the box, "Smile, God loves you!" I immediately told the girls what was there. They were ecstatic! They wanted to know who delivered it and where it came from. All I could tell them is that "an angel delivered this special gift for my three best girls". Then they wanted to know if I saw the angel? Well I did not see the angel, and I can't imagine how I missed this delivery, but somehow this present was secretly left for us. All we can say is a huge THANK YOU to the angel or angels that delivered this most special gift to our house. We would certainly love to know who this gift giving angel is, so please is you are the angel drop me an email so that I can properly thank you for this gift. After Erica and Caroline went home, I got the huge box into our living room and girls and I set up the play house inside. I figured that it is still going to be several weeks before the snow and wet mud are gone, so we might as well set it up inside and start enjoying the fun! Well the girls love it! I got some great photos of them playing with it just after it was assembled, so I will post them tomorrow when I get a chance. This special play house is going to provide many hours of pretend play and great memories for the girls and us parents. Thank you from the bottom of our hearts. Thank you, thank you, thank you!!!
Abby had a pretty good day today. She has taken to having a morning nap these past few days. It really seems to help her get through the day and not be exhausted at certain points. Today she wanted to lie in her bed around 10 am and she couldn't quite fall asleep but had some good quite rest time, which I think she needed. It just helped to put the pep back in her step. She did not throw up today, which is good. Her eyes looked a little dark to me and her skin color was a bit grayish, but otherwise she seemed to feel pretty well today.
I actually have lots of new pictures to post, but I just haven't had a chance to connect the power cord from the camera to the computer and upload them. I will try to make that a priority tomorrow and get some new photos on the site. Enough of the snow photos, uhggg!
In closing, throughout this journey with Abby and her heart we have truly encountered many people who I believe are "angels on earth". There are so many good, honest, loving, sincere people that live among us as family, friends, neighbors and also strangers. We have been so fortunate to meet many of these "angels" and are blessed by God for having them touch our lives. To all my dear "angels" we love you!
Love, Heather, Mark, Abby, Clare and Eva
Monday, March 31, 2008 10:22 AM CDT It was an ok weekend.
Friday was my birthday and that was a nice day. Mark took the day off from work. My Mom and Dad (Oma and Opa) came over in the morning and made a cake for me with Abby and Clare's help. They made a carrot cake because that is my favorite. The girls did a lot of "tasting" during the process and they both really like the cream cheese frosting. Then my Mom and Dad took me out for lunch and little shopping while Mark hung out with the girls. Then in the evening Mark's parents came to watch the girls so that Mark could take me out for dinner and a movie. We struck out on the movie as we got there to close to start time and there was only front row seating left, so we decided to skip it and avoid having sore necks for the next few days. I told Mark that we clearly are not "Friday night date savvy" anymore. Then we didn't know what to do, so we wandered around the bookstore for a little while and then decided to rent a movie instead. We got "Dan in Real Life" with Steve Carrell (thanks for the recommendation Teresa) and it was great. Lots of laughs and even a few tears. Good movie.
Saturday and Sunday Abby was really not feeling very well. Her tummy has been upset a lot lately and she has been throwing up again. We gave her the new diuretic on Sunday to help with any extra fluid that may be residing around her tummy, and she has been peeing a lot, so hopefully that will help. Just in general I have noticed that her energy level is lower. For example, last year in the fall she could walk around our block outside, but yesterday when we were outside in the morning she only made it around maybe 1/4 of the way and then she wanted to be carried back home because she was too tired. It is these types of things that make me aware that things continue to deteriorate for her. There really isn't anything we can do to help with that. We can just make sure that she is getting plenty of rest and keep her healthy. Those things are so important.
Today we will be laying low inside as it is SNOWING again! Ahhhh! I am so tired of this winter weather. I know that it is supposed to warm up by mid-week, but this is ridiculous.
One request...does anyone have an outdoor playhouse that they are considering getting rid of? We would really like to get a playhouse for the girls (you know the Step 2 or other plastic kind) so that they can play here in our own yard this summer. It is not that wise for us to take Abby and the girls to the parks because of the germ exposure, and it is also nearly impossible for me to take them on my own because I don't have enough hands. Mark and I started doing a little research on these playhouses, thinking that we might get one for Clare's birthday on April 10th, but they are really expensive. So, if you know anyone who is thinking of selling one, let us know.
Have a great snow day!
Love, Heather
Tuesday, March 25, 2008 3:26 PM CDT Yesterday afternoon I was reminded of just how fragile my little Abby is. After lunch I took the girls out for a walk (they ride in a triple jogger stroller and it has a weather shield so they are nice and snuggly). We walked for about 30 minutes and then came back home. Abby and Clare wanted a little snack before lunch, so they were sitting at the island having their snack when Abby said "Mom I am just sooooo tired." I told her that we would head up for a nap in just a few minutes. So, I got Eva's bottle ready and told the girls to head over to the stairs. Abby said that she didn't know if she could walk that far because she was just too tired. I thought that she was just being dramatic (because she tends to be that way sometimes) so I said come on Abs just keep going. She was sluggish on the stairs (I carry her pack for her obviously). Half way up the steps she just sort of collapsed down and said she was too tired to keep going. She was looking very pale and bluish around her nose, eyes and lips and got very diaphoretic, so I quickly grabbed Eva (because she was climbing in front of me) and ran her up the steps and put her in her crib so that she would be safe. Then I ran back down the steps and scooped up Abby. I took Abby into her bedroom and tried to assess how serious the situation was. She was still responding to me, so that was a good sign. I got her ready for her nap and tucked her in and she fell asleep within seconds (meanwhile Eva is screaming in the next room because she doesn't want to be in her crib while there is obviously drama going on). Then I rescued Eva and brought her into Abby and Clare's room. I got Clare ready to nap and tucked in and then gave Eva her bottle while I watched Abby. Abby didn't seem to be having distressed breathing or anything like that, but she didn't look very good color wise. I tucked Eva in and then got a hold of Mark to talk with him about the situation. We decided that I would just keep watching her with my phone handy (in case I needed to call 911). After about 20 more minutes of sleeping her cheeks started to pink up in color and she looked better. I keep a watchful eye on her for the rest of her nap and when she woke up after 90 minutes of sleeping she said that she was feeling a little bit better. By the time Mark got home at 7:00 PM she was running and giggling with Clare and Eva again. This was a scary incident because I just can't predict which way things will go. All the while in my head I am plotting who I will call to take care of Clare and Eva if I need to rush to the hospital with Abby. I was so relieved that she was feeling better after her nap. Like Mark said last night, she is waiting for a heart transplant and we have to truly appreciate all the time we have with her when she is feeling good, because it is a fine line that we are living right now.
Thank you to Cathy Gould for the beautiful bracelet that you sent to me. It is a silver bracelet that says "A mother holds her children's hand for a short while, but their hearts forever." Thank you so much, I love it!
Also, I forgot to mention that the DECA students from Chaska High School who planned and executed the Dance Is in My Heart Benefit for Abby took 1st place honors with their DECA presentation/project at the State Tournament! Congratulations Sydney Wolf, Abbey Goedert and Blain Beady! Your generous and outstanding work is very appreciated.
Love, Heather
Monday, March 24, 2008 11:51 AM CDT We hope that you all had a wonderful Easter. It was a great day here at the Ostlie house. The kids woke up in the morning yesterday and came down to find that the Easter Bunny left them some great baskets full of little gifts and had hidden many eggs for them to hunt (all inside of course, because of the snow). Abby and Clare both kept saying that it was "the best Easter ever"! So they had a fun time. We had Oma and Opa, Grandma and Grandpa, my brother Michael and his family and Mark's sister Angie over for Easter dinner. It was very good and we were all stuffed to the brim. There are lots of leftovers that will be great today.
Abby is feeling really good. Nurse Lori (our favorite) was here this morning to draw Abby's labs and she said too that Abby looks great and that she seems to feel wonderful.
We did get outside a few different times this weekend to play in the snow. I took Abby and Clare sleding down our backyard hill on Friday and Mark took them out and they built a snowman on Saturday afternoon. Clare would be outside all the time if she could. Abby gets a little bit cold, but she is quite a trooper. She loves to lay down in the snow and make snow angels. They are her favorite.
What else...hmmm...I just can't think of anything else new to report right now. Abby, Clare and I will be cleaning the fish tank today because their fist ACE (stands for Abby, Clare and Eva) is living in a mucky world right now. We also might get out for a little walk when Eva wakes up from her nap. Just keeping things low key around here.
Keep praying for the new heart!
Thank you to Mrs. Pam's preschool penpals for the Easter gifts for the girls. That was so very kind of you all!
Love, Heather
Thursday, March 20, 2008 10:02 PM CDT Happy Spring to everyone (or return of winter as the weather forcast suggests). We are looking forward to this wonderful Easter weekend and celebrating the resurrection of our savior Jesus Christ. We have been missing our church and attending service very much during the past months. We just can't take the risk that one of us would pick up an illness at church. We will celebrate at our house on Easter Sunday with our immediate families. It should be a nice day and of course there will be more food than any one family could ever eat! With the snow that is coming the kids will be hunting for eggs inside, but that will be just fine with them. They have been carrying their baskets around and practicing finding the plastic eggs that they hide all over. I am sure that I will be finding eggs for the next couple months. We hope that you will all enjoy a wonderful Easter weekend with your loved ones.
Abby has been having a great week. She has not needed any of the extra diuretic this week and her tummy is soft and not swollen. She has been eating really well and seems to have good energy and pep. We have been able to get out for a walk almost everyday this week. They all love being outside and it makes all of us feel good. Clare would be outside all the time if it was possible. Eva is a little scary outside, because she is still getting used to wearing her new sneakers and she is wobbly on her feet. I worry that she will take a nose dive right onto the sidewalk. It probably will happen at some point this spring, but I will try to prevent it if possilbe.
I honestly don't have much more to say right now. We are just enjoying this time together with Abby feeling well and the girls having a great time together. Abby and Clare are really enjoying playing some new games together that my friend Tammy brought for them. If you have kids this age and need some new game ideas these are two good one. Cariboo (a Cranium game) and Cookin' Cookies. Thanks for the great games Tammy.
Also, thank you so much to Kim Sobota for the wonderful box of games and activies that you sent for the kids. Kim runs a VERY organized daycare and she sent us lots of ideas for things to do! It is awesome!
Please keep praying for Abby's special heart to arrive soon. It would be the perfect time as she is strong and healthy.
HAPPY EASTER!
Love, Heather and family
Sunday, March 16, 2008 9:30 PM CDT Hi everyone,
Just a quick update tonight. Eva had a hard weekend. She had her one year well-baby check-up on Thursday and had her standard immunizations. However, she had a very bad reaction to the immunizations and ran and 103 temp for three days and now has a rash all over her body. She feels a bit better today, but this has really taken the wind out of her sails. So sad. I will make another phone call to her pediatrician tomorrow morning and see if there is anything that we should be doing for her, or if this will just need to run its course. Our normally happy baby has been sad this weekend.
Mark and I were able to get away for a few hours on Saturday to have dinner with his parents and siblings/spouses. We went to Axel's in Chanhassen. It was part of our Christmas gift from his parents. The food was fabulous and it was nice to catch up with his family as we have not seenn some of them since Thanksgiving. This was all made possbile by our dear friend Kathy Meyer that we met at St. Gerard's Catholic Church. She came down to our house to take care of the girls while we went to dinner. Thank you Kathy from the bottom of our hearts.
Last thing for tonight...the little boy that I told you about last week, Luke Haberman, who was diagnosed with HLHS now has a CB site. It sounds like they will be determining his first surgery date tomorrow. This family could really use all of our prayers and support during this difficult time. We HAVE walked in the shoes of these parents, almost 5 years ago when Abby was born. It can seem like a lonely and difficult road, but with support it is so much better. Please, if you have time, check in on their website and give your support.
www.caringbridge.org/visit/lukehaberman
Thank you.
Love,
Heather and family
Wednesday, March 12, 2008 8:11 PM CDT It is a small world.
Tonight a neighbor and friend of my mine, Katie Tierney, called me and said that she needed to talk. Her newborn (born today)nephew, Luke Haberman, was diagnosed with Hypo Plastic Left Heart Syndrome. A few hours after he was born doctors detected a heart murmur and after an echocardiogram they diagnosed HLHS. Obviously his parents and relatives are devastated, heartbroken, and scared. He was airlifted to Texas Children's Hospital in Houston. I gave Katie as much information as I could that might aide her sister and brother-in-law with the events that will occur in the next days and weeks for their baby Luke. I probably gave too much information, but I just recalled as much as I could remember from our first days with Abby. The family does not yet have a CaringBridge website, but I will let you know if they get one set up. For now, please pray for baby Luke and his family, they could really use many extra prayers during this difficult time.
One last thought, doesn't God work in mysterious ways? Was it just a coincidence that 4 years ago I met Katie and her children when I joined Mom's Club here in Chaska? Or did God know the larger plan that Katie would help support me during difficult times with Abby and that in turn I would repay that favor by supporting her when her nephew Luke came into the world! Food for thought. Our lives definitely have a purpose and I do believe that the purpose revolves around the very important concept of serving others, supporting others, loving others, and having faith together.
Dear God, Hear this prayer for baby Luke and all the children in need of healing this night...
Our Father, who art in heaven,
hallowed be thy name.
Thy Kingdom come,
thy will be done,
on earth as it is in heaven
Give us this day our daily bread.
And forgive us our trespasses,
as we forgive those who trespass against us.
And lead us not into temptation,
but deliver us from evil.
For thine is the kingdom, the power and the glory, for ever and ever. Amen
Goodnight everyone.
Love, Heather
Tuesday, March 11, 2008 4:49 PM CDT What a beautiful day!!! Awesome!
I took the girls outside for about 2 hours today and they had so much fun. I got out all the sand toys and they shoveled the snow and made snow castles. It was great. Abby pushed her pack in the baby doll stoller up and down the sidewalk. She was so tired that she just layed down in the snow and told me that she was going to take a nap. (see the picture on the next page). Mark was able to come home a little early today (he just pulled in the driveway) and the girls are just waking from a 2 hour nap, so we might put them in the triple jogger stoller and head out for a little walk after dinner. What a fun time getting some sunshine on our faces today. The picture on the home page was the best one I got because they kept complaining that the sun was too bright to look at the camera.
So much fun. Yeah!!!
Love, Heather
Monday, March 10, 2008 5:27 PM CDT Hi everyone,
Sorry that it has been so long since a decent update.
Here is what has been happening during the past week...
Our main focus has been getting Abby's diuretics and potassium balanced out. We started her on a new diuretic (in addition to the IV one that she already gets) because her abdomen started becoming very distended (puffy) and we could tell that her liver and abdomen were full of fluid. After a few days of the new diuretic we found that it was too strong. It was making her pee like crazy and she was losing potassium quickly and becoming dehydrated. So, we backed off on the regimen and decided to give the new pill only every 5 days. Well even that seems to be too much. Last night Abby had 8 wet diapers during the night and she got very gaggy and felt like she was going to vomit, which are signs of being dehydrated. Mark and I were both in the girls room at about 4:30 and I was trying to get Abby to eat a graham cracker just to get something in her stomach. Of course Clare wanted one also, so we spent about 30 minutes in their while they ate graham crackers and looked at the stars out the window. It was actually kind of fun even if we were all tired today. Then after speaking with Dr. Singh again today, we will now try half a pill every five days (instead of a whole pill) and see how that goes. She is also taking a oral potassium supplement on the days that she gets this diuretic pill. Other than trying to get the fluid status in check Abby has been doing really well.
Two Sundays ago we had a bit of drama at bath time. When the tub is draining (this is our big whirlpool tub) the girls like to sit in it and keep playing and splashing until all the water is gone. But, Clare tried to turn the drain so that it would close, because she didn't want the water to go out. Well, she stuck her middle finger in the drain and it slipped past her knuckle and got stuck. Then with the water and suction of the tub it was pulling down on her finger. I tried to pull the drain up higher so that her finger could come out, but I panicked and couldn't pull hard enough. Luckily Mark was just in our bedroom getting Eva dressed so he ran in and just cranked the drain up and her finger came right out. The drain was actually bent at about a 45 degree angle...that is what strength and adrenaline will do for Mark. Clare's finger had a small cut on it and got fairly swollen, but it was not broken. A little ice and a band aid and all was well. You should hear her tell the story...her bottom lip sticks out so far that a bird could land on it.
We had a nice time this weekend celebrating my nephew Benjamin's 6th birthday. We drove over to Somerset, WI where my brother's family lives and spent the day at their house. It is hard to believe that Ben will be six on March 15th. It seems like just yesterday to me that he was born. That was such a special night and one that I will never forget because I got to be there for his birth.
Last week I cooked several new meals for our family that were sent in on the guestbook. I made Dani Brower's Bacon Cheeseburger Bake, Becky Irlmeier's Crock-pot Chicken, Tami Merrill's Hamburger Rice Hotdish, Carla Barziza's Italian Pot Roast, and Sarah Heyer's Chicken Tettrazini. They were all very good and I will definitely be making them all again. But, Sarah's dish was the family favorite of the week and I think Abby even asked for a third helping. Thank you all so much for sharing these recipes. I really enjoy having new things to make. I have a new group of recipes to try out this week, so I will let you know how it goes. If you have a great recipe that is your family favorite, but have not posted it yet, please write it down in the guestbook.
Thank you to Leanne Schuetz for sending the great Busy Toddler and Busy Preschooler books. I am enjoying them so much. These books have great ideas for activities that you can do with your kids. Many of them indoors, which is where we still remain until the weather warms up a little bit. Today the girls and I made homemade bean bags. They each picked their favorite fabric and I sewed them and they filled them. I found a great poly bean fill that is used for dolls and beanie babies. It can be machine washed, which is great if things get dirty, because real beans will rot. I got the filling at Joann Fabrics. Then we set up a beanbag tossing course in the living room, which consisted of laundry baskets and other large bowls from the kitchen. It was really a good time. Even Eva got the idea.
We sort of skipped nap time all together today, so I am forcing everyone to have 45 minutes of quiet time right now. It is not going well. Clare has been laughing really hard and keeping Abby awake and Eva has been crying in her bed because she keeps throwing her blanket overboard. It is my own fault for not laying them down earlier, but I do think the time change threw us off. I just want them to rest a little bit so that they won't have a complete meltdown before bed tonight.
I can't remember what else I was going to write in their journal entry. Easter is quickly approaching and it IS a time for miracles. Please pray for Abby's miracle new heart to arrive very soon.
Love you all and thank for taking this journey with us.
Heather
P.S. To the Mitchell family, thank you for the beautiful bulb garden that you sent. The girls are so excited to see what kind of flowers it grows. What a great idea. Happy Easter!
Friday, March 7, 2008 6:52 AM CST Wow a whole week has gone by and I haven't written an update. I guess that things have just been status quo at the Ostlie house this week. I have a few things to update you on, but I can hear Abby and Clare starting their morning chatter in their room, so I better go and see what the little monkeys are up to.
Thank you to the Chaska-Victoria Moms Club for your generous gift to our family of donating the proceeds from your rummage sale/vendor boutique to Abby. You are all such thoughtful women and I miss dearly being a part of your wonderful organization. Someday, when life returns to "normal" for us I hope I can once again become a member.
If you are interested in attending the Chaska-Victoria Moms Club Rummage Sale/Vendor Boutique it is being held this Saturday, March 8th from 8-10 AM at the Chaska Community Center. For more information you can contact Jenny Potter at jennifer_potter22@yahoo.com.
I will update more later and fill you in on our happenings of the week. Thank you for checking on Abby and praying for her and our family. I love reading your guestbook entries. They really brighten my day.
Love, Heather
Friday, February 29, 2008 12:15 AM CST Just a quick thank you...
Thank you Becky, Chuck and Emma Erlmeier for the package that you sent to Abby, Clare and Eva. It just arrived and the girls had so much fun opening it! They love the stuffed animals and the books are going to be perfect. Clare already punched the paper doll Barbies out of her book and she and Abby are playing with those as I type this. What a thoughtful and fun surprise to get in the mail today. The looks on their faces were priceless when they were anticipating what would be in the box. Thank you so much for your kindness. I told them that it came from a special girl named Emma who lives in Iowa. Hopefully they will be able to meet her someday.
More later...
Love, Heather
Thursday, February 28, 2008 4:30 PM CST A new day always brings me a sense of calm and freshness. I started the day much better this morning than when I fell asleep last night. Sleep was restless for me, but I did awake much more peaceful than last night. I still had a headache this morning, but that was just from crying too much yesterday. Two Advil and the headache was cured. Abby was the first one up today and even though Clare woke up she said that she wanted to sleep some more. I brought Abby downstairs and she and I had a little breakfast and coffee (for mom) together. She is beautiful (I know I am her mom, but that gives me bragging rights). I like to look at her face in the soft light of morning, when her cheeks are rosy from sleep and her hair is still messy and her eyelashes look damp still. What a wondrous sight. This morning was busy because it was a triple IV bag change day, plus her other IV meds and oral meds. It was good that we were up first because we got a lot of it done before Clare and Eva awoke.
While we were sitting at the counter having breakfast Abby picked up my cell phone and said I want to call someone. I asked her who she wanted to call. First she said Grandma, and I told her that it was only 7:15 and Grandma would still be sleeping. Then she said Oma, and I told her also that Oma would still be sleeping. Then she said to call Aunt Pammy. I said ok dial her up (someone would be awake at their house). She called and cousin Emma picked up the phone. They talked for a few minutes and then Emma took the phone to Aunt Pammy. Funny thing was that Aunt Pammy had just been dreaming about Abby. So before the conversation was ended it was decided that Aunt Pammy and cousin William were going to come over for lunch. That was something fun to look forward to this morning. They came for lunch and the kids all had a great time. It was nice to have Pam here to chat with and just for the company today.
I also put in another call to the Transplant Coordinator at the UofM, Paula this morning. She called back a little after 2:00 this afternoon. We had a good conversation. At first I think that she was a little defensive and maybe felt like my questions seemed invasive or accusatory. But, after we talked a little while she softened up and I think that she understood more where I was coming from. I told her that my main purpose is just to be the best advocate that I can for Abby. That is my job as her mother. I also want to understand the transplant system, how the listing process works and where Abby really is on the list.
Here are my take aways from our conversation. Abby is still listed as a 1B. She is the only 1B with her blood type and weight range in our state and region, and there are no 1As with her exact weight range in our region. The other little boy in the hospital is a 1A and is the same blood type, but he is smaller than Abby and so they have different listing criteria for weight and the age range of heart that they could receive. So they are NOT competing for the exact same organs. There may be some overlap, but Abby could receive a much larger heart than he could. We both agree that it is best for Abby and our family to keep her at home as long as possible and Abby does not need to be hospitalized at this time.
Another interesting thing that I learned is that to be listed as a 1A you must be in the hospital and the doctors must agree that you may not have more than two weeks left to live. As a 1A you must have your status renewed every two weeks. So, last year when Abby was listed in the hospital as a 1A she had to have her status renewed every two weeks and they felt that she was more critical than she is now. Paula also said that if we felt that Abby was slipping a little what we could admit her to the hospital and have her status elevated to 1A and try changing some medications and other therapies, but that she could be discharged again if necessary. So, it seems that we have some options available if we need them.
Also, Paula explained that if a heart becomes available in our region and it was a match to Abby in blood type, weight and antibodies she would get the offer first before it would be offered to anyone else in the country, even if they are listed as a 1A. The entire listing and receiving process is complex and I am starting to understand it better through conversations like this.
Last, Paula said that there have been two offers for Abby since January 1st. But, when the donor hearts were evaluated by the transplant surgeon they were turned down, because the donor heart was not "pristine". I have mixed emotions knowing that there have been offers, but it is good information to know.
So, after our conversation I hung up the phone rather relieved. I don't feel so "in the depths of despair" after that conversation. Paula also assured me that she feels confident that Abby will get a heart. She has been doing this for a long time and she has never had a child die yet while on the waiting list. Knock on wood that this trend continues. Please pray that the perfect heart comes soon. Everyone knows that Abby needs a new heart and that now would be the best time while she is strong and full of fight.
Thank you all so much for your wonderful guestbook entries and phone calls. I appreciate them so much. It does raise our spirits to know that you are walking this journey beside us and holding us up when we need it most.
Thank you to my best girlfriends Chris, Katie and Stef for the wonderful edible art fruit basket. It is beautiful and we will enjoy eating our art.
Please keep raising Abby up in your prayers. I believe that it will help, maybe not get a heart sooner (for God does have a plan) but it helps to keep us all strong.
Love and thanks to you all,
Heather
Wednesday, February 27, 2008 3:42 PM CST Update as of 5:37 PM
Dr. Singh just called again with a new recommenation for the medications. So, we have a new plan for the diuretics and postassium. We also talked a bit more about his conversation with Dr. Braunlin today. There is another little boy on the transplant list right now in Minnesota (I am not sure if I mentioned this before or not). He is in the hospital right now and so he is listed as a 1A. He is the same blood type as Abby, O positive. They are also somewhat close in weight. So, this means that he will get the heart offers first, before Abby. Even if we were to put Abby in the hospital and elevate her status to a 1A, he would still be first because he was listed as a 1A first. This is a terrible thing to think that our child is essentially "competing" for a heart. Dr. Singh asked if he could just be really frank with me. I said of course. He said that even if putting Abby in the hospital would get her to 1A status he would not recommend that, because we still don't know when or if a heart will ever become available for her. He feels (and is correct) that her quality of life is much better at home with her family. Then he said the hardest thing for a parent to hear, "it would be better for her to have her pass away in your arms at home than in the hospital". I can't stop the tears...
Update as of 3:42 PM
We returned from the farm a few minutes ago. We had a nice lunch with Grandma and Grandpa Ostlie. They are in the middle of a painting project and we did a good job of interrupting their progress. They were glad for the break. The girls even got to put their handprints on the wall in paint and they thought that was wonderful fun. All three of them fell asleep in the car on the way home and then I carried each girl up to her bed and now all are sleeping again. I got my exercise for the day with three trips up and down the steps holding my 30-40 pound human weights. Abby actually thinks that she is not tired anymore, because she slept 10 minutes on the drive home. I am trying to convince her otherwise, because she could really use the rest. Well see what happens...
Anyway, I wanted to update again because Dr. Singh called me on our drive out to the farm today. He was wondering how her new diuretic (Metolazone/Zaraxolyn) worked yesterday. I told him that I didn't think it worked very well at all and that she actually peed less on that drug than the one we have been on (Edecrin). Then he said, "well I didn't suspect that it would work but it was worth a try". So he didn't have high hopes for the new drug working, but we tried it just incase. So now we will go back onto the twice a day IV diuretic (Edecrin) and also give her the new one once a day. He feels that maybe with the combination of drugs we will see some results getting the fluid off and reducing the size of her liver. The bummer is that both of these diuretics are potassium wasters, so she will most likely need a potassium supplement. This is a super yucky oral medication. So, Dr. Singh is going to look for it in hard pill form so that she can just swallow it and not taste it. Hopefully we won't need it at all, but chances are that we will.
Dr. Singh also called because he spoke with Dr. Braunlin (U of M cardiologist) just to let her know how Abby is doing. As he explained to me, it is difficult to see any change in her heart function on the echocardiogram because it is already so poor. This way of looking is hard to see differences when the heart is already functioning as poorly as possible. He stressed to Dr. Braunlin that Abby is not just stable at home, but that she is deteriorating and that we need to get her a heart soon. I immediately asked if he felt that she should be in the hospital. Because being in the hospital would increase her status to a 1A, rather than a 1B. He said that he would like Abby to remain at home for as long as possible, because she is happiest and healthiest here. Mark and I agree. However, Dr. Singh said that we do need to be considering the next steps, if a heart does not become available for Abby very soon. At this I just have lots of tears, because I can't do anything to help get her a heart sooner. Dr. Singh said that if he could buy her a heart he would have already done it. That is just not the way this works. He also wanted to give me a heads up that we may at some point be presented with the idea of a machine that works as an artificial heart. I have not looked into this at all, but I guess that a little boy in Boston was put on this type of machine to attempt and prolong his life long enough to wait for a new heart to become available. Again, this is not something that Abby needs now, but her heart is failing and it may be a choice we are faced with in the future. I have a feeling that Dr. Singh is not in favor of this way to sustain life, because he does not feel it provides "good quality" and I am sure there are side effects that may become apparent after being on this type of machine. So, all in all Abby is not stable. Her heart is very delicate. She needs a new heart soon. What we will do next I don't know. Dr. Braunlin was supposed to call me today, but I haven't heard from her. I called the transplant coordinator 9 days ago and still haven't received a phone call back from her. Very frustrating.
This entire situation is beyond difficult and sad. Our beautiful Abby needs new heart and that is one thing that no amount of money can buy. So we wait, and wonder, and pray, and love her.
For me it is hard to fall asleep at night. I worry about Abby. I am afraid that one day I will go in her room in the morning and she will have passed away, her little heart just giving up the fight. Or that something like this will happen during the day when I am home by myself with the three of them. How would I explain to her sisters? What would I do? As I type this tears are just streaming down my face. I am tired. I do not feel strong. But, I must be strong for my sweet babies and my family. I have faith, but it is being tested to the extreme right now.
Pray for Abby's new heart to come soon.
Clare just came in the bonus room to tell me that she pooped! Ha, the comic relief that I need at this moment.
Gotta go change a diaper and get on with the day.
Please pray.
Love, Heather
Wednesday, February 27, 2008 9:08 AM CST Hi everyone,
Sorry for no update yesterday. I was just too tired when the kids finally got to bed last night. Abby is fine. Her heart looks about the same as the last echo. Dr. Singh changed one of her medications (diuretic) so that hopefully she will be able to get some of the fluid off her abdomen. He thinks that maybe her body had become somewhat resistant to the other diuretic. Well see if this helps. Otherwise she is stable. This is going to just be short update. I am feeling rather sad and tired today and just don't feel much like typing. I am going to take the kids out to the farm (Grandma and Grandpa Ostlie's house) to have lunch today. Maybe that will help my spirits.
More later...
Love, Heather
Tuesday, February 26, 2008 7:47 AM CST I am taking Abby to see Dr. Singh this morning. Her tummy has gotten very distended over the past week. Since two weeks ago the girth of her abdomin has grown 8 cm and her weight is up to 17 kilos from 15.6 kilos we are going to try and figure out what is causing this. Most likely an enlarged liver because her liver is not getting adequate blood flow. I will update after the appointment this morning. Mark is home with Clare and Eva. Sorry for spelling errors in this entry I didn't have time for spellcheck.
Love, Heather
Thursday, February 21, 2008 6:12 AM CST This is my first update for the week, because I just haven't had much to say. Abby has been feeling pretty good. She seems more tired this week than last week, but her vital signs (blood pressure, O2 level, temp) are all still consistent and in an acceptable range. I guess that all kids go through growth spurts and times when they just need more rest, so maybe that is what she is going through this week. Clare and Eva are doing well also. Eva is kind of driving me nuts (in the most sweet way) because she grunts and points at everything and anything to try and communicate what she wants, sees and feels. I know that this is just a passing phase, because soon the words will begin to pour out of her mouth, but in the mean time communication can be tricky and frustrating for both of us. Mark and I did teach all the kids some sign language before they could talk, so she does sign a few things and that helps. She really is the sweetest baby, well more like a toddler, which makes me sort of sad because she is growing up so fast.
Today my good friend Teresa will be coming to our house to watch the girls for a while. So, I will run around like a crazy woman to try and get my errands and shopping for the week done. I may even try to find time for a paraffin wax on my hands. They are literally cracked and bleeding and so sore from all the hand washing that I do and because it seems like with three little ones my hands are in water very often. Winter is tough on our skin anyway and with our obsessive behavior trying to stay healthy my hands have really taken a beating.
I think that Mark and I have both been very anxious for Abby to get her new heart this week. He has even said a few times when we are getting ready for bed that we better "sleep fast" because the phone IS going to ring tonight. Very wishful thinking and it obviously hasn't happened yet. Even Clare is joining us in wishing that Abby would get her new heart soon. We were having french bread and spaghetti for dinner the other night and I buttered her bread for her. When it started to melt she said "mommy look, my butter is in the shape of a heart!" And then in the most excited 2 year old voice she said "that must mean that Abby is going to get her new heart tonight". So adorable. Please keep praying. Like Dr. Singh said this week, she sure needs that new heart soon, while she is still strong and full of energy and spunk. Keep praying. Pray, pray, pray!
Dear God,
Thank you for the gift of our beautiful family. Thank you for teaching us patience and thank you for the family and friends you have given us to hold us up while we wait. Please continue to bless Abby with strength and good days while she waits for your gift of a new heart. Please protect her from illness while she waits. Hear our prayer that she needs her new heart soon and grant our prayer. Give us all renewed energy and spirit to keep waiting in anticipation that only the best results are in store for Abby and our family. Continue to love us and bless us and all those that surround us on this journey.
Amen.
Love from our house to yours,
Heather, Mark, Abby, Clare and Eva
Thursday, February 14, 2008 10:43 AM CST HAPPY VALENTINE'S DAY!
Take time today to say "I love you" to the special people in your life.
Many of you have emailed me over the past several months, and I have been trying to keep up with them, but sometimes I just fall behind. If I haven't responded, please understand that I just don't usually have a lot of time for that sort of thing. I will try to respond to all of you and I appreciate the emails so much. If you do need to get a hold of me please give me a call. I have put my phone number at the bottom of Abby's webpage. It is ok to call, and if I can't pick up the phone at the moment I will just let it roll to voicemail and then call you back.
Thank you so much to the students at Clearwater Middle School in Waconia for doing a fundraiser for Abby. We appreciate your help so much! Thank you Kristin Stivers for thinking of this event and getting the student council to plan it! You are wonderful students and we are so thankful.
I am sure that we forget to thank people along the way in this journey, but please know that we thank you from the bottom of our hearts, even if we don't tell you in person or have time to send a thank you card.
To my husband Mark...I love you so much honey and I am so glad that you are my husband. Thank you for loving me and walking this journey of life with me. Happy Valentine's Day!
Love, Heather
Wednesday, February 13, 2008 4:11 PM CST A year ago today our dear Abby became critically ill and was airlifted to Children's hospital in Minneapolis. Little did we know at the time what the next months and year would bring, but that day was one of the scariest and saddest days of our lives. Abby almost entered God's kingdom that day one year ago, but it was not her time. She courageously fought for the following five months to get well and strong enough to come back home. On July 2, 2007 she was able to come home at last. Her heart is still weak and now we are all waiting for a new heart to give a new beginning to life. I feel that God has great plans for her and she will get a new heart and make a full recovery after surgery. Waiting is the most difficult part. Maybe, as it was written in the guestbook, she will get her new heart tomorrow on St. Valentine's Day. What a beautiful gift that would be. But, she may not get her perfect new heart for many more days, weeks or months. We must all pray, pray without ceasing and with great enthusiasm that the perfect heart will be given at the perfect time and that Abby will live the life God intended. Please pray that she is able to remain at home until the perfect heart arrives and that she stays healthy and strong. These things will help her have a faster and easier recovery after surgery. Pray that all of our spirits will stay strong and that we will not lose heart and patience while we wait. Pray for all the other girls and boys that are also waiting for new hearts and other organs that will give them a second chance at a full life.
I must take this opportunity to once again say thank you. Thank you to everyone who prays for Abby and our family. Thank you for checking Abby's guestbook and encouraging us through our journey. Thank you for the financial and physical support that you have given to our family during the past year. Thank you for loving Abby and all of us. We are humbled and grateful by your generosity.
May this year hold great things for Abby and be much happier and brighter than last year.
Love, Heather
P.S. To my wonderful dance student JJ (Janae) thank you so much dear for your thoughtfulness. I miss you!
P.S.S. To Mrs. Pam's preschool class, thank you for the sweet Valentine's that you sent for Abby, Clare and Eva.
Tuesday, February 12, 2008 10:21 AM CST Happy Birthday to you!
Happy Birthday to you!
Happy Birthday Dear Eva!
Happy Birthday to you!
Eva Heather Ostlie is one year old today! Her birth was such a joyous event for our entire family. She was born at 9:41 PM a year ago today. She has blessed our lives with much joy and love during the past year.
Happy Birthday Sweetest Eva!
We Love You!
Mama, Papa, Big Sisters Abby and Clare
Thursday, February 7, 2008 2:37 PM CST Abby had her appointment at the U of M today. We started at 8:00 AM (left the house around 7:00 AM, which meant I had to wake Abby at around 6:00 AM). She had an echocardiogram, EKG, chest X-ray, lab work, and a visit with her U of M cardiologist Dr. Braunlin. It was a very full day. The tests came back showing that nothing has really changed with her heart. No better or worse. She did grow a little bit taller and also gained a little weight (hopefully this is all muscle weight and not fluid, but she doesn't look puffy so I think this is good weight gain). There have been no more offers for hearts since last summer. This is discouraging to me, but I just keep thinking that it just has to be because the perfect heart is coming and God doesn't want us to deal with having a "dry run" as they call it when a heart comes but then surgery is cancelled for some reason. Dr. Braunlin talked to me again today about how important it is to keep Abby healthy during her wait for a new heart. Today she said that even if Abby had a little runny nose the anestisiologist might not intibate her because of the risk. So, it is so important that we not bring any germs into our house or take Abby somewhere that would expose her without necessity. I can't tell you all how hard this waiting time is. I so badly just want to pack up the kids and take everyone to a waterpark or the community center or over to a friends house for a playdate. But, I know that this is a small sacrifice to pay for the gift of a new heart. This is God's test for me as a parent and I fully intend to pass with flying colors. So, I will continue to be the germ Nazi around our house. If you are going to be at the Ostlie household for any reason you MUST BE 100% healthy and this includes not being exposed to someone who is/has been sick recently. Dr. Braunlin thought Abby looked really great and I am proud to say that she even said "I think every kid waiting for a transplant should come live at your house, because whatever you are doing is working really well to keep Abby doing great". We will go back in 3 months to see Dr. Braunlin again, but I am praying like crazy that we get a heart well before that. Also, she approved that now we can have Abby's labs drawn just once every other week. Thanks to my mom for watching Clare and Eva while I was with Abby this morning, and thanks Beth for being flexible about my mom being late to work today. I appreciate your help so much.
Waiting with anticipation and worry is exhausting. I would really like to take a nap right now, but Eva is ready to play so I will go make some coffee and perk up!
Thanks for all the prayers. I read the guestbook everyday and I love to get your messages (even if you feel like you don't have much to write). The notes keep me going and it is nice to know that so many of you follow our journey and care.
Love, Heather
Wednesday, February 6, 2008 8:44 PM CST Mark made it home from work a few minutes ago, so he is tucking Abby and Clare into bed. We will be watching the KARE 11 Extra at 10:00 tonight to see Abby and how the story turned out. I think that it should be good. We will post a link to the story as soon as we have one.
Wednesday, February 6, 2008 11:23 AM CST Abby hasn't been feeling too good this morning. I think that the UTI and the new medicine is making her tummy feel sick this morning. She never threw up, but she has been complaining about an upset tummy all morning. I finally got her to eat some Saltine crackers, and that seemed to settle things down a little bit. Hopefully she will continue to eat little bits of food today and that will keep her tummy feeling better. Thank you so much to my neighbor Jenn for running to the store to get me some whole milk for Eva. I didn't check last night to see how much we had in the fridge and there wouldn't have been enough for the whole day. Mark is planning to work late tonight, so I won't have a chance to run to the store. I am so thankful to Jenn that I didn't have to pack the girls up and run today, especially with Abby not feeling well.
Tonight Abby will be on the KARE 11 EXTRA at 10:00 PM. I hope that you can tune in. It should be a very interesting story and the health care system and insurance. They were able to attend Abby's heart cath, so there will be some footage of that also. If you missed the FOX 9 story last night check our previous journal entry for the link to the webcast.
Anyway, I also wanted to share something with you all that I have been thinking about. Life is short. We have to make the most of the time that God has given all of us on earth. Yes, we do need to work, be responsible citizens and take care of the necessary things that make our lives and society function. But, beyond that we all have choices. We can choose our friends and who we associate with. We should all choose people that bring joy and happiness to our lives. Take a moment to think about this. Do the people that you call your "friends" really make you happy? Do they bring joy to your life? Would they help you when you need it and fulfill a purpose in your life? If you can't say yes to these questions then are they really your friends? Associating with people for status or because someone else wants you to or because you wonder what other people would think are the wrong reasons. But, if you said yes to the questions above then I believe that you have a true friend. Cherish your true friends. Tell them how much they mean to you. Do unto them as they would do unto you. Go above and beyond to make your true friends feel loved and appreciated. True friends are so valuable and these relationships are what make life worthwhile. Mark and I have been so fortune to have many true friends in our lives during this past year. They have helped us through the ups and downs and go above and beyond to keep us afloat. And when I speak of true friends, our family members are at the top of the list. We are very lucky to have close and loving relationships with our parents and brother and sisters. So, thank you to all my true friends, you make life better for me on a daily basis and I hope that my list of true friends keeps growing and growing over the rest of my life.
Thanks for listening to my thoughts and I will keep everyone updated on how Abby is feeling.
One last thing, I am sure that many of you have been watching the news and seeing the footage of the tornadoes that have happened in the south during the past few days. This morning I heard that the death total for Tennessee is at 42 people. I pray that all of these families will feel God's presence in their lives and find peace as they grieve the death of their loved ones. However, I also get a pit in my stomach when I wonder if these people are organ donors and if any of them are children. Only time will tell. Please pray.
Tuesday, February 5, 2008 9:28 PM CST If you missed the Fox 9 story, click here to watch the video.
I took Abby to her pediatrician today to have the blood in her urine checked out. They cultured her urine and her white cell count was very elevated, so they think that she just has a UTI. We got some new antibiotics that she will take for the next 10 days and that should take care of things. I am actually very relived that it is a UTI and not something much more serious. Thank you to my mom and brother's family for watching Clare and Eva while I took Abby to the doctor.
We just watched Abby on FOX 9 news. Ellen Galles did a great job with the story. I think that she and the photojournalist, Andy, really did a wonderful job (once again) of capturing Abby's spirit and love. Thank you to Ellen, Andy and FOX 9 for updating everyone on her wait for a new heart. It was fun to work with you again. If you missed seeing the story tonight, log onto www.myfoxtwincities.com and you will be able to watch the story online.
All the girls are sleeping now and Mark and I are headed that direction soon. Worrying about Abby today has really made me tired. I sort of went in to defense mode and now that I know things will be ok I am exhausted.
Thanks for praying for Abby. We will update again tomorrow.
Goodnight.
Tuesday, February 5, 2008 12:29 AM CST Quick update. Abby is having some issues with blood in her urine and heading into the hosptial to get this checked out quickly. Hopefully, we'll know what's going on and have a plan within a few hours.
Fox 9 will have her on at 9:15 tonight.
***********
Happy 28th Birthday to my brother Michael Paul Anderson!!!
(I need to embarrass him just a little bit!)
The girls and I are heading over to my parent's house to have some playtime with my brother's family on his birthday. It should be fun. They don't get to see their cousins very often and they always have so much fun playing with Benjamin, so away we go. This will be our big outing for the week. Yippee!
I haven't heard from Ellen Galles yet as to when Abby's story will be on FOX 9 tonight. I am guessing that it will be 9:00 news, but if you tune in and don't see her keep watching and you will probably see her at 10:00.
I have a very interesting revelation to share with all of you, but I don't have time to type it right now. I will try to get it in the journal when we return from our playtime this afternoon.
Have a great day!
Love, Heather
Monday, February 4, 2008 3:00 PM CST Abby's cold is all gone! She was really 100% again yesterday. I did not blow her nose all day and she has been sleeping well again at night. This is wonderful and we are so thankful that it only lasted about 2 weeks.
If you are able to tune in to KARE 11 today you will likely see Abby. They have been running promo spots for the story that airs Wednesday and Thursday this week. The girls and I saw the first one around 8:00 am this morning when we were eating breakfast. I haven't seen anything yet on FOX 9, but I know that Ellen Galles was going to be writing the story today. Abby has fun seeing herself on TV, but she wants to know why I can rewind and show it again. Because we only get the basic cable channels and nothing fancy, we watch a lot of DVDS, so they are used to being able to watch their favorite parts over and over. Funny!
We are so thankful that our heart friend Riese had a successful cardioversion today! Her heart is back on a regular rhythm and hopefully they will be able to return home today. This is great news!
Abby and Clare are napping and I just got done cleaning up Eva after her snack. She was having a pudding cup for the first time and she wanted to feed herself. Yikes! It was so messy, but I got some great pictures and then she got a sink bath out of the deal, which was so fun for her. Lucky for me it was vanilla pudding instead of chocolate.
Well, I hope you all have a great day.
