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Click here to go back to the main page. Wednesday, November 9, 2011 3:24 AM CST I apologize for the delay in updating! Three kids sure do keep you on your feet! Monday, April 25, 2011 1:32 PM CDT Riese is doing well! She has healed and another scare is behind us.....one that I hope her, nor her family will ever have to endure again. Although I know that there will be more scary days down the road.......I am reminded once again to enjoy every second of every day that I have with my children. Another little girl lost her life to HLHS this weekend......I have been keeping up on her mothers blog and I came across this poem from another heart mom.....
Friday, March 4, 2011 8:30 PM CST Riese was discharged from the hospital this afternoon! The doctors discharged her as long as she was close to the hospital....so she is staying the weekend with her dad and Steph in Plymouth. She will be getting her labs drawn through the weekend at Children's to make sure that her INR level is in the range that they want it to be at. I am so greatful that she is able to be with her dad this weekend and be out of the hospital.....but i am having a very hard time being away from her with all that happened this week. I just got off of the phone with Grandma Tammy who is also staying the weekend with her (along with Gramps:) and she said that she is doing great and eating food like a champ. So, I am hoping to get some sleep tonight...knowing that she is in great hands.
Thursday, March 3, 2011 10:01 PM CST Riese is continuing to get better. She is both very physically and mentally exhausted but she is getting some much needed rest here in the hospital. The docs say that it may take a few weeks for her body to recover from what happened on Monday night. We continue to be in the Cardiac ICU, but we are hoping to be discharged sometime Saturday or Sunday. They are keeping a close eye on her INR level (the thickness of her blood) and will not let her leave unless it is 2.5-3.5 consistantly for a few days. Wednesday, March 2, 2011 7:56 AM CST Riese had a wonderful night last night! I can believe that 36 hours ago i didnt know if I was ever going to see her alive again............and i cant believe that those words are acually coming out of my mouth. THe docs rounded this morning and said that we can take some of her IV's out, start giving her some food and get her out of bed to get some excercise. They told her to plan on boredom! They said yesterday to plan on 3-5 days, but it may now be longer and we should know more later today. Tuesday, March 1, 2011 10:59 AM CST Riese's breathing tube was taken out a couple hours ago and she is resting right now. The first thing she asked was if we called Jeanne at school to make sure that they knew that she wouldnt be there today :) So, we pretty much know that the seizures didnt do any permanent damage. She is still looking a little rough, but all of her vitals are looking good at the moment. Tuesday, March 1, 2011 4:16 AM CST Riese was airlifted to Children's hopital late yesterday afternoon. She had her tonsils removed last monday for recurrent tonsilitis and strep throat and did well until yesterday. I kept her home from school all last week, and we decided that she was ready to go back and she felt as though she was strong enough.
Friday, June 4, 2010 9:21 AM CDT Riese is the proud new sister of a baby brother!!! Henry Robb Buttweiler was born on June 1st at 9:49 PM. He weighed 8 lbs 6 oz and is doing great!!! We will update more and post pictures soon.
Sunday, April 4, 2010 9:53 PM CDT Wow, it has been forever since I have last updated!! Things have been very busy in our house hold as usual! Riese has been doing great and can’t believe that her school year is coming to an end. We saw Dr Singh a few months ago and everything checked out great. She hasn’t gained much weight in the last year, but that doesn’t seem to be of any concern. It is hard to believe that her last heart surgery was just a little over a year ago, and the fact that she hasn’t had to be cardioverted since then is amazing to me. She is still on lots of meds, mostly for her arrhythmia, blood pressure, congestive heart failure, etc…………………but the meds seem to be keeping her heart working well. I hate the meds myself………the fact that I just know too much about them and what they can be doing to her little body and her organs. I am bothered by the fact that the Amioderone that she gets we stock in our crash cart at work for people who go into cardiac arrest………………..But, I do know that the benefits of them outweigh the risks of what might happen if she doesn’t take them. Sometimes I think that being a nurse makes me more of a worrier than anything because I know too many possibilities. The fact is, she is doing great as far as we can see from the outside…………she is a happy little girl who has very minimal complaints!