Love, Heather
Sunday, February 3, 2008 4:50 PM CST Yesterday my mom and I went to the Sections Dance Team tournament at Wayzata. It was such a fun day. It was great to see lots of faces that I used to coach or coach with and the dance teams were amazing! Congratulations to my hometown team of Chaska for their first place finish in the High Kick competition and to Maple Grove, the team I formerly coached, for their first place finish in the Jazz Competition. Also, congrats to Wayzata who came in second in both categories and Eden Prairie who came in third in both categories. The skills and choreography get better each year and it was so fun to be there to watch. Good luck to all these teams at the State competition on Feb 15 and 16.
Mark had a fun day hanging out here with the girls and I sure appreciate the "day off". It is really good for the girls to get that one on one time with him so that they know he can do everything for them too. He might not do things the same as mama, but he takes great care of them. Thanks honey!
This morning, Ellen Galles from FOX 9 NEWS and camera man Andy were out at our house to do a follow-up story on Abby. They just wanted to check in with our family to see how Abby is doing and how all of us are doing while we wait for Abby's new heart. It was nice to talk with them and they got a full orientation to the world of princess play! Ellen was a great sport and jumped right in to help them set up the "princess dress store". Honestly, I don't really think the girls even paid much attention to the camera, there were too busy carrying on with their normal routine. Anyway, Abby's follow-up story is scheduled to air on FOX 9 on Tuesday evening this week. We do not know if it will be 9 or 10:00 news, but we will keep you posted. Then she will be on KARE 11 on Wednesday and Thursday night on the 10:00 news.
Tuesday: FOX 9 with Ellen Galles
Wednesday and Thursday: KARE 11 with Rick Kupchella
Probably not many of you will be checking Abby's website tonight, because you will be tuning in for the Super Bowl. I still don't even know which two teams are playing tonight...that shows you how much TV I watch. I hope that you all have fun cheering for your favorite team tonight.
Well, I better go finish getting super on the table. Stroganoff night at the Ostlie house.
Lisa - thanks for sharing your story about Sarah. I know that Abby will be fine even if she can't run a mile in middle school, but sometimes it is just harder to swallow than other times. I appreciate all of your encouraging words and kindness. It REALLY does help me feel better and worry less.
Have a good night everyone.
Love, Heather
Friday, February 1, 2008 3:45 PM CST I took Abby to her Kindergarten screening today. She did a good job. For those of you who have school age kids you know exactly what the screening process is. Basically, they just do simple tests to check on mental and physical (fine and gross motor)development in order to make sure that your child is ready to start Kindergarten. Abby did really great on all the academic tests. But, she did not do so well on the physical tests. They asked her to stand on one foot for 10 seconds, she made it to 7 seconds on one foot and 5 seconds on the other. They then asked her to jump on just one foot. She couldn't do that. Then they asked her to skip, and she sort of jogged, but that did not count as skipping. Anyway, it was hard to watch the teacher circle "fail" on these physical tests. Those of you that know me well understand that the word "fail" is not a word that I accept easily (I tend to be a perfectionist, which I know is not always a good quality). I know that Abby is trying her hardest and that if she didn't have a heart condition things would be so different, but seeing her "fail" at something still gives me a heart ache. I have confidence that once Abby gets her new heart she will be able to catch up physically, but it still makes me sad that she isn't able to do what most 4 years olds can do. As a mom I have such wonderful dreams for my children and certainly I never considered that any of my children would be behind physically and may not even be able to start Kindergarten as planned. I just told Abby that she did a wonderful job today and that I am proud of her...so very proud!
So, Abby is registered for Kindergarten, whether she will be able to start on time only the Lord knows. Hopeful the new heart is coming very soon and she will make a swift recovery and be able to spend the summer playing like every other healthy kid and then start school as planned.
Abby's heart friend Riese had her appointment with Dr. Singh yesterday and they found out that her heart is once again in atrial flutter. This means exactly what is says, instead of pumping full beats her heart is just "fluttering". Riese will go back to Children's on Monday for a carioversion, where they stop and re-start her heart to hopefully get it back on a regular rhythm. If that doesn't work, then they are not sure what will come next. Please pray for Riese that the cardioversion on Monday works and that her heart gets a normal rhythm back.
www.caringbridge.org/mn/riese
I hope that you all have a wonderful weekend.
Love, Heather
Thursday, January 31, 2008 9:39 AM CST Thanks again so much for all the recipes! I think that it would be a great idea to make a cookbook and then make it available for anyone who wants a copy (not necessarily to raise money but just for fun, who can't use some great home cookin' recipes?). So, keep the recipes coming and someday, when I have some time I will organize them and make a cookbook.
I was going to take Eva today and get her one year pictures taken, but my friend Toni thinks she might be coming down with a cold, because her husband has a yucky bug. So, we won't do that today, but some other day. Also, Abby's heart friend Riese and her mom Lindsey were planning to come for a sleepover tonight, but Riese has come down with a similar cold to what the girls just had. So, they are not coming tonight either. Lots of icky stuff going around right now. Keep washing your hands like crazy...it is really so helpful in not getting sick.
Well, my girlfriend Teresa just got to our house a few minutes ago, so I am going to run a few errands and try to get stuff done while I have the help. I appreciate her time so much. It gives me a chance to catch up on the details of life.
Have a great day everyone.
Love, Heather
Wednesday, January 30, 2008 6:25 AM CST Thank you, thank you, thank you for so many great recipe ideas!!! I am going to get my recipe box out today and start to copy some of them down on my recipe cards. It makes me hungry just to read the guestbook. I really appreciate that you took time to write them down for me. I know that it seems silly, but it is really nice to read your entries, because I feel more connected to the world. So, thanks for writing and sharing your family recipes with me.
Abby slept pretty well last night. She was really only awake one time during the night with a bit of coughing and then she woke around 5:30 this morning with a bit more coughing, but I think that she heard me coughing and Mark getting ready for work. She is sleeping again now, so hopefully she will rest well for another hour or more. Oh, actually I hear her coughing again now...better go check.
Have a great day. I will try to journal more later if there is time.
Tuesday, January 29, 2008 10:34 AM CST Hi everyone,
I have a request today.
I am tired of cooking what seems like the same 5 meals every week for my family. We don't eat out (because we can't risk the germs) and we usually get pizza or chinese once a week. So, that means that I cook a LOT at home. I literally spend most of my day in the kitchen. I need some new FAMILY FRIENDLY recipes to try out with the kids. My regulars are stroganoff, spaghetti, homemade pizza, mac n cheese, chili, tacos, chicken noodle soup and pork chops in the crock pot. If you have time and you have a great recipe or side dish that both adults and kids will eat, please post it in the guestbook. I would love some new ideas!!! And, others may benefit too from reading some of your recipe ideas in the guestbook.
While the home infusion nurse was here yesterday we called and talked with the pediatrician about Abby's coughing at night. The ped doc put her on a new 5 day anitbiotic that hopefully will knock down what she has going on. I have not been sleeping well either, so I may be going on the same thing also. I have a call in to my doc as well. Clare, Eva and Mark seem to be doing great.
I also wanted to say good luck to all the MN high school dance teams that will be competing in sections this weekend and next weekend. I will be attending the section tournament at Wayzata this Saturday and I am really looking forward to it. I miss my dance team coaching days so much! Thanks again to all the dance teams that performed in the benefit for Abby this fall. It was an amazing event that we will never forget. We can never say enough thank yous to everyone for helping our family last year and this year.
Thanks in advance for any recipe ideas that you have!
Love, Heather
Monday, January 28, 2008 6:10 AM CST It was a long weekend. This runny nose cold is really making it hard for Abby to sleep. The mucus just drains down her throat when she lays down and makes her cough. Then sometimes it just gets so bad that she throws up. We are trying all of the things we can think of to help. Steamy showers, Vicks, elevating her head while sleeping (I think there are four pillows on her bed now), lots of fluids, cough medicine, Tylenol. But it seems that nothing really gives her much relief. During the day when she is awake she is better, because she is upright. But, we all know that getting no sleep or even such disturbed sleep can really wear a person out. She is dragging and complaining of being tired...who can blame her? Mark and I are pretty whipped out too. Even poor Clare is much more tired than normal, because it keeps her awake also. So, we are hoping that a few more days and this little bug will work its way out of Abby’s system so that she can start to sleep better again.
At 12:15 AM (early Sunday morning, 7:15 AM Rome time) January 27th mass was said at St. Peter's Basilica in Rome for Abby. Mark and I were still up, because Abby had been coughing, so we both went and knelt beside her bed to pray at the same time mass was being said. I prayed so hard that Abby will get her new heart soon, that it will be a perfect match, that her body will welcome the new organ, and that she is able to recover quickly and come back home to start enjoying a more normal and free life. I prayed that God will give us patience to wait for her new heart and to enjoy each day that we have before her heart arrives. I prayed that God will help ease our fears about the future, about surgery, about whether or not Abby will get a new heart, and that the uncertainty will not overwhelm us. I prayed that Abby will remain healthy until her new heart arrives and that she will not be hospitalized again until that time. I know that God was listening because I felt a great calm and sense of peace in those minutes that I was kneeling by Abby's bed. The nightlight (a little girl praying on her knees) was on in the girls' room when we were praying and it cast a soft glow on Abby's face and she did look so peaceful. She didn't even cough during the time that we were by her bedside. I could not stop the tears from streaming down my cheeks while I was praying for Abby. Sometimes the tears just need to fall.
Yesterday I held Abby in the rocking chair during her naptime, because it kept her more upright and let her get some needed rest. Oma (my mom) was here to help with the girls in the afternoon yesterday, because Mark needed to go into work for a little while. That worked great because Oma played with Eva while I held Abby and Clare slept in her bed. I haven't held Abby like that for a long time. It reminded me so much of when she was just a little baby. I think I needed that closeness with her, it just made my heart feel a little better. And she did get some needed rest, for about an hour while I held her.
Please pray that this cold goes away soon and Abby starts sleeping well again.
I have my second quilting class tonight and am looking forward to that.
Last, Abby will be featured on KARE 11 News in a two-night story about overhauling the health care system in MN. The air dates of the story are Wednesday, February 6th and Thursday, February 7th on the 10:00 news. Also, please know that we are not soliciting any of the media coverage of Abby and her story. KARE 11 heard about Abby's story from a family friend and was interested in learning more about her life journey. We hope you are able to watch the story, it should be very interesting.
Well, have a great week everyone.
Thank you for checking on us and praying for Abby.
Love, Heather, Mark, Abby, Clare and Eva
Wednesday, January 23, 2008 8:12 PM CST Sharing Good News!
Tonight, midnight our time, a mass will be said for Abby at the tomb of St. Francis of Assisi in Italy. This is exciting and inspiring to us.
As if this is not enough, this Saturday a mass will also be said for Abby at the main alter of St. Peters Basilica in Rome. Many thanks to Fr. Jeremy Kucera for making this very special event a reality. Many of will know just how extraordinary these services are, so we wanted to share this great news.
Regardless of your faith, we continue to welcome prayers for our Abby from all of you.
On a separate topic, we received wonderful news on January 11 regarding Abby’s health care coverage. She was made eligible for a form of Medical Assistance (TEFRA) as of Jan 1 of this year. This program effectively puts a cap on our out of pocket monthly expenses in the near term. As we understand it, her eligibility could change post transplant or at the end of this calendar year, but we’ll cross this road when necessary. With this news and the combined generosity of so many of you over the last 11 months, we are in a solid position entering this year to ensure that Abby continues to get world-class care.
We cannot say THANK YOU enough!
God Bless, Mark
Tuesday, January 22, 2008 2:20 PM CST Abby and Clare both have a runny nose. It doesn’t seem like anything too serious, just a run of the mill runny nose, but I'm watching them pretty close to make sure that it doesn't turn into anything more. Of course, Abby is the one that I am most concerned about, because for her even a small cold can cause bigger issues. So far it just means nose blowing, lots of soup and extra rest. No idea where they picked this up, but I suppose that even with the best prevention we were bound to get a bug at some point this winter. We have been so fortunate thus far that none of the kids have even had a sniffle this winter. Hopefully this runny nose will just run its course in the next few days and be done. Their appetites are still good, no fevers, and they are sleeping ok.
Clare has been having some jealously/attention issues lately. It must be hard to have a sister with a serious heart condition, but Clare usually handles things so well that sometimes we forget that she is only 2.5 years old and that she wants attention just like every little kid. She was complaining of a tummy ache this weekend, which at first was true because she was having trouble pooping, but then she started saying she had a tummy ache all the time because it would get us to pay more attention to her. She even said to Mark that she felt like she was going to throw up. He asked if it was true and she said, "Well you always come running when Abby throws up." So sad. This makes us feel terrible. So we have been trying to explain that we love her just as much as Abby and we wish that Abby didn't feel sick and that Clare should always tell the truth about how she feels. We have also been trying to make special time just to spend with Clare. This situation was escalated the week of Abby's heart cath and dentist appointment. That was two days where Abby got mom/dad all to herself and Clare had to stay at home. We will be more careful about Clare's feelings in the future. She is such a soft hearted girl and we need to be sensitive to her about the situation at hand.
I had a bit of a meltdown before naptime today. My friend Stef called with some questions about her 5 week old baby Noah. I was trying to answer them while helping Abby go potty and keeping Eva out of the toilet area and bathtub. While all this was going on Clare pushed Eva and she bumped her tooth on the tub, which then started bleeding and she was wailing. Ya know, I don't talk on the phone much at all and when I want to just have a 5 minute conversation everyone needs me to be doing something for them and they get really loud (like they are competing for my attention) and they get naughty. What the heck! It's not like I don't spend my entire day filling every need that they have and playing whatever they want and kissing bumps and changing diapers and making food etc. etc. etc. Could I just get a few minutes to speak on the phone without the drama?! AHHHH! I yelled at Abby and Clare, which just made Eva cry harder. I should not have raised my voice with them, but I just lost it. I didn't even sing them a song before their nap because I was so upset. Hopefully I will be a better mom for the rest of the day. Sometimes I just wish they were better able to express gratitude for what I do for them everyday. I know that their love is how they show me, but sometimes it is nice to hear.
Eva will be turning one on February 12th. I can't believe what a big girl she is. We are trying to figure out what kind of celebration to have for her birthday. Of course we want to do something, but we will probably just keep it small to minimize the exposure to germs. I wish that wasn't the constant thing in the front of my head, but I just know that is what we need to do right now to protect Abby and the girls. Winter is wearing on all of us. It would be nice to be able to get outside, but it is too cold. We can't go to the community center or other public places, because of the germs. What a drag. Spring will be welcomed by all of us.
Thank you everyone who had been praying and continues to pray for Isaac Lieser and his family.
Abby has her next appointment at the U of M on February 7th. Just a check up and testing. Hopefully she will have her heart before then. Keep praying!
I started taking a quilting class on Monday nights (for the next 6 weeks). Just something to get me out of the house a little bit. Our first class was last night. I think I was meant to take this class. There are 8 women in the class and one of them has a grown son who is waiting for a heart transplant and another has a 10 year old granddaughter who recently had a kidney transplant. That just seems like fate. Plus the class is really fun. Thank you Angie for your thoughtfulness!!!
Mark is busy busy busy at work. He loves it like usual, but it is demanding. He is such a hard worker and we are all thankful for that.
Have a great day everyone. Love, Heather
Sunday, January 20, 2008 11:20 AM CST Hi everyone,
This will just be a short message.
Please pray for Isaac Lieser and his family. He has only been given a few more days to live here on earth before he will enter God's kingdom and be healed of his cancer. This little boy and his family could use your prayers very much during this difficult time.
www.caringbridge.org/visit/isaaclieser
Thank you.
Love, Heather
Wednesday, January 16, 2008 11:05 AM CST We were able to return home last night. Abby was very very tired (it was a struggle just to put pajamas on) but it was best to come home and sleep in her own bed. She did a good job with the recovery time yesterday. She wasn't allowed to sit up until 5:00 PM, so that was a long time to lay flat in bed and keep her leg still. She got a little irritated because we wouldn't let her sit up, but she didn't fight us too much. After the heart cath she was very thirsty and hungry. She had two orange popsicles right away and then later she was able to have apple juice, buttered noodles, tomato soup and chocolate ice cream. Then on the way home she wanted french fries, and she almost ate the whole small pack. What a change her eating is from being in the hospital last year. She fell asleep by 8:00 PM last night and didn't wake up until 6:45 AM this morning. She seems a bit tired now, but she doesn't want to take a nap. She also says that her leg is a little sore today, but she is walking around just fine. She won't let me take the scooby doo band aid off yet, but it will come off in the shower. One funny thing that she said is "They were going to give me medicine to fall asleep, but they didn't". She doesn't even remember falling asleep in my lap before the heart cath or understand that she was sleeping for over two hours during the procedure. I guess that this is a good thing.
Today we are planning to keep things pretty low key at our house. Probably a good movie day. Then tomorrow I am taking Abby to the dentist for the first time. We had a dentist look at her teeth while she was a the hospital last year and she said everything looks good, but it is time to get them checked again. I guess I just kept thinking that I would wait until after she got her new heart to make this dentist appointment, but we are waiting longer than I expected so it is time to go see the dentist. I am not sure what Abby will think of being in the dentist chair or if she will let them clean her teeth. Hopefully it won't be any big deal. Then on Friday my good friend Toni from Front Porch Photography is coming to the house to take "day in the life" pictures. She had a great idea of coming and just cataloging what our daily routine is like at this time in our lives. It should be fun and we are thankful that she shares her wonderful talent with us.
Well, like Mark said yesterday, Abby's heart/lung pressures are very good and favorable for a heart transplant. Now we just need the new heart. She is strong and will fight to recover quickly, her body is ready, and she really needs a new engine. Please keep the prayers coming that a new heart arrives soon.
Thank you and love to all.
Heather
Tuesday, January 15, 2008 12:42 AM CST No surprises.
Abby is still a good candidate for the heart transplant; this is good news. The heart cath also reconfirmed how badly she needs one. Dr. Gemmels would like to have seen a miraculous change in how her heart functions, but it is still very poor. A primary reason for this assessment was to determine if her pulmonary pressures had dramatically increased, which would have taken her out of the candidate pool. We are thankful for the results.
Rick and Gary from Kare 11 were here this morning and attended the entire procedure. Rick described it to us and I’m very interested to see any footage from this.
Abby is awake, but resting. She needs to lay flat until 5 PM this evening, so we’ll need to keep her occupied with some good stories, a movie and perhaps a nap. It is nice to see some of the many nurses and docs that we’ve come to know at Children’s Hospital. It is strange to feel so connected to the good people here and this place. Some of you reading this know the emotion that I’m inaptly trying to express.
Oma is bringing lunch. We will all be happy to see her.
Thank you for checking on Abby.
God Bless - Mark
Tuesday, January 15, 2008 11:20 AM CST They’ve just finished the heart cath. Abby is doing well (we’re told), but still under anesthesia and we’ll get to see her in about an hour. Results of the cath will be shared with us in a few hours.
We apologize that the site was unavailable for a short time, something needed to be fixed by the Caringbridge support folks.
Monday, January 14, 2008 11:45 AM CST Hi everyone,
I hope that you all had a great weekend. Everyone at our house had a relaxing and fun weekend. On Saturday, Mark and I were able to get out of the house by ourselves for a few hours (thanks for watching the girls Kelsey) and went out to lunch and did a little shopping. Then on Sunday we loaded up the van and drove over to my brother's house in Somerset, WI for the day. Michael and Mindy just had a new baby boy on 01/08/08, so we took the girls over to meet their new cousin and to play with their older cousins. It was a great day. I have posted a picture of the new baby, Matthew Paul on the photo page of the website.
Last Friday we had a very busy morning here. Rick Kupchella from KARE 11 news was at our house with photographer Gary. Rick is working on a news story about health care and insurance and Abby will be featured in the story. We don't know an exact air date yet, but it will be sometime in early February. It was nice to tell Abby's story to Rick and Gary and let them see how great she is doing here at home. Then this morning Gary was back to get some footage of what the typical morning routine is like at the Ostlie house. He was here for all the chaos and fun. Monday mornings are when the home infusion nurse comes to draw Abby's labs for the week and do general check-ups on Abby. I change Abby's IV bags and administer her IV and oral medications each morning. I think that Gary was amazed by how much "stuff" needs to be done each morning. And of course this includes feeding everyone breakfast, taking kids to the potty, changing diapers, cleaning up spilled water, kissing bumps, dressing up like princesses, and trying to drink my own cup of coffee. Whew! Rick and Gary will also be following Abby tomorrow at Children's when she goes in for her heart cath. It will be good for them to see a hospital perspective as well as at home.
Tomorrow morning we will check-in at Children's at 8:00 AM. Then they will switch Abby's IV bags over to the kind they use at the hospital and to an IV pole. Abby will get into her turquoise hospital pjs and then we will wait for them to start the procedure. The heart cath is scheduled to begin at 9:30 AM. Typically we take Abby into the cath lab and wait with her until she is asleep under anesthesia. Then we wait in the surgery waiting area until the procedure is complete. Dr. Singh will be corresponding with us during this time to let us know how things in the cath lab are going. If everything goes according to plan the heart cath should take about 2 hours. Then Abby will need to be in recovery for at least 4 hours, as they will make sure that the bleeding has stopped at the incision point in her groin area. If she is feeling well and everything looks good we will then get the ok to return home. There is a chance that we might need to stay overnight at the hospital and in the that event I will stay with Abby for the night. Please pray that the procedure goes well and is uneventful for Abby.
We will try to update the caringbridge site during the procedure to let everyone know how things are going and of course after it is over.
Thank you for the prayers and support. We appreciate it so very much.
Love, The Ostlies
Heather, Mark, Abby, Clare and Eva
Tuesday, January 8, 2008 3:50 PM CST Hello everyone,
Sorry that it has been so long since we updated the page, but as you all know "no news is good news".
Best news first:
My nephew Matthew Paul Anderson was born to proud parents Michael (my brother) and Mindy Anderson at 12:53 PM today. He weighs 7 lbs 7 oz and is 21 inches long. He has lots of brown hair. Both mommy and baby are doing great! Congratulations and I can't wait to meet baby Matthew!
Other news:
We all had a fabulous Christmas and new year. Santa was very good to the girls this year and they have lots of new toys to play with. We were able to spend time with both the Ostlie and Anderson families and enjoyed ringing in the New Year here at home.
Abby has been feeling great. She is energetic, has been eating well, and not having so many bouts of throwing up. She is scheduled to have a heart cath at Children's Hospital next Tuesday, January 15th. This procedure is necessary to check the pressures in her heart and lungs as well as flow and a bunch of other things. It is important that the surgical team at the U of M have this information for Abby's transplant surgery. I just spoke with Dr. Singh today about the heart cath. He told me that there is some level of risk associated with this procedure, especially for someone with a heart as delicate as Abby's heart. Dr. Singh was scheduled to perform the heart cath, but he has been thinking about it for some time now and decided that he is too emotionally close to Abby to perform the procedure (for a number of reasons). His colleague Dr. Gremmels will perform the heart cath and Dr. Singh has full faith in his abilities. Dr. Singh will still be there for the procedure and will come and let Mark and I know how things are going during and after. It is expected that Abby will be able to return home the same day, but in the event that it is necessary they will have a bed ready for her to spend the night. I am somewhat nervous about the heart cath, but I pray that it will be routine with no complications. Just something to check off the list prior to transplant.
Clare is doing great. She has had some terrible 2 moments recently, but like always she is mature for her age and has a heart of gold. She is a super fun little girl and we are enjoying watching her grow and learn.
Eva is taking steps now. She takes 6 or 7 at a time and then falls over. The look on her face when she walks is pure exhilaration. She is so proud of her accomplishment and wants everyone to watch her go! It amazes us that she will turn 1 on February 12th. Where did the year go?
Well, I hear some little voices waking up so I will sign off for now.
Love to all,
Heather, Mark and the Ostlie girls
Tuesday, December 25, 2007 6:51 AM CST Merry Christmas!
We hope that you all enjoy a day of fun, laughter, good food, good company, and peace.
Praise God, Jesus Christ was born today.
Love, The Ostlies
Mark, Heather, Abby, Clare and Eva
Monday, December 17, 2007 10:50 PM CST Hi everyone,
The new pictures are some of the ones that Toni Fogarty took of the girls. www.frontporchphotos.com
I just love them so much!
Today we had a super fun day. First, our favorite home infusion nurse, Lori, was at our house this morning and helped us work out some things with Abby's new dosage of Dopamine and the pump. Thanks Lori, you are always so fun to have around.
Second, our favorite babysitter, Kelsey, came for the first time now that she is home from college for several weeks. The girls love her and it is good to have her back home for awhile.
Third, Mark and I were able to take Abby and Clare to see the new Disney movie "Enchanted" today. We have wanted to take them to the movie since it first came out, but have avoided the theaters because of all the germs. But, we decided to try a Monday matinee and see how crowded it was. We took our Lysol wipes and a blanket to put over the seats so that the girls could not touch the armrests. We got to the theater for the 12:25 showing (just right here in Chaska) and we were the only ones there! Awesome. It was our own private showing. Abby and Clare loved the movie! I wish that I could have video taped their expressions, because they were priceless. We don't get to do things like this very often, well actually never really, so it was a big treat for all of us. Eva stayed with Kelsey, and that worked out perfect too!
Abby is still feeling kinda down. Just more tired than usual and having issues with throwing up. Her Dopamine drip is now increased, so hopefully that will give her a little more spunk.
Also, we wanted to mention that if you send us an email please don't expect a response right away. We don't have much time to check our personal email, so sometimes we go several days or a week without checking. Also, we get quite a lot of junk mail and other things, so sometimes we might miss an email. If you really need to get a hold of us, please give us a call.
Thanks and keep those prayers for a new heart coming strong!
Love, Heather, Mark, Abby, Clare and Eva
P.S. To my heart mom friends, would you mind dropping me a quick email with your home address? I would appreciate it. Please title the email “heart mom address” and I will be watching for it.
Thursday, December 13, 2007 8:45 PM CST Abby had her appointment with Dr. Singh today. For those of you that know Dr. Singh you can attest to the fact that sometimes he is the brilliant silent type. He very carefully listened to Abby's heart for quite some time, looked over her chest x-ray and then after some pondering said that he feels we should increase her amount of Dopamine (which is an IV drug that helps her heart pump harder and more effectively). He didn't need any other tests to decide what was right for her. He said that as we discussed in the hospital her heart will continue to slowly deteriorate. He, like all of, is so hopeful that her new heart comes soon and before it is too late. He has a special soft spot for Abby and genuinely cares about her. Before we left the clinic he hugged her and gave her a kiss on the cheek with a wish for a Merry Christmas. What a great doctor. We are so lucky to have him as Abby's cardiologist and as our friend. So, that's the plan...increase the Dopamine and keep everything else is the drug plan the same.
Thanks for checking on Abby and praying for her to get that special new heart. Have a fabulous weekend.
Heather
Wednesday, December 12, 2007 3:06 PM CST Hi everyone,
If you would like to see the wonderful pictures that Toni Fogarty took of the girls yesterday go to:
www.frontporchphotos.com
Click on Client Online Proofing Gallery
Click on Ostlie
They turned out so well. Toni has such a wonderful artistic talent for taking photos. Thank you again Toni.
Now Mark and I have the hard job of deciding which photos will make the Christmas card for this year and which we will order to enjoy at home.
Love, Heather
Tuesday, December 11, 2007 2:42 PM CST We had a great time today taking pictures at Front Porch Photography. Toni Fogarty is the photographer and owner of the studio and she is awesome. Thank you so much Toni for everything!
Now let me tell you in detail about our photo session today. We arrived at Front Porch in Belle Plaine at about 11:00 AM this morning. I brought the girls in and they were sitting on the couch in the waiting area. Well you should have seen their eyes when none other than Santa Clause and Mrs. Clause walked around the corner!!! This was even a surprise to me! Toni had planned the whole thing...what an unbelievable surprise for the girls. I had to try so hard not to cry because they were all so amazed at Santa. Toni got lots of great pictures of the girls talking with Santa, sitting on his lap telling him what they want for Christmas, whispering in his ear, etc. Eva wasn't so sure that she wanted to sit on his lap, but she loved to look at him while in mom's arms. Clare was great with Santa this year. Last year she didn't want anything to do with him, but this year she let him pick her up and hold her and enjoyed sitting on his lap. Abby was actually really shy at first. I think that she was almost in shock that she was seeing Santa. Then she really warmed up and was even singing "Rudolph the Red Nose Reindeer" for him. What a great surprise. Thank you so much Toni and staff and of course Santa and Mrs. Clause!
After Santa and Mrs. Clause left the studio (because they still have a lot of work to do before Christmas) Toni took lots of other awesome pictures of the girls. Actually she did so much work that I can't even remember all the great shots she took. She had presents for the girls to open and a Christmas tree that they were peeking out from behind and Christmas ornaments that were spread out on the floor. The presents that they opened had new coloring books and colors so she got lots of pictures with them coloring. They wore reindeer antlers (these were Eva's favorite and Toni got the best picture of her with them on) and Santa hats. Gosh it is going to be completely overwhelming to decide which pictures to order.
Abby felt good for the whole session and we were there almost 2 hours. I even "unhooked" her from her pack for about 20 minutes so that she could be free for some of the pictures. During the time that she was free she and Clare pretended that they were ice skating on Toni's white backdrop. They were adorable.
I can't wait to see the pictures! I will get some posted as soon as possible.
Thank you God for helping Abby to feel good today so that she could have fun taking pictures with her sisters. Thank you Toni for your wonderful talents and gift of time.
Everyone is sleeping now, because they were just plain worn out after taking all those pictures. We had to stop at the Burger King drive through on the way home because everyone was "starving". Full tummies and very tired girls should equal a nice long nap. I better go get something done while I can.
Peace and love to you all,
Heather
P.S. If you have any need or wish to have family or children's pictures taken go to Toni at Front Porch. She is the best and her pictures are phenomenal.
www.frontporchphotos.com
Monday, December 10, 2007 3:06 PM CST Abby has not been feeling very good this past week. She has times where she is very tired and might just lay on the couch and take a nap mid morning (this is not like her). Also she has had a very upset tummy again and lots of throwing up. All of this is heart related, because her heart is not fuctioning well. The nurse was out to the house this morning and Abby's blood pressure was a little bit high, this is a change for her because usually it is a little on the low side. I called Dr. Singh and explained all these symptoms to him and he said that we should come into the clinic this week so that he can take a look at Abby. We will go on Thursday morning at 11:00 AM. Mark and I can both see that she is weaker. It is so sad for us. She needs that new heart!
I am taking the girls to Front Porch Photography tomorrow morning to have some pictures taken. I am praying that Abby will be feeling good and enjoy the session.
That's all for now.
Love, Heather
Friday, December 7, 2007 7:06 AM CST Hi everyone,
I know that this webpage is for updates about Abby, but this morning I just need to take a brief moment and vent a little. I am having a rough week. I don't know if it is because of Abby's appointment on Monday, or just because I really don't like winter and the seemingly constant darkness, or if I just need more adult contact in my life (being at home 24-7 with three kids under the age of 4 can be hard sometimes), or if Clare seems to be hitting some terrible 2s and giving me lots of attitude these days, or just a combination of it all. I just don't have much energy this week and the tears seem to fall much too easily. Sigh...
Anyway, Abby seems to be doing great. She even tolerated some time off her IV pack yesterday. She loves to be "unhooked" and "free". She just runs around with Clare and acts like a totally normal kid for those minutes. It is awesome for all of us. I find that during those short times I can visualize what life will be like for her with a new heart. FREE! Even simple stuff like going to the potty. She needed to go when she was unhooked yesterday and it suddenly dawned on her that she could do it all by herself. No need to have me carry her pack and help her onto the potty. She was really proud. She and I both can't wait until she can take dance lessons. I don't push her but she just loves to dance. She always says "look at me mama I am balleting". Yesterday we were learning the dance moves from High School Musical. She likes the "prowl" move the best. It was fun.
Eva can now climb the entire flight of stairs unassisted, with me just walking behind her in case she would slip. It will be awhile before she can do it all by herself, but it is amazing how strong she is at only 10 months. I guess Abby and Clare must really motivate her. It makes me sort of sad that she is growing up so fast and isn't a tiny baby anymore, but it is so fun to start seeing her little personality. She is going to be a heartbreaker.
Ok, I need to get going. It is a triple bag change day here and I should get things in order.
Have a great weekend everyone and thanks for listening.
Love, Heather
Tuesday, December 4, 2007 2:30 PM CST Ok, all the kids are sleeping for the moment, so I will try again at updating the website.
The actual appointment at the UofM yesterday was just fine. Abby did well through all the tests and only cried a little bit during the EKG (just because she hates when they take the electrode stickers off of her skin, because that part hurts). The other time that she cried was when the xray tech that did her chest xray pinched her skin in the lead apron that protects her during the xray. She actually clipped the apron shut when Abby's skin was in it. That really hurt and Abby sure let them know. She has a little blood blister on her skin where it was pinched, but it doesn't seem to be bothering her today. Otherwise, she tolerated all the testing just fine.
However, the test results were not so fabulous. The echocardiogram showed more deterioration in her heart function. Let me try my best to explain what is happening. Abby's heart only has one side that pumps the blood out to her body. The blood enters her heart chamber and then when her heart beats the blood gets pushed out to her body. But, because Abby's heart is so weak a lot of the blood that enters the heart is not pushed out to the body. Her heart is not strong enough. So, the extra blood that doesn't get pushed forward goes backward, which is not what it should do. This means two things. First, her heart continually needs to take in more blood in order to push the same volume out to her body. Because her heart is taking in more and more blood volume her heart is getting enlarged. Second, the enlargement of the heart makes it so that the valve does not completely cover the opening to her heart where the blood enters the chamber, so then more blood washes backward. These two things create a terrible cycle, more enlargement, more need for extra blood in the heart, more backwash. The heart can't continue this pattern forever, which is why they call it heart failure. They were not even able to accurately calculate a ejection fraction yesterday because the backwash was so high. They could see the back flow of blood out of her heart all the way to her kidneys. So, this was not great news.
We just pray and wish and hope that Abby's new perfect heart will come very soon. Like Dr. Braunlin (cardiologist) said, lets not focus only on the tests. Look at Abby; she continues to be strong, active, energetic, hungry, and all other good things at home. Keep up the good work Abby! Your perfect heart is coming soon, we pray.
We will continue doing everything the same at home, unless her health would change. Sometime in the next 6 weeks Abby will need to have a heart cath to re-measure the pressures in her lungs and heart. This will happen at Children's and be performed by Dr. Singh. The UofM surgeon needs more currently pressure readings to make sure they know how to treat Abby pre and post surgery. Dr. Singh has assured us that this should be a standard procedure with little risk. It should be in and out in the same day. We will let you know when something is scheduled.
I was pretty upset after speaking with Dr. Braunlin yesterday, but like she said I need to focus on Abby. Paula (transplant coordinator) could see that I was disappointed by the results and sad. She suggested that I take Abby out to lunch (which we never do because of the germs) but she said to just wash our hands good and have some fun. So, I took Abby to The Old Spaghetti Factory for lunch. She loved it! It was nice to just have some one on one time with her. She is such a sweet little girl. I am very proud to call her by daughter.
Other news...we had a very fun weekend. On Saturday we went to Oma and Opa's house to make Christmas cookies. This was really fun. Abby kept dipping her finger in the turquoise frosting and sneaking little licks. She would say "yummy"! Then because of the snow/ice storm we ended up spending the night at Oma and Opa's house. We had packed Abby's meds in anticipation that we might end up staying over. That was fun for the girls. Then on Sunday we went sledding down the hill in their backyard. It was awesome! Abby and Clare had the best looks on their faces. I wish that I would have had the video camera with me; it will be a priceless memory. Abby would have kept going and going, but her IV lines started to freeze so we had to go back in and warm up.
One last thing before I sign off for today. I really have been praying a lot for Abby to receive her new heart and all along I have believed that God just needs to get things in order before she will receive her heart. Last week I got a call from our favorite babysitter, Kelsey, she helped with Clare and Eva a lot this past summer when Abby was still in the hospital. She called and said that she will be coming home mid December from college and will be home for 6 weeks. She was wondering if during that time she could help us out with babysitting when we need her. I think that this was a small sign that God is getting everything in order. It would be such great timing if Abby would get her new heart while Kelsey was home. She would be such a big help to our family during that difficult time. Mark thinks that I will be disappointed now if it doesn’t work like that, but really I am just hopeful that her new heart comes soon. Kelsey we are looking forward to having you back home, no matter if Abby gets her new heart or not!
Well, that's it for now.
Please continue to pray for Abby's perfect new heart to come soon. She really needs her "new engine" to quote Dr. Braunlin.
Love and peace during this holiday season.
The Ostlies
Tuesday, December 4, 2007 7:10 AM CST We had an appointment at the U of M yesterday. I was just sitting down to tell you about the results, but now I hear my little girls calling. I will update later when they nap.
Tuesday, November 20, 2007 3:35 PM CST New pictures! I wish that I had time to put new pictures on the website everyday. The girls are always doing fun things and looking adorable. I try to take lots of pictures, but I never quite seem to have time to get them on the website. But, with a little help from Mark's sister Angie (who watched the girls – thank you) I was able to take a few minutes and get some new pictures up today.
Abby is doing great. Her Broviac line seems to be well repaired and holding just fine. We will hope that she gets her new heart before the line needs another repair (because next time they would definitely need to do a surgical repair to the line).
Paula (Transplant Coordinator at U of M) called to check in today. She was just wondering how Abby was feeling and wanted a chance to touch base with our family. There is another little boy on the transplant list now. He is the same blood type as Abby, but Paula assured me that Abby is still 1st on the list and that he is smaller than Abby so they will not be competing (that sounds like a odd choice of words) for the same heart. They are listed in different weight categories, so this is good. Paula said that she is keeping her fingers crossed that Abby gets a heart this weekend. It is her weekend to be on call and she said that she had a good feeling about it. I hope that she is right. There would not be a better reason to give thanks this Thanksgiving. Turkey ala hospital would be great with us. Please continue to pray that Abby gets her new heart very soon, while she is so strong.
Mark is taking some vacation this week, so it will be fun to have him around for a few days. The girls always love it so much when Papa is home.
Also, I know that I asked this before, but please pray for a little boy named Isaac Lieser. He has stage 4 cancer and it is not responding to chemo. He and his family could really use some extra prayers right now.
www.caringbridge.org/visit/isaaclieser
One more request. A heart friend of ours, Ashley Donnelly, is in the hospital recovering from her 3rd open heart surgery and is having some issues with fluid retention. Please pray that her body recovers quickly so that she can go back home to be with her family. She is a very sweet little girl.
www.caringbridge.org/mn/ashleyd
I hope that you all enjoy your time with your families and loved ones this Thanksgiving. We all have so many wonderful things to be thankful for. Take time to sit down and remember all that God has blessed you with. His abundance is amazing.
Today I am thankful for...
My wonderful husband Mark, we began this journey of family together and I am so thankful to walk the road with him.
My beautiful daughters, Abby, Clare and Eva.
My parents Paul and Mindy, they are always there to listen just when I need them and are supportive of our family.
My in-laws, Roger and Elaine, they are my second parents and they give so much time and love to our family.
My immediate relatives, who are always helping out with the needs of our family and are just wonderful people to have around.
My friends, the women who know me best and are always there.
All the love and generosity that has been given to our family this year.
God, for guiding me in my life.
There is so much more that I am thankful for, but this is just a short list.
Peace and love to you all this Thanksgiving.
Love, Heather and family
Wednesday, November 14, 2007 10:25 PM CST We are back at home! They were able to successfully repair Abby's broviac line without surgery. She wasn't able to eat or drink anything from about 2:00 until almost 8:00 tonight, so that was really hard for her. I think that she cried the most just because she was so hungry. The repair seems to be working well and holding in place. We will keep a splint on the repair site for about 48 hours (just to make sure the glue they use has the best chance of holding). We are all so glad to be at home.
Thanks for the prayers.
Love, The Ostlies
Wednesday, November 14, 2007 2:16 PM CST We are on our way down to Children's ER. Abby's Broviac (Hickman IV) has a crack in it. Right now it is just oozing blood, but it will likely get clotted if we don't get down there soon. Last time we had her Broviac repaired they told us that there was not enough line left to do another repair and that if we needed it fixed again it would likely mean replacing the entire line. So, I have packed clothes for at least a one night stay. Bummer, this will mean that she had to get an auxillary IV line put in her arm. Ok, more later. Pray that things go well.
Love, Heather
Wednesday, November 7, 2007 7:50 PM CST Abby had a sort of tough week last week. She threw up pretty much everyday (she is not sick it is totally heart/drug related). I talked with Dr. Singh (Abby's cardiologist) and he thinks that maybe she is actually a bit dehydrated. This would be caused by the strong IV diuretic that she gets twice daily. We are reducing the amount of this medication a little bit, but still giving it twice a day to see if this helps at all. So far, since we started reducing it, she has had less upset tummy and throwing up. So hopefully we found a good level of the med where it keeps the fluid off and away from her heart, but also keeps her hydrated. Also, I asked Dr. Singh if he had any idea what could be causing her to have a dry cough (which only makes it more likely that she will throw up) and he said that one of the most common side effects of the drug she takes called Enalapril is dry cough. Bummer, because she needs that drug and we can't reduce the dose. So, we will just have to deal with the cough.
We are all a little bit sad that the weather has officially gotten cold. It was so nice to still be able to take walks outside even in the end of October. We all get stir crazy when we can't get outside once and awhile. And of course our situation is just different because we can't use traditional winter outlets like the community center or mall. Just too many germs for Abby to be exposed to. So, we will have to get creative during the winter months to keep ourselves active and busy. I can tell that the kids just want to run around. Laps around the kitchen island only help relive that urge to a certain extent. I don't know about anyone else, but I really find the darkness that comes with winter to be quite depressing. Now that it gets dark so early I feel much more tired and lazy. I just need to get busy with some projects and hopefully it will get better. I am trying my hand at some quilting so that should keep my fingers busy for the next few months. I really miss teaching dance. The dancers always have so much energy and are so excited to learn and have fun, that was a great way to stay active and up beat during the winter. I miss all of you JFK girls so much!
Well, Eva is already tucked into bed and now I need to get the older to girls ready for nighttime. They tend to procrastinate to I better get started or they won't be done with teeth brushing, feeding the fish and story time until 9 pm.
I have more to update but it will need to be another day.
Love to all,
Heather
Monday, October 29, 2007 3:45 PM CDT Hi everyone,
I apologize again for being so lazy with the updates on Abby's site. Like many of you know "no news is always good news". We have all been enjoying some great days together at home. Abby has been feeling good almost all the time. The past few days she has been throwing up again, with lots of mucus in her tummy. This is not fun at all. But, after she gets all that mucus out of her tummy she feels much better. Dr. Singh told us once that sometimes HLHS kids have trouble digesting properly and get a build up of mucus in their tummies because they don't get the proper amount of profusion to their stomach (as well as other organs). It seems that this is the case with Abby. She takes is like a trooper, what a brave girl.
This past Saturday some of Mark's family came over to play cards with us as a birthday celebration for Mark. His birthday is really tomorrow (Oct 30th) but we celebrated this weekend because week nights are just too busy to have any type of party. I think that he had a good time. The girls had fun helping me make and decorate a pumpkin cake for him. They had to do lots of "testing" of the frosting.
Today the girls and I had the best walk. It is gorgeous outside and we all walked for such a long way. I just put Abby's IV pack into her baby doll stroller and she just pushed it herself. We went all the way down our street and back up the bike path. Then they wanted to keep going more so we went up by the elementary school and then to get the mail and then back home. Now everyone is napping, they we tuckered out after all the walking and fresh air. It was a great time.
On a personal note, I have been feeling a little stress lately over the fact that Abby has not gotten a new heart yet. I guess that I just thought that it would have happened by now. It is making me nervous that she won't get one in time and that she will get sick again and end up back in the hospital. I realize that I don't have any control over the timing or what will ultimately happen, but I still can't help thinking about it. It would be so nice if the perfect heart would come when she is strong and healthy. At least then we know that her body will tolerate the surgery and recovery. Then it is just a matter of if her body accepts the new heart and doesn't try to reject it. It is all just plain scary. I want Abby to get a new heart so she can do all the things a normal 4 year old does... and then 5 year old, 6 year old, etc. I want her to get a new heart so that we can all move on to a new chapter in our family history. So that we can go places, enjoy friends, do normal things and not be worried all the time that someone will get sick and that Abby will get sick. I would like this weight to be lifted from all of us, especially beautiful Abby, she deserves so much more in her life.
Ok, the end.
Love to you all. Enjoy this beautiful day.
Love, Heather
Tuesday, October 16, 2007 10:22 PM CDT Hi everyone,
Well another week has whizzed by and I didn't get Abby's webpage updated. The saying "time flies when you're having fun" is so true. We have just been having a great time together at home and enjoying it to the fullest.
We had a very busy weekend. Starting on Friday, my Grandma Mary Leigh (Great Oma to the girls) came to visit with her sister Karen (who lives in San Diego, CA). They had a great time hanging out with the girls and just giggling at all of their silliness. It was sort of bittersweet because it was the last time that we will see my Grandma until April. She spends the winters in Surprise, Arizona and then returns to her home in Greene, Iowa during the summer months. Her sister Karen flew into the cities so that they can make the drive out to Arizona together. They like to do this road trip together and make some fun stops along the way. It is awesome that they are able to do these fun things together. We will also be sad that we won't be able to celebrate Christmas and my Grandma's 80th birthday with her in person. She turns 80 on December 31st (but honestly she looks and acts not a day older than 60).
Then on Saturday we had a relaxing morning at home, I mowed and fertilized the yard while Mark played with the girls, and we did a few other things around the house. Then we actually all got an afternoon nap...it was great. After naps we headed to Somerset, Wisconsin to have dinner at my brother's house with his family, Oma and Opa, and Great Oma and Aunt Karen. This was good fun. The best part was "the concert" that my 5 year old nephew Benjamin performed for all of us. He is really into the Backstreet Boys and Justin Timberlake and he has all the dance moves down. He was so adorable doin' his thing on the basement dance floor. The girls laughed so hard and of course they wanted to join in the dancing fun.
Sunday we celebrated the baptism of our newest nephew Isaac, who is the son of Mark's brother David and his wife Sara. We had brunch at their home and got to enjoy Isaac on his baptism day. Then we headed home for naps. On Sunday evening my best friend Holly (who resides in North Carolina) and her husband Brandon and Holly's Mom Becky came for dinner. Brandon was in town for business so Holly came with to spend some time with her family. It was great to catch up with them, we always have some good laughs.
Monday all of the girls and I got our flu shots. To those of you that get one each year I say good job! For those of you that don't get a flu shot or forget or don't seem to find time I say get it on your calendar and make it a priority. It is really important and protects you and your family from a very serious and life threatening illness. The girls were all very brave. Abby cried a little bit (more in anticipation of the shot than the actual shot), Clare didn't cry at all, Eva just made a yucky face, and even though those of you who know how much I like shots might not believe me, I didn't cry either. Ha!
Today Grandma Elaine came and spent the day with us. She is always such great fun, the girls love her so much. It was nice to have some time to run a few errands and just get out of the house a little without the girls. We are so careful not to take them anywhere, because of all the germs that they get exposed to, so I wait and run errands when I have help or when Mark is home. Mark has been working a lot the past few weeks. He started his new position 2 weeks ago and it has been extremely busy and he is trying to learn a new area of the company and just get up to speed with everything. It is a lot of pressure, and he is handling it really well. It is hard for him because he has to spend a lot of time away from home, hence away from the girls and me. He doesn't like that part of learning a new job and we don't either. He should be home soon (it is 10:45 PM) and he left the house before 6:00 AM this morning.
Well, I hope that you all have a great week.
Love to all and keep up the prayers for Abby's new heart.
Heather and the family
P.S. Kelsey B. - thanks for the adorable t-shirts that you sent to the girls. They are so cute. I will take a picture of them in the shirts and send it to you. Eva is almost crawling. I am glad to hear that you are doing well. We miss you too!
P.S.S. The new photos on the webpage we taken by our good friend Toni Fogarty (Front Porch Photography www.frontporchphotos.com). She came to our house on September 29, 2007 with her son and his friend to take some family pictures. Unfortunately, the weather did not cooperate and we didn't get many pictures before it started raining and got really windy. We will have to try again soon. Toni thanks so much, you are the best.
Monday, October 8, 2007 2:43 PM CDT Abby's appointment at the UofM went really well today. First they did some blood draws, which are really no big deal because she has her Broviac/Hickman IV line. She can't feel when they draw blood so it doesn't bother her at all. Then she had several X-rays of her chest and bones. After that they did an EKG. This was probably her least favorite test, and not because the test hurts, but because it hurts when they remove the sticky patches that the EKG transmits on. She did well and just had a few tears. Then she had her echocardiogram. She actually enjoyed this because she got to watch Alice in Wonderland (the Disney version) and she has never seen that movie before. She didn't want to leave the ultrasound room when they were done with the echo. Then we went and waited to see Dr. Braunlin (cardiologist) and Paula (transplant coordinator). They came in and both just said how fabulous Abby looks. Also, they were surprised by the results of her echo because her ejection fraction (EF) which is the amount of blood that her heart can push out to her body was at 38 percent. This is great compared to the last echo when it was only in the mid 20's. So, her heart is actually operating a bit better than before. Other than that Dr. Braunlin had no news. They have not received any other offers on hearts, so we continue to wait. They will want to see Abby again in December, if she does not yet have her new heart. At this time Dr. Singh will also perform another heart cath to get updated stats on her lung/heart pressures (because these are very critical for surgery and treatment after surgery). So, that does it. Now we will keep up the good work at home and keep praying for that perfect heart to come soon. Both Dr. Braunlin and Paula could tell right away how much muscle Abby had built since she has been home and she also grew about .75 inches, which is great. They said that they have a couple other heart kids that could take lessons from Abby. So, way to go Abby! She continues to beat the odds and impress all who meet and care for her.
Thanks for checking on Abby and our family.
Love to all,
Heather
Sunday, October 7, 2007 10:19 PM CDT What a great and very hot weekend. Whew, the humidity was just a bear this weekend...so strange for October. We couldn't really have Abby outside much because the heat and humidity are just too hard on her. However, we had a great weekend in spite of the weather. On Saturday Mark hung out and took care of the girls while I cleaned out the garage, sorted all garage stuff, and got it ready for winter as well as mowed and weed whipped the yard. This was good for both of us. Mark started his new position at work this past Monday and saying the week was busy is an understatement. He didn't get to spend much time at home, so it was really nice for him to have some time this weekend to catch up with the girls. I was glad to just put some sweat equity into the garage and yard and get some good hard work done. Then Mark's parents joined us for dinner on Saturday evening, we made BBQ ribs on the grill...so yummy. The weather had cooled off a little by dinner time so we ate outside and the girls ran around in the yard playing princesses with Grandma. I think that Grandma was "the beast" most of the time. She is such a good sport. The girls love spending time with Grandma and Grandpa. Then after the girls were tucked into bed we had a chance to play some cards with Mark's parents. That was so fun because we hadn't played in a long time. On Sunday we headed to Apple Valley to spend the afternoon with Oma and Opa and Uncle Michael, Aunt Mindy, and cousins Michael and Benjamin. This was a very fun afternoon. Oma and Opa just got back from spending a week on the New Jersey shore so we got to hear all about their trip. It sounds like they had a wonderful time. Abby and Clare love to play with their cousins, so it was an exciting afternoon.
Tomorrow morning (Monday) I will take Abby to the U of M for her check-up and some routine tests. We will see her transplant coordinator and future transplant cardiologist. I don't anticipate any big news to come from this visit, but I will be sure to update tomorrow after her appointment just to let everyone know if there is anything important to report.
We hope that you all had a great weekend. Thank you for continuing to check Abby's website. We are so thankful to have our wonderful family and friends. Please keep praying for the perfect heart for Abby to come soon.
Love to all,
Heather, Mark, Abby, Clare and Eva
Tuesday, October 2, 2007 11:01 AM CDT Hi everyone,
Sorry that we haven't updated this week. No news is good news. We had a great weekend and a good start to this week. We have some information about another fundraiser that is coming up this weekend for Abby.
The fundraiser is going to be a youth/teen/adult event with many awesome bands performing.
Here is the information that we know:
Date: October 6, 2007
Time: 5:00 PM
Location: The Core at Cornerstone Church, Oakdale, MN
3000 Hadley Ave N, Oakdale, MN 55128 651-773-0351
Details: Many bands will perform including My My Misfire & Letters To The Queen. Wristbands will be sold at the door.
This is being planned by a young lady names Alyssa and her friends. We hope that you are able to attend this event. Sorry that we don't have more information to post at this time, but we have not been in the loop on the planning of this fundraiser and do not know many details at this time. We will post more specifics as the week goes on.
Other news...Clare got a "big girl bed" on Sunday. She loves it. She was up many times the first night in her new bed, but last night she slept much better. It is super fun to see both Abby and Clare in their big beds. Our little girls are growing up way too fast.
Eva is almost crawling. She manages to scoot everywhere. When she does finally figure out how to crawl we are all going to need to look out. She will be into everything. She also loves to growl. It is her new fun sound.
Abby is doing really well. No colds and for the most part feeling excellent. We will go to the U of M next Monday for a day of check-ups and meet with her cardiologist there. I expect that everything will go well, just a routine visit while we wait for her new heart.
More later...the girls need me.
Love, Heather and family
Monday, September 24, 2007 3:03 PM CDT THANK YOU, THANK YOU, THANK YOU to everyone who coordinated, executed, danced, and watched the "Dance Is in My Heart" benefit for Abby this past Saturday. It was an incredible day; better than I could have ever imagined. Abby had so much fun watching the dancing and seeing everyone in the stands. I am still not sure that she really understands that everyone was there for her, but someday she will. Thank you.
Some special thanks go to:
Blaine Beety, Abbie Goedert and Sydney Wolf from Chaska High School DECA for doing such a fabulous job coordinating the event. And all the other DECA students for helping the day run smoothly.
Kris Rydland, Head Coach of Chaska Dance Team, for all her work coordinating the event and making the day run so smoothly.
Cindy Clough, Head Coach of Brainerd Dance Team and Just For Kix Owner and Jill Leste, Head Coach of Maple Grove Dance Team, for dreaming up the event and getting the ball rolling.
Matt Wallace for running the sound and keeping everything in order and flowing, you did a great job.
Also, thank you to all the sponsors of the event.
And thank you to all the wonderful dance teams that participated in the day. You all did an amazing job dancing and you did something so important for our daughter Abby. We are forever thankful to you all. I am so proud to be a part of the MN dance community. It is awesome.
We are forever thankful for what all of you have done for Abby and our family.
Love,
The Ostlies
Mark, Heather, Abby, Clare and Eva
Friday, September 21, 2007 1:43 PM CDT NEWS NEWS NEWS NEWS NEWS!
No, Abby did not get a heart, but she is going to be on TV tonight.
Tom Lyden from Fox 9 News just spent about 1.5 hours at our house interviewing Abby, Clare and myself about the benefit tomorrow (Eva was sleeping). It was great because I was also able to call the DECA students (Sydney Wolf, Abbie Goedert, and Blaine Beety) and they were able to get out of school to come over for the taping. They have worked so hard to make this event happen, and I wanted them to be able to tell all about it. They did a great job on camera.
Abby will be on the 9:00 PM news tonight, Friday, September 21st. The specific airtime is slotted for 9:18 PM, but this could change. They might run some promo spots earlier in the evening, so tune in to Fox 9 News this evening.
Thank you to Tom Lyden and photojournalist Jeff for coming out to tape Abby and continue her story.
Keep praying for her new heart.
We hope to see many of you tomorrow at the "Dance is in My Heart" benefit.
Love, Heather and family
Monday, September 17, 2007 2:09 PM CDT We are getting so excited for the "Dance Is In My Heart" fundraiser on Saturday. I met with Kris Rydland (Chaska Dance Team Coach) and the DECA group that is organizing the fundraiser last night to go over some final details. It is going to be an amazing day. I hope that many of you are able to make it on Saturday. The weather is looking good, so we will keep our fingers crossed for nice sunshine that day.
Mark is up at Madden's until Wednesday evening for a work planning session. We will miss him while he is away, but this is a great opportunity for him as he transitions into his new management role.
Abby is feeling good. She is wearing her big girl underwear all the time again now (except when she sleeps). She is doing really good, even with the heavy diuretics. During the hour or two after she gets the diuretic she has to go potty a lot, but it works well since we are not out and about too much right now. She is proud of this accomplishment and it makes her feel older. The home infusion nurse may have to come back and draw labs again later this afternoon, because she forgot to stop Abby pumps when she drew labs this morning, so the sample was tainted. The numbers are all off and I am sure that it is just a bad blood draw. But, just to be sure they will probably send someone back to redraw the labs again tonight. Bummer.
Everyone here is sleeping right now, so I am going to take this chance to get some dinner started before they wake up. Homemade chicken noodle soup and warm breadsticks. Sounds pretty good huh?
Have a great Monday.
Love, Heather
Tuesday, September 11, 2007 3:23 PM CDT We had an exciting and unexpected dinner guest last night...Dr. Singh came to see Abby and stayed for dinner. He is not in the routine of making house calls, but he made an exception in Abby's case so that she would not have to make a trip into the clinic (where there is so much potential for getting exposed to more germs). This was very kind of him and we appreciate it so much. Plus, it was quite a treat to get some special one on one time with him. Usually at the hospital he is incredibly busy and doesn't have time for much chit chat and casual conversation. We talked a bit about his childhood in India and coming to New York for his post secondary schooling. He also talked about how he got interested in pediatric cardiology a little bit. He is such an amazingly intelligent person; it is awe inspiring to be around him. He said that he really enjoyed seeing Abby, Clare and Eva interact with one another. He noted that he doesn't get to observe kids in their homes too often, because usually he only sees them at the hospital, and this is when kids are the most sick. He seemed to just enjoy being around them. It was obvious to him that Abby is thriving more at home than in the hospital and it reassured him that it was the right choice for her to come home and wait here for her new heart. Abby is very comfortable around Dr. Singh and doesn't hesitate to give him and hug or just treat him like she would any family friend that was over for dinner. Even Clare climbed up on his lap and inspected his beard. It was really cute. Then Abby rode her trike for him before he left...that was a fun site for him to see. Heart wise he said that she sounds stable, and that was that.
Then this morning we had another fun visitor. Abby's HLHS friend Riese and her mom Lindsey and grandma Donna came over to play for a little while. Riese and Abby get along so well and now Clare is old enough to get in the mix with them also. I don't think that Riese really wanted to leave when her mom said that it was time to go. We will have to try and get those girls together more often because they have such fun together. Thanks for coming to visit Riese!
Tonight Mark and I are going down to Children's Hospital to hear Dr. Singh give a presentation on 20 years of HLHS. It should be a very interesting evening. The event is being put on by Parents for Heart, which is a non-profit organization for parents and family members of kids with heart conditions. We are looking forward to it. Grandma and Great Aunt LuAnn are coming over to watch the girls.
We hope that you are all having a good start to the week.
God Bless, Heather and family
Wednesday, September 5, 2007 8:34 AM CDT Good morning everyone,
I have updated the fundraising section of Abby's website to include the upcoming "Dance is in my Heart" dance show fundraiser on Saturday, September 22, 2007 at 1:00 PM at Chaska High School. The list of high school, collegiate, and professional dance teams performing in the show is amazing! This is a show that any current, past or future dancer or dance enthusiast is sure to love. Check the fundraising section of the website for more details and an updated list of performing teams.
Now a really fun Abby story. This past weekend she peddled her trike all the way down our street and back up the bike path that runs behind our house. This is a LONG way for her to go. She wanted to do it all by herself and she did! Honestly, since she has been home she has gained back so much leg strength and her will to do things for herself has improved greatly. We got some video tape of her riding, and the next time I will have to take some pictures so that we can post them on the website. Her IV pack is able to hang on the back of the trike, and this makes it even more amazing because she is toting around the extra weight from her pack. What a good girl.
We hope that you all had a great Labor Day weekend and that everyone is enjoying the start of school. Abby really wishes that she could be attending preschool again this year, but we have explained that it would not be good for her to be exposed to all the germs until after she gets her new heart. I do wonder what she thinks a germ is? We have explained that germs can make a person feel sick, but still this has to be a difficult concept for a 4 year old. She will definitely be ready to start kindergarten next year if her body is ready.
Well, I hear Eva waking up so I need to go get her.
Have a good day everyone!
Love, Heather, Mark, Abby, Clare and Eva
Friday, August 31, 2007 3:08 PM CDT I am so excited to tell everyone about an AWESOME fundraiser that is coming up on Saturday, September 22, 2007 for Abby. Here is some information; we will also be adding this information to the fundraising portion of Abby's website very soon.
DANCE IS IN MY HEART
Hosted by the Chaska Hawks Dance Team and Chaska High School DECA
September 22, 2007 at 1:00 PM
Chaska High School
The fundraiser will include performances by 24 high school, collegiate and professional dance and cheer teams!
Here is a partial list of the performing teams:
MN Vikings Cheerleaders
Blaine High School Dance Team
Burnsville High School Dance Team
Centennial High School Dance Team
Chaska High School Dance Team
Eagan High School Dance Team
Eden Prairie Pom Squad
Lakeville North High School Dance Team
Maple Grove High School Dance Team
St. Francis High School Dance Team
Totino Grace High School Dance Team
Wayzata High School Dance Team
And a special performance by many youth Just For Kix dancers who will be attending a dance clinic that morning and learning a special dance for Abby.
As many of you know, I was the co-head coach of the Maple Grove High School Dance Team from 2000-2003 and was the Head Coach of the Fall Chaska High School Dance Team in 2006. I also directed the Blaine/Coon Rapids Just For Kix program from 2001-2002 and Directed the Chaska and Waconia Just For Kix programs from 2006-2007. Dance is my passion, and I can tell you that the teams listed above are the highest caliber teams in the state of MN! This is going to be a spectacular show!
If the weather is nice the show will be held on the football field at Chaska High School, if the weather is not good then the show will be held in the main gym. Concessions and t-shirts will be sold at the event.
This event is being coordinated by my friend and head coach of the Chaska High School Dance Team, Kris Rydland, my friend and owner/founder of Just For Kix, Cindy Clough and a wonderful group of students from the Chaska High School DECA organization and the Chaska High School Dance Team. I am sure that there are many others who are helping to make this event possible, so thank you to all of the amazing people who are helping to coordinate this event. I was just telling Kris on the phone today how truly humbling it is to have an event like this planned on behalf of Abby. Thank you!
I just can't express how much I am looking forward to this event. It is going to be such a great day!
If you are reading this entry and would like to help with the event in some way please contact Kris Rydland at rydlandk@district112.org or Abbie Goedert (DECA) at goat08@hotmail.com. We will have more detailed information on the website as plans are finalized.
Mark your calendars for Saturday, September 22nd and come to "DANCE IS IN MY HEART" at Chaska High School.
On a separate note, Abby is doing well today. I have posted some new pictures.
Also, please know that I do not check my email very often as I am usually too busy with the kids to get a break. If you need/want to talk with me always feel free to call my cell phone. 763.360.9937 I really do want to hear from you so please don't hesitate to pick up the phone.
Love to all, Heather
Thursday, August 30, 2007 12:46 AM CDT Hi everyone,
I can't believe that we are already approaching Labor Day weekend...where did the summer go? I guess that these nice summer days just slip away from us as we enjoy time with our family and friends. For those of you that are getting kids ready to head back to school we wish you all health and a smooth transition back into the school routine. For us Labor Day weekend again brings the question to mind "will this be the weekend that Abby gets a new heart?". We will just wait patiently to find out.
I just put Abby and Clare down for a nap and Eva is still sleeping so I have a moment of peace. The past hour has been frustrating as Abby and Clare needed some discipline. They were arguing with each other (about who knows what) and Abby starting screaming and crying like someone had just severed one her limbs. This is not ok! I told her to be quiet, because Eva is sleeping, but she just proceeded to yell and fuss. Then Clare started in, and that is when we had to have a serious chat about behavior. The movie that they were watching got promptly stopped, and there will be no more movies for today. I sat them both down and explained (in my mean mom voice, while giving the evil eye) that their behavior was not acceptable and that if there is a problem they should just ask me to come and help work it out. I still never found out what they were fighting about, and it doesn't matter, but they do need to be good girls. Then I put them down for a nap and they were all weepy and pathetically sad. This makes a mom feel terrible, but I have to stand my ground, or I know that they will run over me. Abby wanted a song before she fell asleep and I said no that they should both just close their eyes. Uhggg...now as I sit here and write this entry I feel terrible. I think that discipline was the right thing, but sometimes it makes my heart hurt. I know that they will still love me and all will be forgotten later, but it just doesn't feel like it now. I am sure that many of you moms and dads out there can totally relate to this type of situation.
Abby's blood pressure has been better lately. It is staying steady. She does have a runny nose, but it doesn't seem to be getting her down much. She is eating well and happy (except when she is being disciplined).
Abby was selected to be one of the wish kids that will be in the Make-A-Wish Stories of Light campaign at the MOA this winter. There are wish trees placed all around The Park at the MOA and each features a Make-A-Wish child. This is one of the largest fundraisers for MAW and it allows them to grant almost 70 wishes. So, we will let you know when the trees will be up so that you can stop by and look for Abby's tree. MAW has asked that anyone who is interested in helping to grant or fund Abby's wish contact the MAW foundation. www.wishmn.org or 612.767.9474 Hopefully, when Abby has her new heart and is fully recovered she will be able to take a trip to Disney and meet her favorite princesses.
Oma and Opa (my mom and dad) gave us an awesome gift this past week. They gave us their piano! This is the piano that I learned to play on many years ago. We are so excited. Abby is very interested in taking lessons and we think this is something that she could do without being exposed to lots of other kids and germs. We will be meeting with a piano teacher from Waconia next week who teaches the Suzuki method of piano, where kids don't have to know how to read notes yet. Hopefully it will work out because this will be great for Abby, especially since she won't be able to attend preschool this fall.
This is getting really long, so I will sign off for now. Enjoy your Labor Day weekend and we will be sure to update if there is any news to share.
Love, Heather and family
Thursday, August 23, 2007 2:33 PM CDT This will be a short journal entry, but I did want to update and let you all know that Abby is doing well and we have just had a busy week so there has not been much time to update.
Abby's blood pressure is a little low. The home infusion nurse was a bit concerned about this today. We checked it 4 or 5 times and it was consistently low, so I just gave a quick call to Dr. Singh, just to let him know and see if there is anything different we should be doing. I actually got to talk with him because he was in his office during clinic hours. He said that we should just watch the BP close and let him know if it dips any lower. He didn't seem too concerned. He said that we should watch her more and judge by how she is feeling. So, we will keep an eye on the BP and make sure that it stays within an acceptable range.
Eva had her 6 month well baby visit yesterday and she weighs 22 lbs. What a little butter ball baby. It is awesome. She does carry it well because she is also in the 97 plus percentile for height. She is well proportioned. Everything checked out perfect with her. She did have two shots and then ran a mild fever over night, but seems to be just fine today. She is an awesome baby. We just could not love her more.
Clare is doing great also. She is a very happy and easy 2 year old. She mostly goes with the flow. Never much complaining from her. I wish that I had more time lately to just cuddle with her, but I do take every chance that I get. She will be happy when her sister gets a new heart.
So, that it my update for now. I am taking the girls out to Grandma and Grandpa Ostlie's farm for the night. Our van needs some repairs, so we are taking in to a shop in Silver Lake early tomorrow morning. It will be easier to stay their tonight rather than get up super early tomorrow and try to get all of Abby's meds and cares done in a hurry. So, we are looking forward to a fun night at the farm. It is our first sleepover there since before Abby was in the hospital.
We hope that you all have a great weekend.
Love, Heather and family
Thursday, August 16, 2007 5:27 AM CDT Thank You
Two weeks ago tonight many of you good folks gathered for a “Party in the Park” for our benefit, so this thank you is long overdue. We were, quite regretably, unable to attend. The night of the party we had a sick family at home and Abby was having a tough week. Thank you especially to Deb Schultz, Matt Nepstad and Adrian Walker for coordinating this event and to all of you who attended and helped make it happen.
We truly appreciate the fact that so many of you attended and contributed for our benefit. Many of you are from General Mills and have been supporting us with great love and thoughtful actions throughout this ordeal.
Over the past months, we have been blessed by the generosity of many wonderful people. We want to express our deepest gratitude. All of you have enabled us to stay present with the affairs of our family rather than being drawn to constant financial concerns. This is a gift and a blessing that you have made possible.
Thank you and God bless,
The Ostlies
Wednesday, August 15, 2007 2:32 PM CDT Can you believe that all three of my baby girls are actually asleep at the same time? WOW! I have quite a bit to do in preparation for baptism tomorrow. I want to just spruce up the house and mow the yard so that it feels good to have people over. I suppose that will require me to pick up and put away the 8,426 Barbies, Polly Pockets and Princess toys that are currently strewn across the entire living room downstairs...hmmm I ponder...I better wait until after the girls go to sleep for the night otherwise my effort to clean up will surely be undone as soon as they wake up from their nap. HA HA! It is great to watch Abby and Clare play so well together. Wait until Eva can get moving and get in the mix...watch our older sisters she is sure to give you a run for your money.
Today was a busy morning. It was a triple IV bag change day, plus the two other IV meds, and oral meds. I also gave all the girls a bath this morning and changed Abby's dressing on her chest. This might not sound like a long list of to-dos, but it took me 6 hours to accomplish it all. Well this also included making breakfast, snack and lunch for the girls, so maybe it took a little less time. Anyway, it was busy.
I don't really have much news to report today, I just wanted to update and tell you all that we think of you often. We wish that we could invite all of the over and just have a big party, but it will have to wait until Abby gets a new heart and is feeling good. We can't say enough how much we appreciate the prayers and love and support.
Happy Wednesday everyone.
Heather and the family
P.S. One more thing...being that you are all such awesome prayer warriors, could you please say some big prayers for a little boy named Isaac Lieser and his family. Isaac is enduring a terrible battle with stage 4 neuroblastoma (cancer) and he and his family need some prayers. Like our family, his mom Linda gave birth to his baby brother just weeks before they found his cancer and the baby is staying at the hospital with Isaac and his mom. Isaac also has two older brothers who are at home with their dad. Isaac's family is broken apart just like ours was and it is terrible. I know that they would appreciate the prayers. If you have time stop by his website and sign the guestbook.
www.caringbridge.org/visit/isaaclieser
Tuesday, August 14, 2007 10:28 AM CDT Well, we got all three of the girls on antibiotics last week and the cold symptoms seem to be subsiding. Thank goodness. Their pediatrician thought that maybe it was a sinus infection and that was why it was not clearing up and it had been nearly two weeks for Clare and Eva. We just could not let them keep on suffering and not getting better. Especially Abby because colds just knock her down so much more than a healthy child. Abby still has a bit of a runny nose, but it is so much better than a few days ago and she has been sleeping good again so that always helps things get better.
Eva turned six months old two days ago. She is such a wonderful baby. We just love her so much. I swear that it is a rare occasion that she gets upset. Normally she is just all smiles and so cuddly. We are blessed with her.
We had dinner at Oma and Opa's house on Sunday evening and the girls ended up putting their feet in the pond in their yard and then Clare and Abby pretty much just ended up swimming in the pond. It was just such a hot evening and the water felt so nice...I can't blame them. Mark and I each had a girl and had our shorts rolled up as far as they could go so that we could hold onto the girls in the deepest part of the pond. It was good summer fun. We took some pictures, so I will post some when more time allows.
We are going to have Eva's baptism at our house on Thursday evening. Our priest from St. Gerard's was nice enough to say that he will come to our house. It will just be a small family gathering. It should be very nice.
Well, I think that is all for now.
Thank you for checking on Abby and our family.
Love to all! The Ostlies
Thursday, August 9, 2007 3:09 PM CDT Hi everyone,
Abby had a pretty hard night last night. She just coughed the entire night and threw up several times because she got to coughing so hard. It just didn't seem that she could relax enough to finally fall asleep. She was sleeping pretty hard this morning and I had to wake her up when the home infusion nurse came to draw labs and do her cares. The HI nurse said that Abby's lungs sound clear, so no pneumonia, which is really good. But her bronchials are very irritated and her constant runny nose just makes her cough and get an upset tummy. I talked with Abby's pediatrician this morning (and yesterday) and she decided to put Abby, Clare and Eva on antibiotics. She feels that maybe they have some sort of sinus infection and the antibiotics will help to get it cleared up. So, for the next 14 days they will all take two doses a day. In a way this is good, because then Abby is not the only one taking medicine at our house. Hopefully these meds will work and get this darn thing cleared up.
Other news...I spoke with the transplant coordinator from the UofM yesterday. Her name is Paula. I just wanted to touch base with her, let her know about Abby's cold, and just chat. The good news is that having a cold would not affect whether or not Abby could get a heart. The only time they it would be dangerous for Abby to get a heart would be if she had a pneumonia or is she was running a temp (fighting an infection). So all is well from that perspective. The most interesting thing that Paula shared with me is that Abby has received several offers for a new heart. However, the medical team has chosen to turn down the offers because the hearts were in some way imperfect. They want Abby to get a perfect new heart and because she is still doing well medically while she is waiting they won't settle for a heart that is not functioning perfectly. We appreciate that they only want Abby to get the best heart possible. It does still give us goose bumps though thinking that offers are being made and turned down and we are completely unaware. It is a weird feeling. We can't imagine what it will be like when the call actually comes...a flood of emotions.
Mark and I have been distracting ourselves from all the medical stuff by reading the last book in the Harry Potter series. It is fun just to take ourselves into a total dreamland for a few minutes each night before we go to bed. We are about half way done with the book...so if you have read it please don't share anything about the ending...we want it to be a surprise.
It is hard to believe that we are already in mid August. Back in May I thought that this was going to be the longest summer of our lives, but since getting Abby home it really has been going fast. Abby and Clare are so much fun to watch when they play together. They pretend and imagine things that are well beyond the ages of 4 and 2. Abby said the other day, "mama I was just imaginationing...". She didn't get the word quite right, but it was fun to hear her try. Eva is just awesome. She is getting so big. She is almost able to sit up on her own. I got her an exersaucer today and you should have seen her face when she first got into it...priceless. She was so excited. I will have to take some photos tonight and post them for you all to see.
Thanks for all the prayers and support.
Love to all,
The Ostlies
Tuesday, August 7, 2007 2:00 PM CDT Hi everyone,
Well Abby is down and out with this cold. She has a very runny nose which seems to be constantly draining, and most of it goes into her tummy. This makes her tummy feel sick and she has been throwing up quite a bit in the past 24 hours. Also, she has a loss of appetite and just not a lot of spunk. She and Clare are both napping now and I hope that she will have a restful nap without much coughing. Her spirits are still pretty good, but it is obvious that she is feeling under the weather. She said today when we were eating lunch that she wanted to pretend that today was the day she gets her new heart. I told her that we could pretend, so we talked through everything that will happen on that day. In my head I was actually thinking that I hope she does not get her heart today, because I want her to be feeling 100 percent good when that call comes. We are doing everything we can to make her feel better, but her body just takes longer than normal to heal because it is fighting all the time to just keep working.
We would like to send a special thank you to two very special sisters...thank you to Katherine and Sarah Voelkers from Minneapolis for playing your violins on Nicollet Mall to raise money for Abby (and thank you to their parents, Larry and Dawn, for helping to coordinate this special event). This was such thoughtful idea and we are all touched that you would take time to do something so nice for Abby. Thank you also for the little gifts that you sent along for Abby. She is sharing them with her sister Clare and having lots of fun. God Bless you!
Not much else to report today...just waiting for God to send Abby a heart.
Love to all,
The Ostlies
Monday, August 6, 2007 1:51 PM CDT Dear Friends,
Sorry that we did not get another update out on the website this weekend. Abby spent one night in the hospital and then she was able to come home on Saturday afternoon. The nurse on 3rd floor, Vicki (she is awesome), was able to repair Abby's broviac IV without needing to send her to surgery. So, they did the repair and then decided that it was necessary to keep Abby overnight for monitoring and blood work. In the late morning all of the lab results came back and they were normal. Abby does have a bit of a cold right now...runny nose and cough. This makes it hard to sleep at night, but we are trying to manage through it with some cold medication and extra rest and keeping vigorous activity to a minimum. She seems to be handling the cold fairly well and we will just hope that it gets better quickly and doesn't bring her down too much.
Thank you all so much for your prayers and words of support. We appreciate them all!
I need to go and tell Abby and Clare that they need to take a nap now...this will be the second time I have put them down for a nap. They tend to be little chatter boxes when they first lay down.
Love to you all,
Heather
Saturday, August 4, 2007 2:50 PM CDT Dear Friends,
Well here is what happened since I updated last night.
Abby did have her Broviac IV repaired in the ER, but unfortunately the nurse that did the repair started up the IV medications right away instead of waiting until the glue was completely dry and before Mark and Abby even reached the car the line separated again and Abby was bleeding all over and they hurried back into the ER. Then Dr. Singh came in to admit Abby to the 3rd floor again. They had to get a peripheral IV line started in her hand to give the IV meds. This did not go all that well, but eventually they did get it started. The question this morning was if they would need to surgically repair the Broviac or if there was enough of the existing line left to attempt another repair. Luckily they decided that there was enough line left to attempt another repair. The repair went well and the Broviac line is now in working condition. So, the good news is that we will be able to go back home today.
While Abby was at the hospital they also did an echocardiogram just to look at Abby's heart function. The echo did not show a very good ejection fraction (EF). The percent was only 20. This is very low. However, the actual heart function did not look much lower than the last time it was checked. Sometimes these echoes do not have great accuracy in determining EF, so we hope that it was just off a bit. But, in any case there is a possibility that Abby's heart function has deteriorated since the last time it was checked.
Bottom line...Abby needs her new heart soon. It would be ideal if her heart would come when she is still strong and eating well. The sooner the better.
Well, as soon as Abby takes her oral medications and we get her hooked back up to her IV backpack pumps we should be on our way home.
Thank you all for checking on Abby and praying for her and our family.
We hope that you all have a nice weekend.
Love, The Ostlies
Friday, August 3, 2007 11:12 PM CDT Hi everyone,
We are in need of some prayers tonight. Let me start from the beginning. This week both Clare and Eva have had runny noses and head congestion. Abby didn't seem to have any symptoms until today. She started having a dry cough and just couldn't kick it. Her stomach was also upset for much of the day. This evening we went to the Ostlie farm for dinner with Mark's family (his brother Mike and wife Jackie are visiting from Colorado). Abby was not feeling well toward the end of our time at the farm and she threw up quite a lot. We made it home and then she threw up again after taking some tylenol. She is running a fever and feeling pretty crumy. Then I went to pick her up off the couch to carry her to her room and her Broviac IV completely separated where it had been repared just a few weeks ago. Blood started to pour everywhere. Mark was very quick thinking and grabed the clamp that we have for just such situations. So we got the bleeding stopped, but she was obviously scared and still not feeling well. So, Mark immediately put her in the car and took her to the Children's Hospital ER. We are hoping that they will be able to repare the Broviac again, but it seems likely that they will have to do surgery to repare the line. Not good. A small surgery would mean probably a few days in the hospital again. Please pray that they are able to repair the Broviac without surgery and that Abby's temperature and cold do not get any worse.
I will update again when I have more information from Mark as to what they are planning to do.
Wow does this just stink...poor baby girl. She is so brave.
Love,
Heather
Wednesday, August 1, 2007 6:54 AM CDT Good morning! Abby’s back home and doing very well. Her recent stay in the hospital appears to have just been a bump in the road. We still don’t know exactly why she lost conciousness and her body was in distress, but we are watching her closely.
The discharge Doc told us we could go up on Abby’s fluid intake as she’s quite active at home. This will be a nice change, but we’ll have to monitor her for fluid retention because of the effect it has on her (congestive heart failure). Previously she was only getting a maximum of 20 ounces of water per day. We may be taking that up by about 10 more ounces!
God Bless and thank you for checking on us.
The Ostlies
Event Reminder: Thursday, Aug 2 at Brookview Park (located just across from General Mills, behind the golf course) from 4:30 – 8:00 PM. Friends from General Mills are planning this “Party in the Park” and it is sure to be a good time. Consider yourself invited. You can find out more by opening this link.
Monday, July 30, 2007 2:39 PM CDT Abby's back in the Hospital, but hopefully not for long.
Early this afternoon she started complaining about feeling sick and pointing to her chest as the source of her "ouchy". She was not in the heat at all, but was sweating while very cold to the touch. She then had a sudden change in conciousness and was not responsive.
Heather wisely headed for Children's Hospital. Abby's received some extra volume in her circulatory system. Her blood glucose level was quite low too, even though she's eaten well today. We don't understand exactly what's happened, but Abby is responsive, alert and hungry now; all good signs.
We hope to understand this and get her home quickly.
Please continue to pray for Abby and our family.
God Bless – The Ostlies
Event Reminder: Thursday, Aug 2 at Brookview Park (located just across from General Mills, behind the golf course) from 4:30 – 8:00 PM. Friends from General Mills are planning this “Party in the Park” and it is sure to be a good time. Consider yourself invited. You can find out more by opening this link.
Thursday, July 26, 2007 9:29 AM CDT HAPPY BIRTHDAY TO YOU!
HAPPY BIRTHDAY TO YOU!
HAPPY BIRTHDAY DEAR ABBY!
HAPPY BIRTHDAY TO YOU!
What a great day! Abby is 4 years old!
She is feeling great this morning and having a very fun time (as usual) playing with her sisters. We are planning to have a fun day at home staying out of the blistering heat. This day reminds me so much of the day that Abby was born. It was the hottest day of July in 2003 and the sun was shinning bright, much like today. Abby was born at 7:00 AM exactly and she was 8 lbs 2 oz, and such a beautiful baby.
Wow how time goes so quickly, it is really hard to believe that she is already 4 years old. Abby has been such a joy these last 3 weeks of being at home. She is thriving and we can definitely tell that "there is no place like home". We pray for her heart daily and she says sometimes that she can't wait to get her new heart. I trust that it will happen exactly when it should. I do think that it was a good sign of preparation that Eva took a bottle, because this will make being at the hospital again easier for all of us.
Well, we will update more later with some fun birthday pictures.
Love to you all!
The Ostlies
Wednesday, July 25, 2007 10:35 AM CDT Hello and thank you for checking up on Abby and our family. Everyone is feeling really good and enjoying time together. Abby had a checkup a little more than a week ago and her heart is functioning just as it has been for months, very poorly. Despite the test results she has good energy and is enjoying life at home tremendously. We are all so happy to have her home and excited to celebrate her birthday this coming Thursday. Wonderful.
We know that as soon as the call comes the new heart for Abby is critical, but these past weeks have been so wonderful. It’s easy to feel a little conflicted as she continues to appear strong and feel false hope around her need for a new heart. We did end up in the hospital unexpectedly one day last week. This was not due to how she felt, but rather because we had damaged her implanted IV lines by playing hard. There was some discussion with a surgeon around replacing the lines. Luckily a successful repair was made instead and we avoided a few days in the hospital.
Clare and Eva are also doing well. Eva started to take to a bottle for the first time. As you can imagine, this opens some possibilities for Heather. She may even go to an early movie with friends next week. Fun.
Thank you to Melissa, Randy and all of you that participated in the Ride for Abby. There are great pictures at www.eagleriderofknoxville.com.
I’d also like to mention an event that’s coming up next Thursday, Aug 2 at Brookview Park (located just across from General Mills, behind the golf course) from 4:30 – 8:00 PM. Friends from General Mills are planning this “Party in the Park” and it is sure to be a good time. Consider yourself invited. You can find out more by opening this link.
God Bless,
The Ostlies
Monday, July 16, 2007 5:40 AM CDT We’ve had a great, but busy past week as our whole family has been together and falling into a routine. All of us are feeling pretty well. Abby still has some chest congestion that is affecting her oxygen levels and a bit of a runny nose, but in general she is able to go, go, go until she’s pooped out. She tends to take nice long naps and has no problem letting us know when she’s had enough and needs to take a rest.
Clare and Abby are really enjoying each other. They share a room and chat it up all the time. They play well together and have normal sibling challenges when it comes to sharing and wanting whatever the other has.
Abby had some tests at the UofM this past Thursday and they saw no change in her heart function. It’s good for her to start to get used to the people and the facility. Home care has been going very well. Heather has been primary in doing this now and is feeling very confident.
On Saturday, our friends Penny and Kathy came over to help us so that we’d have some time to get things done around the house. It was a great afternoon, but Heather and I ended up going to urgent care after the hedge trimmer attached her thumb. She’ll have to adjust using nine fingers for a week or so, but will be okay in the end.
Yesterday we brought Abby to my parent’s farm for the first time in over five months. She was so excited. She looked over every room in their house to confirm that it was as she remembered. Tractor rides with Grandpa were also a highlight as always.
Hope this note finds you well.
God Bless,
The Ostlies
Sunday, July 8, 2007 11:57 PM CDT Hello All – It seems that despite our best efforts, Abby’s sick. Right now it’s just a lot of sneezing and a runny nose, but if it’s the same thing the rest of our family has taken our turn battling, it will be followed by chest congestion etc.. We’ll need to be quite vigilant monitoring her on all fronts. Our family will be reunited by Monday afternoon. Since everyone is getting over the same cold, we see no additional danger in having everyone at home.
The care and administrations of medicine at home has been very manageable. Once you move past the critical nature of what you’re doing, the task themselves are not that difficult to learn and repeat. Abby’s comfortable enough with the main nurse that comes to our home to give her the nickname “Tomato Juice”. There just no good explanation for this.
Abby and I have had some good bonding time over the past few days. We’ve played non-stop, gone to several parks when it wasn’t too hot, met Isaac, Abby’s newest cousin, stayed up late to make smores, watch fireworks and fireflies and enjoyed our first movie theater experience together. Movie theater popcorn was a big hit.
I’ve added a couple of pictures from the past week.
Be well and God Bless,
Mark
Friday, July 6, 2007 2:21 PM CDT Could the Ostlie family please catch a break for once? Here is what I mean...
Mark got sick last Friday and was confined to the bonus room for the weekend. Then he started feeling much better and the rest of us thought that we had escaped from getting sick. No chance! On Tuesday I started feeling really yucky, runny nose, itchy throat, and head congestion. I thought that maybe it was just allergies, but then Clare started with the same symptoms on Wednesday morning. So, I packed up Clare and Eva and left the house. We have been staying at Oma and Opa's house for the past three days (thank you to them for letting us stay and for helping with the girls). Now even little Eva baby has this awful cold. So, on the first week that Abby is able to come home from the hospital and we are supposed to finally be together as a family for the first time in nearly 5 months, we are separated again. What the heck?! Abby does not have any symptoms of this cold, so we are praying like crazy that we have avoided having her get sick also. This is the type of thing that could put her back in the hospital. So, please say a prayer that Abby does not get sick. Hopefully we can all be reunited by Monday, but of course then Mark will be back at work. We were also supposed to have Eva's baptism on Thursday evening, but of course that had to get cancelled also because of these darn colds.
What I don't say very often in this blog is that this entire situation really stinks...but just imagine stronger and more descriptive words. Wow, we do try to stay strong, but it is really hard. Having Abby at home is going to be better than having her in the hospital for sure, but it presents an entirely new set of responsibilities and challenges as a parent. We are not just administering Tylenol here...we are talking about major heart meds and other serious drugs. The home infusion company has been really good so far. They have come out to the house every day to check on Abby and all of her meds and IV lines. This helps to reassure us that we are doing everything correctly. Mark has taken on all the responsibility this week, because we just couldn't take a chance of getting Abby sick. Mark is doing a really good job with all of it, and he always stays really calm which is awesome. When Mark goes back to work I will make sure to have help at the house during the day, because it takes about an hour or more each morning just preparing Abby's meds and getting her take them all. Plus, if she wants to walk anywhere we have to carry her backpack for her, because with three IV pumps in it she can't carry it herself. I am hoping that we will get into a routine with all of this and everyone will adjust again to being under one roof.
More than anything I just hope that Abby's new heart comes soon. The sooner the better, then we can get our family back to some state of normal. Please God please let Abby get a new heart soon.
Well, I feel that I have complained enough for today. But really, as I was telling my friend Stef, life if not at all fun right now. Yes, it is great that Abby is home, that we have these beautiful girls, etc. However, life should not be challenging, worrisome, hard, frustrating, and scary all the time. When can we have some fun again and feel just a bit of normality?
One bit of great news...Mark's brother David and his wife Sara had their first baby on July 3rd. His name is Isaac David Ostlie. We are so glad that their little bundle of joy is healthy and that mommy and daddy are doing great also. Congratulations!
We hope that you all had a great July 4th. Summer is here for sure...hot hot hot. Head to the lake if you can.
Love to all and thank you for your prayers.
Heather, Mark, Abby, Clare and Eva
Monday, July 2, 2007 2:27 PM CDT Abby’s home. We arrived with her about 1 hour ago. It’s great. There were a few things that prevented us from coming home earlier, none of which matter at this moment. Tomorrow will bring what it will, but today is a gift and we are thankful. We’ll post pictures when we have a chance. Joy.