Sunday, December 27, 2009 8:54 PM CST Just a quick update!!
Friday, August 21, 2009 10:41 PM CDT Happy Summer!! Well, end of summer anyways. Can’t believe that Riese starts 1st grade in less that 3 weeks! This summer has gone by way to fast! Riese is doing well. She is about all done with her summer activities, with the exception of gymnastics which she is in right now. She did all of her usually summer fun activities, but a couple had to be cut out because of a sprained ankle. She was jumping on the neighbors trampoline and came home crying saying that she landed on it wrong. I spent that night making sure that it stayed elevated with ice……that didn’t do much because she woke up the next morning and couldn’t walk and it was three times the size and badly bruised. I brought her in for x-rays and luckily there was no break but she tore all three ligaments in her ankle…which I think can sometimes be just as bad as a break! This all happened in June, and her ankle is still bruised but it has healed!
Thursday, May 7, 2009 8:13 PM CDT Happy Birthday once again to our little miracle!!!! Hard to believe that Riese is 6! Riese had a wonderful day today. She woke up at 3 a.m. ready to start things off....we told her to go back to bed and all she wanted to do was stay up because it was her birthday day! Luckily, she went back to bed for a couple more hours! We brought her to Travelers Inn for a birthday breakfast and off to school she went....she had a great day at school! We hired "Giggles the clown" for her birthday party today. She had 16 girlfriends over and they had a blast! Riese suggested spagetti for dinner, and it surprisingly went well! I was a little worried, but the girls didnt make too much of a mess! Tinkerbell was her chosen theme, so they all enjoyed a big purple Tinkerbell cake for desert. It was a beautiful day outside, so they also spent a lot of time out of the house playing t-ball, riding Riese's John Deer Gator, playing on the swingset and writing with chalk on the driveway. It was so great to see Riese so happy!
Monday, April 6, 2009 8:46 PM CDT We have been home one week now and things are pretty much back to normal. Riese started school back up today and had so much fun! The kids were so excited to have her back and she was happy to be back with everyone again. Wednesday, April 1, 2009 10:43 PM CDT Just wanted to let everyone know that things are going great at home! We visited Riese's Kindergarten class today and it was great! Everyone was SO excited to see her and I acually had tears in my eyes seeing all of Riese's friends so happy to see her. They were giving her hugs and jumping for joy at the sight of her....we are so fortunate that Riese goes to such a wonderful school and has such a great teacher and friends. Monday, March 30, 2009 10:18 AM CDT I just wanted to let everyone know that we made it home yesterday! They acually wanted to have us stay another day becuase Riese's INR level was only at 1.5. I talked to Dr. Haun.....the cardiologist that was on over the weekend and she said that we could go home as long as I would give her Lovenox injections every 12 hours for the next few days and also have her blood checked today in Alexandria. Riese is handling the Lovenox shots very well. Lovenox is a medication that thins the blood....kind of like Heparin. She slept great last night, unlike her sister Clare who decided to start teething! She woke up in some pain but, as usual, is handling it quite well!