God bless,
The Ostlies
Wednesday, June 27, 2007 2:54 PM CDT There’s No Place Like . . . HOME!
That’s right. Abby will be coming home. Home to be with our family for the first time since Feb 13; since Eva was born. I’m at work and cannot type these words without being completely overwhelmed. It’s okay to cry.
The UofM docs and Dr. Singh have decided that Abby can wait at home for her new heart; as long as she remains strong. She will still be on IV medications (delivered via infusion packs) and will need to have a nurse daily at our home, and they may need to adjust the drug “cocktail” that she is currently receiving, but these are simply details. This was completely unexpected for us before the meeting on Tuesday. What a joy this will be.
We are in no position to clearly assess the risk of this, but the professionals that we have trusted with Abby’s life since before her birth believe it’s the right thing to do. Of course we will be expected to take the strongest precautions to keep her healthy and monitor her closely. Her status on the list technically will change to a 1B, but we are told this has no tangible impact, since she will take precedence for any tissue type match that identifies a donor given the current list.
It’s impossible not to have our hopes up that this will happen without a hitch, and they’re telling us that this could happen Friday if we can get the proper training. Sign me up. Meanwhile, Abby knows nothing about this. If this turns out to be a rollercoaster ride, we don’t want her to know.
God bless you all for your prayers and undying support. You make a difference in our lives.
The Ostlies
Tuesday, June 26, 2007 6:54 AM CDT The "Angels for Abby" Benefit this past Saturday night was outstanding! Our biggest thanks to Beth and Bruce Tepfer, Sara and Mark Nivala and Kelly and Bob Kriesel for planning, organizing and executing the event. Also, many thanks to all of you that volunteered to work at the benefit, we know that things ran smoothly and everything was a success because of your help. Thanks to the Tone Cats for providing music and entertainment! Thank you to all of the individuals and businesses that donated items for the silent auction, that was a very fun part of the night for everyone who attended. Finally, thanks to everyone who attended the benefit for Abby. It was great to see so many familiar faces that we know and love and also wonderful to meet many new people that have been touched by Abby's story and came out to show support. Some of you traveled from great distances to attend the benefit and we appreciate your effort so much. Sincere thanks from our whole family for this awesome night for Abby.
Abby had a great weekend. She seems to be feeling much better than last week. She has more energy and is eating better again. Maybe she did just have some sort of bug that was bringing her down or maybe it was a combination of things. Either way we are glad that she is feeling better and has some pep in her step this week. She is looking forward to celebrating her 4th birthday at the end of July. She is talking about it more during recent days. She even invited another heart patient named Whitney, who is 18, to her party. Hmmmm, I guess that means that I need to plan a party. Well, I will start giving that some thought...princesses, cake, maybe a few games.
Abby also often wants to pretend that today is the day she gets her new heart. She wants to hear all about what will happen that day. We pretend that she is riding on the ambulance to go to a new hospital, that she is meeting lots of new nurses and doctors, that she is getting ready for surgery, that she is going back to surgery. Then she asked me the other day, "Mama how are they going to get my new heart in?" Wow, that was a tough question. I just explained that they would open her chest where she has her scar and they would take the old heart out and put the new one in. I also added many times that none of this would hurt and that she would be sleeping when they do the surgery. This explanation seemed good enough for her, but wow she is smart.
We meet with the transplant team from the U of M this afternoon at 1:00 PM. We are not exactly sure what this meeting will entail, but probably it is just a time to check in and see how everything is going. We will update later if this meeting produces and news to report.
Before I end this journal entry, I have an idea that I would like to share with all of you. I know that many of you pray for Abby on a daily or even hourly basis. God does hear these prayers, but sometimes it is nice to know that you are not praying alone. So, I think that it would be really awesome if we could all pause twice a day to pray for Abby and her new heart. If you have time, please take a moment at 8:00 AM and again at 8:00 PM to think of Abby and pray for her (I picked these times because they are usually near the beginning and ending of Abby's day). To me it will feel really good to know that when I stop for a minute to pray that many of you are doing the same thing.
Thank you for checking Abby's website.
Love to all,
Heather and family
Friday, June 22, 2007 9:18 AM CDT Happy Friday and Happy Birthday to Pamela (big sis, auntie and exceptional, faithful person).
Thanks to so many of you who have contacted us or written in our guestbook. We appreciate the kind words and encouragement. It may be difficult for us to respond, but you must know that we are so glad to hear from you whether we’ve met you or not.
Abby continues to be strong. I’m happy to report that her recent echocardiogram results show no decline and Dr. Singh has taken her IV medications back down to her levels of last week without any adverse affects.
I was asked to mention the difficulty with the bracelet vendor and that pending orders have still not arrived. Hopefully this will be resolved soon, but meanwhile, thank you for your patience during this long wait.
There is much more to share, we are so thankful for each day with our family. Abby is such a light and God will chose how and when to proceed. Meanwhile, I was reminded this morning that through Abby’s story many hearts have been softened in one way or another and so perhaps there is a higher purpose to this wait. Thank you Pam!
And thanks to all of you for your prayers; know that they carry us along day in and day out. We draw on your strength.
God bless,
Mark
Questions have been coming about the location of the benefit this Saturday in Rosemount, click here for a map. We’re looking forward to seeing and meeting many of you that pray for Abby and follow her story.
Also, if you know any in Tennessee, send them to www.eagleriderofknoxville.com to join in on a ride for Abby on Sunday, July 8. Thank you to Melissa and Randy for planning what looks like great fun.
Wednesday, June 20, 2007 1:26 PM CDT Abby’s having a good day. Her energy is up and it looks like she must have had some sort of bug this weekend. Obviously, we are very thankful for this. Heather is feeling much better as well and I think we’ve successfully kept Clare and Eva from getting sick. (I’m knocking on wood).
The plan right now is to continue to have Abby wait at Children’s, but if they need to increase her doses of IV medications from where they are today, this will change. The most likely scenario is that she would then move to the UofM into the ICU. It seems strange to consider this today since she’s feeling so well, but swings in how she feels are expected.
Eva had her four-month checkup today, which validated her nickname “Eva-normous”. She came in at 18 lbs 14 oz. Wow. We’re supposed to start feeding her meat and potatoes. I think she’s planning to have a pork chop for dinner.
The Star Tribune had a nice article on Abby today. Read the South or West section if you live in these areas of the Twin Cities or click here if you don’t.
Be well and God Bless,
The Ostlies
Questions have been coming about the location of the benefit this Saturday in Rosemount, click here for a map. We’re looking forward to seeing and meeting many of you that pray for Abby and follow her story.
Also, if you know any in Tennessee, send them to www.eagleriderofknoxville.com to join in on a ride for Abby on Sunday, July 8. Thank you to Melissa and Randy for planning what looks like great fun.
Tuesday, June 19, 2007 0:54 AM CDT Abby’s had a tough couple of days. It may sound odd, but I hope she’s been sick. At least then we could be optimistic that this is just a temporary lull. We felt quite helpless this past weekend as she struggled. Previous to today, Heather and I thought that her IV meds were maxed out, but they were again increased today. With the increase came some discussion about moving her to back to the PICU or to the UofM for closer monitoring since she is now getting potentially dangerous levels of heart meds for her size etc.. We'll see if anything comes of this.
All that said, I thought that she was perkier today than yesterday. Heather also got sick today, so again, I’m praying this is the explanation for how Abby is feeling and that that they both recover quickly. We all need them at their best.
Questions have been coming about the location of the benefit this Saturday in Rosemount, click here for a map. We’re looking forward to seeing and meeting many of you that pray for Abby and follow her story.
Also, if you know any in Tennessee, send them to www.eagleriderofknoxville.com to join in on a ride for Abby on Sunday, July 8. Thank you to Melissa and Randy for planning what looks like great fun.
Maybe tonight will be the night. It’s creeping up on 1 AM and I’ll be happy to get no sleep if the call comes.
Be well and God bless all of you,
Mark
Sunday, June 17, 2007 7:25 AM CDT Happy Father's Day to all the great fathers that we know!
An update on Abby...
Abby is having a hard week. She has not been feeling too good and has been throwing up a lot. It just seems that her stomach is always irritated and she complains often that it hurts. When we ask where it hurts she points to her chest. Dr. Herrington (the UofM surgeon) told us that it is not uncommon for kids to think they have a stomach ache when really it is chest pain due to their heart. Also, the nurses tell us that when a heart patient does not have good blood flow it affects everything, which includes the ability to digest food. It is obvious to us this week that Abby is not feeling well on the cardiac front. Despite not feeling well, all of her vitals remain stable, so that is good. However, it is really terrible to see her in pain, getting sick so much, not having much energy, and in general just feeling lousy. When she feels yucky she asks a lot more about when she can go home and also cries more for Mom and Dad to be there (when we are not able). We hope that this will pass and that she will feel better again, but it just brings to the forfront the exact reason that she is in the hospital...because her heart is failing. I asked a few doctors yesterday if it would help to do another echocariogram, and they seemed to think it was unnecessary. Truthfully, even if they would do another echo and see more deterioration in her heart funciton, there is nothing more that they can do for her. She is maxed out on the IV heart meds and getting a new heart is the only solution. So, each morning we wake up and wonder if today will be the day that Abby gets a new heart and each night we go to bed wondering if tonight will be the night that Abby gets a new heart. For her sake and ours we hope that it comes soon. We know that she will have the best recovery from surgery if her body is strong. Please continue your prayers.
We have thanks to say to so many people, but for today I am just going to write one thank you.
Thank you to my husband for being such an amazing father to our three beautiful little girls. Mark you are an example of strength and love for everyone that you meet. Thank you for caring and loving Abby, Clare and Eva so much. They are all very lucky to have you as their father. Abby is especially lucky to have a dad like you during this difficult time in her life. You raise her spirits and make her happy and she feels safe in your arms. I am proud that you are my husband and father to our daughters. I hope that this year will bring more joy to your life than sorrow. You are a wonderful father. I love you and so do Abby, Clare and Eva.
Happy Father's Day
Love, Heather and family
Wednesday, June 13, 2007 2:41 PM CDT Hello all. We hope your having a wonderful week. Abby continues to feel good. I (Mark) planned to have a sleepover with Abby last night, but I’ve caught some sort of bug so I’m writing from the quarantined room above our garage. Last night at the hospital I started to feel funny and immediately left. It’s so important to keep Abby strong and yet impossible to predict when she could get exposed to something. I’m feeling guilty today and praying that she doesn’t get sick. Abby and I had looked forward to our overnight time together, but she was very understanding when I told her that I had to leave. I called her before she went to bed last night and she was sad but accepted that we’ll have to do this in a couple days.
Heather, Clare, Eva and Oma are with Abby today. This is sure to pick up her spirits. The Star Tribune was down to interview her today as well. We’re told to look for a story next Wednesday.
Heather Tidd of Bumblebee Photography graciously donated her time at the benefit Saturday. Click here to see a great slideshow of pictures from the event. Perhaps you’ll find yourself among these shots.
Be well and God bless,
Mark Ostlie
Sunday, June 10, 2007 11:04 PM CDT The benefit Saturday at Lake Minnewashta Park was absolutely wonderful. It was overwhelming to see all of you that came out to show your love and support for Abby and our family. We will never fully be able to express our gratitude and thanks for the love, friendship, prayers and gifts that you have given to Abby and us. We had such a great time talking with many of you, enjoying the nice weather, eating some excellent food, and just having some good fun.
Special thanks to the five amazing women that coordinated the benefit. To Shalon Novak, Judi Lund, Stefanie Huesmann, Katie Ohlund, and Chris Plambeck...thank you all! You are the best friends anyone could ever ask for. It was so giving of you all to take time to put together this benefit for Abby. We know that you spent countless hours planning, preparing and executing the event. We may never be able to repay you, but we will always love you.
Many thanks also to the dozens of other people who volunteered to help make the benefit run smoothly. Thank you for baking wonderful food for the bake sale, setting up the silent auction, dressing up like fairytale characters, preparing and serving food and drinks, running music, manning the bounce house, painting faces, selling t-shirts, and all the other jobs that needed to be done. We appreciate your time and talents so very much.
Our most sincere thanks to everyone who worked at the event and attended the event. What amazing people you all are and we are very blessed to have you touch our lives. We hope and pray that Abby will have many years of life in her future to get to know you all better and so that she can understand just how loved she is.
Mike Horras was nice enough to video tape at the event and post it on the internet. It's great and there is a link to the video below.
Keep praying for a new heart to come soon.
Love to all,
The Ostlies
P.S. We (Mama, Papa, Clare, Eva and Aunt Angie) were able to take Abby out of the hospital again today for 2 hours. We went to Minnehaha Falls and had a picnic in the park. Abby had a great time playing hide and seek with Clare and just enjoyed being outside and seeing some beautiful scenery. Of course Abby would most like to go home, but these short outings do help to keep her spirit alive.
Thursday, June 7, 2007 4:45 PM CDT Dear Friends and Family,
Yesterday was a VERY EXCITING day for our whole family. We were able to take Abby out of the hospital for 2 hours. Yes, you did read correctly, she was able to leave the hospital with us for two hours, the first time in 16 weeks. We wanted to take her on a picnic, but the weather was so terrible yesterday that a picnic would not have been any fun. So, we drove to Oma and Opa’s house in Apple Valley for lunch and some fun play time. Abby was so thrilled to just ride in the van. She said, “Mom we’re driving in the van!!!” and “I’ve never ridden in the van with Eva!” She was even excited to drive past the MOA and just look at things outside the hospital. When we got to Oma and Opa’s house she just looked at everything and didn’t quite know what to do first. She was happy to have a DQ lunch, she mostly ate the hot fudge sundae…smart girl. The time went by so quickly and then we had to pack up and return to the hospital so that she could be connected to her IV again. Hopefully we will be able to take Abby out of the hospital periodically during the rest of her hospital stay. We do need to be careful about doing this type of thing, because it is very important that Abby stays healthy and strong. So, please understand that Abby will not be attending the upcoming benefits, because it would present too much risk for getting a cold or just plain overdoing it.
We want to say thank you to all the St. Gerard’s parishioners that bought “We Love Abby Leigh” bracelets this past weekend. Your generous gifts are very appreciated. It truly humbles us to witnesses the amazing outpouring of support for Abby and our family. Thank you also to our friends from St. Gerard’s that coordinated the sale, you are all so wonderful.
We also want to send a huge thank you and major hugs to our friends from St. Gerard’s that regularly go and spend time with Abby at the hospital. To Penny, Kathy, Teresa and Katie, without you we would not be able to handle this difficult situation. You make it possible for us to have loving care for each of our girls all the time. This gives us peace and Abby loves each of you so much. Thank you for your gifts of time and your love for Abby.
On another note, there are some fundraising efforts that have gone on without our awareness. If you wish to plan anything, please contact us as there are a couple of simple, but important rules to follow.
Also, many very generous people have sent in gifts to Wells Fargo for our family. Thank you so much. Please understand that, in most cases, if you send a gift directly to Wells Fargo we don’t know who you are. Due to privacy policy we are unable to get copies of the checks that are deposited. If you choose to give by sending a check directly to Wells Fargo, please consider your donation to be anonymous unless you contact us. We encourage you to click here to send us an email to let us know who you are.
One more thing. We have been introduced to an awesome organization called “Songs of Love”. The organization consists of musicians who donate their time and talent to create personalized songs for children who are critically ill. They recently wrote and performed a song all about Abby. The words, music and vocals are by Steffani Bennett. They have recently introduced a Songs of Love Family and Friends Song Download Program. As a way for each song recipient and family to share their “Song of Love” with others they have made the songs available for download for a minimum donation of .99 cents. This donation helps to support their mission of music. To hear Abby’s song go to www.songsoflove.org and click on the Family and Friends Song Download Link. Simply type in the last name Ostlie in the “Child’s Last Name” field and the number 12084 in the “Child’s Record Number” field. You will love the song. Clare listened to it last night and she started crying. She has such a soft heart.
We are looking forward to seeing many of you on Saturday. It is supposed to be a great sunshine filled afternoon.
With love, The Ostlies
Tuesday, June 5, 2007 7:23 AM CDT Goodmorning everyone,
I have added new pictures to the site. They are the professional pictures that our friend Toni Fogarty, from Front Porch Photography in Belle Plaine, captured of our family. The pictures are awesome! Thank you to Toni and Laura for coming to the hospital and spending so much time photographing our family.
Click here to view slideshow
If you would like to see all the images that Toni took of our family go to her website www.frontporchphotos.com. After you click to enter the site go to Client Online Proofing Gallery, then click on The Ostlie Family. There you will be able to see all the great photos of our girls. Toni really has a gift with photography and we are so glad she has shared her gift with us.
Toni also donated photography packages for both benefits, so if you like her photos you will have a chance to bid on a great photo package for your own family.
Not much new to report on Abby. Just waiting...
Love to all,
The Ostlies
Monday, June 4, 2007 7:55 AM CDT Dear Friends and Family,
Again, many days have passed since we last updated the website. I guess that the days are starting to be fairly routine and there are few changes to report. In many ways routine is good, but it is also boring and the days can be long. Abby had a good weekend. Her Aunt Angie had a sleepover with her on Friday night and this is always a fun event for Abby. Angie is young and vibrant and her spirit is good for Abby's mood. We are thankful that Angie is so willing to be involved with Abby and our family, because it makes all of us happy. On Saturday Abby had another visit from her favorite princess Snow White (aka our friend Katia). They did a sticker project together and read some books. Abby asked Snow White, "Where is the Prince?" and Snow White said that he was back at the castle planting flowers with the Seven Dwarfs (aka her husband was at home planting flowers with their two daughters). Abby loved this special time with Snow White. Thank you Katia!!! Oma and Opa also spent a lot of time with Abby on Saturday and again on Sunday. This is great for her and she loves them both very much.
This was also the weekend of "The Big Dig" at our house. As some of you know we had intentions of putting a pond and some other landscaping in our backyard this summer, so half of our yard was still dirt over the winter. Well, we could not have anticipated that Abby would be in the hospital and that we would be in this situation, so we were not sure what to do about the yard. We mentioned to our friends Jeff and Erin Mitchell that we did not want to leave it a big mud pile for the rest of the summer, but that we also don't have the time and energy to complete a landscaping project this summer. So, Erin quickly devised a plan and sprang into action. She and another friend Jeff Perry and his buddy Joe coordinated about 20 people to come over and help us finish the landscaping on Saturday. We decided that a pond was too much time and money for this year, but with the help of all the generous volunteers we were able to get the area grated, add sod, and finish the plantings along with a few other details. What an undertaking! But, now our yard is complete and usable and we don't have to worry about it. How nice to say it mildly. Thank you so very much to everyone that helped, we are forever grateful. Special thanks to Mark’s Dad, Roger, for bringing his tractor and to Mike for bringing and working the bobcat. Thank you also to Mark for all his hard work in the planning and physical labor. He worked really hard this whole weekend to get it all done.
Today my Grandma (Abby's Great Oma) and I and Eva spent most of the day at the hospital with Abby. Aunt Pam and Cousin Emma were also there this morning and Oma and Opa came for the mid day activities. Abby was in a great mood for most of the day until we had to change the dressing on her chest IV line. For some reason the dressing around the IV line has been extremely itchy. We finally decided just to change it a few days earlier than necessary to see if we could help the itching. I removed the old dressing and her skin underneath was all broken out in little red bumps and was so irritated. The nurses are not sure what made her skin breakout like this, but it is clearly very uncomfortable and painful. We cleaned the area very well and let it dry fully. Then we put a new dressing on that was a bit different than before and did not use any duaderm, which is supposed to be a skin protector, but didn't seem to protect at all the last time. Now it doesn't seem to be as itchy. Hopefully it will be much better this week. It is hard too look at Abby's chest when she is naked, and she doesn't like it either. There are just so many little scars and irritated spots from all the IV lines, PD cath, and heart monitoring patches. I just want to tell them to leave all that stuff off for a week or two and just let her skin heal, but I know that it is important to keep her monitored when she is on these heavy duty IV meds. It will be so good to be all done with this after the transplant. Hopefully Abby won't remember much about this time and the physical scars will continually fade with time.
They are going to be mentioning Abby's upcoming benefit on Coffee with KARE (KARE 11 News) Monday morning. So, if you tune in you might see a few pictures of Abby. We are really looking forward to the upcoming benefit this weekend. It should be so much fun and the weather is supposed to be beautiful.
I feel that I am forgetting so many things. Oh, Clare and I were in the ER in Shakopee until 2:00 AM Saturday because she has a urinary tract infection. She had been uncomfortable on Thursday night and didn't sleep well, then on Friday she kept complaining about a stomach ache, but she was still eating just fine and going to the bathroom. But then on Friday night when she had gone to bed she kept waking up and complaining about her stomach. Finally it just dawned on me what was going on. I asked her if it hurt when she went pee pee and she cried and said yes. Right then I just scooped her up and put her in the van and off to the ER we went. Sure enough three hours later they had confirmed that she had a UTI and blood in her urine. We got an antibiotic and she is already feeling much better. That was a late night. She was such a good girl. She didn't even cry when they had to use a catheter to get a sample of her urine. She was proud to have an ID bracelet on her ankle like her big sister Abby. She only cried when her purple popsicle fell off the stick. Good girl.
Well, that is all for now. We hope you all had a great weekend. Please continue to pray for a new heart for Abby. Hopefully it will come soon.
Love, Heather and family
P.S. One more thing…I just want to say that I wish that I had time to talk on the phone, have a cup of coffee, or just email with so many of you that sign the guestbook or leave me a message. You are all such wonderful people. Some of you are my very best friends and some of you I only know as a name, but one thing I do know is how loving and caring you all are. I hope that when this large storm has passed and my family is back in calm water I can take time to catch up with or get to know you all personally. Thank you for all the love and support.
Tuesday, May 29, 2007 8:02 AM CDT Dear Family and Friends,
Abby has been in the hospital 15 weeks today.
Sorry that it has been several days since we last updated Abby's website. The weekend was busy for us, as it surely was for most of you. Mark and I spent a lot of time with Abby at the hospital and driving back and forth. Abby also got to spend quite a bit of time with Clare this weekend, which always boosts her spirits. Truth be told, Abby is just getting plain bored with the hospital. She asks about home a lot more these days and requests that we just take her home. She understands why she needs to be in the hospital, because she is waiting for a new heart, but still it gets old for her, and for all of us. We continue to encourage her to eat as much as possible. Some days she does better than others. She is usually not very hungry in the morning, but then by evening time she is eating more and even asking for food. Eating is a very important job for Abby right now, because the stronger she can be going into her transplant surgery the better recovery she will have.
Ok...I started this journal entry at 8:00 AM this morning and now I am just getting back to it and the time is 2:26 PM. Wow how the hours can fly by. I am home with Clare and Eva today and we have been trying to just do some normal things. I took Clare to her Aunt Pam's hair salon (Salon 500) in Burnsville to have her hair trimmed. Then we ran a few needed errands. Now I just laid both girls down for a nap. Hopefully they will both sleep for a few hours and I can get some things done at home.
Abby's Oma and Opa (my mom and dad) came down to the hospital several times this weekend to spend time with Abby. On Sunday they made Memorial Day baskets (think May Day baskets but with a red, white and blue theme). Abby had a lot of fun just visiting with the nurses and delivering special goodies to them. This type of activity keeps her very occupied and having fun. So, she helped Oma and Opa and Mama make the baskets and filled them with candy and then we delivered them to all the nurses. This was really fun. Oma and Opa also brought her a bean bag toss game. We played it out in the hallway next to her room. This was a fun physical activity.
I can't speak for Mark, but every time my phone rings now and I don't recognize the number my heart just about skips a beat with anticipation. We just never know when the call might come that Abby will be getting a new heart. The unknown is very hard to deal with. Waiting is hard. We try to teach our children patience, but at times like this I feel like a three year old waiting to open my presents on Christmas morning. It is hard to wait, but I try to get myself in the mindset that it might be a long time still before Abby will get a heart. Thinking about having Abby at the hospital for many more months is just plain overwhelming. We are all tired of it. Again, we try to take things a day at a time, but it can be a struggle. I was having a hard weekend. I was tired and just felt like crying. I want Abby home. I want her to feel better. I want her to get on with her life. No more hospitals, no more IVs, no more hurt. I pray that Abby will get her new heart soon and that the surgery and recovery will be smooth.
Enough complaining. We must all try to keep Abby's spirits alive and make her time at the hospital as enjoyable as possible. Our little girl is fighting for life and we will continue to fight with her.
Thank you all for checking on Abby and continuing your prayers.
Love to all,
Heather, Mark, Abby, Clare and Eva
Wednesday, May 23, 2007 1:30 PM CDT Hello everyone,
Today we went and toured the U of M (Fairview Hospital) campus. We saw the PICU (Pediatric Intensive Care Unit) and the IMCU (Intermediate Care Unit). On the day that Abby gets a new heart she will go first to the PICU for surgery preparation. Then she will go into the OR for surgery (which will take between 6-8 hours). After surgery she will go back to the PICU for recovery. She will be in the PICU until she is more stable and will then move to the IMCU for the remaining days of her hospital recovery. The U of M hospital seems very nice. Of course there are some things that we will probably like better than here at Children's and some things that we will not like as much. It will just be an adjustment. Hopefully we will spend a much shorter amount of time at the U of M hospital than we have here. The Radisson hotel is just 2 blocks from the U of M hospital and for the first critical days after surgery we will probably just get a room there so that we can be very close to the hospital, but still be able to get some rest when needed. This will also be good for Eva, since she shouldn't be hanging out in the PICU recovery room. We are praying that Abby's heart comes soon, as we would all like to get back home together.
Abby had another echocardiogram yesterday just to check on how her heart is functioning. It is the same as the last time they checked, so no improvement, but also no decline. We hope that her heart will just continue functioning this well until she can have a transplant.
She continues to eat better and better. She is definitely hungrier in the evenings and eats most of her calories for the day after her afternoon nap. Speaking of eating, her nurse just called me and she woke up from her nap asking for Mom and also Cheetos...I am not sure in which order. Ha Ha.
Anyway, thank for you checking on Abby and our family. Pray for a heart to become available soon.
Also, a HUGE THANK YOU to all the girls from Nivala and Co. Salon for hosting a garage sale benefit for Abby. You all worked so hard to put everything together and the donation you made for Abby is awesome! We appreciate your efforts so very much. Sincere thanks to all of you.
More later...love The Ostlies
Monday, May 21, 2007 10:43 PM CDT Abby had another very good weekend and we all got to enjoy time together. She had a new favorite movie that was played over, and over, and over again. You won’t find it in stores, it was a made especially for Abby by Michelle Gobrecht, her family and students from her kids' school. It includes songs, dancing and warm wishes for our sweet little girl. Thanks to all of you for this very special gift.
Today, Abby was talking quietly when her nurse, Amy, entered the room. When asked what she was talking about, she told Amy, “I was just praying for my new heart”. Good girl. Some moments in life are very surreal. She wants to come home and knows that she has to wait for her new heart before she’ll be able to sleep in her own cozy bed.
Abby has an important advocate. Our financing contact at the UofM planned a conference call this morning with county services. We were warmly greeted by a case worker who started by asking “how is that little sweetheart”. I was instantly aware that this nice person knew more about Abby’s story than appears in our applications. Thank you Fox 9 and all of you getting her story out. Heather and I have shared little details regarding our plans to pay Abby’s medical expenses, but we’ve been hoping for some government assistance and it now looks like we’ll be getting some. Some of you have mentioned MCHA in emails and in Abby’s guestbook as a form of medical coverage we should look into. We have, but we are trying to be smart so that we do not consume all of Abby’s coverage options in the near term. It’s difficult at times to plan out into the future, but our hope is to give Abby medical coverage into adulthood even if this comes at a greater cost to us right now. This could seem foolish or too hopeful, but we believe that God will provide a way. Today’s news was a step in the right direction.
Good night all and God Bless – The Ostlies
Friday, May 18, 2007 12:34 AM CDT Hello All and welcome if you are new to Abby’s site
We met with Paula, the transplant coordinator from the UofM on Wednesday. It’s remarkable to hear, in detail, everything that must take place for a successful transplant. Paula is very nice and exceptionally patient with our questions. Abby had questions too. She wanted to be part of the conversation and so would chime in with “Um, Paula . . . do you have a dog?” or “what color is your house”. We met in Abby’s room and this was a poor choice, not because of her interruptions, but because she’s so smart. It’s impossible to discuss critical issues without her taking it in at some level and at this meeting there was discussion about the donor and donor family. She took this all in and in the morning yesterday, she had lots of questions about death. She asked her nurse, Amy, “when am I going to die, am I going to die today, when are you going to die?” Brutal questions, but Abby wasn’t scared asking, just curious. Amy was sweet in talking with her. By end of day yesterday, Abby confidently told her Grandma, “I’m not gonna die until I’m older.” We’ve learned a lesson.
Abby is one of 11 children listed nationally in her age range and blood type. Where she is on the list is difficult to explain because Abby requires a very specific “tissue type” match and regional patients may have precedence. See the Donate Life banners that now appear on this site. In our meeting Wednesday we became keenly aware of the difficulty of receiving an organ from a matching donor; not just for Abby, but anyone waiting for a transplant. I did not realize that, although I am an organ donor, there is only a 5 percent chance that God will call me in such a way that my organs may be recovered. We do know that Abby is expected to be a tissue match with about 9 percent of the population and about 60 percent of families consent to organ donation. This is a grim topic, but these are the facts. Abby is listed for a heart from a donor that is between 3-8 yrs old and 30-44 lbs. Since her heart has been so enlarged, they believe she is well suited for an older, larger heart if necessary.
Abby has been eating as well as we can expect. She loves sausage patties and rice and gets hungrier later in the day. At night, she’s had a tough time keeping her potassium down. It’s really important for her to have this, but it’s her least favorite. She’s great at taking pills and is usually very compliant, but potassium comes in capsules that are too big for her to swallow, so she takes the contents directly with water. She usually has to take 2-3 capsules at a time. No fun.
The wait is on. We hope that within a few days the pit in our stomachs will dissolve a little and we’ll start to panic less when the phone rings. Meanwhile, we’ll do our best just to enjoy each other.
Thank you for your continued prayers and support.
God Bless – The Ostlies
Wednesday, May 16, 2007 5:15 PM CDT Watch Fox 9 tonight at 9 and 10 PM!
Ellen Galles (Fox 9) called about Heather about 45 minutes ago and to let us know that the station has had great response from the Abby's story last night. Many people are wondering how they can get involved, so Fox 9 will do a follow up story tonight.
Wednesday, May 16, 2007 7:37 AM CDT
Well Abby made her TV debut last night and wow did she do a good job. Thank you again to Ellen Galles and Fox 9 News for doing this story about Abby. What a great job they did.
Find Abby's Story on myfoxtwincities.com
We also have some good news about the transplant. Abby is now listed and she is listed nationally, not just regionally. The antibodies in her blood have come down slightly since they first tested her blood, so now the immunologist from the U of M feels that using what they call a "virtual cross match" they can list her nationally and still screen the organ enough that it will be safe for Abby. I will try to explain this process more later after we meet again with Paula, the nurse transplant coordinator from the U of M today.
I am heading down to see Abby in just a little while, so I will update again this afternoon.
Love to all,
Heather and family
Monday, May 14, 2007 10:08 PM CDT Happy Belated Mother's Day to all the great moms that we know!
Abby had a good weekend and Monday. She is really starting to get her eating skills back. I think that the TPN and lipids really did affect her hunger sensation and maybe also her taste sensation. She is much more interested in eating over the past few days, food seems to be tasting good to her, and slowly she is increasing the amount of food she eats (even without a lot of prompting). Today she ate about half a sausage patty and some rice for breakfast; a small bowl of mac and cheese, chocolate pudding, and carnation instant breakfast drink for lunch; two saltine crackers and 3 bites of banana for a snack; two saltine crackers, pudding and popcorn for dinner. This is such a great improvement. Keep praying that her eating continues to get better each day.
I called Paula, who is the nurse transplant coordinator at the U of M, to see if Abby is now officially listed, but I didn't hear back from her today. I know that Abby was supposed to be listed today, but I don't know if it happened for sure.
Abby is now allowed to be disconnected from her IV medications for 2 hours per day. This is so much fun for her. She loves "being free" as she says. It is great because she can go to PT and swing and play without worrying about getting tangled in her IV lines. She can go outside on the playground and climb the play set and crawl through the tunnel and go down the slide. She can walk up and down the hallway with her sister and tell her parents to stay behind because they are going on an adventure. She never likes to be hooked back up, but she is a good girl about it.
So, now we wait. We hope that the wait is not too long, but in the meantime we will continue to work on improving Abby's nutrition. The surgeon from the U of M said that if Abby gets back into a normal nutrition pattern before the transplant and if everything goes well with the transplant we could be at home in as little as 7 days post transplant. Wouldn't that be great? Tomorrow Abby will have spent 13 weeks in the hospital. It is hard to believe that she hasn't seen her room, or played in her house, or eaten at our table, or took a ride in our van for 13 weeks. Yuck.
Well, watch for Abby on TV tomorrow night. Her story is scheduled to air on the 10:00 PM news on Fox 9, Tuesday, May 15th. If anything changes we will update the website. Ellen Gallas is the reporter that worked on the story and she said that they will probably plug the story all day on Fox 9, so watch when you can.
Also, the Rosemount Town Pages had a nice article about Abby. You can read it by going to the following link:
http://www.rosemounttownpages.com/articles/index.cfm?id=18070§ion=homepage
Love to you all,
Heather, Mark, Abby, Clare and Eva
Friday, May 11, 2007 5:08 PM CDT It is nurse appreciation week. We owe Abby’s nurses and great debt of gratitude. They constantly go out of their way to keep Abby’s spirits up by giving her a fun and loving environment. They are an energy source and great at making us comfortable at the hospital and supporting us without fail. Abby was able to help give the nurses a blessing by the pouring the holy water and distributing a token of thanks from the hospital. She was very excited.
I should also mention that yesterday when I arrived she “buzzed” me in. She was sitting behind the desk drawing pictures and letting people in by pushing a special button underneath the desk. I will put a picture of her at the scene on the photo page if your interested to see her in action.
Have a great weekend and God bless,
The Ostlies
Evening - May 9, 2007 Happy Birthday Auntie Jeanne!
We met with the transplant surgeon from the U of M hospital today. Her name is Dr. Cynthia Herrington. She was very nice and had some good information. First, she feels that Abby is great candidate for a transplant and is happy to see that Abby is doing so well medically right now. However, she is extremely concerned about Abby’s nutritional status at this point. She does not want Abby to receive IV TPN and lipids (which are Abby’s main source of calories right now) anymore, because these medications can have a long term affect on the liver and this is a concern for transplant. So, Abby really needs to eat normally again. They will stop the TPN and lipids tomorrow and give Abby 48 hours or so to see if her appetite comes back. If she does not show significant improvement after 48 hours they will insert a feeding tube in her side that will directly feed her gut. This is obviously not what we want so we will be working very hard over the next two days to get Abby eating. Please pray for Abby to start eating better and enjoying food again.
The other good news is that Abby will be put on the transplant list on Monday. She will be listed as a 1A, which is the highest priority. Abby will be the only transplant candidate on the 1A list. So, she is the girl. It was interesting to hear Dr. Herrington say that she will not be taking any vacations now that Abby will be listed, because she can’t be too far away from the hospital. We asked how long Dr. Herrington thinks it might be before Abby will get a heart and she said that it could be very soon or we could wait up to about 6 months. Another good thing is that they said Abby can continue to wait here at Children’s as long as her health status remains good. If she would decline and need to go back into Intensive Care then they would transfer her to the U of M. Otherwise, she will just wait here and then when a matching heart becomes available she will be transferred to the U of M hospital.
I am sure that I have forgotten to include many things that Dr. Herrington told us today, but the main points are that Abby will be listed on Monday and that she needs to start eating. We want to ask you all to pray for a heart for Abby, but somehow this prayer request seems wrong, because we know that for Abby to receive a heart someone else will die. So, please pray that in the unfortunate case that a child is called to be with God that their heart will be a match for Abby so that she can live.
Other things…Fox 9 News is coming back again tomorrow to spend some more time with Abby and get more footage of her just playing and being Abby. The story on Abby is scheduled to air next Tuesday night, April 15 on the 10:00 PM news. We hope that you are able to tune in and watch Abby’s TV debut. I have a feeling that Abby might be a TV reporter someday in the future; this type of career seems to fit her personality.
Also, I have to tell you about what happened the other night. Mark and I were having some Chinese food for dinner and Abby wanted to have a fortune cookie. She picked a cookie and opened it and the fortune said, “You are strong and brave, use these qualities to pull through.” Yes indeed!
Love to all, The Ostlies
Morning - May 9, 2007
There is really very little to report regarding Abby’s health. Since our last update things have been nice and boring on this front. We’ll meet the UofM surgeon, Dr. Harrington, today and hope to get her listed for a new heart as soon as possible.
Abby is happy and accepting of this situation most of the time, but she wants to go home. We’ve talked to her about the fact that she’ll need to go to another hospital for a while before she’ll be able to come home and that she’ll first get a new heart. She thinks that, as long as the heart is pink and turquoise, this is a good plan.
Some local media have come the past couple of days to interview Abby. She was much quieter than we imagined she would be. Once the Rosemount newspaper interviewer tried to ask Heather questions, then Abby wanted to be interviewed more. Fox 9 News was also in last evening and may be coming back today. We’re not sure of the time, but were told that a spot may air next Tuesday. We’ll let you know as we find out more.
Thank you for checking in on us and God bless,
The Ostlies
Thursday, May 3, 2007 2:51 PM CDT Hello everyone,
First, let me update you on the results of Abby's heart cath yesterday. Her heart is still functioning poorly, but all of the pressures in her lungs and the size of her vessels look excellent. This is the news that we wanted to hear. This means that the transplant should go smoothly from a pressure and vessel standpoint. Also, Abby did not require any blood products during the heart cath so this is great as her blood can be re-screened for antibodies and the test will not be skewed. They are planning to test her blood for antibodies again next week. Then they also need to get two more stool samples, finish her developmental assessment, and she needs to be seen by the transplant surgeon and then she can be listed. The transplant surgeon is scheduled to come and see Abby next Wednesday. And let me tell you, Abby is probably the smartest 3 year old that I know (and yes this is coming from her mom). But she did so awesome on the developmental testing so far. For example, given four choices, she was able to point to the horse that was prancing, a fist that was clenched, a fancy house, and two glasses that had equivalent amounts of water. Also when asked "what do you put on a letter before you mail it?" she answered "a message". SMART!!! I am so proud of what a good girl she is. She amazes me everyday. She is happy and loving despite of everything she is going through.
So, here is the sad news. Abby will not be going on a Make-A-Wish trip. The legal department and other administrative executives here at the hospital will not allow a nurse to go on the trip with us, because of legal concerns and because they have never allowed any nurse to do this before. Also, the hospital will not allow us to get medications from here to go on the trip. Basically, the hospital administration is just creating too many hurdles for the trip to be possible now. This is obviously very disappointing for all of us, because the reality is that Abby may not have a chance to go on a trip like this in the future. However, I guess that we have to look on the bright side of things and just pray that Abby will be listed soon and get a new heart. Then after she makes a full recovery she will be able to have her wish and go to Disney. Thank you to Gillian and Katie from Make-A-Wish for all your hard work during the past weeks trying to coordinate this special trip for our family. I hope that we will be working together again in the not to distant future.
Abby is taking a nap right now and I am planning to give her a bath and get her bandages off from the cath yesterday when she wakes up. I bought her a new pink hairdryer to have here at the hospital and she is excited to give it a try. Then we will work on getting her to eat something later this afternoon. She has not been too hungry since her cath yesterday.
Thank you to all of my former JFK dancers from Waconia for all your support for Abby and our family. You are all amazing girls and I miss teaching you dance so much. I truly wish that life was normal for my whole family right now and that I could be there kicking with you.
To Shalon, Judi, Katie, Stef, and Chris - you women are the best. Thank you for all that you are doing for our family. Thank you for being such wonderful friends.
To Beth and Bruce, Sara and Mark, and Kelly and Bob - You are an amazing family and we are lucky to have known you all these years. Thanks for helping our family in this great time of need.
Thank you everyone for continuing this journey with Abby and our family. Your love and support are needed and very much appreciated.
Love to all,
Heather and the gang
Wednesday, May 2, 2007 4:43 PM CDT The fundraising information site needs to be updated, but click here to read about an exciting event just scheduled for June 9.
Abby had her heart cath this afternoon and is now back in her room. We don’t have the results yet, but the nurses said that she did well. She woke up a few times during the procedure, but settled back down nicely each time. Her tolerance is very high for medications that are intended for light sedation. Heather ended up singing her to sleep.
We have good (second hand) news from the UofM that Abby’s test results to date look very good. She had another echocardiogram yesterday and the results have not improved, so her extra energy must be generated by sheer will.
We’ve had a busy few days here as hospital staff are trying to figure out how the trip to Disney will work. There are some important hurdles that they are working hard to help us overcome regarding medication and nursing care. Just the fact that she will be discharged and then readmitted could put her eligibility for some medical financing options at risk, so we’re trying to be as smart as possible while pushing hard to make this amazing opportunity happen. Hopefully most of this will be resolved tomorrow.
Good night for now and God bless,
The Ostlies
Monday, April 30, 2007 11:07 AM CDT Make a wish
Abby was asked last week if she could meet anyone, who would it be. She responded "Snow White". Yesterday this wish came true. Snow White and her Prince came to visit (Thank you Katia and Paul)! It was wonderful. Abby and Clare got very quiet as they were amazed to see this real princess come into Abby's room. They talked and worked on some art projects and took a walk together to greet others on the floor. This was very exciting and fun for all of us. I think Snow White and Prince Charming enjoyed it as well.
Abby continues to feel very well. On Saturday there was no stopping her as she climbed up some playground equipment and I followed behind carrying her IV pole, so as not to slow her down. She had a “swallow” test this morning and will have a heart cath on Wednesday. She is acting like she doesn’t belong in the hospital and we love it.
We got a call from Make-a-Wish with more exciting news this morning. Abby’s wish to go to Disney World is being granted. We all will leave on May 9. This truly feels like a dream. There is no way that we could possibly coordinate all of the care and accommodations that Abby will require for a trip like this, not to mention the expense. A nurse from Children’s Hospital will travel with us to Give Kids the World Village. This is “a 70-acre, non-profit resort in Central Florida that creates magical memories for children with life- threatening illnesses and their families”. Incredible. We’re all beaming.
God Bless – The Ostlies
Friday, April 27, 2007 7:07 AM CDT Good morning everyone and happy Friday! It is supposed to be beautiful this weekend so we hope that you all have plans to be outside enjoying the weather. I think that we might even start up the grill this weekend. I have been craving some good grilled burgers. We are also planning to get Abby outside this weekend, either at the little outdoor play area or just for a walk around the Children's campus. She loves to be outside and the sunshine is good for her spirits.
Abby has had a great week. She has really been full of energy and upbeat. She did lots of walking and playing in the gyms this week. She puts on her "track jacket" and heads down to the gym for her "workout" each morning. These are the words that she uses. She also says that she just "needs to get some exercise" and that "walking is MUCH better than riding".
Abby will continue to have more testing next week in preparation for putting her on the heart transplant list. On Monday she will have a "swallow" test where she has to drink some fluid while the docs watch her swallow on x-ray. She may also have another test on Monday that will evaluate her development. We have heard that this developmental evaluation can take 2-4 hours so it is a long exam. They have said that Abby will probably just think that she is playing because they just use games and activities to do most of the evaluation. The most serious test that she will have next week is a heart cath on Wednesday morning. This is where they make a small incision in her groin and then thread a camera into her heart that can take pictures and measure the size of vessels and flow of blood. Normally a heart cath is a low risk procedure, however because of the delicate state that Abby's heart is currently in this procedure carries more risk than normal. Dr. Singh has requested that Mark and I are both at the hospital during the heart cath, just incase something were to go wrong. So, please pray that the heart cath will be a smooth and uneventful procedure.
Mark created a link last night to a separate page that contains fundraising information for Abby. As of right now there are going to be two separate events. The event on Saturday, June 23rd is being organized by "Abby's Angels" and all the details and contact information are on the new web page. This event is going to include a dinner followed by a band and dancing. This evening is probably more adult oriented. There is another event being planned by "The Friends of Abby Leigh" that will be more family oriented. This event does not have a definite date yet. We hope that you will consider attending one or both events to show your support for Abby. Mark and I send sincere thanks to all the organizers or these events. Thank you all so much.
Well, I think that is all for now. Enjoy the lovely weather. Thank you for checking on Abby and our family.
Love to all,
Heather and family
Wednesday, April 25, 2007 2:49 PM CDT This week has been going very well. Abby is feeling good. She impresses us every day with her physical feats. Yesterday she walked all the way to the PICU and around the unit to find Chris (a favorite nurse) to give him an "Abby Leigh" bracelet. She asks often when she can go home. It’s difficult for us to understand at times why she must stay here, but it’s impossible for her to understand. We want to be as honest with her as possible without overwhelming or confusing her. From her perspective, she’s feeling well and wants to go home.
Our whole family has been able to be at the hospital together for a few days running. Clare has created a song that she sings all the way to the hospital. It’s just two words “Abby better”. It turns into a chant at times and the melody changes often, but she sings it with heart.
Medical testing for the transplant has gone well so far. The past few days have also been consumed with trying to sort out another important hurdle as well. Without sharing a great amount of details, Abby hit her lifetime maximum for insurance benefits last month. Before Abby can be listed for a transplant, we must be able to prove our ability to provide for the cost of the procedure, hospital stay and ongoing medications. None of these are trivial costs, but we believe there will be a way to work this out. God will provide a way. Some of the available alternatives could be great, but we may not resolve the question of Abby’s eligibility for these programs for months, meanwhile we ask for your prayers on this topic as well.
God bless – The Ostlies
Friday, April 20, 2007 Evening We've had our meeting and we have a plan. It may change along the way, but for now the UofM will start a battery of tests next week to further assess Abby. The hope is to get her listed for a transplant. The high level of antibodies in her blood may make it difficult/time consuming to find a match, but everyone agrees that she simply must be given the chance. Too many details to share tonight, but this means hope for this beautiful little girl in front of me. Another good day today, another testiment to God's goodness. Thank you all again for your love, prayers and support.
Friday, April 20, 2007 12:08 AM CDT
Just a super quick update...
Abby is having a great morning. She slept all night long and is feeling awesome today. We went to the PT gym with her for an hour this morning. Her is a list of all the things that she did...
Went up the stairs four times.
Shot 10 baskets.
Jumped on the trampoline.
Road the trike up and down the hallway.
Walked on the balance beam.
Walked on the tread mill, both forward and backward and up a hill.
Needless to say she is now tired and sleeping in her bed.
She is the most amazing little girl. She is working really hard to recover. Last night for dinner she ate about 12 french fries, 4 animal cookies, a bite of hot dog, a grape, and some skittles.
Today she had some animal cookies, milk, and a bite of rice.
We meet with the U of M group at 3:30 today. We don't have any idea what to expect or even hope to hear from them. We are just going into the meeting with an open mind and heart. Whatever they tell us we pray that God will guide us in the right direction for Abby.
I have to get back to Abby's room, Kathy our friend from church is holding Eva and she was just starting to wake up when I ran down to update the site. We will update more later.
Love, Heather
Friday, April 20, 2007 12:00 AM CDT
GRATITUDE
Yes we have an important meeting with the UofM today and yes we are stressed about it, but let me divert your attention for a moment to another amazing little girl.
Mykensie turned 7 on March 16. She sent us pictures this week from her party. It was filled with beautiful smiling faces and cake. Presents were conspicuously missing. Mykensie has been following Abby’s story and, as her birthday approached, she asked her friends to refrain from buying gifts for her and instead she wanted to gather the money that would have been spent and send it to Abby. Mykensie is 7 years old and has never met Abby. She was simply moved to do this. The maturity and thoughtfulness behind her gesture is unbelievably humbling for us. It must have been for others too.
Mykensie started a snowball effect that prompted others including her parent’s friends and coworkers to generously contribute to this gift for Abby. Thank you Mykensie and to all of you for this gift and especially for the inspiring story.
Over the past many weeks, we have been blessed by the generosity and thoughtful actions of many people that we have not acknowledged publicly. We do, of course, want to express deep gratitude and thanks to all of you.
Abby continues to feel very well. She’s interested in eating more and more (mostly french fries). Yesterday Clare and Abby had a wonderful play date. We’re happy to see that Abby’s actions and energy don’t seem to match her current diagnosis. We continue to ask for your prayerful support.
God Bless,
Love – The Ostlies
Friday, April 20, 2007 12:00 AM CDT Gratitude
Yes we have an important meeting with the UofM today and yes we are stressed about it, but let me divert your attention for a moment to another amazing little girl.
Mykensie turned 7 on March 16. She sent us pictures this week from her party. It was filled with beautiful smiling faces and cake. Presents were conspicuously missing. Mykensie has been following Abby’s story and, as her birthday approached, she asked her friends to refrain from buying gifts for her and instead she wanted to gather the money that would have been spent and send it to Abby. Mykensie is 7 years old and has never met Abby. She was simply moved to do this. The maturity and thoughtfulness behind her gesture is unbelievably humbling for us. It must have been for others too.
Mykensie started a snowball effect that prompted others including her parent’s friends and coworkers to generously contribute to this gift for Abby. Thank you Mykensie and to all of you for this gift and especially for the inspiring story.
Over the past many weeks, we have been blessed by the generosity and thoughtful actions of many people that we have not acknowledged publicly. We do, of course, want to express deep gratitude and thanks to all of you.
Abby continues to feel very well. She’s interested in eating more and more (mostly french fries). Yesterday Clare and Abby had a wonderful play date. We’re happy to see that Abby’s actions and energy don’t seem to match her current diagnosis. We continue to ask for your prayerful support.
God Bless,
Love – The Ostlies
Thursday, April 19, 2007 7:26 AM CDT There once was a tiny and very hungry caterpillar (Abby)...
On Tuesday she ate two french fries and once bite of chicken nugget and drank a lot of milk.
On Wednesday she ate one whole strawberry, one french fry, three bites of chicken nugget, eight Skittles and drank a lot of milk.
On Thursday...we will see what the little caterpillar wants to eat today.
This is good progress. Abby is becoming more interested in eating and she actually seems to enjoy the tastes of some foods. We will pray that this continues and that her nutrition gets better each day.
Abby's spirits have really been great the past two days. Her cousin Benjamin and Uncle Mike and Aunt Mindy came to visit on Tuesday and Abby and Ben had such a great time together. They were just goofy and giggly the whole time. I think that he was her inspiration to start eating a little bit. Then yesterday her heart buddy Riese came to visit with her mom and grandma. Abby was so glad to have another friend visit. Mark will post a picture of Abby and Riese together, because they are so adorable. Abby really loves to have kids her age around. I am sure that it makes things feel more normal.
Abby has been using a physical therapy gym for the past few days. In the gym she is able to climb stairs and really work on her walking. She was playing basketball yesterday and made 6 baskets. The nurses said that she would have to play on the hospital all star team. Getting her up and moving like this really helps her feel better also. It is good to see her getting more and more of her leg strength back.
Abby is still on a fluid restriction (meaning that she can only have 200 mls of water in every 8 hour shift). She is also still on both of the IV heart medications, milrinone and dopamine. We meet with the U of M transplant group tomorrow at 3:30 PM and hopefully this meeting will help us determine a plan for Abby's future.
I don't have much more to update right now. Keep praying for Abby to eat and feel better each day.
Love to all,
Heather and the gang
Monday, April 16, 2007 9:52 PM CDT Hello everyone,
Sorry for not updating this weekend. Things were just busy and we thankfully did not have much to report, good or bad. Abby had an uneventful weekend. She rested fairly well this weekend and seemed happy and even playful at times. She even ate 4 sections of an orange for her Aunt Angie...this was big stuff. She has not eaten anything since, but at least it was something. She is drinking lots of milk these days which has good calories and some nutrition. We need to get her eating more, but she really is not interested yet...we are praying that this changes soon.
Today Abby was irritable. She is obviously sick of being at the hospital and she wants to go home. She is tired of everyone bugging her all the time, even though the nurses are so kind and gentle with her. Mark and I try to discuss with her why she is at the hospital, because it must be confusing. Mark had a talk with her on Sunday and he asked her if she knows why she is at the hospital. She shrugged her shoulders as if to say "I don't know". But then he asked her "is it because of your eyes?" and she said no. "Is it because of your ears" and she said no. "Is it because of your stomach?" and she said no. Is it because of your heart?" and she nodded yes. So, she does somewhat understand why she is at the hospital. Mark told her that God gave her a very special heart and that her heart needs help right now to work its best, and that is why she is at the hospital. What a hard thing for a 3 year old to understand, yet amazingly she does understand.
Abby did get to spend some time outside today. At first she was not to thrilled to be outside, but then she perked up at she even went down the slide twice. Wow! She spent the afternoon with her Oma and Great Oma (my mom and grandma). This was good. Then our friend from church, Penny, spent the evening with her. We are so incredibly lucky to have such wonderful family and friends. We would sink without all of you.
We will meet with the U of M folks again sometime this week, but we don't know when yet. We will of course update when this happens.
We hope that you are enjoying this wonderful weather. It is awesome. Clare is having so much fun being outside. She never wants to come in, and she cries when we make her come inside. This is how all toddlers should act. I took both Clare and Eva to the pediatrician today for their two year and two month well baby visits. Both of them had to get shots. Clare didn't even cry...what a big girl. Eva wailed and has been running a mild temp tonight. Hopefully the Tylenol will help and she will still sleep well tonight. Both girls are doing great and are off the grow chart for height.
Thanks for continuing to check on our family. It has been a long journey, but stick with us because we need you by our side.
Love to all,
Heather
Thursday, April 12, 2007 3:24 PM CDT We’ve gotten crappy news on top of crappy news since yesterday, but it’s impossible to know what it all means.
Abby’s antibody screen came back and the results were bad. Since she’s received so many blood products since birth, her blood is extremely likely to cause rejection of a transplanted heart and finding a matching heart is also very difficult. We’ll meet with the UofM sometime within the next week to understand more fully what this means, and if they’ll consider listing her or not, but the possibility seems remote today.
Abby has been very happy the past couple days, but tired. It pleases her to have something in common with Ariel (the little mermaid who lost her voice for a time) now that she has her voice back. She had an echocardiogram yesterday and Dr. Singh observed to ensure that he saw everything that he wanted to. The results show that she’s in severe heart failure, but you’d never know by looking at her, talking to her or playing together. It is impossible for Heather and I to reconcile the medical information with how she looks and is acting.
I simply don’t feel like sharing details of the many discussions that have swirled around the hospital today, but know that we continue to have tremendous gratitude for you and all of your prayers.
God Bless,
Mark
Wednesday, April 11, 2007 2:13 PM CDT Hi everyone,
I don't have a big update today. Abby had a good night last night (she actually slept peacefully for most of the night). Grandma Ostlie has been spending the day with Abby and she took Abby in the wagon for about 2 hours this morning. Then when I called they were just about to MAKE A SNOWMAN. Yes, Grandma is super fun and she went outside and collected a big bucket of snow so that Abby could make her own mini snowman in her room at the hospital. How awesome! However, what is up with this snowy weather in the middle of April...yuck! We should be taking Abby outside and enjoying sunny 70s, I guess it will come eventually.
Abby is going to move rooms today. She will just move down the hall on 3rd floor. The reason for the move is because they will put her in a room that has its own tub and shower. That way she can take a bath whenever she wants in the convenience of her own room. She will love and appreciate the tub.
Dr. Singh ordered another echocardiogram. As of this update they have not yet done the echo, but it should be sometime this afternoon. I have not talked to Dr. Singh so I am not sure if he wants the echo for a specific reason or just to see how things are looking with her heart. I am sure that he will stop by this evening and we will chat then.
No results on Abby's blood work yet from the U of M.
I will be heading down to the hospital soon to spend the rest of the afternoon and evening with Abby. It is so great to hear her little voice again. She actually forgets sometimes that she can talk, and we have to remind her that she can just ask for what she wants. I guess we would all forget a little if we hadn't talked for 6 and a half weeks.
Oh, also Abby drank and entire carton of milk in the night. This is good progress on getting her some calories. It is a start.
Thank you all for your prayers and love.
More later...
Love, Heather and the family
Tuesday, April 10, 2007 1:02 PM CDT Happy 2nd Birthday Clare Elaine Ostlie!!!
I can't believe that Clare is already two years old. Wow! Time just seems to slip away from us and our kids grow up so fast. Clare is having a good birthday and we are planning to head down to the hospital after she takes a nap and celebrate her birthday with big sister Abby.
I think the best part of the birthday celebration will be that Abby can SING Happy Birthday to Clare!!! Yes, you read correctly, Abby just got her trach out about 10 minutes ago. She just called me on the phone to SAY HELLO! It is totally awesome and I am still teary writing this journal entry. I can't describe the joy in my heart knowing that Abby's airway is healed and that she can talk again now. Mark is down at the hospital with her now along with Grandpa Ostlie. They told us this morning that the doctors gave the go ahead to remove the trach. Abby was actually on a wagon ride when Dr. Lander came up to remove the trach. He asked Mark if he wanted to take out the trach and of course Mark said yes. Then Dr. Lander looked at him kind of funny and Mark said oh you mean right now while she is in the wagon and Dr. Lander said well why not? So, they removed the trach right then and there while she was on her wagon ride. So far she is doing great on her saturation levels. She is back in her room now and is going to take a nap before Clare's party. Her voice is pretty soft right now, because she still has the stoma (hole) in her throat, but that will dry out and start to close on its own in a few days. JOY!
Well, thank you all so much for your prayers and continuous support. We still have a long road ahead, but this feels like a victory. Dr. Singh was planning to talk to the folks from the U today and see if they have the blood work processed and if they can get her on the transplant list. We will speak with Dr. Singh later today and find out if he has any results.
Love to you all, Heather
Monday, April 9, 2007 1:15 PM CDT Do you want the good news, or the good news?
Abby's airway looks great! As is sits right now, she will not require reconstructive surgery in the future and will be able to get her trach out shortly. The intensivist wants to keep the trach in right now to ensure good oxygen support, but I know Heather and she'll have him talked out of this quickly.
Also, Abby's case of "black hairy tongue" (I'm not kidding, this is what it's called) has been was taken care of in the OR. Black hairy tongue is a common condition caused by a lack of air movement in you mouth.
She's had a happier day from the start. We are thankful to all of you for your prayers this weekend and always. God bless you.
The Ostlies
Saturday, April 7, 2007 9:49 AM CDT Hi everyone,
Abby had a better day yesterday. She was more spirited and rested more peacefully. She did a lot of walking yesterday with just a little assistance. She seems to be getting some of her leg strength back. This is great to see. We are very hopefully about how the bronchial scope will go on Monday. We sure hope that she is able to get the trach out; this would make her so much happier and us also.
Today Mark, Clare, Eva and I are headed over to my brother's house in Somerset, WI for a mega birthday party for everyone in my family that had a birthday in Feb, March and April this year. Mark's parents are at the hospital with Abby this morning and my best friend Stefanie will be there with her this afternoon until we get back from WI. It should be a fun day, but it always seems strange to do things without Abby...there is just a void when her smiling face is not there.
If we don't update again before tomorrow we hope that you all have a most wonderful Easter day. We remember that God is good and we pray each day that Abby gets stronger and feels better.
Happy Easter,
Love, Heather and family
P.S. I put a new picture on the site of our family from my birthday.
Thursday, April 5, 2007 7:36 AM CDT Good morning everyone,
Abby had a more restful day yesterday than the previous three days. She was able to sleep for several hours at a time and seemed peaceful and comfortable. This was a great improvement. I also talked to Dr. Singh yesterday and he wrote orders for Abby to have 1-1 nursing care during the nights always and also as possible during the days. This is a great relief to Mark and I because Mark can now come home at night and know that Abby is being attended to and cared for as necessary. (For those of you who don't know, 3rd floor usually has a nurse to patient ratio of 1 to 2, so there is less care per patient.)
The most important thing that we learned yesterday is that Abby's bronchial scope (to assess her airway) is scheduled for Monday morning at 11:30 AM. We know that you are all praying for Abby on a daily basis, but please on this Easter weekend pray especially hard that Abby's airway is healed and that it will look good on Monday morning. If her airway is healed they will be able to remove the trach and she will be able to breath normally and TALK! I know that she is completely frustrated that she can't talk right now, and it would make a world of difference for her spirits if she could just have conversations with us. It would also raise our spirits to hear her sweet little voice again. This hospital stay is getting very long and wearing on all of us. It is evident in Abby's eyes and she has also started telling us more often that she just wants to go home. Getting the trach out would help us all, so please pray extra hard for healing for Abby's airway and an Easter miracle that she will get the trach out on Monday.
We still don't have any results yet from the U of M as to Abby's blood work (somehow the first time they took blood someone lost the sample, so they had to do it again). Dr. Singh told me on Monday that given her current condition (must improved from two weeks ago) that he would definitely give her a chance for a transplant. This is much different advice than what he was telling us two Fridays ago, but obviously he is just going by how she is feeling and how her heart and other organs are functioning. So, we will wait for the blood results and then talk to the doctors at the U again. It is difficult to think that we may go right from Children's to the U of M hospital, but that very well might happen.
Well, my mom (Abby's Oma) is going down to the hospital to be with her this morning and Mark will be there this afternoon. I am driving out the farm (Mark's parent's house) this morning to pick up Clare and bring her home. She spent the last two nights at the farm. Scheduling our family is tricky right now, but we are trying to keep everyone happy.
Please pray for healing for Abby's airway.
Love to you all, Heather
Wednesday, April 4, 2007 2:25 PM CDT Good afternoon. Abby's currently taking a bath, which is one of her favorite activities. She's had a tough couple of days. There is no real equivalent of the IV heart medication that she’s on, but on Monday they was switched to oral medication to challenge her. Yesterday she was put back on the IV medication since her blood pressure, etc., was not holding in a reasonable range.
She has moments of playfulness, but generally is pretty restless and irritable. The last two nights she hasn’t slept very well at all; resting for only a few minutes at a time. Abby’s water intake is restricted to only 200ml (less than 7 ounces) per 8 hour period, so she’s very thirsty. This is a battle. She kept calling me over to her last night so she could let me know how angry she was. I hit a wall (figuratively) at about 3:30 AM after not getting any sleep and went into an empty room to take a nap in a dark, quiet place before coming to work today. The nurse was very nice and sat with her most of this time.
Hopefully she’ll get back into a routine since she is now back on the IV medication. Next week, they plan to assess her airway to determine if she could have the trach removed. This could be a big emotional boost for her since she’d be able to talk again. We’ll hope for this.
God Bless – Mark
Saturday, March 31, 2007 4:27 PM CDT It’s been a good few days since our last update. Abby has been high-spirited and feeling well enough to move back up to the intermediate care unit on Friday. This morning she woke up wanting to listen to the “Sound of Music” soundtrack on her new IPOD and IFish. These were gifts from our friends at St. Gerard’s. Thank you all, she loves this and enjoys being in control of which songs to play over, and over, and over again.
I told her I was going to update the website where lots of people check on her to see how she’s feeling and asked if there was anything she wanted to say. “I Love You” she answered nodding her head, smiling and fluttering her eyelashes back at me. Thank you again for checking on her.
Yesterday we received the first test result related to transplant candidacy. It was good. She does not have protein-losing enteropathy (whatever that may be). Hopefully we’ll have more results next week, but we know that there isn’t any hurry. Dr. Singh has emphasized that we’re just working to get her stronger and nutrition is key. She’s not really eating yet, but she is starting to drink high-protein shakes again.
check out the new photos from last night
Enjoy your weekend and God bless,
Mark
Wednesday, March 28, 2007 0:01 AM CDT [See edits as of 3:40 PM]
Update as of 1:30 PM
We got some [good] news today. They did another echocardiogram on Abby's heart. Last Friday when they did the echo Abby's ejection fraction (the amount of blood that is being pushed by the heart) was only 21 percent. This is very low. Today when they did the echo her EF was [better]. Her heart is working much better. No one is sure exactly what changed (other than getting the fluid weight off), but it is a great improvement. I know that this was Abby's birthday present to me. The best gift any mother could receive. Like Mark said earlier, we will continue to do everything we can, along with the doctors and nurses, to help Abby get stronger. The prayers are working!!! Thank God!
Wednesday morning:
Happy Birthday Heather!
My lovely, bright and sweet (yet assertive) wife is 30 years old today. I adore her and am incredibly thankful for the symphony that she’s brought to my life. Abby has been practicing writing MOM and 30, so she can provide special artwork for the occasion.
Abby had another good day yesterday. Of course, we don’t have any test results yet, but everything went as planned. Check out the new picture of her during the EEG. We took another wagon ride and drew some pictures. Abby was restless and itchy after the sedation from her MRI wore off, but she's resting now and all in all it was another very good day.
Our conversation with the UofM transplant folks was lengthy, but I’ll try to summarize: Due to recent events, they do not see Abby as a good transplant candidate currently. If Abby were to survive the surgery, she may never actually recover due to any of the many likely complications. If she were to get stronger and organs such as her kidneys and liver had time to fully recover from the latest stress, she may become a good candidate in the future. They seemed genuine and caring without sugar coating any facts.
Where does this leave us? We’ll have the UofM staff perform a more detailed assessment, as they offered to do, and we’ll continue to pray for good days, strength and patience. Everyone was surprised by Abby’s spirit-filled Monday and positive Tuesday and no one here has a complete explanation, but Heather and I know there was an enormous outpouring of prayer on Sunday for her.
Thank you all. You’ve volunteered yourselves onto this rollercoaster with us and we thank God for you.
The Ostlie’s
P.S. - Happy Birthday Penny Quinn!
Monday, March 26, 2007 10:16 PM CDT Tuesday morning:
Schedule for today
9:00 AM EEG
1:00 PM meet with U of M
5:30 PM MRI
We are not yet sure what time the echo will take place. We will try to update as we get the results of the tests.
Monday late evening:
Good evening everyone.
What a difference a day can make!
Abby was like a completely different little girl today. As Mark said, she started the day with a smile and asking for a hug and this great behavior and attitude continued pretty much all day long. Abby's fluid weight was down today, so that probably helped her to feel better. She was just in great spirit and had the sparkle back in her eyes.
She took a bath and got her hair shampooed today. She really enjoyed getting fresh and clean. After her bath and spa treatment she took a nap, first with mama lying next to her and then with papa lying next to her. This was comfort for all of us. And the highlight of the day was that Dr. Singh gave us permission to take her outside! We put her in the wagon and went outside with IV pole and suction equipment in tow. She loved it. We were able to sit at a picnic table and play make believe cards with grandpa. The sunshine really made her feel good, and it made all of us so happy to see her feeling good.
Tomorrow (Tuesday) is going to be a very busy day. We talked with the neurologist today and he scheduled an MRI and EEG for tomorrow. We don't yet know the definite times, but both tests will happen sometime tomorrow. Dr. Singh ordered another echocardiogram, because he wants to take another look at her heart. He was also very surprised to see her looking and feeling so good today, so he wants to look at her heart again to see if there is any change or improvement. Also, Mark and I will meet with the doctor and nurse from the U of M heart transplant team tomorrow to learn more about this process and Abby's chances of being a candidate. All of this will make for a busy day for both Abby and us.
I have posted some new pictures from today.
Thank God for a great day with Abby and that she felt good today.
Love, Heather
Monday, March 26, 2007 8:32 AM CDT We are blessed with a relatively happy girl this morning. After a restless night (shaky and agitated), she woke up with a smile and wanted to hug. She's been drawing smiley faces and writing her name.
I’m not trying to paint this situation to be different than it is, but we must enjoy the “ups” of this rollercoaster. No substantial information from the Docs this morning. We’ll update you all as we learn more.
God Bless - Mark
Monday, March 26, 2007 8:24 AM CDT Good morning friends,
Abby had a third seizure in the late afternoon yesterday. This one was more dramatic than the first two. She was grimacing her face muscles and her mouth was pulled off to the left side of her face. She was shaky and clenched her fists together. She was trying to fight the seizure as she kept trying to sit up. Her eyes looked scared. The nurse gave her another large does of adavant to stop the seizure. The whole thing probably lasted 5-10 minutes, but it seemed like forever.
Abby will be seen by a neurologist today. Most likely she will have an MRI and an EEG (this is where they put electrodes on her head to watch the brain waves and see if anything is unusual). These tests may help determine what is causing the seizures. At this point the doctors have several theories about why they are happening, but have not pinpointed the cause.
Sometime this week Mark and I will meet with a heart transplant coordinator from the U of M hospital. This meeting will be for us to learn more information about transplants and help us to gather some facts. This transplant coordinator will also help us understand if Abby is a candidate for a heart transplant. Later in the week we have also requested to have a "care conference" with our primary doctors at Children's. This will likely include her cardiologist, surgeon, neurologist, and intensivist. This meeting will help us understand our options for Abby's continued care at Children's.
Mark and I had a chance to talk to each other yesterday about the whole situation. It was good to hear how the other is feeling. We are doing our best to stay strong for Abby and for each other.
We will update later today as Abby has tests, we meet with doctors, and have new information to report.
Thank you all so much for your prayers and notes of support on the website. We appreciate it very much.
Love, Heather
Sunday, March 25, 2007 8:41 AM CDT Hello everyone,
I know that not everyone checks this site on weekends, so if you are just checking for the first time this weekend, please read the journal entry from Saturday to catch up on what has happened to Abby over the past 24 hours.
Abby had another seizure around 7:30 am this morning. The nurses gave her another large does of adavant (a narcotic that helps to stop seizure activity) and that helped to stop the seizure. Abby was sleeping when Mark called me. The nurses said that a neurologist will probably come to see Abby today and talk with Mark and me. At this point no one is sure why the seizures are occurring, but it is my feeling that they must have something to do with her poor heart function and how sick she is. We will see what the neurologist has to say. I hope that they don't want to run a whole bunch of tests on Abby, but we will see.
Abby mostly slept last night. She would wake up every few hours for about 15 or 20 minutes. When she was awake she was very agitated, which is common when you are post dictal (after seizure). She wanted lots of drinks of water, which we are not supposed to give her, so she would just be very mad when she was not allowed to have any. They did decide to let her have a drink of Boost at about 1:30 AM, but that made her stomach sick and she threw up. Mark said that we will need to wash her hair today, because it got rather yucky.
We have lots of questions for the doctors and each other. Mark and I are going to try and find time to talk about things today, and also talk to the doctors that are on staff this weekend. We look forward to Dr. Singh coming in on Monday and having a chance to speak with him about Abby's current health status.
All in all we are devastated and saddened by this most recent turn of events. Our little Abby is such a fighter, but her body is not cooperating right now. It is so difficult to see her suffer and see her in pain.
I will try to update again later today after we have a chance to speak with the neurologist.
Love, Heather
Saturday, March 24, 2007 10:05 AM CDT Update as of 3:30 PM
Hi, this is Heather writing. Abby had a seizure this morning while she was still on 3rd floor and Mark was with her. This along with her poor heart function prompted the doctor team to move her back down to the PICU. They did a CT scan of Abby's head and she does not have any bleeding or clotting in her brain. So, they believe that the reason she had the seizure is because her poor cardiac output is not allowing enough blood flow to her brain. At this point she seems to be more stable.
I had not yet had a chance to update the website last night with the information that we received late in the day on Friday. Dr. Singh (cardiologist) ordered an echocardiogram (ultrasound) on Abby's heart yesterday. The results are very bad. Abby's current cardiac output of her right ventricle (the only one she has) is only about 25 Without the IV heart medications that she is on her heart would not be working. Dr. Singh and I had a very frank conversation yesterday about Abby's condition. He said that we are down to two choices; either looking at the possibility of doing a transplant (which we don't know if she is even a candidate yet) or basically understanding that her heart is failing and there is nothing left to do. The doctors have expressed that with her heart functioning this poorly she will probably only have a few months left, at most. Mark and I are trying to gather as much information as possible at this point to understand whether or not a transplant is the right thing for Abby. Transplants are not really as great as many people make them out to be. There are usually lots of complications and recipients need to be on tons of medications to prevent rejection of the organ. These are immune suppressing drugs so it makes the recipient much more susceptible to infections. Mark and I just don't know yet if a transplant is something that we want to put Abby through, especially if it might mean years of long hospitalizations. Making these types of choices is nearly impossible and we are trying to gather as much information as possible so that we can try to make the best decision for Abby. Over the next weeks we will keep you updated on Abby's health condition and we may also share our feelings as we are making decisions about Abby's future. We ask that you are understanding of our thought process and any decisions that we may make. This is a devastating and terrible place to be as parents, and for Abby.
Please continue to pray for Abby and for peace.
We will update again when we have new information to report.
Love, Heather
Hi Everyone - this is Judi Lund, another heart mom and friend of the Ostlies.
Heather just called me and asked me to update Abby's site for her. She is on her way to Childrens right now with Eva. Mark just called and Abby is not doing well and is being moved to PICU. Heather said she is not tracking when you talk to her and that an Echo showed her heart function is not good. She said she will call me later and let me know more once she finds out more but things are not looking good.
So - all you prayer warriers - PLEASE PRAY for Abby and Mark and Heather (and Claire and Eva). Heather said they have some very tough decisions to make. I can tell you from experience, they are in VERY good hands in PICU at Childrens...
Judi
Friday, March 23, 2007 3:39 PM CDT Happy Friday once again and here's a quick Abby update.
Abby's tummy is still giving her problems and as of this morning we are not to give her too much of anything by mouth. As you can imagine, every time she vomits this further irritates her airway, so Dr. Singh is now saying that she's nowhere near ready for a reassessment of her trachea. She's retaining fluid again, which is bad for her heart and lungs so her oxygen levels and blood pressures are volatile. The clotting factors in her blood are still off, so her IV site continues to bleed and the dressing needs to be changed often.
These are the facts and all of them tell us that she's not getting out of the hospital very soon. There was some talk about moving Abby back to the PICU today, but the Docs have decided to assign her one-on-one care where she is instead. As of today, we're told to expect a minimum of 4-6 weeks more in the hospital.
Heather and I are very excited to see Clare tomorrow. We've been justifiably cautious not to introduce her cold to Abby while we've missed her terribly.
We hope you all enjoy yourselves this weekend. God bless you.
The Ostlies
Wednesday, March 21, 2007 4:18 PM CDT Abby did have her Broviac IV line put in yesterday at around 3:30 PM. Everything went just fine with the procedure. The surgeon made a small incision on the right side of her neck and then inserted the catheter into this spot. Then the catheter is fed through her vein and comes out on the middle part of her chest. The incision on her neck will be allowed to totally close and the place where the line comes out on her chest the skin will seal around. After the procedure Abby did not feel great last night. She is sore where the incision sites are and the anesthesia always makes her feel kind of weird for a few hours. This morning she is still sore, but it is better than last night. Dr. Singh ordered for her to have some blood today because her blood pressure is rather low. She is also retaining some fluid again today (probably because of the surgical procedure) so she is getting extra diuretics. The diuretics tend to strip the potassium from the body, so she is also getting extra potassium today via IV. Everything is such a delicate balance and giving one thing can affect everything else. This keeps the nurses and doctors on their toes.
Dr. Singh did not like that Abby's blood pressure was low today, but he feels that the blood products that she received today will help.
Our neighbors, the Gizinskis, are coming to visit tonight. Abby is looking forward to seeing her friend Lauren, who is the same age as Abby.
Clare is still not feeling well, so she will probably spend a few more days at the farm. We miss her like crazy, but we know that it is best to not expose ourselves to whatever bug she has.
Abby is going to try to eat some chicken noodle soup now, so I am going to help her with that.
Love, Heather
Tuesday, March 20, 2007 8:35 AM CDT Good morning everyone, Sorry that we did not update the site over the weekend, we were just busy and did not find time to update.
Abby had an ok weekend. We had one episode on Saturday night where she threw up and then was coughing up blood. They had to do an emergency trach change to make sure that there was no blood in the trach, so that was a little scary for everyone. Abby handled it all very well. Then they did a chest x-ray to make sure that there was not blood in her lungs, and they did not see any. So it seems that the blood probably came from her airway where it is still irritated.
She felt a little bit better on Sunday and yesterday she was feeling more like herself again.
Abby was scheduled to have a Broviac IV line (can be much more permanent) put in on Friday, but then Dr. Singh decided they should do an MRV (to look at her vasculature) and figure out the best vein to put the Broviac in. So, the MRV was done on Friday afternoon, which meant that she needed to be under anesthesia. Then they were scheduled to put the Broviac in at 1:00 PM yesterday, but when they tested her INR (the thinness of her blood) it was too thin to perform the procedure. They gave her a bag of platelets to thicken her blood and were then planning to perform the procedure at 4:30 PM. However, they tested her blood again and it was still to thin, so then the Broviac was put off until today. We don't have a specific time yet for the procedure today, but it will probably be in the afternoon. The bummer of all these scheduling changes was that Abby didn't get to drink anything all day. She was not so happy about this, to put it nicely.
Mark talked to Dr. Singh on Monday morning and asked him some questions about when we might be going home. Dr. Singh said that it will for sure be a couple more weeks until we would go home. Abby is still very sick and there are a lot of steps to take before home is an option. She needs to totally get over this new bug that is in her abdomen (MRSA) which will take a few more days. Until then she is not allowed to eat anything and is on a restricted fluid diet. Then she needs to begin eating and get back onto solid foods. She needs to be weaned off the IV heart meds and start taking oral meds again. They need to perform another bronchial scope (tentatively scheduled for March 23rd) to determine what her airway looks like and if she will need to go home with the trach. She also needs to gain back some physical strength. So, we still have many steps to take. Sometimes people will make comments like "glad she's better" or they think that just because Abby was moved to 3rd floor that she is out of trouble. We just want to clarify that Abby is still very sick and she still needs lots of hospital help before we will go home. I don't mean to paint a dismal picture, but I also want to have everyone understand the truth. Abby is an amazing fighter. She is handling this hospital stay better than most adults would. And she somehow maintains her beautiful spirit (most of the time).
Yesterday Abby saw herself in a mirror for the first time since she came to the hospital. She immediately smiled a huge smile, tilted her head to the side and pulled on her pony tails. I said "see how beautiful you are" and she nodded. Only after all that did she touch her trach and look with an expression that said "so that is what everyone is always talking about and fussing over". Then she went right back to smiling at herself in the mirror. The Child Life Specialist was in the room during this time and she commented on what a "nice" reaction Abby had to seeing herself with a trach. That is our Abby, a ray of sun.
I feel like I am rambling, but just a few more updates. Clare has a cold, so she has been staying at Grandma and Grandpa's farm for the past week. We miss her like crazy, but we can't risk having Mama, Papa or Eva get sick. We need all hands on deck right now, so we won't see Clare until she is feeling better. This makes us sad.
Eva is doing great. She is growing like a weed and getting nice and plump. She is beautiful.
Mark and I are hanging in there. Mark has been wonderful about sleeping at the hospital with Abby. He never complains, even though his nights are restless and short. He is trying to get back to work on some days; he is doing his best to keep balance everywhere. I have had some sad days lately. It just seems that there is not a light at the end of the tunnel, or the light is so far off that we can't see it yet. It is very hard for me to feel any sense of normality when our family is all divided up and I rarely see my husband. I think that we all miss each other. I try to remind myself to take things a day at a time, but my brain has a hard time not thinking of what the future might be.
Thank you friends for your prayers and continuous support. You are all so important to us. We might not say it often enough right now but please know that we love all of you.
Keep faith (a reminder to myself)!
Love, Heather
Friday, March 16, 2007 8:44 AM CDT Good Morning. Abby is feeling a little better each day. Baby steps.
A new "bug" has been discovered in Abby's abdomen, from the dialysis catheter site. It is resistant to drugs and she will have this forever. Once the swelling is reduced and she’s feeling better, there shouldn’t be any ongoing effects from this, so we’re trying to keep this discovery in perspective.
Abby will have a central venous catheter put in this afternoon to replace her current IV. They are going to put in a line that can remain in for a long time. She is now expected to go home on some IV medications/nutrition.
. . . this entry required a pause while Abby painted our noses, cheeks and foreheads turquoise during physical therapy. Papa is a pushover for anything that makes her happy right now, but we’ll need to scrub her clean before going into the OR. The doctors would not approve of her color. She took some steps with help and now she’s sitting in a chair painting. Nice.
Happy Friday,
Mark
Thursday, March 15, 2007 2:45 PM CDT Hi everyone,
This is going to be a short update because I am at the hospital and have Eva on my lap while I am typing this message. Abby is doing a little bit better today. Her abdomen is still very sore and Dr. Singh actually asked us not to give her food for the next 24-48 hours, so that she doesn't get sick and feel like she will throw up. They increased the TPN that she is getting via IV so that she is still getting calories. She is not as puffy today as yesterday and is still peeing like crazy (partly due to some heavy diuretics). She is in a bit better mood today, but still not totally herself.
Mark spent the night with Abby last night, and we all need to get used to 3rd floor again. It seems that for the first few nights on 3rd floor the nurses are constantly coming in to check vitals and other things. Eventually they will get the "cares" grouped together better so that they don't have to come in so frequently, but last night Abby and Mark did not get much sleep. So, Abby is taking a nap now and I bet Mark would like to be doing the same thing, but he went to work this afternoon. Thank you Mark for being such a good Papa and provider.
The other two girls in our family are doing great. Clare is such a sweet and flexible little thing and Eva is a great baby...eating, sleeping, pooping and growing.
Thanks for checking the site. I will try to add a better update tonight or tomorrow.
Love, Heather
Wednesday, March 14, 2007 7:52 AM CDT It's Wednesday already. Wow.
Wylan Vobernik was Abby’s neighbor in the ICU during her first few weeks in the hospital. He and Abby have the same heart condition in common. He’s less than a year old and has the kind of cheeks that call out to be pinched. We’ve come to know his family enough to see that they’re good, down-to-earth people. Please pray for him and his family this morning. The blood vessels that feed his lungs have clotted off and the surgeons are planning a heroic effort this morning to try to save his life. God bless these people.
http://www.caringbridge.org/visit/wylanisaacvobornik
Abby is progressing well overall and, if all goes well, she’ll be leaving the ICU for what’s called a stepdown unit today. Her dialysis catheter was removed Monday afternoon. The site in her tummy is quite sore so she avoids coughing, etc. and they’ve bumped up her pain meds. You can see some fluid buildup in her face once again, but she seems to be responding to the diuretics (pee medicine) well enough.
I’d like to tell you that her mood is all sweet and sunshine, but she’s been a tough audience that past few days. Who can blame her. Although, weaning her from the pain meds is a minor medical challenge in the scheme of things, it’s not easy and has a dramatic effect on how she feels. The music therapist stopped in yesterday and this was a real bright spot for Abby. She had us all playing shakers and singing songs from the Sound of Music. This was great fun. We also adjusted her trach (took air out of a cuff) to see if she could make any vocal sounds. With my ear touching her lips, I heard “apple juice” and was happily off and running to find apple juice. She still has no appetite. I can imagine that since her nose isn’t getting airflow, nothing smells good or tastes normal. We’ll keep working on this.
God bless you and thank you for checking on Abby
The Ostlie’s
Sunday, March 11, 2007 Sunday, March 11
They decided not to remove the PD catheter today, because the OR team was so busy yesterday that they really need a break today. They had 13 unplanned surgeries yesterday, so they were exhausted. They are planning to remove the cath tomorrow at some point, but we have not yet heard the exact scheduled time.
Abby is retaining a little fluid today. They think this is because the PD dialysis has been shut off for two days now and her body is just trying to figure out exactly what to do with the fluid. Her kidneys are continuing to function fine, but they are just watching things closely. She also has developed some type of infection in the PD site, so she has been put on antibiotics for that. She still doesn't really want to eat anything, but the doctors are planning to cut back on the TPN (food) that she is getting through the IV once she has the PD cath removed. This should help her feel hungrier.
Abby got her hair cut today (just a little off the bottom and the bangs). Aunt Pamie and cousin Emma came to visit and Pam (who is a stylist) brought her scissors to trim Abby's hair. This was nice for Abby and should help to keep it from getting so tangled and matted in the back.
I don't have much more to report right now. Hopefully Abby will have a nice nap this afternoon and continue to pee so that she doesn't retain any more fluid.
We will update again when we know what time Abby will have the cath removed tomorrow.
Saturday, March 10
Hi friends,
Abby had a really good day yesterday. She continues to pee like a champ and they have stopped dialysis all together now. She still has the catheter in her abdomen, but they are planning to remove it tomorrow if she continues to pee and her blood chemical levels remain within the normal range. They will need to take her into the OR for just a few minutes to remove the catheter, but it is a very simple procedure...no risk. Then they may also move Abby to the third floor tomorrow. The third floor is the IMC (Intermediate Care Unit). Abby would be on third floor for the remaining days of her stay here. Dr. Singh told us last night that within a week or 10 days of her moving to third floor they will schedule another bronchoscopy to check her windpipe. They will then decide if she will need to go home with the trach or if she will be able to have the trach removed. Please pray that her wind pipe has healed successfully and that she will be able to have the trach removed before we go home. Really the only other issues at this point are getting Abby to eat (she still is not interested in eating) and getting her strong again, with physical therapy.
Abby had a fun evening last night. Clare and Eva came to visit her at the hospital and they watched a new Dora movie, played with some new Polly Pockets and My Little Ponies, and then Clare and Abby got to have a wagon ride! It was great for Abby to get out of her room for the first time in 24 days. She even held a pink calculator in her hand and pretended it was a cell phone on her wagon ride. This was a good Friday night.
Thank you to Lindsey and Riese for stopping by with the blanket and book for Abby, sorry that we missed you...it was just bad timing. Thank you to Katie and Jen for stopping by this morning, it was really good to see you. Thank you to Betsy and Kevin for the thoughtful gift for Abby and for Eva. Thank you to Cindy and Steve Clough. There are many others that I am not remembering right now, but thank you to everyone for your continuous prayers and love.
We hope you are all having a great weekend and enjoying the nice weather.
Love, Heather
Friday, March 9, 2007 11:13 AM CST Hi everyone,
Sorry that we have not updated the page for a few days. Things have just been busy and neither of us has had time to update. Yesterday we had our class to learn about how to care for a trach at home and what to do in an emergency. The class took about 6 hours. Mark and I took the class with Mark's mom Elaine and his sister Pam. They told us that anyone who might be caring for Abby should come and take the class. It was a very informative class and now we know what to do if Abby does come home with a trach (which is still unknown). After the class yesterday then Mark and I actually changed Abby's trach ourselves. I was pretty nervous, but stayed calm and everything went just fine. Abby was a very good girl. And the respiratory therapist was there with us just incase something went wrong. If Abby does come home with the trach then we will also have some sort of home nursing care for her.
On the subject of pee...everything is really starting to kick in like it should. Abby has been having many wet diapers over the past two days and last night she had two diapers that were over 300 ccs each (which is like an entire can of soda). The doctors are thrilled about this progress because they should be able to stop dialysis completely very soon if everything keeps going so well. They have not given us a time frame, but they just say that things are going in a positive direction.
They removed one of the arterial lines in Abby's leg today. They were using this line to draw her blood work and just as a secondary back up line, but Dr. Singh thought that they didn't really need it anymore, so it was removed. One less thing...yeah! I need to take a new picture of Abby's room, because there is so much less stuff now. This is always a good sign.
Now our main goal is to get Abby to eat. She still really doesn't have any appetite and nothing sounds good. Plus her stomach is also upset a lot of the time because of the acid build up. Hopefully as she continues to feel better the urge to eat will come back naturally. That is what we hope for.
We plan on Abby having a good weekend and continuing her recovery. Thanks for continuing to check Abby's web page. We are so glad to have such an amazing network of family and friends to give us support.
Love, Heather
Tuesday, March 6, 2007 12:55 AM CST Good afternoon everyone,
This morning Abby's eyes were the brightest that I have seen them in 21 days (which is how long she has been in the hospital). She really looked like our sweet little Abby this morning. Clare visited Abby again this morning and they were both very glad to see one another. Abby had two bites of a saltine cracker this morning and she said that she wants broccoli (which she never likes at home). They don't have broccoli on the menu here so we ordered green beans, grapes and a brownie, which are the other things that she said sound good to her. They have not arrived yet, so we will see if she eats any of them when they come.
Just in the time that I have been here today Abby had two wet diapers! They are stopping dialysis for the next 12 hours and will give her lasix (a diuretic) to see what her kidneys will do. We are encouraged by the two wet diapers so far today, but we also know that there is still a long way to go before her kidneys will be fully functioning again. Small and steady steps are just fine with us.
Abby had physical therapy again today. She stood on her bed, with my support, for about 20 seconds. This is really hard for her, but she is much more willing to try these physical things when mama or papa are there to help. She also sat up in bed for almost 2 hours this morning (mostly when Clare was there to visit with her). She also drew a few pictures, which helps with her hand strength and coordination.
Abby is getting more used to the trach every day. She really handles this change like such a mature girl. All of her nurses comment on how sweet and grown up she is. Abby is well beyond her years when it comes to these type of things. She is amazing. She has not seen herself in a mirror since she arrived at the hospital, and maybe in a few days if she feels ready we will show her how the trach looks in the mirror. I am not sure how she will feel about seeing it. She never liked to look at her surgery scar when it was healing, so I just can't predict how she will feel about the trach. I hope that she always knows how beautiful she is (we tell her all the time) even though she has to have this to help her breath.
Well, we plan to continue having a good day here at the hospital. If we have anything else to report we will update the site again later.
Love, Heather
Monday, March 5, 2007 8:33 AM CST I have updated the photos with the new pictures from Saturday! It was so great to finally have our three beautiful girls in the same room together.
Abby had a pretty good day yesterday. She did not want to eat much of anything, but she did have one bite of the stroganoff that Oma and Opa made for her. She said that it tasted good, but then she didn't want to eat anymore. We all just need to be patient with her and eventually she will feel like eating again.
Oma and Mama gave Abby a manicure and pedicure yesterday and she really liked that. She has pink polish on her toe nails and turquoise polish on her finger nails. Her two favorite colors.
Abby was very tired yesterday and she slept on and off for most of the day. From 4-8 PM yesterday she was able to go off the ventilator and was breathing on her own through the trach with some warm humidified air blowing into the trach. She did great with this, so each day they will try to increase the amount of time that she is off the ventilaor and get her breathing on her own through the trach.
When I spoke to Abby's nurse, Susie, this morning the doctors had not yet rounded, so I do not have much more of a medical update. I will try to add to the journal later today if I know more of what the doctors plan for today. Yesterday they also stopped the dialysis for 6 hours just to test her kidneys. Not much happened, but they want to keep testing them like this because all of the doctors feel confident that one of these times they will just really start working again. We pray for this.
Have a good Monday everyone and I will try to update again later.
Love, Heather
Sunday, March 4, 2007 8:05 AM CST Dear Friends,
Abby had a pretty good day yesterday. She drank several cans of the meal replacement (Boost) and did not throw them up. She also had sips of Sprite, pink lemonade, apple juice, and of course water. The doctors do not want Abby to have too much clear liquid because it depletes things in her body like sodium. Abby is not really interested eating much of anything yet. The nurses tell us that this is fairly normal, to have an aversion to food, when you have not eaten for so many days. We will continue working on helping Abby to eat. We might try a few Cheerios today and Oma and Opa said that they would make stroganoff for Abby and maybe she could just eat the rice.
There is a chemical in the body called Creatin (not sure of the spelling) that is given off by the muscles and is then processed by the kidneys. This level in Abby's body continues to be on a downward trend, which the doctors say is an even better indicator than pee of how the kidneys are functioning. Since her level of the chemical is going down this means that the kidneys are starting to work more and more. What a good thing.
And the best news for last...we had all three of our daughters in the same room for the first time yesterday. Clare was so excited to see her big sister and Abby was overjoyed to see Clare. In true big sister fashion Abby was the one rubbing Clare's back as Clare sat on the bed with her. We have some great pictures from this momentous occasion and I will get them posted as soon as possible. This was a great event for our whole family.
We hope that you are all having a good weekend enjoying the snow and sunny weather. Thank you for checking on Abby and praying for her recovery.
Love, The Ostlies
Thursday, March 1, 2007 Evening
Abby tried some liquid meal replacements and has been able to keep them down so far. The docs are giving her the benefit of the doubt and pushed the orders for a feeding tube until morning. Hopefully she's able to keep successfully drinking this stuff, but we're taking it slow.
She was up for quite a while tonight. She watched some Nemo (TV's fine;), drew a picture and started working on a puzzle. I was very impressed with her stamina! I also got to sit her up in bed and rub her back. We had a nice little hug.
Enjoy the snow.
Afternoon
"Whenever I see you're smiling face" ... you know the song ... James Taylor. This is the song in my head. Abby has very limited communication with us right now, but it's wonderful when she whips out that smile.
She's been very stable the past couple of days and more awake. She's frustrated that she cannot talk; this is completely understandable. Dialysis is not working quite as well as they'd like and the site where the tube enters her tummy is leaking. Because of this, she's restricted on drinking. It's impossible to explain to a thirsty 3-year-old that she cannot have a drink.
They want her to eat, but she's only interested in drinking. When she consumes anything substantial, she tends to throw up. They're planning to put in a feeding tube in through her nose this afternoon if I can't convice her to eat more. She's resting peacefully right now.
It was really nice to spend some time with Clare yesterday. She is so sweet and her personality really shines when you've got her alone. We had fun together.
We have been the recipients of much generosity lately from all directions - Heart Moms, Just for Kix, General Mills, neighbors, friends and of course family. None of this goes unappreciated. Thank you all.
God Bless you and your loved ones,
Mark
Tuesday, February 27, 2007 12:08 AM CST 3:40 PM
Just a quick update...I just talked to Mark and Abby is having an ok day. She was continuing to add fluid, so they have changed the PD dialysis again to every 30 minutes. She is not peeing anymore on her own. She did have two small poops, but no urine. Please pray for pee.
Otherwise, she wants to watch Cinderella III and they have to keep starting it over for her because she watches for a few minutes and then falls asleep.
The doctors want her to start eating on her own again, but she doesn't seem interested in food at all. She just wants water. She did manage to drink some chocolate milk this morning, but she threw that up. Her stomach is just very irritated, so they are also giving her a medication to calm her stomach acids down. Mark said that they are going to try and get her to eat a few butter noodles this evening. I hope that it goes well, because she could use the strength from food.
Thank you to all of you for checking the site. Also, to all of my JFK dancers I just want to say I miss all of you. Resigning as Director was a very difficult decision, but it was the right decision for my family now. I do miss all of you.
Noon
Hi everyone,
Sorry that we did not get a chance to update the website yesterday. Mark and I were at the hospital and taking turns between Abby and Eva yesterday, so we just didn't have a chance to update the site.
Abby is retaining some fluid again. She was up about 2.2 pounds again by the end of yesterday. She is also running a temp of 101, so they think that she might have some sort of infection. They are treating her with antibiotics and they are trying to use the PD (dialysis) to get the fluid off. Dr. Singh also wrote to chance the doses on several of her medications yesterday. Abby was able to take all of her own breaths yesterday for 4 hours, with just some positive pressure from the ventilator. Then she started getting worn out so they began giving her about 10 breaths per minute just to help her rest better through the night.
The best and most exciting thing that happened yesterday was that Abby got to meet her baby sister Eva. I brought Eva into Abby's room and Abby was awake. Mark and I said this is your baby sister Eva and Abby smiled and put her arm out to hold her. We laid Eva on the bed with Abby tucked into her arm and Abby looked at her and smiled and snuggled her head into Eva. It was the best moment. Mark and I were both crying. Even with all that Abby is dealing with she is still her sweet and loving self. Amazing.
I have posted a picture of Abby with Eva on the photo page.
I am at home today with Clare and Eva and Mark and his Dad are at the hospital with Abby. We are going to try and get into a good routine of having Clare and Eva at home, since it doesn't seem like Abby will be leaving the hospital in the near future. It is sad to be home without Abby, but we are going to try and make things as normal as possible to the other two girls.
Please keep praying for pee, as Abby's kidneys are still not working. This is the biggest obstacle to overcome at the moment. The kidneys need to function and then we can think about the other issues.
Thank you so much for checking on Abby and our family.
All our love,
The Ostlies
Sunday, February 25, 2007 8:54 AM CST Hello everyone,
I hope that you are all enjoying the new snow today. If we were at home Abby and Clare would definitely want to play outside and make a snowman today.
I have good news to report this morning. I talked to Mark about 15 minutes ago and this was his report from last night. Abby peed 75 ccs into her diaper on her own overnight! This is a sign of progress. It is a baby step in the right direction. Please keep praying for pee and that her kidneys will turn back on and start to fully function. The doctors told Mark yesterday that kidney function is currently their largest concern. So pray for good kidney function and pee.
Also, they are planning to take out the NG tube in Abby's nose today. This tube is currently suctioning out the stomach acids so that she doesn't feel sick. After they take the tube out they are going to let Abby start having some sips of water and other clear liquids; maybe even a popsicle. This will be so fun for her.
Mark said that her eyes are much more focused now (not so many drugs on board to make things cloudy). They have asked her if she has any ouchies and she says no. She is trying to communicate more. She doesn't have a voice right now, because she is still getting breaths from the ventilator. This puts positive pressure into her lungs which does not allow air to reach her vocal cords, so she can't make sounds. Although, she can still mouth the words and Mark says it is very clear when she says water to drink. I know that even without the sound we will understand her.
So, this is a good report for the morning. I believe that the prayers are working. Keep them coming!
We will try to update again later as the day unfolds.
Love, The Ostlies
Friday, February 23, 2007 4:45 PM
Abby went in for surgery at 3:15 and we just got word that it all went well. We'll get to see her within the next little while. Thank you for checking on her and enjoy your weekend.
Morning
Hello all. Not much to report this morning. Abby is currently scheduled for a tracheostomy between 2-3:30 PM today. Since this is not an emergency procedure, everyone is being flexible with the scheduling to allow more critical procedures to occur in the OR. She's being kept very quiet with sedation. This is expected to continue throughout the weekend.
We had a very nice morning with Clare and Eva. This weekend is sure to bring snow and bad roads; Clare will be riding out the storm at Grandma and Grandpa's farm. Cousin Delaney will be out there too. They're sure to have much fun together. She's a joy.
This morning, I was happy to speak with a few of my friends from General Mills. The incredible support from my colleagues there is simply overwhelming. During this stressful time, everyone from my team to my boss and on down the line have worked hard to keep work concerns from my mind. Thank you all for being such great people and a source of encouragment. I am so grateful.
We will update later today.
God bless - The Ostlies
Thursday, February 22, 2007 9:16 AM CST Good morning everyone,
This is Heather writing today. Mark and I were able to come home last night with Eva and sleep in our own bed. Abby had a quiet and restful night (with the help of drugs). Clare had a good night at the farm and is actually on her way home now to come and spend the day and night here.
Abby's two procedures went very well yesterday. First, they performed the bronchial scope to assess the damage to her throat from the breathing tube. The doctors saw that her windpipe is very damaged and has scar tissue in several places. Just below her voice box the opening is very constricted and raw and also a little further down there is a place with significant damage. They said that the lower damage may actually be from her previous intubations and the upper damage is likely more recent. Either way, these damaged areas create a problem. There is no way for them to heal with the breathing tube in her throat and the doctors can't remove the breathing tube because the damaged areas only allow a minimal amount of air to get to her lungs (which is why she had so much trouble breathing when they tried to remove the breathing tube on Tuesday; they said that it was like breathing through a pin point). So, the intensivists and cardiologists conferred and they all feel the best course of action is to perform a tracheostomy. I have added the definition below. This will allow her to breath through an opening in her wind pipe below the damaged areas. The doctors feel that they need to get her breathing on her own so that she can get off the narcotics and start moving around and eating and drinking. The tracheostomy will also then allow her upper airway to heal and eventually she should be able to breath through her mouth again.
So, as of this morning they are planning on putting the trach in on Friday afternoon. We don't yet have a specific time.
A tracheotomy or tracheostomy is a surgical procedure performed on the neck to open a direct airway through an incision in the trachea (the windpipe). (Technically, the former term, with the Greek root tom- meaning "to cut," refers to the procedure of cutting into the trachea, whereas the latter term, with the root stom- meaning "mouth," refers to the procedure of making a semipermanent or permanent opening. Tracheostomy can also refer to the result of the procedure, i.e. the opening itself.)
The other surgical procedure Abby had yesterday to insert a catheter into her abdomen so that peritoneal dialysis can be performed using her abdominal tissue went very well and is working just as expected. Here is the definition of peritoneal dialysis as I know some of you are interested in more of the medical information.
Peritoneal dialysis
Main article: peritoneal dialysis
In peritoneal dialysis, a sterile solution containing minerals and glucose is run through a tube into the peritoneal cavity, the abdominal body cavity around the intestine, where the peritoneal membrane acts as a semipermeable membrane. The dialysate is left there for a period of time to absorb waste products, and then it is drained out through the tube and discarded. This cycle or "exchange" is normally repeated 4-5 times during the day, (sometimes more often overnight with an automated system). Ultrafiltration occurs via osmosis; the dialysis solution used contains a high concentration of glucose, and the resulting osmotic pressure causes fluid to move from the blood into the dialysate. As a result, more fluid is drained than was instilled. Peritoneal dialysis is less efficient than hemodialysis, but because it is carried out for a longer period of time the net effect in terms of removal of waste products and of salt and water are similar to hemodialysis. Peritoneal dialysis is carried out at home by the patient and it requires a substantial degree of motivation and support to perform. It does free patients from the routine of having to go to a dialysis clinic on a fixed schedule multiple times per week, and it can be done while traveling with a minimum of specialized equipment.
Today Abby will be resting soundly (via drugs) for the day. This afternoon Dr. Dasanko (the intensivist) will move the IV neckline to a place on her shoulder area to prep for tomorrow's tracheostomy. They need to move the Iv neckline so that it is not so close to where the trach will be placed. This will prevent infection and other complications.
I know that this is a long update, but I wanted to give you as much information as we currently have.
Thank you all so much for your continuous prayers.
Also, thank you to many of my former Maple Grove dancers and parents for the wonderful gifts that Steve and Sarah Levin brought to the hospital yesterday. You are so generous and thoughtful! Thank you.
Thank you Chris Plambeck for bringing dinner last night and for arranging for Mark to get away from the hospital for a few hours to have a massage yesterday. He appreciated the relaxing time very much.
Thank you Erin Mitchell for the great lunch yesterday. It was good to talk for a little while and see your smiling face.
There are so many other thank yous that we need to say, but I can't remember them all right now. Thank you to everyone for all you do for our family.
We will update later today if there is any news.
Love, Heather, Mark, and the girls
Wednesday, February 21 1:50 PM
They just took Abby back into the OR. With the two procedures that they are going to perform they have told us to expect things to take several hours. They will come to get us when everything is done and give us a report on how things went in the OR. Then after they have her back in her room in the PICU we will get to see her. We are praying that everything will go smoothly and there will be no complications.
12:30 PM
About 10:30 Abby had a new breathing tube put in. Her oxygen levels where dropping and heart rate up just enough that the Dr. wanted to avoid anything serious, so they put in a larger size breathing tube to reduce stop then air leak. It was quick and non-traumatic for Abby and effective. She's doing well again now.
10 AM
Abby is having a quiet morning. There is air leaking out around her breathing tube, which may be a good thing, but it sounds like an odd gurgle. Yesterday, they put a smaller tube in since her airway was constricted, so a leak tells us that there is more room for airflow today.
We had an strange moment last night when her heart rate dropped from about 190 to 140 in a blink. 140 is better, so we’ll take it, but it was a quite a surprise to see it happen within seconds. This is an indication of volatility in the way that the electrical current is traveling within her heart. It is also probably related to the atrial flutter she had back in Jan, but this could just be a father's speculation.
9:20 AM
Good morning everyone,
First, I (Heather) would like to thank all of you for checking in on Abby so often and for signing the guestbook. It is truly helpful to read your thoughts and prayers and know that we are not alone in this distressing time. I had a very bad day coping with everything yesterday. As a mom I just couldn't keep it together. There were lots of tears and I was so scared watching Abby struggle to breath. I tried to comfort her the best that a mom can when a little one if fighting so hard, but I didn't feel like I was doing a very good job. I just wanted Abby to feel better and breathe easy, but she couldn't do it yesterday. God knows that she tried so hard. Mark stayed very strong for all of us yesterday. He was upset and emotionally mad, but he was the rock. I guess that I am just explaining our feelings to you, because we are not always strong and we need the support that you give us.
I talked to Mark on the phone this morning (as I am still at my parent's house with Eva) and he said that Dr. Singh (Abby's cardiologist) is currently trying to schedule her in the OR for around 1:00 PM today. At this time they will put her under anesthesia and do the bronchial scope (looking at her throat to get a baseline for how damaged it currently is) and the peritoneal (putting the catheter in her abdomen as a different was to do dialysis). I am not sure how long these two procedures will take, but that is the current plan for the day. Otherwise I believe that they will just want her to be resting. Overnight she did have about 2 cc's of urine output per hour, which is not very much but it is something. Also, yesterday they did an ultrasound on her kidneys and this showed no permanent damage to her kidneys, so this is encouraging as hopefully her kidneys will regain full function.
Thank you all for your prayers, please keep them coming.
Mark or I will update again this afternoon after Abby comes out of the OR.
Wednesday, February 21, 2007 9:16 AM CST Good morning everyone,
First, I (Heather) would like to thank all of you for checking in on Abby so often and for signing the guestbook. It is truly helpful to read your thoughts and prayers and know that we are not alone in this distressing time. I had a very bad day coping with everything yesterday. As a mom I just couldn't keep it together. There were lots of tears and I was so scared watching Abby struggle to breath. I tried to comfort her the best that a mom can when a little one if fighting so hard, but I didn't feel like I was doing a very good job. I just wanted Abby to feel better and breathe easy, but she couldn't do it yesterday. God knows that she tried so hard. Mark stayed very strong for all of us yesterday. He was upset and emotionally mad, but he was the rock. I guess that I am just explaining our feelings to you, because we are not always strong and we need the support that you give us.
I talked to Mark on the phone this morning (as I am still at my parent's house with Eva) and he said that Dr. Singh (Abby's cardiologist) is currently trying to schedule her in the OR for around 1:00 PM today. At this time they will put her under anesthesia and do the bronchial scope (looking at her throat to get a baseline for how damaged it currently is) and the peritoneal (putting the catheter in her abdomen as a different was to do dialysis). I am not sure how long these two procedures will take, but that is the current plan for the day. Otherwise I believe that they will just want her to be resting. Overnight she did have about 2 cc's of urine output per hour, which is not very much but it is something. Also, yesterday they did an ultrasound on her kidneys and this showed no permanent damage to her kidneys, so this is encouraging as hopefully her kidneys will regain full function.
Thank you all for your prayers, please keep them coming.
Mark or I will update again this afternoon after Abby comes out of the OR.
Tuesday, February 20, 2007 3:13 PM CST Bad day today, but Abby is resting now. She's been working so hard since about 8 AM this morning. They needed her awake to take her off the respirator, which caused a great deal of stress on her. She had her breathing tube taken out at 10 AM. She was struggling for every breath as her windpipe has be scratched and inflammed. Her oxygen levels where terrible, her heart rate was hovering close to 200 bpm and blood pressure low. A swarm of people where helplessly looking on hoping that she could do it on her own. In the middle of this her dialysis machine suddenly stopped working at 10:30 AM and she had to be taken off dialysis. The staff here tried several things to help, but at 1:30 PM she had to be put back on the respirator.
They also took the opportunity to test her kidneys since dialysis was off and they are not working due to stress and lack of bloodflow. She'll be put back on dialysis later today. She's on a temporary kind of dialysis currently (hemofiltration), which filters the blood. They are planning for surgery on Wed/Thur of this week to create access in her stomach for longer term dialysis (paritineal). You'll forgive any spelling errors.
When she was awake today, she was scared and sad. Real tears, real pain and real fear. It breaks our hearts and scares us too.
Thank you again for caring and praying for our little pumpkin.
God bless - The Ostlies
Monday, February 19, 2007 10:50 AM CST It was another good night last night. All was quiet. She's now under 35 lbs again, so she's lost about 7 lbs over the weekend (I've found them)! She's looking more like herself. She'll most likely stay on the respirator today, but she's breathing about half of her breaths on her own. They plan to also turn down the dialysis to test her kidneys.
Dr. Singh, her regular cardiologist, is back today. He is wonderful and it is comforting to see him. At the same time, other doctors have been deferring to his opinion about her long-term prognosis and now we get to hear it. He has deep concerns. After being "up" from seeing her improve the past few days, it's hard not to feel deflated as a potential transplant is being discussed.
Heather will be here both here and home today. Clare will be very excited to spend some time with Mama and new baby at home. She has been a trooper having much fun with Grandma and Grandpa at the farm.
Thank you for checking on our little miss.
God Bless,
Mark
Weekend There are two new pictures in the photo album, one of Abby in her room in the PICU and another of Clare and Eva.
Sunday, 2/18
Abby is continuing to make steady progress. She lost another 2.2 lbs as of this morning and is more wakeful. If things go well today, they may take her off the respirator tomorrow to help her gain strength rather than trying to keep her in light sedation. We're looking for another day of quiet and rest. Happy Sunday!
Saturday, 2/17
Abby lost over 2 lbs of fluid since yesterday. Good girl! She's stable and wiggling. We're trying to keep things very calm here today since she's in and out of sleep. Will update later as time permits.
Friday, 2/16
Our whole family was in the same building to day. I call that nice. Clare and Eva are both wonderful in their own ways. It was great to see them together. Clare was so excited to sit with Mama and help hold Eva. She misses Abby. This was clear today when she saw a little girl in pig tails and a pink shirt walking toward her in the hallway. She was beyond excitement calling “Abby, Abby” and hurrying over until she realized it was a stranger and turned back a little confused and a little heartbroken.
Abby has been stable since this morning, opened her eyes many times today and very much wants her hand held. She is such a good girl and listens to nurses’ directions about coughing and holding her head still even though the breathing tube irritates her. They are keeping her in only a light sleep, since deep sedation causes her blood pressure to drop. She is very slowly giving off some fluid. To put it in perspective - yesterday she took in 2.2 liters more than came out and her accumulated weight gain this morning was 8 lbs since the she was admitted on Tuesday. Today she gave out 5 ounces more than went in. It's progress.
The room seems to be getting smaller. Let me paint a picture. Abby now has 2 nurses working around the clock who have to keep track of 17 different IV lines feeding her all kinds of “stuff” (we’ve kind of lost track), a respirator, a dialysis machine, and a heat lamp. The heat lamp is the only device that doesn’t require its own separate computer (I just keep pushing the button). Add to this the various doctors and respiratory therapists that pop in and it’s snug.
Thank you to everyone that came to see us, brought something, sent care packages and posted words of encouragement today. We thank God also for all of you who pray for Abby and our family. We feel the love. For me (Mark), in the midst of a situation like this, my prayers are heartfelt, but repetitious at best. I appreciate knowing that you are out there, that you love Abby, and that you are better at praying than I am. At least this way God gets some variety. God has given me so much to be thankful in my life, but I want to script the next chapter rather than simply trusting. Knowing that you are all praying for Abby helps me to trust more and pitch my own manuscript less. Thank you.
God bless, Mark
Thursday, February 15, 2007 9:15 PM CST Update as of Friday morning:
Mark called me at around 11:30 pm last night with some bad news. They had to put Abby on the ventilator (which means that she has a breathing tube in her throat to do the breathing for her). The intensivist doctor that has been working with Abby told Mark that Abby was getting to a critical point and they just needed to get the breathing tube in place so that they could do it in a controlled way and not in an emergency situation. Abby oxygen levels were falling dramatically last night (they were only in the 70's) and she needs the help to continue breathing.
This morning (Friday) they will begin dialysis. The intensivist feels that this is absolutely necessary to help her try and recover.
I have not talked to Mark yet this morning to see how things went through the night, but I wanted to add this most current news.
Abby is in a very serious situation. Her body is in trouble and she is having a lot of difficulty keeping everything running. Our little Abby needs all of your prayers and good thoughts sent her way. She is a fighter, we all know, but her condition at this time is very critical.
Please pray. I will update again later this morning after I have a chance to talk to Mark or see Abby myself.
Love, Heather
Update on Thursday night:
Hello everyone and thank you so much for all your prayers.
Tonight we have a very specific prayer request. We need everyone to pray super hard for Abby to pee. Right now Abby is retaining about 4 extra pounds of fluid. Her heart is very weak so her body is having a difficult time processing the fluid and allowing her to pee it off. Her kidneys are functioning fine at this time, but her heart is just not pushing the blood through her body adequately. They are giving her IV diuretics to help her body process the fluid, but we need you to pray that in the next 12 hours she will be able to pee.
If she is not able to pee off this extra fluid, then we have been told that they may need to put her on a dialysis machine to get rid of the fluid. This would also mean that she would need to have a breathing tube. This is not what we want! Dialysis is very serious and hard on a person's body, and being on a breathing tube would be very hard for Abby also. So pray for pee.
I (Heather) was able to see Abby tonight for a few hours, along with her Oma and Opa (my mom and dad). She recognized all of us and smiled several times at her mama. However, it makes Abby very excited to have me there and this excitement causes her heart to work harder and her breathing rate and heart rate to increase. So, it is so hard to know what to do because I want to see her but not put more stress on her body. In any case, it was good to touch her and tell her how much I love her and miss her. Mark was also able to spend some time with Eva, which was wonderful.
Mark continues to stay at the hospital with Abby and is by her side. He is amazingly strong and Abby is so lucky to have him as her papa.
I am staying at my mom and dad's house with Eva right now, which is the right place for now so that I can have some needed emotional and physical support.
Clare is at grandma and grandpa Ostlie's farm and she is doing great. She loves spending time with them and they are so good to her.
This is a very hard time for our family as we are all separated. It is the best situation for now, but emotionally it is very difficult to be away from one another. Please also pray for Mark and I and all of our family members to have strength during this terrible time.
Finally a note about Eva. She will be 3 days old in about 10 minutes and she is absolutely beautiful. She is breast feeding like a champ and is a complete joy. I have posted a picture of Eva under the photo section of this site.
Please pray for pee and strength. We will update again tomorrow as to Abby's condition.
Love, Heather and Mark
Tuesday, February 13, 2007 4:19 PM CST Eva is here. She was born last night (Feb 12) at 9:41 PM. She's beautiful. 8 lbs 4 oz, 21". Heather rocked! We're incredibly excited to welcome her!
This is a late update, but with good reason. I (Mark) am at Children's Hospital with Abby, while Heather and Eva are at St. Francis Hospital. Clare is with Granda and Grandpa; no hospital for her, but we've all had an intense 24 hours.
Abby has come down with a virus and become very dehidrated. In turn, she started to have seizures while we were at the hospital in Shakopee. She and I were taken by helicopter to Children's Hospital. She is doing well right now, but expected to spend a few days here. She's not actually met Eva yet and will be very exited to do so.
Please read this and be more excited about Eva than worried about Abby. We know Abby will charge through this. Eva's favorite activity is breastfeeding so far, but we expect she'll branch out after several months.
Be well and God bless,
Mark, Heather, Abby, Clare and Eva
Monday, January 15, 2007 1:19 PM CST Abby's procedure went well this morning. She is no longer in atrial flutter. The hope is that her heart has a chance to gain strength if she continues with a "normal" heartbeat. Dr. Singh wants to give her at least a month or so before making another assessment. Today does not mark the end of this chapter in Abby's story, but the next month seems like a good time to step back and focus on welcoming a new baby into the world.
Abby is sleeping peacefully now. Of course she will be hungry and thirsty when she wakes up. Opa (Grandpa Paul) has her favorite dinner planned - beef stroganoff. She was very brave today.
A sincere thank you to all of you who pray for Abby and our family. The love that we get from all of you is an unbelievable and humbling blessing.
May God bless all of you and your families.
Love - Mark, Heather, Abby, Clare and Eva (coming soon)
Monday, January 8, 2007 Prayers Requested
Most of the time Abby is a perfectly delightful three-year-old. She loves singing, dancing, drawing and playing with her sister. Over the past many weeks, however, she has been loosing steam, complaining of stomach aches and on one occasion she gave us a scare by loosing consciousness and was virtually impossible to wake. Dr. Singh gave us some direction, which we’ve followed, but still we have had concerns.
The morning of Jan 2 Abby just didn’t look right; Heather took her in to see Dr. Singh and after a number of tests he delivered a difficult opinion. He believed Abby’s heart was loosing strength and would simply be unable to recover completely. He believed that she would need a transplant and should start the testing to determine if she would qualify as a candidate. We were not prepared for this news and it seemed that our wonderful, compassionate Dr. was not either.
On Jan 4, Dr. Singh presented Abby’s case to consult with others. This time the consensus was more hopeful. Her heart is in Atrial Flutter and if this could be corrected her heart’s function could possibly improve. We’re all for hope. Next Monday (Jan 15) Abby will have her heart stopped and restarted in an effort to correct the Atrial Flutter. Meanwhile, she will continue to be a joy. Please pray for our sweet little girl.
Love - Mark and Heather
Thursday, December 21, 2006 1:40 PM CST Merry Christmas to everyone!
Wow it has been a long time since we updated Abby's website, which I guess can be viewed as a good thing because Abby has been doing just awesome over the past few months. The new picture on the homepage is from when she was the flower girl at my friend Stefanie's wedding is October. She did such a good job!
Abby started preschool in September. She goes twice a week on Tues and Thurs. She really likes her teacher and the kids in her class. It is a new adventure for her and I think that it makes her feel grown up to have an agenda of her own.
Abby's sister Clare is now 20 months old and she and Abby have such a great time together (well mostly). We actually just moved them into the same room together to make room for the new baby girl that we are expecting on February 8, 2007. The first night of sharing a room was really hard for Clare, but Abby loved it. They are good girls.
We are really looking forward to celebrating Christmas this year as a family and also spending time with our relatives. The girls are looking foward to Santa coming to our house and they both want new Dora dolls.
We hope that all of you are enjoying this holiday season and are healthy and happy.
All the best from our family to yours,
Mark, Heather, Abby and Clare Ostlie
Thursday, July 27, 2006 9:32 AM CDT Hello everyone,
Abby turned 3 yesterday!!! WOW! We can't believe that our little baby is growing up so quickly. We were planning to have a small party with family and few friends yesterday, but then on Monday night Clare got sick with a nasty throat virus, so we decided to postpone until this weekend. Luckily now Clare is feeling much better and Abby hasn't gotten sick! Abby opened a few presents before Daddy left for work yesterday and then we had her favorite dinner (stroganoff) and birthday cake for dinner. It was a quiet day, but very relaxing and fun. Now she is looking forward to playing with her friends and relatives on Saturday.
Otherwise, everything else at the Ostlie house is great. Busy, but great. We do have some exciting news...we are expecting our third baby! The due date is February 8, 2007. So, I am about 12 weeks along. We got our first ultrasound pictures of the baby on Tuesday, but we won't be able to find out the sex of the baby until the beginning of October. Abby is very exited to be a big sister for the second time and Clare is just starting to get the idea that another baby is coming.
I am going to be teaching dance again starting in Septebmer. Abby begins pre-school in Septebmer. Mark continues to be as busy as ever at work. So we will have a busy fall. Come Christmas I hope that things will slow down a little and we can enjoy some relaxing time at home.
I will post some new pictures of Abby and Clare after the weekend.
Thanks for continuing to check the site! We will see Dr. Singh again next week and I will let you know how Abby is doing from the heart front.
Love,
The Ostlies
Mark, Heather, Abby, Clare and Baby #3
Tuesday, June 6, 2006 10:58 AM CDT Update June 6th:
Sorry about the pictures not being updated until today...the Caringbridge site was having trouble uploading the pitures. You should all be able to see them clearly now. Also, I just wanted to let everyone know that Abby is doing well. She hasn't had any more "spells" since Saturday morning. What a fluke..who knows what was going on. We are just so glad that she is doing better.
Update June 4th:
Hi everyone,
Well, Abby was actually released from the hospital last evening and was able to come back home. The doctors monitored her throughout the day and finally decided that they just were not seeing anything unusual on the tests, so they said that we could take her back home. So, we packed her back up, picked up Clare at Oma and Opa's house, and came home to sleep in our own beds. Dr. Singh said that he just can't explain what would have triggered the episode that she had on Saturday morning, but he completely believes us that something was going on. He will continue to check in with us over the next week and we will see him again in about 7-10 days. Of course, if something starts to happen again we will take her back in right away. She really gave us a scare (even Mark agrees and he tends to be the more conservative and relaxed one when it comes to Abby's health).
Thank you for checking in on Abby and sending positive thoughts her way.
We will update again soon.
Enjoy the rest of this gorgeous weekend.
Love, The Ostlies
Mark, Heather, Abby and Clare
P.S. I have updated the pictures. The picture on the home page is of Abby playing with a diorama that Mrs. Gruhn's 5th grade class made for her...it is the Wizard of Oz! She loves it and the kids did such an awesome job on all of the characters. The rest of the pictures in the photo album are from when I took the kids to the Science Museum and they saw the dinosaurs. It was so much fun!
Sunday, June 4, 2006 11:27 AM CDT Hi everyone,
Well, Abby was actually released from the hospital last evening and was able to come back home. The doctors monitored her throughout the day and finally decided that they just were not seeing anything unusual on the tests, so they said that we could take her back home. So, we packed her back up, picked up Clare at Oma and Opa's house, and came home to sleep in our own beds. Dr. Singh said that he just can't explain what would have triggered the episode that she had on Saturday morning, but he completely believes us that something was going on. He will continue to check in with us over the next week and we will see him again in about 7-10 days. Of course, if something starts to happen again we will take her back in right away. She really gave us a scare (even Mark agrees and he tends to be the more conservative and relaxed one when it comes to Abby's health).
Thank you for checking in on Abby and sending positive thoughts her way.
We will update again soon.
Enjoy the rest of this gorgeous weekend.
Love, The Ostlies
Mark, Heather, Abby and Clare
P.S. I have updated the pictures. The picture on the home page if of Abby playing with a diorama that Mrs. Gruhn's 5th grade class made for her...it is the Wizard of Oz! She loves it and the kids did such an awesome job on all of the characters. The rest of the pictures in the photo album are from when I took the kids to the Science Museum and they saw the dinosaurs. It was so much fun!
Sunday, June 4, 2006 11:08 AM CDT Hi everyone,
Well, Abby was actually released from the hospital last evening and was able to come back home. The doctors monitored her throughout the day and finally decided that they just were not seeing anything unusual on the tests, so they said that we could take her back home. So, we packed her back up, picked up Clare at Oma and Opa's house, and came home to sleep in our own beds. Dr. Singh said that he just can't explain what would have triggered the episode that she had on Saturday morning, but he completely believes us that something was going on. He will continue to check in with us over the next week and we will see him again in about 7-10 days. Of course, if something starts to happen again we will take her back in right away. She really gave us a scare (even Mark agrees and he tends to be the more conservative and relaxed one when it comes to Abby's health).
Thank you for checking in on Abby and sending positive thoughts her way.
We will update again soon.
Enjoy the rest of this gorgeous weekend.
Love, The Ostlies
Mark, Heather, Abby and Clare
Saturday, June 3, 2006 1:21 PM CDT Hi everyone,
Well, I have some sad news...we are back at the hospital. Abby seemed to be doing well until this morning. When she woke up around 6:45 am she seemed fine, but then by 7:30 she was lethargic, sweaty, and could not stay awake. She would briefly open her eyes, but then fall right back asleep. Her heart rate also seemed elevated. Mark and I were very worried about her, so I called Dr. Singh (this is his weekend on-call at the hospital). He said that we should bring her in right away. So, we arrived at the PICU at about 9:45 am. They hooked up all the usual stuff, pulse-ox, heart monitors, etc. and everything looked great. Go figure. Well, we did give her all of heart medications at 8:00 am like usual, and Dr. Singh said that the meds could have a pretty dramatic affect on how she is feeling. He will keep her here overnight so that he can monitor everything closely. It will be interesting to see if this start to change again as her meds wear off throughout the day. Abby was definitely not feeling well this morning and we did the right thing by bringing her in, but it is yucky to be back here so soon. Hopefully this time will be very short!
I will update again later as we have more information. Please say a little prayer for Abby and hopefully we will be able to go home again tomorrow.
Love,
The Ostlies
Mark, Heather, Abby and Clare
Wednesday, May 17, 2006 11:01 PM CDT Abby is home! She and I left the hospital around 10:00 AM this morning. We drove out to Grandma and Grandpa Ostlie's farm to pick up Clare. We were there for lunch and a little play time and then headed home. Mark will be back home on Friday.
The day seemed to go so quickly. The girls napped for the rest of the afternoon, we had some dinner when they woke up, and then ran to Target to fill Abby's prescriptions and get a few groceries. Right now I am very tired, but I wanted to write a short update to let everyone know that we are home. Dr. Singh will keep close tabs on Abby over the next week or so, via updates from us.
I will write a better update tomorrow.
Love, Heather and family
Tuesday, May 16, 2006 2:17 PM CDT Hi everyone!
Abby is feeling SOOOOOOOOO much better now. The medications really did what they were intended to do, and she seems like a different little girl than when we came here last Wednesday. Today Dr. Singh took away her other IV medication, her oxygen, and her pulse oximeter. Everything is looking great. She is still wearing the telemetry patches that measure her heart rhythm, but that is all. She has been out of room most of today, walking, running (well her version), playing Wizard of Oz, riding on the nurses chairs up and down the hall, and basically just having a good old time. She is ready to go home. Dr. Singh said that if she has an uneventful night that we can go home tomorrow morning. AWESOME!
Also, overnight her O2 levels actually hit 100 percent a few times. WOW! Her color is great, nice and pink. And her spirit is back. The “Abby spirit” is what I have been waiting to see again. She got her spunk back and her excitement for life is just gushing out of her. It is so hard to see her feeling sick and so down. This is much better.
Mark is in Orlando for a work conference this week, Clare is at Grandma and Grandpa Ostlie’s farm, and Abby and I are here at the hospital. We can’t wait until Friday when all of us are under one roof again. It will be great.
I will be sure to post some new pictures of both Abby and Clare when we are home and settled back in to our routine.
Thank you again for all the prayers and support.
Love to you all,
Heather and family
P.S. Happy 29th birthday to my best friend Marcia! I hope that you are having a wonderful day. I miss you.
Monday, May 15, 2006 9:45 AM CDT Good Monday morning everyone,
Abby had a pretty good weekend. Her heart continues to respond to the medications, which is wonderful. The only hard part of the weekend was that she had to have a new IV started. This was very traumatic, because they had to try 4 times before they finally got a line correctly positioned in her vein. It took about two hours and she cried most of the time. Yuck! Then the line that they did get in seems to be very positional (which means that sometimes it stops working depending on how she moves her arm). So, Saturday night she didn’t get much sleep because the alarms on her IVs would go off about every 30 minutes and then we would have to reposition her arm to make it work. Of course, she thought that we were going to do something that hurt, so she would cry every time a nurse came in. Yesterday we got her arm secured on a large board that holds her whole arm still, which makes it so the IV does not move around. This seems to be working much better and she slept great last night. She only woke when they came in her room to check vitals.
Dr. Singh came by this morning and said that she is looking good. Her liver seems to be a little full still, but he did not seem overly concerned about it. He stopped one of the IV meds, and will plan to stop the other IV med tomorrow if everything looks good after today. Dr. Singh plans to see Abby again later this afternoon. He said that probably we will be able to go home on Wednesday morning, but if he feels it is necessary he will keep her until Thursday just to monitor her closely as she is off the IV medications. When we do go home we will have a few more oral medications to take, but Abby is doing great with taking them and I am just relieved that she is feeling so much better. Singh also reduced her Lasix (diaeretic) to only once a day now.
Abby is ready to go home. She misses Clare very much. Sometimes she gets real emotional and just starts crying and saying that she wants to go home. It is hard to keep telling her “just a few more days”, because I think that time is a hard concept for her.
She did get to take a bath yesterday, which she loves. She would have stayed in the tub most of the night if we would have let her. Just like for any of us, it must feel great to her to just get out of the bed and soak in the warm water.
Her favorite things to eat right now are Cheetos, sausage patties, Reese’s peanut butter cups, and buttered curly noodles. Not exactly a balanced diet, but Dr. Singh said that we should just give her what she wants...no restrictions.
Thank you all for your prayers. Everything seems to be moving in the right direction for Abby now, and hopefully we will be home by mid week.
Love, Heather and family
Friday, May 12, 2006 2:14 PM CDT We have good news! We just spoke with Dr. Singh about Abby’s echocardiogram that she had this morning and he is seeing improvement! Dr. Singh is very happy with the results. He said that her heart is now pumping about 20-25 percent volume, which is actually more of an improvement than he expected to see. Also, it is important to know that a child with HLHS will only pump at 40-45 percent when they are at full capacity. So right now Abby is about half way to full capacity. The medications are doing exactly what Dr. Singh wants and they are helping her heart muscle to get stronger. He thinks that with a few more days on the medications, here at the hospital, she will be able to go home. Then we will be able to manage with some oral medications that will continue to help her heart pump harder and lower her blood pressure. Dr. Singh said that this is exactly what he was hoping for and he is pleased with the results he saw today.
Thank you GOD!
So, the game plan is that Abby will spend the rest of today, Saturday and Sunday getting the same intravenous medications along with her oral medications. Then on Monday, Dr. Singh will stop one of the intravenous meds and carefully watch the response her heart has. If that goes well he will stop the other intravenous med on Tuesday and again watch the result carefully. He said that if everything goes well with stopping the intravenous meds that he would send us home on Tuesday afternoon or Wednesday morning.
Also, Dr. Singh said that Abby’s liver is soft again, which means that her body is not retaining fluid and things are processing much more efficiently. This is also great. Right now he wants Abby to drink milk or juice (things that have calories) and not much water, because this will help to not need so much of the diaeretic. Maybe Abby will become a milk drinker after all! Right now she is having a root beer float. She was skeptical at first, but I think she likes it.
So, overall Dr. Singh feels that we caught things just in time before her heart became so weak that it could not be reversed. He is happy with the improvement he sees over the past few days (due to the medications). We will be here through the weekend and then if everything goes well with stopping the intravenous meds we should be back home by the middle of next week.
Thank you all for your prayers and love. We are amazed by the amount of support that we receive from our family, friends and even complete strangers. We could not survive these trying times without the support that we receive.
God bless you all!
Please continue to pray that Abby’s heart strengthens and that she can successfully stop the intravenous meds after the weekend.
We will update more tomorrow.
Love, The Ostlies
P.S. Thank you so much to the people from General Mills Information Systems (Mark’s co-workers) for the beautiful balloon bouquet and teddy bear! Abby loves the balloons so much. They put an instant smile on her face.
Thursday, May 11, 2006 10:36 AM CDT Hello to everyone and thank you all for your immediate prayers for Abby and our family.
Abby did not have a great night. She hardly slept at all. I think that she was really nervous that someone was going to come in and do something to her. Yesterday morning before we came to the hospital she asked Mark, "are the doctors going to give me another scar?" So you know that the memories are fresh in her mind. All night long she kept telling me that she wants to go home, that it is not fun at the hospital, and that she just wants to sleep in her own bed. It is completely heartbreaking.
Dr. Singh came by to see her this morning and he decided to give her yet another medication. He said that this one is to help with "heart failure". It will help her heart pump harder and will also hopefully reduce her heart rate. It is easy to see the concern on his face. Tomorrow morning they will do another echocardiogram and look to see if there has been any improvement.
Dr. Singh was telling me yesterday that a normal heart (with two ventricles) would pump at 100 percent. He would not expect a child with only a single ventricle to pump at 100 percent, but he said that Abby is only pumping at about 10-15 percent. I asked him what happens if it gets worse, and he said that there is not another surgery that they could do, so we would be looking at putting Abby on a transplant list. Wow is this a lot of information to deal with. Please pray so hard that these medications will help her heart function improve and help her heart muscle get stronger.
Mark and I are both trying to stay calm, but we are very scared. Abby is confused and says that "it is just hard to understand". It is very difficult for all of us. Abby also misses Clare so much. She wants to know what Clare is doing and who is watching over her. Sometimes Abby acts like she doesn't like her sister very much, but when they are separated it is so apparent how much love they share.
So now we just wait and see if the medications help. Pray for an improved echocardiogram tomorrow morning.
If there are any changes I will try to update the website again later today, otherwise I will update tomorrow morning after her echo.
Love to you all and thank you for your prayers.
The Ostlies
Wednesday, May 10, 2006 11:45 AM CDT Hello everyone ~
We have some bad news. Abby has been re-admitted to the hospital. Over the past few weeks she has not been feeling very well and we have been in several times to see her cardiologist, Dr. Singh. He thought that maybe some of the medications were making her feel sick, but even when he changed the doses she didn’t seem to feel much better. Then over the past weekend she really wasn’t feeling well. She complained all the time about having a stomach ache and a back ache. So, we spoke with Dr. Singh on the phone Monday and then he decided he wanted to see us on Tuesday morning. We went in on Tuesday morning and her heart rate was still elevated and her liver was enlarged (causing the aches). Dr. Singh decided to do an echocardiogram (ultrasound on her heart). The ultrasound showed that her heart is functioning very poorly. Dr. Singh said that it looked “concerning”. He sent us home after that with two new medications to take, but then later in the afternoon called me and said that he wanted to admit Abby to the hospital. He said that her heart function was concerning enough that he felt she should be at the hospital where she can get some stronger drugs intravenously. So, we made a plan to bring her in this morning.
We arrived at the hospital around 9:00 AM this morning. I read Abby’s chart and Dr. Singh wrote in the chart that the reason for admittance is “severe ventricular dysfunction”. This means that her heart is just not pumping like it should. Obviously, this is not good. They need her to be here so that she does not get into serious heart trouble.
So, this morning they started an IV, put her on the pulse oximeter, and hooked up the other monitors on her chest. She is trying to be a good girl, but none of this is fun. Now they have everything in place, so we can just relax and let the medications do their job. We are not sure how long we will be at the hospital, but Dr. Singh said for sure 4-7 days.
Please pray for our sweet little Abby. She needs a lot of prayers right now.
We will update more later as we have additional information.
Love, The Ostlies
Heather, Mark, Abby and Clare
Thursday, April 13, 2006 2:07 PM CDT Hi everyone,
Sorry that it has been a while since we updated the website. I guess that life is just keeping us really busy. Things are starting to get back to normal around the Ostlie household and hopefully Abby will be back to 100 percent herself within the next few weeks. We know that it is just going to take some time for her to feel "normal" again.
Anyway, Abby had an appointment with Dr. Singh last Wednesday and everything went really well. She cried when they took her blood to check the coumadin level, but that was to be expected. She was actually happy to see Dr. Singh and just wanted to make sure that he gave her some M&Ms. Abby's X-ray looked fantastic. Her coumadin level and her potassium were a little low. Dr. Singh increased the coumadin level, but said that she didn't have to take potassium, because he also lowered the amount of lasiks (diaretic) that she is taking, so this should help her body maintain more potassium. He said that she is healing very well and that everything sounded very good. We will go back to see him again next week. Overall, Dr. Singh is extremely pleased with her post-op recovery.
On other news, Clare turned one on April 10th. We had a birthday party for her on Sunday the 9th. It was very fun. She loved her cake and had a great time seeing all of her new presents. It is amazing to us how fast the past year has gone. It seems like just yesterday that Clare was born. Then today we had her one year well baby doctor's appointment. Everything looked really good. She is 80th percentile for weight and 97+ percentile for height. Such a big girl!
Well, I have put some new pictures on the website for everyone to enjoy.
We hope that you all have a blessed and happy Easter.
Love, The Ostlies
Mark, Heather, Abby and Clare
Wednesday, March 29, 2006 1:29 PM CST Hello all,
Abby's appointment yesterday went great! She did wonderfully. Her O2 level was at 97 percent and her X-ray looked clean as a whistle. Dr. Singh even said that we can stop giving her the potassium, which is the medicine that she hates to take so much. We will go back to see him again next Wednesday, and then she will have to have her blood taken to check the cumidin level. That will be hard, but she will get through it. So that was fantastic news.
On the other hand, giving Abby her medicine is proving to be a real challenge. She has always been such a good girl about taking her medicine. All that has changed. She refuses to take the medicine and will either spit it back out at us or leave it on her tongue until she just throws up. This is not fun for anyone. It really makes me upset as her mom, because I want her to just be a good girl and take it (especially now that we got rid of the yucky one) and I don't want to have to hold her down and force it in her mouth (which doesn't work anyway). We have tried giving the meds in frosting or ice cream, but she refuses them all. Hopefully as we get further away from the hospital stay she will start being better about this. Unfortunately, it is very hard to ration with a 2 year old.
Other than the medicine business everything here is going well. We have all made a full recovery from the flu and are feeling much better. We will continue to enjoy this time at home as a family. I am so thankful that Mark is home to help right now, because Abby is very needy and cries about a lot of stuff. This can be draining as the mom who is always needed. I need him here for balance (even though I sometimes end up taking out my frustrations on him, which I know is not fair). Life moves on. We will do our best to make Abby better and get things back to "normal" around here.
Thanks for the continuous support and love.
Heather and family
Monday, March 27, 2006 4:53 PM CST Hello friends and family,
Well we have been at home for 4 full days and things are going pretty well. Unfortunately, Abby came down with some sort of 24 hour flu on Saturday night (we have no idea how she got it). But, she was throwing up and really feeling under the weather. Sunday she felt a little bit better, and then she slept for 13 hours on Sunday night, so she feels much better today. However, during the night last night Mark and I both got whatever she had. So we were miserable. It is hard to take care of babies when you are feeling so bad. Then Roger and Elaine (Mark's parents) came to the rescue (again) and took both girls out to their farm for the day so that Mark and I could get some needed sleep and recover from this bug. We are feeling quite a bit better now, but still not 100 percent. We are going to get in the car now and head out to the Ostlie farm to pick up the girls. We scoured every inch of the bathrooms and kitchen to get rid of all the germs. Hopefully, we will all be feeling better by tomorrow morning.
On Tuesday morning (tomorrow) Abby has her first follow up visit with Dr. Singh. We are curious to see how the fluid is doing and we hope there won't be any on the X-ray. We are also interested in learning what her Cumidin level is because she has been a real pistol about taking her medicine. She wasn't feeling good, plus she just doesn't want anyone to give her anything right now. We try our best to disguise the taste and appearance, but our smart little Abby knows it's there and puts up quite a fight (even when we are offering her a spoonful of frosting).
Otherwise, things are going well here. Abby sleeps much better in her own bed.
The other thing that has been interesting to us is that Abby is very concerned about the appearance of her scar and the steri strips that are still on there. She doesn’t want anyone to lift her shirt to look at it and when she sees herself in a mirror she cries. This is heartbreaking. We keep assuring her that it will go away and she won't have to wear the band aids forever, but this is hard for a 2 year old to understand. Also, she asked me the other night if she was going to be able to walk again. She is doing some walking, but her legs are still pretty weak so it is difficult. These are tough questions to answer as parents.
Well, we will update again after Abby's appointment tomorrow.
Love, The Ostlies
Thursday, March 23, 2006 11:12 PM CST WE ARE HOME!
We left the hospital this morning and got home in time for a nice morning nap. Then in the early afternoon Clare joined us after spending time at her Grandma and Grandpa's farm. We spent the afternoon and evening just having fun together and enjoying being at home. The girls are now tucked snuggly in their own beds and we are about to do the same. It is so wonderful to know that we will all be under the same roof tonight.
There's no place like home.
Thank God for miracles.
Love, The Ostlies
Wednesday, March 22, 2006 8:59 AM CST Good morning everyone,
Well today we have been in the hospital exactly 2 weeks, and tomorrow WE ARE GOING HOME!!!!!
Dr. Singh stopped by this morning and said that if everything still looks good on Abby's X-Ray tomorrow morning and nothing is out of balance with her medication levels when they draw blood tomorrow morning that she can go HOME! Yeah!
We are so excited. Abby still has a lot of recovery to do. She is very sore and stiff and needs to rebuild her muscles so that she can walk and run, but all of this will be easier if we are at HOME! She will be able to sleep better (can't we all) in her own bed. She will be able to play with her own toys. She will be able to see her sister. Life is good.
Abby is definitely beating the odds with this surgery. They told us to expect to be in the hospital at least 3 weeks and here we are bringing Abby home after just 15 days. She is the most amazing, strong, determined girl.
Thank you all for following us on this journey with Abby. Thank you for your prayers. Thank you for the generous gifts of food and special things for Abby. Thank you for all the love you have given our family.
Please pray tonight that Abby has a good X-Ray and labs in the morning. Finally, continue to follow Abby's progress in the next few weeks as she continues her recovery at home. We will keep the website updated often.
I hope to add a picture of Abby walking out of the hospital tomorrow morning.
Thank God for this amazing recovery!
Love, The Ostlies
Tuesday, March 21, 2006 2:08 PM CST Just a quick update.
Abby got her chest tube out a few hours ago.
Abby just walked for the first time since surgery (with assistance). She walked out of her room and into the hallway where she got into her wagon. She is sitting by me in the wagon right now as I update her website. She had pizza for lunch and is really feeling pretty good.
Yeah for Abby, should be just a few more days until home.
I will update more later.
Love to all.
Monday, March 20, 2006 7:17 PM CST Ok, Ok, I know that it has been nearly two days since I last updated the website, but things have just been kind of busy here. Good busy. Abby is much more alert and awake, which means that she NEEEEEDS us at her side all the time. So, it is hard to slip away and update the website. Especially if it is only one of us here with her.
Anyway, Abby has had a good past couple of days. She is eating again now and really seems to have her appetite back. On Sunday morning at 7:00 AM she requested stroganoff for breakfast. So, Mark called me at home (because I spent Saturday night with Clare) and put in the request for homemade stroganoff. I of course made a big batch and brought it down to the hospital. It was just the thing that Abby wanted and she has eaten it for a lot of meals. She has also been eating fruit, some veggies, pizza, chicken, and drinking lots and lots of water and juice. Plus, she pooped for the first time today (sorry if that is too much information for some of you, but that is a big accomplishment around here).
Abby took a wagon ride yesterday and again today. Plus today she was cleared by Dr. Singh to tour any floor of the hospital in the wagon. So, I took her all around and we looked at lots of different stuff. This was very entertaining for a while. We even went into the PICU and I asked Abby if she remembered being there and she said "no". I guess this is a very good thing.
Other things from today...Abby colored a little bit and also played with play dough. These activities didn't last too long, but it was good to see her engaging in things that she normally loves so much at home. I hope that with each passing day it gets better and better for her and she starts gaining her strength back. Tomorrow we will try to get her up on her feet for a little while. That will be interesting, because she hasn't walked in 13 days.
So, now we are basically just waiting for the chest tube to completely stop draining. Once it does then the doctors can take it out. Then they say that it should be just a day or two more before we will be able to go home. We are not trying to get our hopes up too much, but maybe we could even be coming home by this next weekend if everything goes well. Keep your fingers crossed.
Well, I suppose that I should get back up there to her room. She was napping when I came down to update the website, but by now she may be awake.
Hopefully tomorrow I will do a better job of updating things earlier.
Love, Heather and family
Saturday, March 18, 2006 4:55 PM CST Hi everyone,
Abby had a good and restful night. She did have some morphine to aid in sleeping well and not being uncomfortable, but this was recommended by her cardiologist, so we are not too worried about the extra pain medication.
She woke up this morning and asked for some pretzels. She did eat one, and then fell asleep eating the second one. She was pretty tired from having such a big day yesterday. Then when she woke up again she did eat some breakfast. Half a sausage patty and some hash browns. All last night and today she had also been drinking really well. I think she had four small apple juice boxes during the night last night, plus water. Just a very thirsty girl.
Clare got to come to the hospital today to visit Abby. Clare was really excited to see Abby and Abby was also glad to see Clare. Abby smiled at her. It was the first time I have seen her smile since before surgery. That was a great moment. Clare was totally ready to play with Abby, she wanted to sit on the bed with her and basically crawl on top of her. Abby was not too thrilled by these ideas. So, Clare didn't spend a lot of time in Abby's room, but it was good for them to see each other.
Then I brought Clare home and I will be spending the night with her at home while Mark is at the hospital with Abby tonight. I was really missing Clare, so this is just what I needed. Abby seemed to be ok with the idea also, as long as she knows mama will be back in the morning. Mark was going to try and take Abby for a wagon ride tonight. It would be nice for her to get out of her room and just have a change of scenery.
I hope that you are all having a good weekend.
Happy Birthday to Alex Lund (Abby's heart buddy) who turns 3 years old today!
Love, The Ostlies
Friday, March 17, 2006 2:52 PM CST Well it has been quite a day for our little Abby here at the hospital. She had kind of a rough night, she was pretty miserable. She wouldn't take very deep breaths and her saturations were not great. They did another X-ray this morning at about 7:00 AM and the fluid in her right lung plural space had increased again overnight. So, they decided that it was going to be necessary to put a chest tube in the right side.
So, because they were going to do a procedure where she would need sedation, she was not able to eat or drink anything all day. This is so hard for her to understand, because for the past 48 hours we have been pushing her so hard to eat and drink. Now she was asking for drinks and food and we couldn't let her have anything. This was so hard. She cried a lot today.
They just put the chest tube in about 10 minutes ago, and it drained 400 ccs or 1/2 liter of fluid off the right side. This is a LOT of fluid for such a little body. It is no wonder that she couldn't take a deep breath, that she was so uncomfortable, and that she didn't want to eat or drink anything. Hopefully, this will make her feel much better and will help her O2 levels stay in the mid-high 90's. It is sad that she had to have another chest tube put in, but it really was the best thing for her to help get better faster and get home.
They had to conduct the chest tube procedure in the PICU, but she will get to go back up to 3rd floor after she wakes back up and is stable. Third floor is very nice, and it is so great that we can sleep right there in her room with her. I think that it makes her feel more comfortable and it is much quieter on 3rd floor, which is a better environment for resting and recovering.
Well, I am going to get back down to the PICU so that I am there when she wakes up.
Many thanks again for all the prayers and love.
The Ostlies
Thursday, March 16, 2006 5:29 PM CST Hi everyone,
I am sure that many of you are wondering what happened to us today. Well, Abby got moved up the 3rd floor, so we were busy moving this morning and just getting settled in. Then this afternoon Mark had to run out to an eye appointment, so it was just Abby and me. That is why I didn't have a chance until now to get down to the Family Resource Center and update the site. Third floor is awesome. It is very quite (compared to what 7th floor used to be like) and Abby has a private room with a place for Mark and I to sleep right in the room. It will make the rest of our stay at the hospital more pleasant.
Abby had a kind of rough morning. Her X-ray showed that the Plural Effusion on the right side (fluid on her lung) had actually gotten a little bit worse overnight. However, the docs didn't think that it was bad enough that they needed to do anything. They will keep taking X-rays each morning just to check on it, and if it doesn't start to clear up after a few more days then they may have to rethink if they need to do anything. So, please pray that the fluid starts to re-absorb on its own and that she doesn’t have to get a chest tube or anything.
Abby had really been doing a good job of starting to try and eat. She was helping herself to Cheerios last night and drinking lots of juice. This morning she even took a few bites of a breakfast tri-tator. However, then they came in with two syringes full of Potassium for her to take. I am sure that none of you have ever had to take Potassium but let me tell you it is awful. So, I tried to give her a little bit orally, and she gagged and threw up everything that we had gotten her to eat during the morning. This was so frustrating. It upset me that they expect a two year old to gag this stuff down, when frankly us adults would just refuse to take it. Yuck. Well, apparently there is a crushed up form of Potassium that we can mix in with pudding or applesauce and we will have to try that the next time. So, I had to try and wash her hair and change her clothes because she had thrown up on everything. Washing her hair was challenging, but we got the job done. Then I took a shower to get the puke off of me. Then we made it up to third floor and they needed her to take her Tylenol (which normally is no big deal), but she started crying before they could even show it to her, and then she threw up again. It was just sad.
For most of the afternoon she just slept and rested on my lap or in bed and watched a little bit of a Dora movie. I kept asking her if she wanted to eat something. I would suggest anything I could think of. She didn't want anything. Then finally at about 4:30 I asked if she wanted some pretzels...bingo! She said that they sounded good and actually ate about 4 of them on her own. She also drank some apple juice and some Sprite. Now we have ordered her some things for dinner, so hopefully she will be able to get something down. I look forward to when her appetite will come back. I know that this will happen as she starts feeling better.
Well, we hope that you all had a good day. We will update again tomorrow and I will try to do it earlier in the day.
Love, Heather and family
Wednesday, March 15, 2006 5:26 PM CST Hi everyone,
I am updating the site now, so that we have one more update in before the Family Resource Center closes for the evening (thanks Judi for reminding me that we should do this, otherwise everyone worries that something is wrong). Abby is much more alert today. She spent a lot of the afternoon sitting, resting, and sleeping on my lap and Mark's lap. This is a nice feeling. She is trying her best to eat little bits of food, but we can tell that she just doesn't have much of an appetite yet. The nurses assure us that this will get better as she starts feeling better (but if any of my heart mom friends have advice on this subject I would love to hear it). Normally Abby is a really good eater at home, so this is not the norm for us, which then makes me worry. I know that her appetite will probably come back slowly and I just need to be patient.
It sounds like they will move us to the 3rd floor tomorrow at some point. Dr. Singh and Dr. Overman would like to get one more chest X-ray in the morning before she goes upstairs. Also, they are trying to figure out the Cumidin (sp?) level that she needs. Yesterday it seems that they gave her too much, so today they didn't give her any. They will try to get this figured out over the next few days.
Otherwise, things are going well. Abby's arm is super stinky from the IV, tape, board, and more tape that were on it for the past week. So, we have been giving that arm frequent baths today to try to reduce the yucky smell. It will go away with time, but I am sure that she doesn't want to smell something yucky when she already isn't feeling great. This is just part of the hospital event.
Mark F. - you asked if Abby has any favorite songs or storybook characters. Right now she loves the movie "The Wizard of Oz" so she likes all the songs from that movie. The scarecrow is her favorite character in the movie. She also really likes the Disney Princesses. Cinderella is her favorite. You should hear her sing "A Dream Is A Wish", she is so cute. It will be nice when she has some of her singing spunk back. Otherwise her other favorite are Dora and Pooh. She is watching the Pooh Heffalump movie as I am typing (thanks Lauren for lending it to Abby).
Well, that is a pretty good update for tonight. Mark and I are both staying here tonight as we are supposed to get several more inches of snow. Clare is at Grandma and Grandpa Ostlie's farm for the next couple of nights. We miss her very much, but we know that she is in the greatest caring hands. Right now Abby needs us to help her recover and stay positive, so we are just where we are needed most.
Thanks again for all the prayers and hopeful messages.
Love, The Ostlies
Wednesday, March 15, 2006 12:45 AM CST God Bless All of You. We cannot thank you often enough.
Abby is free of most of the various lines that have been invaded her body for the last week. Although she's a bit uncomfortable, she's looking more and more like our sweet little girl every day.
Yesterday she started eating yogurt, applesauce and soup; today she's advanced to Cheerios. She is sitting up coughing and talking softly. The coughing is important to help reduce the fluid that is still in the right side of her chest. She'll remain in the PICU today in hopes that this fluid will diminish as she's prompted to cough. She's not bothered by the persistent prompting to cough the junk out:
"Abby can you give us a cough?"
"No"
"How about a big breath?"
"No"
"Can you try to blow a bubble?" (a trick to take a big breath)
"No"
"Can you blow in this fun-looking tube?" (another trick)
"No"
She's completely unaffected by these and other questions and just continues her mantra ("No"). You have to admire her patience with us and strong will.
Again, God Bless
- The Ostlies
Tuesday, March 14, 2006 10:33 AM CST Good morning everyone,
Abby had a fairly peaceful night. They took an X-ray at around 5:30 AM this morning, and it showed that she actually has a bit more fluid on her right lung than yesterday. They are not overly concerned yet, but they would like us to have her up a bit more today and getting out some really good coughs to clear her lungs. They will take another X-ray at around 3:00 PM and then they may decide to put in a chest tube on the right side if the fluid looks like it is not improving. Dr. Overman said that he might also consider just using a needle and sucking the fluid out. He will make a decision after seeing the X-ray this afternoon. He will also be removing the chest tube on her left side sometime after he gets out of the OR this morning. This is good, because Abby says that it is uncomfortable. Otherwise things are looking really good. So, please pray that she is able to cough a lot today and get that fluid out.
I did give her another bath this morning (at her request) and she really enjoyed that. I think it just feels really good after she is lying for so long. She also has been approved to have some "soft" foods, so she did have several spoonfuls of lemon sorbet this morning. I think it was just "ok" but not great. She would probably be happier if they offered her stroganoff.
She is very weak and seems to be sleepy today. She is resting now, and when she wakes up we will try to get her out of the bed for a while, maybe sitting on my lap or even in the big lounge chair. Whatever she wants.
I hope that you all weathered the snow yesterday. It was pretty quiet here at the hospital, which was nice because Abby had a big day with getting the breathing tube out and all.
We will update again later.
Love, Heather and family
P.S. I just put some new pictures in the photo album.
Monday, March 13, 2006 5:50 PM CST Hi everyone,
Abby is really doing wonderfully. She is very thirsty and Dr. Singh approved ice chips and popsicles. They don't want her to get a tummy ache and then throw up, so we just have to go very slow with the food. Maybe tomorrow she will be able to have a little bit more. She enjoyed the popsicles, although she wanted another one as soon as she finished one. Oh, I almost forgot, she did get to have two bites of chocolate ice cream, but it was mainly to get her to take the cumidin (sp?) that she needs as a blood thinner. I guess it was a good bribe.
She has been moved out of "the bay" in the PICU; which is the area for the most critical patients and into a more private and quiet room. Hopefully, this will help her to get some better rest tonight. Dr. Singh told us to plan on spending 1-2 more days in the PICU and then if everything continues to look good and her numbers stay where they should she could move to 3rd floor during the middle of the week. Third floor is more of a recovery floor instead of intensive care.
I wanted to note that even though Abby is doing really well right now she still has a long way to go. This is the most difficult of the three heart surgeries to recover from and it does take the body a while to really fully adjust to the dramatic changes. We may have several more weeks at the hospital before going home. We are very hopeful that things will continue going smoothly and we will be home as soon as possible, but we have to also prepare ourselves that there may be bumps in the road ahead and we can't get too discouraged. We just have to do our best to help Abby recover in the time that she needs. She is the star of the show and we are just the back up singers. She gets to call the shots. When her body is ready we will move forward.
A big thank you to Jennifer, Anthony (Antafey as Abby's calls him), Lauren and Reed Gizinski for the wonderful goodie basket that you sent to our family at the hospital. Mark is definitely enjoying the trail mix and I already read some of the Dora book to Abby. That was so thoughtful of you. The beautiful picture that Lauren colored is on the wall of Abby’s hospital room.
Well, we will have another update tomorrow morning and will let you know how Abby's night goes.
Thank you all again for checking the website faithfully and for keeping our family and especially Abby in your prayers.
God Bless. The Ostlies
Monday, March 13, 2006 1:39 PM CST Update as of 1:30 PM:
The breathing tube is out, along with two of the chest tubes and the catheter. Abby is doing great! Taking the breathing tube out went really smooth. Abby had lots of coughs as first, which is to be expected, and actually this helps clear her lungs. She has been asking for lots of drinks of water and orange juice. We have been able to give her some sponges to suck on, and after maybe another hour or so she can have a Popsicle. I gave her a sponge bath (at her request) and this really felt good. Then she got some more coughs out and now she is sleeping peacefully. She looks more comfortable than we have seen her in many days. All of her numbers are remaining stable and good. The doctors are pleased and we are ecstatic. We hope you are all having a good day like we are. We will update again later, and I will take some pictures of Abby to put on the site.
Update as of this morning:
Let it snow, let it snow, let it snow.
I hope that all of you are having safe travels on your way to work. Abby had a wonderful weekend, and they are planning to take the breathing tube out this morning!!!!
We are so excited. We know that she will be very hoarse and her throat will be soar, but she will be able to talk to us and we will be able to hold her! YEAH!!!!
This is a major turning point. We know that she still has a lot of recovery to do, but hopefully we have made it past the major bumps in the road and we can continue with a slow and steady recovery.
We are waiting for Dr. Overman (her surgeon) to come and look at Abby and decide if he wants to take any of the chest tubes out before they remove the breathing tube. Then they will go ahead and let her wake up and then pull out the breathing tube when she is awake enough to breath on her own.
We would like to say a huge thank you to her nurses that took such great care of her this weekend. They are absolutely amazing here.
Also, thank you to Mrs. Gruhn's 5th grade class at Rosemount Elementary School for the wonderful cards that you made for Abby. We know that she will love them so much when she is awake and can read them all. I don't know if you kids will be in school today, but we want you to know how much your kind thoughts are appreciated.
We will update again after they take out the breathing tube and we get some hugs from our little Abby girl.
What a good day! Love, The Ostlies
Monday, March 13, 2006 8:15 AM CST Let it snow, let it snow, let it snow.
I hope that all of you are having safe travels on your way to work. Abby had a wonderful weekend, and they are planning to take the breathing tube out this morning!!!!
We are so excited. We know that she will be very hoarse and her throat will be soar, but she will be able to talk to us and we will be able to hold her! YEAH!!!!
This is a major turning point. We know that she still has a lot of recovery to do, but hopefully we have made it past the major bumps in the road and we can continue with a slow and steady recovery.
We are waiting for Dr. Overman (her surgeon) to come and look at Abby and decide if he wants to take any of the chest tubes out before they remove the breathing tube. Then they will go ahead and let her wake up and then pull out the breathing tube when she is awake enough to breath on her own.
We would like to say a huge thank you to her nurses that took such great care of her this weekend. They are absolutely amazing here.
Also, thank you to Mrs. Gruhn's 5th grade class at Rosemount Elementary School for the wonderful cards that you made for Abby. We know that she will love them so much when she is awake and can read them all. I don't know if you kids will be in school today, but we want you to know how much your kind thoughts are appreciated.
We will update again after they take out the breathing tube and we get some hugs from our little Abby girl.
What a good day! Love, The Ostlies
Sunday, March 12, 2006 12:50 AM CST Good afternoon everyone,
Abby had a peaceful night and she continued to pee off much of her excess fluid. She weighed just slightly more today than when she was admitted to the hospital. She still has a little bit of fluid on her right lung, but the doctors expect that it will be absorbed back into her tissue and then she will also pee it out. Her stats have looked good all night.
This morning Mark and I got to give her a sponge bath, and she was awake. She seemed to enjoy it and it must have felt good just to have us rubbing on her legs and arms and face. She was asking for drinks of water (as usual) and we were at least able to swab out her mouth with a little sponge and she would suck the water out of the sponge. They still want her to rest today, so they have been giving her sedatives and muscle relaxer to keep her quiet.
The doctors have ordered that her Nitric Oxide and Fentenyl be reduced over the next 24-36 hours in anticipation of getting the breathing tube out. Of course, they won't give us any definite time frame, but they are thinking tomorrow afternoon or maybe Tuesday morning. We know that it is getting closer, and this is very exciting.
I am planning to go and get Clare tonight and sleep at home with her (because I miss her so much) and then be ready to come back in the morning to hear what the doctors have to say and find out if they plan to take the breathing tube out.
Thank you everyone for your encouraging words and continuous prayers.
We will update again later if we hear anything new or anything changes.
Love, The Ostlies
Saturday, March 11, 2006 10:53 AM CST Abby had a pretty good night.
Overnight she turned an important corner in reducing her swelling by generating more output (pee and chest drainage) than input. We can visually see that she is less swollen. Her right lung still has some fluid, but the Docs are hoping this will reduce without a chest tube now that she's getting rid of some fluid. She's expected to simply rest and continue healing today. No pressure to get her breathing on her own for at least another day or so. Tomorrow Dr. Moga will likely remove the chest tubes from surgery (leaving her with only one).
We all had a fairly restful night. Abby's primary nurse from previous visits (Chris B.) watched her. We appreciated getting to catch up on his family adventures. Abby was up early and wanted her nose itched and to be held, but, of course, we could only itch.
Heather was able to rest away from the hospital and visit with Clare this morning. Clare has an energy that will help to recharge anyone.
We cannot thank you enough for all of the prayers and support. We probably don't even have a good grasp on the number of people that are keeping Abby and our family in their thoughts and prayers.
God bless you all!
Love,
The Ostlies
Friday, March 10, 2006 6:48 PM CST Things are going much better.
They put the chest tube in on Abby's left side and it instantly drained 2.5 ounces of fluid off her lung and also a bunch of air. Then her oxygen level immediately went up to 95 percent and has been consistently staying in the mid 90's for the past few hours. Her other stats are also looking very good and she seems to be resting more peacefully (this could be in part to the new drugs). Also, she has really started PEEING! It seems that everything is just related and when things start going well it has a nice trickle down effect. Anyway, we anticipate that she will have a very successful night and that tomorrow will also be a better day. They may take out the chest tubes that drain from near her heart tomorrow, as they are drying up for the most part.
So, we made it through the third day here. It was bumpy but it seems that we are having a better end outcome than start. Please pray for more pee tonight as this will continue to reduce the pressure around her lungs and take the puffiness away from her face and the rest of her body.
We hope that you all have a restful and FUN Friday night. We will try to get some rest here and start the weekend with optimism.
Love to all...we will update again in the morning.
Oh, I also forgot to add that they reduced the level of oxygen that they are giving her to 50 percent and they also began again to wean the Nitric Oxide…two good things that are part of the road to recovery.
P.S. Thanks for the phone call Katie...I love you too!
P.S.S. Thanks for coming to see us today Andrea, it was good to chat.
Friday, March 10, 2006 2:59 PM CST The doctors have decided to put in a chest tube on Abby's left side to release the air that is trapped in her plural space. The X-ray at 2:00 showed that the condition was not improving. Dr. Overman is putting in the chest tube right now and then hopefully that will help her 02 levels come back up (because they had dropped into the high 70's/low 80's).
Before this Abby's blood pressure dropped again today and this was very concerning to doctors. They think that this may have been due to the fact that they started decreasing the Nitric Oxide, so they bumped that level up again. Since they did this Abby's blood pressure came back up and seems to have stabilized.
Her lungs also have some wetness on the right side still, but they are hoping that this may decrease as her left side lung function increases with the chest tube being put in.
There are lots of things going on right now and they are all linked together. It seems like they fix one thing and then something else breaks. I guess that it is just a delicate balance.
We will update again after they get the chest tube in and we see how that affects her O2 level.
Last thing for now, they have switched her sedation to Fentenyl (which is a more potent form of Morphine; another narcotic) and this is a sedation that she can be on more long term if necessary (which we don't like to hear).
All together things are kind of rocky right now. I hope to have a more positive update in a little while.
Friday, March 10, 2006 11:34 AM CST Abby's current X-ray shows improvement for the left side. Air has been escaping through her "surgery" chest tubes, since she's been lying on her left side.
So, it looks like they may not have to put a chest tube in on the left side after all. They will do another X-ray at 3:00 PM and see if there is more improvement.
Otherwise, she seems to be doing well and holding steady. She would really like to get out of the bed. Every time the sedative and muscle relaxer wear off she literally tries to sit up and pull herself out of the bed. So, her nurse and Mark and I have to watch her very closely to make sure that she doesn't pull on something she isn't supposed to. They have put some restraints on her wrists so that she can't do anything to hurt herself. It sounds like this is negative, but really it doesn't bother her and it prevents her from grabbing her breathing tube or IVs.
They have told us that she will continue to have the breathing tube today and tonight, but that if things look good tomorrow morning they may consider extibation. In preparation for this, they did reduce the amount of Nitric Oxide that she is receiving; so they are slowly begin to wean some things.
Keep praying that the air continues to filter out through her existing chest tubes.
We hope that you are all having a good day.
Thank you very much to Mary Mitchell for bringing lunch to us today. The pizza is awesome!
Friday, March 10, 2006 8:16 AM CST One step forward, two steps back is how the saying goes and that is how I am feeling this morning.
Another bump in the road. Abby has developed a pneumothorax (which means an air pocket) in the plural space between her lung and her chest wall on her left side. This air pocket developed because air was leaking out of her lung somehow. But, once the air leaks out it is just like a balloon and it can't escape. So, they are most likely going to put another chest tube in on the left side to let the air out. Once all the air is out they can remove the chest tube and then the lung will seal itself off and the problem should be fixed. The other option would be to just insert a needle and drain the air. However, this may not be a permanent solution. I looked at Abby's X-rays this morning with the doctors and her left lung is definitely getting smashed by the air pocket. This in turn is then decreasing her lung capacity and not allowing her body to oxygenate as well.
So, the plan is to continue stripping the two chest tubes that she does have already to see if they can get the air to come through them. Then at 10:00 AM they will take another X-ray to see how things look. Then the surgeon, Dr. Overman, will decide how to proceed. No matter what they decide, Abby will still need to be on the breathing machine at least for today, and many through the weekend.
Also, Abby still has a Pleural Effusion, which means fluid in her lung, on the right side. It is not much worse than yesterday, so they may just leave it for now. But, they are also considering putting in a chest tube on that side as well to drain the fluid.
Abby gained another 500 grams overnight, so she still isn't letting go of fluid like she should. Please continue to prayers for pee. She needs to get rid of this excess fluid so that she can function better.
They are going to start her on another IV this morning that will provide some nutrition, because she is unable to eat or drink right now. I feel so bad about this because when she does wake up she always asks for water. This is hard to see and it is hard to say no that she can't have anything right now.
So, that is the update for now. We need some positive thoughts and many prayers today.
It has been a discouraging morning so far. I don't know how to feel any other way. I just want Abby to be feeling better, get the breathing tube out, and talk to me.
I'll update again after the X-ray at 10:00 AM.
Thursday, March 9, 2006 6:07 PM CST Abby has had a good day.
She spent most of today resting (with the help of some medications) and she has had good stats all day. We hope that she will continue to have a good night. They will decide sometime tonight or tomorrow morning to start weaning her off the Nitric Oxide and this will be a slow process. It is still possible that they would consider taking out her breathing tube tomorrow, however it would probably be late in the day. Or, they will wait until Saturday morning and then take out the breathing tube. We are trying to just be as patient as possible and let Abby and the doctors decide how the timing will work best.
Thank you very much to Cathy Setten and Erin Mitchell for bringing meals to our family today. The food was fabulous and it was nice to not eat hospital food. We appreciate your kindness very much.
Thank you to everyone for your HUGE prayers. Keep 'em coming!
This is probably the last time that I will update tonight. Because Abby is sleeping and they don't plan to do anything tonight, Mark is going to go home and spend the night with Clare. So, I will be by Abby's bedside this evening and then try to get some sleep here.
We will update again tomorrow morning after we see the doctors.
Love, Heather
Thursday, March 9, 2006 10:00 AM CST Update as of 10:00 AM:
I just added two new pictures to the Photo Album.
Update as of 9:00 AM:
We just spoke with Dr. Singh, the cardiologist, and he said that they plan is to keep Abby on the ventilator for at least two more days. This will give her time to heal and for her lungs to start accepting the blood more. He was very discouraged yesterday after surgery when her stats were so low. This morning he is feeling more encouraged and would like to keep Abby at this spot for a while. So, they are developing a plan for sedation so that she won’t want to get up out of bed. They will keep her resting for the next couple of days and then see from there what to do. So we wait. I guess that we do a lot of that around here. Let’s all pray that she can rest and recover and get stronger so that when the time comes to take her off the ventilator she will be ready.
Previous morning update:
Good morning everyone,
Well here is the update from overnight.
From the doctors' perspective she is doing much better. Her blood pressures held steady all night, her O2 levels increased, and her other stats also looked good.
However, she did not have a very restful night. She was awake for much of the night and definitely wanting things to be different. They are giving her some heavy pain medication, like morphine, however her body has developed a tolerance to some of these drugs because of her past surgeries. This morning from 5 AM - 7 AM she was pretty much fully awake, asking us for drinks of water (which she can't have, but we could swab her both with a water soaked sponge), letting us know that she wanted the tubes out of her nose, telling us to itch her nose, and telling us that she didn't like most of the stuff on the ceiling. Of course, we have to lip read all of these messages, because with the breathing tube in she can't actually make sounds with her voice. Finally, around 7:30 AM they gave her some more sedatives and a muscle relaxer, because she was about ready to jump out of the bed and she wanted mama to hold her. Now she is resting.
We are waiting to speak with the cardiologist and the surgeon when they get out of a meeting. Then they will decide if they will try to take her off the breathing machine today or if they want to wait until tomorrow. It is our guess (based on speaking with the nurses) that they will wait until tomorrow. She is still receiving nitric oxide, which helps her lungs to accept the blood, and they need to wean her off of that drug and make sure that her stats stay high. Plus, an initial X-ray showed a bit of fluid in her right lung this morning and they would want that to clear some before they take her breathing tube out. So there are a lot of factors that will play into the decision.
We are happy that she is resting now, because it is hard to see her awake and trying to talk to us without being able to make sounds. Plus, she is still so drugged that things are not making a lot of sense for her right now. We need her to rest, recover and get strong.
So, please keep praying for pee and for things to go well as they wean her off the NO2. We will definitely be updating throughout the day. We may also try to get some new pictures on the site at some point.
Thanks for checking on our sweet little Abby. She is fighter and her determined attitude along with lots of prayers will get her through this, it is just going to be a slow process.
Love to all.
P.S. Please keep writing to us on the journal. We love to hear from you and it keeps us strong. You stories and thoughts are encouraging and it is a good break for us to have a connection with the “real” world.
Thursday, March 9, 2006 9:12 AM CST Update as of 9:00 AM:
We just spoke with Dr. Singh, the cardiologist, and he said that they plan is to keep Abby on the ventilator for at least two more days. This will give her time to heal and for her lungs to start accepting the blood more. He was very discouraged yesterday after surgery when her stats were so low. This morning he is feeling more encouraged and would like to keep Abby at this spot for a while. So, they are developing a plan for sedation so that she won’t want to get up out of bed. They will keep her resting for the next couple of days and then see from there what to do. So we wait. I guess that we do a lot of that around here. Let’s all pray that she can rest and recover and get stronger so that when the time comes to take her off the ventilator she will be ready.
Previous morning update:
Good morning everyone,
Well here is the update from overnight.
From the doctors' perspective she is doing much better. Her blood pressures held steady all night, her O2 levels increased, and her other stats also looked good.
However, she did not have a very restful night. She was awake for much of the night and definitely wanting things to be different. They are giving her some heavy pain medication, like morphine, however her body has developed a tolerance to some of these drugs because of her past surgeries. This morning from 5 AM - 7 AM she was pretty much fully awake, asking us for drinks of water (which she can't have, but we could swab her both with a water soaked sponge), letting us know that she wanted the tubes out of her nose, telling us to itch her nose, and telling us that she didn't like most of the stuff on the ceiling. Of course, we have to lip read all of these messages, because with the breathing tube in she can't actually make sounds with her voice. Finally, around 7:30 AM they gave her some more sedatives and a muscle relaxer, because she was about ready to jump out of the bed and she wanted mama to hold her. Now she is resting.
We are waiting to speak with the cardiologist and the surgeon when they get out of a meeting. Then they will decide if they will try to take her off the breathing machine today or if they want to wait until tomorrow. It is our guess (based on speaking with the nurses) that they will wait until tomorrow. She is still receiving nitric oxide, which helps her lungs to accept the blood, and they need to wean her off of that drug and make sure that her stats stay high. Plus, an initial X-ray showed a bit of fluid in her right lung this morning and they would want that to clear some before they take her breathing tube out. So there are a lot of factors that will play into the decision.
We are happy that she is resting now, because it is hard to see her awake and trying to talk to us without being able to make sounds. Plus, she is still so drugged that things are not making a lot of sense for her right now. We need her to rest, recover and get strong.
So, please keep praying for pee and for things to go well as they wean her off the NO2. We will definitely be updating throughout the day. We may also try to get some new pictures on the site at some point.
Thanks for checking on our sweet little Abby. She is fighter and her determined attitude along with lots of prayers will get her through this, it is just going to be a slow process.
Love to all.
P.S. Please keep writing to us on the journal. We love to hear from you and it keeps us strong. You stories and thoughts are encouraging and it is a good break for us to have a connection with the “real” world.
Thursday, March 9, 2006 8:09 AM CST Good morning everyone,
Well here is the update from overnight.
From the doctors' perspective she is doing much better. Her blood pressures held steady all night, her O2 levels increased, and her other stats also looked good.
However, she did not have a very restful night. She was awake for much of the night and definitely wanting things to be different. They are giving her some heavy pain medication, like morphine, however her body has developed a tolerance to some of these drugs because of her past surgeries. This morning from 5 AM - 7 AM she was pretty much fully awake, asking us for drinks of water (which she can't have, but we could swab her both with a water soaked sponge), letting us know that she wanted the tubes out of her nose, telling us to itch her nose, and telling us that she didn't like most of the stuff on the ceiling. Of course, we have to lip read all of these messages, because with the breathing tube in she can't actually make sounds with her voice. Finally, around 7:30 AM they gave her some more sedatives and a muscle relaxer, because she was about ready to jump out of the bed and she wanted mama to hold her. Now she is resting.
We are waiting to speak with the cardiologist and the surgeon when they get out of a meeting. Then they will decide if they will try to take her off the breathing machine today or if they want to wait until tomorrow. It is our guess (based on speaking with the nurses) that they will wait until tomorrow. She is still receiving nitric oxide, which helps her lungs to accept the blood, and they need to wean her off of that drug and make sure that her stats stay high. Plus, an initial X-ray showed a bit of fluid in her right lung this morning and they would want that to clear some before they take her breathing tube out. So there are a lot of factors that will play into the decision.
We are happy that she is resting now, because it is hard to see her awake and trying to talk to us without being able to make sounds. Plus, she is still so drugged that things are not making a lot of sense for her right now. We need her to rest, recover and get strong.
So, please keep praying for pee and for things to go well as they wean her off the NO2. We will definitely be updating throughout the day. We may also try to get some new pictures on the site at some point.
Thanks for checking on our sweet little Abby. She is fighter and her determined attitude along with lots of prayers will get her through this, it is just going to be a slow process.
Love to all.
P.S. Please keep writing to us on the journal. We love to hear from you and it keeps us strong. You stories and thoughts are encouraging and it is a good break for us to have a connection with the “real” world.
Thursday, March 9, 2006 7:51 AM CST Good morning everyone,
Well here is the update from overnight.
From the doctors' perspective she is doing much better. Her blood pressures held steady all night, her O2 levels increased, and her other stats also looked good.
However, she did not have a very restful night. She was awake for much of the night and definitely wanting things to be different. They are giving her some heavy pain medication, like morphine, however her body has developed a tolerance to some of these drugs because of her past surgeries. This morning from 5 AM - 7 AM she was pretty much fully awake, asking us for drinks of water (which she can't have, but we could swab her both with a water soaked sponge), letting us know that she wanted the tubes out of her nose, telling us to itch her nose, and telling us that she didn't like most of the stuff on the ceiling. Of course, we have to lip read all of these messages, because with the breathing tube in she can't actually make sounds with her voice. Finally, around 7:30 AM they gave her some more sedatives and a muscle relaxer, because she was about ready to jump out of the bed and she wanted mama to hold her. Now she is resting.
We are waiting to speak with the cardiologist and the surgeon when they get out of a meeting. Then they will decide if they will try to take her off the breathing machine today or if they want to wait until tomorrow. It is our guess (based on speaking with the nurses) that they will wait until tomorrow. She is still receiving nitric oxide, which helps her lungs to accept the blood, and they need to wean her off of that drug and make sure that her stats stay high. Plus, an initial X-ray showed a bit of fluid in her right lung this morning and they would want that to clear some before they take her breathing tube out. So there are a lot of factors that will play into the decision.
We are happy that she is resting now, because it is hard to see her awake and trying to talk to us without being able to make sounds. Plus, she is still so drugged that things are not making a lot of sense for her right now. We need her to rest, recover and get strong.
So, please keep praying for pee and for things to go well as they wean her off the NO2. We will definitely be updating throughout the day. We may also try to get some new pictures on the site at some point.
Thanks for checking on our sweet little Abby. She is fighter and her determined attitude along with lots of prayers will get her through this, it is just going to be a slow process.
Love to all.
Wednesday, March 8, 2006 4:21 PM CST Ok, things have kind of taken a bad turn.
We need to:
PRAY FOR PEE
PRAY FOR ABBY'S LUNGS TO ACCEPT THE BLOOD
PRAY FOR A GOOD BLOOD PRESSURE
Abby's lungs are currently showing a lot of resistance to the blood that is trying to enter from the lower half of her body, so this is creating several issues. It is lowering her blood pressure, which in turn does not allow her to pee and therefore gets a lot of fluid back up and can create a toxic state.
We really need some prayers right now. We know that Abby is a fighter, but she needs some help. Please pray.
We will update when we know more.
Wednesday, March 8, 2006 2:51 PM CST Surgery is complete and everthing was successful! Abby's O2 level is currently at 97 percent! WOW! That is the highest we have ever seen it. She has pink toes and pink fingers. Right now her blood pressure is a little low, so they are giving her some fluid to increase the pressure. She is still on the ventilator, but they are discussing the possibility of taking her off the vent this evening sometime. For that to happen her blood pressure would need to be at a higher level. We will just have to wait and see how the numbers look. If they do not take her off the vent tonight, then it would most likely happen tomorrow morning. This is great either way. We know that she will continue to do her part to get better and recover quickly. We are glad to be out of surgery and looking forward to having her off the vent. There is still a LOT of recovery to do, don't let me sound too overly excited, because we know that things are still touchy. However, she has come out of the surgery looking very good and they anticipate that things will go well from here on out.
Thank you to everyone who has been checking on Abby today and for your words of comfort, support, and prayer. We will continue to update the site tonight as we see how she recovers.
Love, The Ostlies
Wednesday, March 8, 2006 12:19 AM CST They are done with the surgical procedure. She did GREAT! Right now they are closing her up and then she will be moved to the PICU. After they get her situated in the PICU we will be able to go and see her. Overall, the surgery went very well. The pressures in her lungs are a bit elevated right now, but this is to be expected. We will meet with the surgeon, Dr. Overman, in a little while and he will give us a more detailed account of how the surgery went. We will update again after we see her.
Praise God!
Wednesday, March 8, 2006 10:16 AM CST Hi everyone,
Abby is in surgery. Her morning went great. We arrived at the hospital around 7:00 AM and she played with Grandma and Grandpa and Oma and Opa in the pre-op area until about 8:00 AM. Then they moved us to a pre-op room and gave her some Versed (sp?) a drug to make her VERY sleepy. She was so funny, because she acted just like a drunk college kid. Everything was very funny to her. This helped us all to keep a sense of humor. Then around 8:30 AM Mark and I took her back to the OR and they gave her some sleepy gas that totally put her out. That was the last time that we saw her before surgery. They called us from the OR at 9:22 AM to let us know that they had begun the operation. Now we wait.
We will update the website again as we learn more information. Keep praying that everything continues so successfully.
Love,
The Ostlies
Tuesday, March 7, 2006 11:24 PM CST Dear Family and Friends,
Well, it is the night before surgery. We had a good and fun night here as a family. The girls had dinner, took their usual bath together, and Abby watched some of her new favorite movie “The Wizard of Oz”. She is so sweet when she tries to sing “Somewhere Over the Rainbow”. (Thank you to Beth Tepfer, Kelly Kriesel, and Sara Nivala for giving Abby the DVD – she loves it!) Right now, Abby is tucked snug in her bed having sweet dreams. Mark and I are up…it might be hard to sleep tonight.
We know that many of you have prayed or are praying tonight for Abby and for our family. We appreciate all of your prayers so much and we know that they do make a difference. We are very optimistic about the outcome of this surgery, because we know that this surgery is what Abby needs to feel better, grow strong, and be closer to 100 ealthy. We know that Abby will do her best to pull through with flying colors. This is the hardest surgery to recover from, however, and we know the road might be bumpy at times. Despite our seeming calmness tonight, before, during and after surgery we will be sad, nervous and missing our chatty sweet loving Abby.
Abby’s day at the hospital today went smoothly, and we have tried to prepare her as best as possible for what will be happening tomorrow. She still doesn’t really understand what will be happening; we are both thankful that she doesn’t fully understand (because she would be scared), but it is sad that she will be taken by surprise by much of what will happen.
For anyone who is interested in the more technical aspect of tomorrow’s surgery, here is a brief explanation. Today the blood returning from the lower half of her body (oxygen poor) goes directly to her heart and mixes with the blood returning from her lungs (oxygen rich) and causes her overall oxygen levels to be lower than normal. Tomorrow, the doctors will route the blood returning to her heart from the lower half of her body directly to the lungs, so that it will get full oxygen before returning to her heart and then being pumped back out to her body.
We will plan on updating this site as much as possible tomorrow. Please check back for updates and keep the prayers coming.
Love to all,
The Ostlies
Thursday, March 2, 2006 9:15 AM CST Well we are officially less than one week away from Abby's 3rd heart surgery (Fontan). We are pretty mixed emotionally. Actually, Mark and I have not really talked about the surgery too much...because it makes both of us so sad. We have trouble even expressing how we feel about taking her in for surgery. We are scared. However, we seem to be managing our day to day activities just fine. Mark will be finished with work after tomorrow, and then he will be off until after Abby has recovered. We thank God that he works for such a generous company when it comes to time away from work.
I am trying to prepare myself for a long stay at the hospital, because I know that Abby will always want her mama to be there. She said to Mark the other night as he was laying her down to bed, "I need my number one Mama, she is the best Mama". Wow - does that make my heart melt. But, the hospital can be very emotionally and physically draining, so we are both just trying to gear up for that. And, of course, we are worried about Clare because she will get shuffled around a lot while Abby is in the hospital, which is something that she is not used to. It is a lot to think about. On the up side, we do look forward to being done with this surgery and not having something looming out there in the future.
Abby and Clare both came down with runny noses on Monday morning (which is very frustrating because we haven't taken them anywhere for so long and have been working so hard to keep them healthy). So, they are both taking some antibiotics right now so that Abby will be very healthy going into surgery.
Please keep praying for Abby. We appreciate all your prayers and well wishes. If you check this website and have time please sign the guestbook. Mark and I check it everyday when we are at the hospital and it helps keep us going to know all the people that are there with us in spirit.
Love to all,
Heather and family
Tuesday, January 24, 2006 3:33 PM CST Dear Family and Friends,
We met with Dr. Singh (Abby's cardiologist) on Monday morning and we have now scheduled her third heart surgery (Fontan) for Wednesday, March 8th. Dr. Singh said that her heart and blood flow look very good, but it is time for the third surgery. She is big enough now and her body is ready. We will take Abby in for a pre-op appointment on March 7th. The pre-op will involve seeing Dr. Singh again, meeting with the anesthesiologist, doing some blood work, and touring the PICU. Then we will bring her back home for the night. On Wednesday morning we will take her to the hospital at 7:00 am and her surgery will begin around 8:30 am. The surgery usually takes 3-4 hours total. Dr. Singh said to plan on being in the hospital for about 3 weeks (if everything goes well). So, that is what we know. Our job now is to just keep Abby as healthy as possible over the next 6 weeks, so that she is at her top strength going into the surgery. This means that we will be spending most of our time at home between now and the surgery.
Please keep Abby in your prayers as her surgery date approaches and check this website often for updates both pre and post operation.
Love, The Ostlies
Heather, Mark, Abby and Clare
Tuesday, January 10, 2006 12:47 AM CST Hi everyone!
A belated Merry Christmas and Happy New Year to all of you. We had wonderful holidays here at the Ostlie house. It seemed like for most of December the girls both had colds, but they were feeling better by Christmas week and were able to enjoy all of the festivities. We went to church as a family on Christmas Eve and then spent Christmas day celebrating with Mark's family on their farm near Glencoe, MN. We celebrated with Heather's family the weekend of New Year's and actually hosted them at our house. We had a great time. The girls both got lots of cool new toys. Our living room resembles a toy shop where a tornado just swept through. Ahhh, the joys of children!
Abby has a doctor appointment with Dr. Singh on January 23rd. This will just be a regular check-up, but we will discuss the timing of her third heart surgery (Fontan) at the appointment. At our last appointment, Dr. Singh said that he thought we would probably schedule the surgery for sometime in March. We will just have to wait and see what he is thinking now. Of course, we are nervous about the next appointment because we know that it gets us one step closer to Abby's surgery. Both of us sort of put the surgery out of our minds during the holidays, but now it is definitely staring us straight in the face. As much as you try to prepare yourself for an event like this it just doesn't help at all. We will all try to be brave over the next months.
We will plan on updating the site again after her next appointment.
For now Abby will keep playing Dora, Barbies, coloring, reading books, riding her tractor, and all the other activities that she loves.
Please keep Abby in your prayers.
Love, The Ostlies
Mark, Heather, Abby and Clare
Monday, October 3, 2005 10:10 PM CDT Great news! Abby had an appointment with Dr. Singh today and she is doing wonderfully. Dr. Singh would like to postpone her third heart surgery (Fontan) until sometime during March 2006 (he was originally planning on December 2005). This is awesome news! He made this decision because she is in great health and because he feels that she is a candidate for completing the Fontan without using a fenestration. A fenestration is basically an overflow valve that can move blood if too much builds up. They have been doing the Fontan without the Fenestration in cases where they think the child will handle the flow well and recover in about the same amount of time. In the long run this will save Abby from having another heart cath to close the fenestration. He would like to see her gain a little bit more weight before the surgery and this extra time will also allow her vessels to grow more. So, we can now look forward to the holiday months without having a dark cloud looming over our heads. We will thankfully celebrate Thanksgiving and Christmas at our own home, and then we will visit Dr. Singh again in January. After our January appointment the surgery will be scheduled. For now we can breathe a small sigh of relief and push the worries to the back burner for a little while longer.
Thank you all for your words of hope and your prayers. We appreciate your continual support very much.
Love, The Ostlie Family
Mark, Heather, Abby and Clare
www.ostlie.net
Tuesday, August 2, 2005 10:01 PM CDT Hi everyone,
We would like to thank everyone who thought about and prayed for Abby during her heart cath yesterday. We know that your prayers help! Abby did great yesterday. The heart cath was very successful. Dr. Singh (Abby's cardiologist) is pleased with the results. Her vessels and pressures were very good. He feels that because she is doing so well he would like to wait until the first week of December for her third heart surgery. This will give her time to grow more and maybe add a couple more pounds. He said that the third surgery (the Fontan) is the often the hardest surgery for children to recover from, however he feels that in Abby's case this surgery should not post a risk to her life. This is good news. We know that these surgeries are always risky, but he is confident that she will make it through and recover well. So, we now have about 4 months until the surgery. We plan to fully enjoy our time as a family until then.
We will keep you posted on Abby's health.
Love, Heather, Mark, Abby and Clare
Wednesday, June 22, 2005 8:59 AM CDT Hi everyone,
I am sure that many of you have been thinking about Abby today, as she was supposed to have her heart cath this morning. However, she started running a temp on Saturday and has come down with a really bad cold. So, we consulted with Dr. Singh and he feels that it would be best to postpone the heart cath until Abby is feeling better. He said that it is very important to get accurate readings on her lung pressures and with a cold they could get false readings. The plan is to reschedule the heart cath as soon as possible after Abby is feeling better.
Abby's sister Clare now also has this cold, so things at our house are a little hectic. I spend most of my time wiping runny noses and trying to sooth babies that are not feeling well. Hopefully everyone here will be feeling better by the weekend. We sure would like to get outside and enjoy some of this warm weather. If the girls are feeling better maybe we will go to the beach this weekend. Abby loves the water.
Thanks for all the thoughts and prayers and we will let you know when the heart cath is rescheduled.
Heather
Thursday, May 19, 2005 10:49 AM CDT Hello all!
Sorry sorry sorry that it has taken us so long to update this webpage again. I guess that no news is good news. We spent most of the first few months of the year just enjoying our time with Abby before her little sister was born. Abby is now a big sister. Clare Elaine was born on April 10, 2005. Abby has adjusted very well and Clare is a wonderful addition to our family. Abby likes to help me with everything concerning Clare. She is the first to notify me if Clare is "fussing", "crying", "pooping" or anything else that babies do. I think that we all have adjusted well and our family is very fun.
Abby's health has been great over the past months. She is really flourishing. She now weighs between 25 and 26 pounds and is growing like a weed. Her vocabulary is awesome and we love talking to her. The new words of the week are Colorado (where her Uncle Mike and Aunt Jackie live) and pacifier (which she likes to give to Clare whenever she is "fussing").
Abby is scheduled to have a heart cath on June 22nd. This will help Dr. Singh determine what the next steps are for her concerning her heart. Right now he is predicting that she will have the 3rd stage heart surgery, the Fontan, toward the end of the year...maybe December. However, we are wondering if this might get moved up considering how well she is growing. Either way, Abby will have another heart surgery before the end of the year. We are trying not to get too worked up about the surgery yet, but it is so hard to think about our little girl going back in for surgery. For now we are just enjoying everyday and watching Abby become a little person more and more.
Our family is going to Tennessee in June for an Ostlie family reunion. We are looking forward to that. We are also looking forward to spending time on Abby's Oma and Opa's boat this summer and doing lots of swimming.
Again, we apologize for not updating the site sooner. I will try much harder to keep things updated from now on.
Thank you to all for your continuing love, support, and prayers.
Love, Heather, Mark, Abby and Clare
Saturday, December 25, 2004 9:59 AM CST Merry Christmas everyone!!!
I just wanted to do a quick update today and put a new picture of Abby out on the webpage. We have had a busy fall and I have not been good about updating this page. Abby is doing wonderfully. She is very excited about celebrating Christmas, and we are so happy to celebrate with her. She is really turning into quite a toddler. She walks pretty much everywhere now and says tons of words. It is awesome to communicate with her. We will be sure to update again after the holidays with more pictures and news.
We hope that you all have a wonderful Christmas and Happy New Year!
Love,
Mark, Heather & Abby Leigh
P.S. For those of you that don't know yet, we are expecting our second baby (another girl) in April 2005!
Wednesday, September 8, 2004 2:06 PM CDT Sorry that it has been so long since I last updated Abby's page. We have just been busy enjoying the last of summer. Last week we took Abby to the State Fair and she loved it! She rode the big yellow slide three times, rode the carosel, and even ate some food on a stick! She continues to grow and is doing so well.
We had our check-up with Dr. Singh on August 26th. Everything was just great! Abby's heart is no longer enlarged and the valve that was leaking has corrected itself (now there is just a very small leak). Dr. Singh was really happy. He said that he will not perform the heart cath until sometime near her 2nd birthday, and that her third surgery (Fontan) will most likely be scheduled sometime close to her 3rd birthday. This was great news. We are all so thankful that Abby is doing so well and that her outlook for the future is bright.
Thank you all for your continuous prayers...we know that they do miracles.
We hope that you like the new pictures.
Love, Heather, Mark and Abby Leigh
Monday, July 26, 2004 10:35 AM CDT HAPPY BIRTHDAY ABBY LEIGH! As of 7:00 AM this morning Abby Leigh is officially one year old! What an amazing year she has had. She is a strong and courageous little girl. We are so thankful to have her in our lives. We had a big birthday party for Abby on Saturday, July 24th. It was so wonderful to have everyone come and celebrate with Abby. We have an appointment with Abby's cardiologist on August 26th and we pray for a good report. Thank you all for praying for Abby this year and keeping track of her progress.
Love, Heather, Mark and Abby Leigh
Thursday, June 10, 2004 10:38 AM CDT Just a quick update. Here are some new pictures. Abby is crawling all over the place and she continues to change everyday. We are having so much fun with her.
Before we know it her 1st birthday will be here. Please check our family website for a longer update.
www.ostlie.net
Love, Heather
Sunday, May 30, 2004 1:26 PM CDT Just a quick update. Here are some new pictures. Abby is crawling all over the place and she continues to change everyday. We are having so much fun with her.
Before we know it her 1st birthday will be here. Please check our family website for a longer update.
www.ostlie.net
Love, Heather
Sunday, May 23, 2004 9:59 PM CDT Hi everyone!
I just wanted to write a quick entry and let you all know that Abby is doing great! There have not been any seizures during the past month and we have been slowing weaning her off the anti-seizure medication. She gets to stop taking it completely after tomorrow. This is a very happy thing.
Lately Abby has really starting babbling. All day long she is doing babababa and mamamama and any other thing that she can repeat over and over. It is so fun to hear her little voice. Also, so is very close to crawling. She is get up on all fours and reach out her little hands, but she just can't quite get the knees moving yet. It won't be long now. Then we will really be on the go.
We are planning on spending a lot of time in our yard during the month of June. Mark is now officially finished with his graduate degree, so he has a lot more free time. We don't have sod or any landscaping in our yard yet, so we will be working on that big project all month. Over the weekend my parents came and we all worked on painting Abby's room. It is so cute. We have a few final things left to do. When it is complete I will put a picture out for you all to see.
If you are checking this site to see how Abby is doing, please post a journal entry, we love to hear from all of you.
Also, please mark your calendars for Saturday, July 24th. That is the day we are going to have Abby's first birthday party! We will be sending out invites soon.
Hope you are all doing well.
Love, Heather
Monday, April 26, 2004 2:50 PM CDT Hi everyone!
Abby is 9 months old today!!!
Just a quick update. Abby seems to be doing just great. She has now gone 5 days with no seizures. (For those of you that we didn't talk to, Abby had another mild seizure last Wednesday and we ended up taking another trip to the ER. They increased the level of anti-seizure medication that she is on and sent us back home.) Anyway, she is back to her same old self. Her appetite seems to have increased. She pretty much could eat nonstop if we would let her. It is good to see that she is feeling well. Her leg seems to be healing well, and we go tomorrow to have it checked and will probably get the cast off! Yeah! She will be so happy to be rid of that darn thing. She is sleeping better at home and taking good naps, so that is great also. Mark and I are getting back into our old routine. Mark has a lot of catch-up to do at work since he was gone most of last week. I want to get lots of things done here at the house, but those projects can happen as time permits. We still have lots of our stuff in boxes from the move, but we will just unpack when we can. We are just so thankful that Abby is feeling better!
Hope that you are all having a great week. Thank you for your prayers and well wishes.
Love, Heather, Mark and Abby Leigh
Wednesday, April 21, 2004 9:15 AM CDT Abby's Home!!!
We got to bring Abby home yesterday afternoon. The first order of business when we got home was for all of us to take a nap! Then Mark's parents came over and brought us dinner. Abby had a nice relaxing bath before bed, but of course her broken leg had to be wrapped in a plastic bag and held out of the water by Grandma Ostlie. She didn't seem to mind a bit. She is still a little unsure of things. She gets sort of scared when anyone touches her in an unexpected way...I think that she probably thinks she will get poked, because there was lots of that at the hospital.
Overall, Abby is about 90 pct back to her normal self. But, she is still 100 pct loveable like always. Today we are just relaxing at home, playing with toys, and enjoying the fact that we are not at the hospital. The rest of the week will also just be dedicated to relaxation and recovery. Next Tuesday we will take Abby to the orthopedic doctor to have her cast removed. That will be a good day. We will go back to the cardiologist in 4 weeks and will see the neurologist in 6 weeks. There is still no reason for sure that Abby had the seizures or why her heart is not functioning as well as before. We will probably never have those answers. The doctors will now focus on how to keep Abby healthy into the future.
Thank you all very much for your support and prayers. We are so lucky to have such wonderful family and friends.
We posted some new pictures of Abby.
Love, Heather, Mark and Abby Leigh
Tuesday, April 20, 2004 7:53 AM CDT We're getting our sweet little girl back more and more each day.
Abby had a happy day yesterday and restful night last night. She played with Oma (Grandma Mindy) and liked watching the fish in the aquarium on 7th floor. All of her recovery signs are looking good and she appears to have very normal function on her left side, which was a concern that some of her doctors had. She was very smiley yesterday and showing us that she is "so big" with both hands.
Some of her new medications are a little harder to regulate, so, although she is not scheduled to have anymore procudures or major tests, we're waiting until the docs are comfortable her lab results. It's feels like we should be able to go home any time because we are caring for all of her needs here now, but we have to defer to the docs judgment. It would be nice if they would let us just bring her in each morning for lab tests. Do I sound impatient?
Thank you all for your love and support,
Mark, Heather and Abby Leigh
Monday, April 19, 2004 9:25 AM CDT Abby's moving out of the ICU
She's doing really well this morning. Since yesterday she has lost over 2 lbs of fluid weight and is acting much more like herself.
She is no longer connected to any IVs or monitors. She is eating well and her personality is shining through again. It appears that the medications they are giving her are helping her heart to do what it needs to. She will not be having any more tests today, but they are monitoring the levels of her medications (especially the anti-seizure med). Once they are convinced that they have the correct dosages they will be sending us home. When we go home Abby will have to take a few more medications daily to help her heart and also one to help prevent any further seizures. However, she will eventually be weaned off of some of these meds. So, we will probably we at the hospital one or two more nights.
The doctors are still not sure why Abby had the seizures and they are also not sure what caused the change in the pumping strength in her heart. They will continue to try and sort these things out and get some answers. However, their main focus is on what to do from her into the future.
Today we will concentrate on R&R for Abby. Maybe she will have some playtime, but mainly rest.
Please keep Abby in your prayers. We will update again when we have more information.
Love, Heather, Mark and Abby
Sunday, April 18, 2004 Sadly, Abby is back in the hospital.
On Friday morning at about 7:30 AM Heather and Abby took a fall on the stairs, which resulted in a broken left leg for Abby a very bruised and sore backside for Heather. Things settled down at our house late Friday afternoon, we thought, as Abby had been fitted with a cast/splint and was down for a nap about 5PM.
About 45 min later Heather noticed that Abby’s left arm was shaking and her eyes where now open and looking only to the left. Heather worriedly informed me that Abby looked like she was sleeping with her eyes open. She was having a seizure and ended up taking an ambulance ride down to Children’s Hospital. Late Friday night she had another seizure and since then we’ve been here trying to sort this all out.
No solid answers have been found yet, but there is a theory. It is possible that the break in her leg caused foreign material (fat, bone marrow, etc.) to enter her blood stream. For most of us this would not be a problem because our body would trap this material when the blood is routed to the lungs. Abby’s heart mixes blood that is returned to her heart from her legs and so debris in her bloodstream can move along to the rest of her body, causing blockages.
Her MRI scan shows that she has had some small blockages in her brain. She’s had several “mini strokes” according to the neurologist, but only two of them caused seizures. Yesterday, they were also able to detect a deterioration in her heart’s pumping function and a murmur. This means she may also have blockages that occurred in her heart that are causing this decrease in function. As a result she is experiencing what is commonly known as congestive heart failure, which is a apparently the scariest term possible to explain swelling from blood that is backing up in body causing puffiness.
Abby was very alert yesterday and was even able to eat a little bit. Today as her swelling is increasing she is more tired and appears to have less of an appetite. Heather and I are doing as well as can be expected and trying to understand and separate potential long-term changes for Abby and those things that we simply need to get through in the short-term. Hopefully in a month or so we will simply look back on this as a horrible experience.
All prayers are welcome and appreciated.
Saturday, February 28, 2004 3:27 PM CST Abby is now 7 months old. She was 7 months on February 26th! Wow is she getting big. She now weighs close to 19 lbs and she is 28 inches long. Her new activities include rolling over, almost sitting up on her own, eating some solid foods, and babbling a lot. Abby is so much fun.
We had a visit to Dr. Singh's office on her 7 month birthday and everything is looking really good. Her oxygenation levels are at 90 percent which is awesome for a child with this heart condition. Her heart is not enlarged and is just growing at the same pace as her body. Dr. Singh was very impressed. Now we won't go back for another visit until around her 1st birthday. Dr. Singh told us that about this time next year they will schedule a heart cath to determine exactly when her 3rd surgery will be. He is guessing sometime around her 2nd birthday. But, for now everything is fantastic.
We will be moving at the end of March to a new home in Chaska, MN. We are all very excited. As you can see from the new pictures Abby is a big help to Mama in packing up her room. She really likes to get involved!!!
We hope that all of you are doing great. We love to hear from you, so if you have time for a quick note or phone call that would be great.
Take care.
Love,
Heather, Mark and Abby Leigh
Monday, December 22, 2003 10:17 AM CST Greetings and Merry Christmas! This is a picture of our family when we took Abby to pick out her first Christmas tree. She slept most of the time, but we woke her up to see Daddy cut the tree down and load it into the truck. She definitely likes all the lights and bright decorations on the tree. We are looking forward to celebrating her first Christmas. We certainly have so very much to be thankful for this year. Our precious little Abby has recovered beautifully from her surgeries and is growing like crazy. When we visited the pediatrician on December 15th she weighed 16 lbs 3 oz and was 27 inches long! She is learning new things everyday and continues to amaze us. We hope that this Christmas season finds you all well and in good spirit.
God Bless.
Heather, Mark and Abby Leigh
Friday, October 31, 2003 8:37 AM CST This is a picture we took of Abby on Oct 25th (one day before she was 3 months old). As you can see she is growing and changing a lot everyday. At our most recent doctor's appointment she weighed 12 lbs 8 oz (which meant that she gained 22 oz in 9 days!). The girl is definitely a good eater. She was 25 in long, which puts her in the 97th percentile for height, which is really no surprise considering that her parents are tall. Abby has adjusted very well now to being back at home. She has a lot of smiles for us and seems to be entertained quite easily. We are trying to get her on more of a consistent schedule now, but as any of you who are parents know this is a difficult task. We are so thankful that she recovered so well from her second surgery, and things should keep getting better from here. It is amazing to think that by Christmas she will already be 5 months old. We hope that you are all doing well.
Love, Heather, Mark and Abby Leigh
Tuesday, October 7, 2003 11:27 AM CDT We are home again! Abby had a rough day of recovery on Oct 5th and part of the day on Oct 6th...dealing with drug withdrawal and her body is still getting used to the new way that her blood is flowing, which can give her a headache. But, as you can see in the picture above, she is quickly getting back to her happy self. Anyway, she made it through the day and rested last night with the help of a little medicine. This morning she was discharged from the hospital and we were home by 10 am. Now it is just lots of rest and recovery for our little Abby. We are so glad to have her back home! This was a trying time for all of us, but now we can put it behind us and move on with life. Abby has so much living and learning to do and we are excited to show her the way. Thanks again to all of you for your love and support. We could not make it through these ordeals without you.
Love, Heather, Mark and Abby
Sunday, October 5, 2003 11:54 PM CDT Abby is out of the Pediatric ICU.
Today the doctors decided that she was doing well enough to move to a patient floor. Heather and I are very excited; the next move will be home!
What a remarkable person she is. We got to see her smile today. Their is so much joy and love in our hearts for her. Funny how such a little smile can wash away the lingering residue of stress and worry that we've had over the last week. We hold nothing back when we love such a little one. You all must feel that as well or you wouldn’t be diligently checking this site. Thank you. We have once again been emotionally and spiritually encouraged by the abundance of support you have given. I will post a new picture of her smile when I am with it enough to capture one for you.
Once again, thank you and God bless,
Mark, Heather & Abby
Wednesday, October 1, 2003 11:10 PM CDT Abby had a very uneventful and good day. This morning we were expecting to arrive at the hospital and see her looking very puffy from her surgery. Amazingly, she gained less than 1/2 a pound and is not retaining a lot of fluid, so she looks really good. Her eyes and sides are a little puffy, but not bad.
Her chest tubes are fairly dry, which means that she does not have a lot of bleeding from the operation on her heart. Her surgeon, Dr. Overman, said that he will most likely take out the chest tubes tomorrow. This is a good sign of recovery.
When she came out of surgery yesterday she was receiving 100% oxygen from the respirator. Today the nurses slowly reduced the amount of oxygen that she is getting from the respirator. When we left at around 9:30 PM she was at 50% oxygen. Normally we breath about 21% oxygen (room air), so they will try to get her down to this amount overnight. If this goes well and she does not have a lot of fluid in her lungs, they may be able to take her off the respirator as early as tomorrow. That would be awesome, but we are not getting our hopes up too high.
Abby is still receiving some good pain killers and meds to relax her, however it was great to see lots of little movements from her as the drugs would start to wear off. She even opened her eyes a few times to peek at us.
We continue to pray for slow and steady progress during her recovery. Today was a wonderful way to start the healing process.
Hope you are all doing well. Thanks for keeping up with the latest on our little Abby.
Love, Heather, Mark and Abby
Tuesday, September 30, 2003 5:20 PM CDT Good News.
Abby went into surgery at about 3:30 PM today and at 5 PM Dr. Singh (cardiologist) came out to tell us that the procedure was successful. We will not get to see her for another hour or so as they are not yet finished in the OR, but her blood oxygen levels are better now than they were before going into surgery! Remarkable. We are just incredible thankful right now, overjoyed really, and we needed to share this success.
God bless all of you,
Mark & Heather
Tuesday, September 30, 2003 0:29 AM CDT Monday was rough.
Most of the morning was uneventful, although as parents we were still adjusting to seeing her on a respirator. In the afternoon they attempted to put a line into one of her main arteries through her neck. This was meant to be in preparation for surgery later this week. This, normally routine, procedure failed horribly. Abby’s chest cavity was punctured and immediately started filling with blood, which put too much strain on her lungs. She went into respiratory arrest. They took emergency life-saving actions. Heather and I were terrified and helpless. Thankfully, with the help of drugs, her heart never stopped, but she had very little oxygen during this time. Tonight she is stable and slowly improving. We are happy to see little wiggles out of her and she’s opened her eyes twice. Her surgery will now take place Tuesday. The doctors will finalize the plan in the morning. We will update you all again when there is time etc..
Thank you again,
Mark and Heather
Monday, September 29, 2003 2:50 PM CDT Hi everyone,
It’s almost 3:00 PM on Monday. So far today we don't have much new news to report. Abby still has her breathing tube in, and they have not mentioned anything about taking it out. She is being fed breast milk via a feeding tube, so she is getting the nourishment that she needs. Right now they are going to put an IV line in her neck so that they can give medicines and draw blood when necessary (this will replace the IV line that is currently in her leg from the heart cath yesterday).
The nurses have told us that the cardiologist thinks her surgery will most likely be on Thursday, however the cardiologist is also still working to possibly move up the date. So, we don't really know exactly when the second surgery will take place.
It is hard to be patient when we know that she is in need of the second surgery. However, we do trust that the cardiologist and surgeon are doing what is best and will do everything that they can to help Abby get better quickly.
That is all we know for now.
Thanks to all of you who have posted messages today. They help us to stay positive.
Love, Heather, Mark and Abby
Sunday, September 28, 2003 11:22 PM CDT Abby is back in the hospital. She was scheduled to have a heart catheterization on Wednesday, October 1st, and then surgery sometime this next month…but now there has been a change of plans. Over the past few days Mark and I had noticed some significant changes in Abby’s health. She was having a much more difficult time breathing and eating and her coloring was much more bluish. We knew that these type of things would start to happen as she outgrew the shunt in her heart, however on Saturday morning we just felt more concerned. We called her cardiologist and described Abby’s symptoms. He told us that we should bring her in and admit her to the PICU. We took her in around noon on Saturday. When we arrived at Children’s they tested her oxygenation levels. At rest (sleeping) she was at about 61% and when she woke up and got active (fussy) they dropped to 33%. Obviously this was cause for great concern, so they immediately put her on oxygen.
This morning, Sunday, at 11:00 am they did the heart catheterization to see what everything looked like in her heart. They did confirm that she is outgrowing the shunt and will very soon need her next surgery (probably Tuesday or Wednesday of this next week). When she came out of the heart cath she was doing well, acting fussy and hungry, but then in a matter of about 10 minutes things took a turn for the worse. Her breathing rate dropped dramatically and so did her oxygenation level. They gave her a few minutes to see if she would bounce back, but that did not happen. So, they had to intibate her (put her on a respirator) to help her breath. It was quite traumatic to see her struggle so much to breath. It is also hard to see her on a respirator, but we know that it is the best thing for her right now. For now she is resting under sedation.
Tomorrow the cardiologist and surgeon will determine when her second surgery will be. Like I mentioned earlier they are thinking either Tuesday or Wednesday. They did see one other item of concern during her heart cath today, which will affect her recovery from the second surgery. Abby’s right pulmonary artery (that feeds into her right lung) is smaller than they had hoped, and smaller than the left pulmonary artery. This can affect quite a few things and might mean a longer road to recovery from the second surgery.
It looks like we are going to be at the hospital again now for an indefinite amount of time. We will try to keep you all updated on our website and the CaringBridge site at the hospital.
Please keep Abby in your prayers over the upcoming days and weeks. She is going to need them.
We hope that you are all doing well.
Love, Mark, Heather and Abby
Saturday, September 27, 2003 10:42 PM CDT Hello All,
Abby is back in the Hospital. We knew that this day would be coming, but it is still not fun. The last couple of days have been pretty rough on her. She was scheduled to go in this Wednesday so they could explore her heart with a scope to plan for the next surgery, but Heather's intuition told her something was wrong this morning. We ended up at Children's Hospital just after noon. The main issue is her oxygen levels. They should stay between 60-80% or so, but earlier today they were as low as 33%, which is dangerous. There was a dramatic positive change in her once she started getting oxygen. Tonight Abby is very stable and acting like her sweet self again. We're happy that she's getting the care she needs. Tomorrow, rather than Wednesday, they will scope out her heart and she will probably perform surgery in the early part of this week.
We'll try to keep you all up to date, please keep her in your prayers.
Love,
Mark, Heather and Abby
Sunday, August 10, 2003 10:44 PM CDT Maestro, Some Traveling Music Please
The photo above was taken as we left Children’s Hospital at about 1 PM on Sunday Aug 10. Since Abby was moved to a standard patient floor on Friday, Heather and I have been caring for her including giving her all of her medications, etc.. On Saturday after Abby had started breastfeeding very well, we started to ask if there were any reasons that we could not simply provide this care to her at home. Our cardiologist was planning to discharge us Monday, but we pressed for an early exit and they agreed that we could care for her at home. While she is not fully recovered and we will still be back at the hospital quite often (including early Monday morning), this is certainly a milestone to feel good about.
Heather and I really enjoying the fact that we are home as a family. Abby is 15 days old today and we are torn between feeling as though this time has flown by and that it cannot only be this short of a time because so much has happened. Ultimately we are thankful for the time that we’ve had with her so far and for what is to come.
We don’t quite know how to thank all of you properly. You have given us so much support and love over the last weeks. We are proud and delighted to have so many thoughtful, caring, faithful people that love us and Abby. Abby will need the second of this series of surgeries done sometime within the next 3-6 months. We plan to keep this site “open” at least until we are past that next hurdle. Please keep us in your prayers and know that you are in ours.
To keep up with us please visit the www.ostlie.net website.
Our Love,
Mark, Heather, and Abby Ostlie
Thursday, August 7, 2003 3:33 PM CDT Abby is having a better day today.
She is not really eating much more, but they have moved her to one of the standard patient floors and out of the ICU. This is great because it means she’s closer to coming home. Feeding has been slow, but we’re plugging away with many attempts. The fact that she is being fed via a tube kind of interferes with her appetite. These feedings are now being spaced out more to give her a chance to get hungry. They’ve told us that the only barrier to her coming home is a healthy eating regiment.
Her shakiness is gone today and she is able to sleep. They have taken away all of her “drip” medications, so she’s only connected to a feeding tube now. This makes her much easier to hold and move around. Very nice.
Thursday, August 7, 2003 10:06 AM CDT Abby had a bit of a rough day yesterday.
We couldn’t understand why she was so fussy and shaky and unable to sleep. It turns out that she is going through withdrawal from the narcotics that have been given over the last week or so. They are treating these symptoms the same way they would treat them for a drug addict. Last night she was able to sleep well, so this approach must be working to some extent. Part of the symptoms include gagging, so, needless to say eating has not gone well. A feeding tube was put in toward the end of the day so that she can start to get breast milk and have a full tummy. We will try to start breastfeeding today. We have been told to be very patient as it may take up to a week for her to remember how to do the whole suck-swallow-breath pattern.
We didn’t expect all sunshine and butterflies going through this process with Abby, but it is still difficult to watch her struggle. Our new pray for Abby is that she remembers how to suck and eat. We appreciate all of your prayers for Abby too, and we know they are working. So far she has really been “text book perfect” and we contribute much of that to your prayers and God’s helping hands.
A bit of advice for future mothers from Heather: DO NOT try on any pre-pregnancy clothes 12 days after delivering your baby…they do not fit! (I made this mistake today, before Mark could stop me.)
We hope you all have a great day. Again, thank you all so much for your messages, thoughts, and prayers. They mean so much to us!
Love, Heather and Mark
Wednesday, August 6, 2003 1:42 PM CDT Another Fun Day
Abby is doing so well. It is a pleasure to hold her and listen to the sounds she makes. Within the next few hours she will be moved to a private room in the ICU. I think that this is in part to give the patients around her some peace and quite. We will enjoy a new setting and a quite place to work on her sucking technique.
She has started to try to drink out of a bottle, but it is a bit of a struggle right now. The back of her throat is still sensitive from the tubes that were in so she tends to choke and cough, but she took her first taste of mother's milk this morning. She took a total of about 12 ccs of fluids and we need to get her up to 30 per feeding. If this doesn't start progressing more today a tube will go back in to feed her. I don't have to say how we feel about that, but we accept whatever is best for her. We're praying that she will coordinate the suck, swallow, breath sequence. The nurses assure us that all babies take some time to relearn this after this heart surgery. Breathing is the body’s clear priority, and these kids do not have the same level of oxygen in their blood so it doesn’t all work as naturally. She’s starting to catch on to this more and more and crying less as we stick with it.
Heather and I are both doing well. My wife is amazing.
We wish you all of our best.
Mark & Heather
Tuesday, August 5, 2003 3:51 PM CDT Happy Surprise
When Heather & I came to see Abby today, she was off of the respirator and breathing on her own. They plan to let us hold her toward the end of day today. She also is getting set for her first oral meal; sugar water . . . yummy. If this goes well, she will start to get the "real deal" tomorrow.
It is so nice to see those sweet little cheeks without any tape or tubes and to hear her cry. The tube from the respirator sat between her vocal cords so she could make no sound until this was out. She is now demonstrating her vocal ability, but it is a bit raspy now, but this should go away over the next couple of days.
She is quite calm most of the time and has not received any sedation or comfort medications since about 6 AM and she isn't too fussy. This is a good indication that she is not feeling pain in from her chest wound. She has been bright-eyed for stretches of 30-45 minutes. Today is fun.
Monday, August 4, 2003 8:16 PM CDT A Day of Rest
This morning Dr. Overman removed Abby's chest tube, and that brings her one step closer to a full recovery. We thought that we were maybe going to be able to hold her today, but the Dr. thought it best to wait until she has her breathing tube out...which will very likely be sometime tomorrow. We don't want to get too excited, but the thought of holding our little Abby is hard to resist.
Basically, Abby had a good day of rest and recovery. She was running a little temperature, but by the time we left the hospital tonight it had gone back down. She enjoyed being bundled in a blanket, that seemed to comfort her. The nurses said that she can start wearing some clothes now, so Mark and I picked out a few things for her to have at the hospital (they want all of her outfits to have buttons down the front and short sleeves for easy access).
Abby did get to try on her sunglasses today. I don't think she even really knew that they were on, because she was sleeping pretty hard...but she looked adorable.
Sunday, August 3, 2003 4:42 PM CDT One Step Closer
This morning at about 7:30 AM Abby Leigh had her second trip to the OR. This was to close her chest cavity, which had been open since Wednesday. Yesterday they decided to close her since her swelling was down and she was back to her birth weight. It is incredible to think that she gained 25% of her body weight in about 4 hours during surgery and then dropped the same amount over the following 3 days. For a 200 lb person, that's like gaining and losing 50 lbs in that timeframe.
She looks great (proud Daddy), but her heart rate has gone up over 200 bpm and her temp has risen since this morning, so they've been taking some successful measures to reduce both of these. If all goes well, she may have both chest tubes out by tomorrow and then we may be able hold her. This is a very exciting prospect. They may consider tube feeding her tomorrow also; we will be happy when she gets to start to eat "for real". Heather is ready to go when Abby is ;)
Friday, August 1, 2003 5:19 PM CDT More Little Wiggles
We were very happy to see Abby's eyes today. The urge to pick her up and hug her is sometimes overwhelming, but we know this will have to wait. We can gently rub and touch her. It is so fun to see her search for us as we lean over the bed.
She wiggles quite a bit when she is awake. They want her calm and not to have any big movements, so her sleepiness is regulated continually through drugs. She fights hard to keep her eyes open when we are close by. I think she wants to show off how strong she is. She was about 10 1/3 lbs. this morning when they weighed her, but she is peeing much more today, so by Sunday she may be able to have her chest closed.
She constantly gets new neighbors in the Pediatric ICU and we've been able to meet a few other parents and families. They work miracles here, it's as simple as that. As pastor Bonnie said, God works through these people and uses their hands to heal. We are so grateful for their dedication and compassion.
Thursday, July 31, 2003 5:09 PM CDT Blissfully Boring.
Today has been pleasantly uneventful. The staff likes this; they want her energy to go into healing. Abby now weights over 10 1/2 lbs. She gained this water weight during surgery and they want to reduce this so a diuretic is being used to coax the good stuff out of her. She should be under 8 lbs before they close her chest cavity. Other than this she has given the staff here very little to work on.
She is no longer on a steady drip of the muscle-relaxing drug, so every once in awhile we're seeing little wiggles. These tiny movements are not only good for Mom & Dad to see, but also will help her to pee. If she actually starts to move an arm or leg too much they will give her some low doses of the relaxant so that she doesn't agitate anything. They do not want her to "shake her groove thing" just yet.
Heather and I are feeling great about her progress and comfortable enough with her care that we’re planning to go home and sleep in our own bed tonight. We thank God and all of you for your joint effort of healing and prayer. We’ll try to put some more pictures on the ostlie.net website tonight before we go to bed.
Thursday, July 31, 2003 9:37 AM CDT Good morning to everyone! Abby had a very successful night after her surgery. She was stable and her vitals continued to look good throughout the night. Over the course of the night the nurses were able to lower the level of oxygen that she receives from the ventilator machine and also lower the doses of some of the other drugs that she is receiving. This means that her body is doing more of the work on its own and is not so dependent on the machines, which is good news.
This morning Abby's cardiologist, Dr. Singh, and her surgeon, Dr. Overman, both stopped by on their rounds and said that Abby is doing great at this point. They are happy with how her body is recovering thus far. Dr. Singh keeps giving us the thumbs up, which is very encouraging. Dr. Overman is currently in the process of changing the dressing on her chest. He said that they will start giving her a diuretic today to help reduce the water and fluids that she is retaining. (So keep praying for pee!) As these fluids are reduced they will make a decision about when to close her chest. Dr. Overman seemed to think that this might be possible as early as tomorrow or sometime this weekend. This is good news because it is one more step on her road to recovery. They keep reminding us that the recovery will and should be slow and steady. Please continue to pray for small improvements each day.
We are so thankful for the AWESOME nurses that Abby has. Mark and I stayed at the hospital last night, as these first 36 hours after surgery are so crucial. Even though this is a delicate time, we were able to get some rest during the night and felt comfortable doing so because of the care Abby is getting. Her night nurse is Chris, and he and his wife just had a baby girl on July 8th. So, Chris can definitely relate to what we are going through. Abby's nurse during the day yesterday and today is Kristine and she has three teenage children. She has just been fantastic. Both of the nurses have helped us to understand all of the medications that Abby is getting and what they are for. They are very patient with us as we continue to ask the same questions over and over again.
Today we will continue our watch at Abby's bedside. We are looking forward to helping Kristine give Abby a sponge bath and shampoo today. That will be nice to feel like we can do sometime for our little baby.
Thank you all so much for your continuous support, love and prayers. It means more to us that we can express in words. We try to check this sight frequently as it gives us strength to read your messages, thoughts and prayers. Abby has made good progress so far, but she still has a long way to go. Please continue your prayers for her, as we know they help to keep her strong. We wish that we could call each of you and let you know how thankful we are for your love and support, but time here just does not permit. Please know that we do get your messages and they help us immensely.
We are going to try and get a few new pictures of Abby today and post them to the website today or tonight.
Love, Heather and Mark
Wednesday, July 30, 2003 2:03 PM CDT Abby finished her first surgery at about 12:20 PM.
Heather and I just got to see her and our hearts are a little lighter. The next 24 hours are critical and the staff has tried to reiterate to us that she is not out of the woods yet, but to us she looks very good. The staff said that they will be more confident in her recovery after three good days.
She is retaining fluids and so there are a couple of chest tubes draining. These will be in place for perhaps the next week or so. Her chest was not closed yet, so that her body can endure the impact of swelling in the chest cavity. She might have another trip to the OR within the next 3-6 days to close this. They are giving her about a dozen different drugs to stabilize her and she is still on a respirator. All of her vital signs are currently in acceptable ranges. They said that after the next few days they would start her on some fats and nutrients via an IV.
She has not been allowed to eat anything since birth because the drug that has been keeping her alive interferes with digestion. The doctors were able to take her off of this drug at the end of surgery. We are thankful for this. She will be very anxious to eat as soon as they let her, which could still be a week or so. On Monday you could hear her sucking her fist across the NICU and a couple of times it seemed like her thumb was in danger of getting sucked off.
Heather and I would like to thank all of you once again for your continued support. Our nurse said that if you want to pray for anything specific, pray for pee so she can reduce the swelling and pressure.
Wednesday, July 30, 2003 11:41 AM CDT Small Victory
We were updated at 11:20 AM that Abby is now off the heart & lung bypass machine and her heart has started beating on it's own. They have about a 1-2 hour period left in the operating room, but this was the first critical success!
They had to cool her body to about 40-45 degrees in order to suspend her body functions and stop her heart while they performed this first step. It was imperitive that they warm her back up after about 45 minutes in that state so that her neurologicaly system was not affected. This all seems to have gone as the surgeon's had hoped.
There are too many other risks to count with this procedure, but we can't help but be encouraged by this latest news.
Tuesday, July 30, 2003 10:52 PM CDT Abby's first surgery is at 7:30 on Wednesday. The procedure should take 5-6 hours. We will try to post an update by sometime in the afternoon.
We cannot express enough appreciation for all of your prayers and support. We have been told here that this is the most complex heart problem to fix that exists. You all are helping us to remain encouraged and looking forward to good times with her.
Thank you.
Mark & Heather
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