Saturday, March 28, 2009 10:00 PM CDT Riese is still in at Childrens but we are hoping to be going home tomorrow. Her INR level (the thickness of her blood) was too low (too thick) so they wanted her to have another day of IV Heparin. She also had some extra fluid in her lungs that they are hoping will clear a bit by tomorrow. She is still in a lot of pain at times and she tends to hunch over when she walks, but I did ask for a different kind of pain medicine and that is working wonders! She was just getting tylenol and she was trying to be tough by saying that she didnt need anything at all, but i could just see it in her eyes that she was very painful. I just didnt see that tylenol 4 times a day was enough for a little girl with a huge incision in her chest and two in her belly. So, she is now taking tylenol with codine and it is working wonderful. Riese had been such a trooper! We are so proud of her. She met a 32 year old who had heart surgery the day before her, he has been doctoring at Childrens since he was 4 and also has Dr. Singh as his Cardiologist. Riese found out that he was a doctor so she wanted to meet him and tell him that she wanted to be a doctor too when she grows up. It was so cool for her! Friday, March 27, 2009 12:13 AM CDT Riese had an ok night last night. She is painful so she tends to wake up often at times. She is in good spirts most of the time though. Especially yesterday after she got a visit from her friends Abby and Clare Ostlie. Thanks Heather for coming!!! It was great to see you guys! Dr. Moga took out the chest tube this morning so I think it will be less painfull for Riese to move around. We are hoping to be going home tomorrow or Sunday depending on how things go. Thanks again for all of the extra prayers! Thursday, March 26, 2009 1:27 PM CDT Riese just got transfered to the third floor. She is still doing well but still in lots of pain. She was getting morphine but now we are trying to just give her tylenol. She got her urinary catheter out today and they were going to take out the chest tube but they will be waiting to take that out hopefully tomorrow. I havent seen Dr. Singh yet today but we are still hoping to go home tomorrow......hopefully. Riese wants to that everyone for all of you kind words and prayers! I have to get back to her room now but I will update again when i can!
Wednesday, March 25, 2009 5:17 PM CDT Riese's breathing tube was taken out a short while ago and she is doing great! She was sedated for a while so the anethesia could wear off a bit. She was really uncomfortable when she woke up and the breathing tube was taken out shortly after. She is as always asking for "More Water" and we are slowly giving her sips. It is hard to believe that she is so awake so soon. She is in a lot of pain because of the three incisions she has on her chest, but they are giving her morphine for that. Dr. Singh said that as long as she continues to "wow" us, he might let us bring her home on Friday! He thinks that she would recover well at home and he feels comfortable sending her home in our care. I will be staying with her tonight in the PICU. I will continue to update with more of her progress! Thanks for your prayers! Wednesday, March 25, 2009 1:49 PM CDT Riese is out of surgery and recovering well. The surgery was a great success and the doctors are really happy. They ended up replacing her pacemaker and inserted a new atrial lead into the right atrium of the heart. She is doing fabulously and Dr. Singh is hoping that she will get her breathing tube out this afternoon. That is it for now, I have to get back to the PICU. Thanks for all of your prayers!!! Wednesday, March 25, 2009 8:24 AM CDT Riese went off to surgery around 8 a.m. I was able to walk her to her OR where they put her to sleep. It was sad, but I knew that I was leaving her in good hands. We are hoping that she will be done in a few hours or so, but I will update when we know more as the morning/day goes on. Monday, March 23, 2009 1:55 PM CDT We are heading to the cities tomorrow for Riese's pre op appointment at 2 p.m. Surgery is scheduled for Wednesday at 7:30 a.m. I will continue to update throughout the day on wednesday with the progress of her heart surgery. Tuesday, February 24, 2009 10:14 PM CST Just a quick update....
Friday, January 2, 2009 9:24 PM CST Riese had a dr. appointment today with Dr. Singh. They did the whole work up....echo, pacer check, etc. I have to say that I was surprised with what Dr. Singh had to say. A few months ago, on my due date, Riese had gotten cardioverted for the 4th time in 2008. After asking Dr. Singh what we do next he told me to go home, have the baby, enjoy the holidays and we will see you after the first of the year and we will talk then. During her pacer check today, they informed us that the battery on her pacemaker only has 2-6 months left. After that, we talked to Dr. Singh and he told us that we have to replace the battery but also the pacemaker lead in her heart that hasnt been working correctly. In order to do this, they will have to do heart surgery. Luckily it will not be open heart surgery, but they will have to open her chest, find the atrial lead in her heart and replace it. It was something that we knew was coming, just hard to believe that this will be her 6th heart surgery and she has to be put through this all again. Her last surgery was in August 2006.
Saturday, December 6, 2008 10:01 AM CST We are enjoying our time in Florida!!! The weather has been in the 70's and it is beautiful. We aren't looking forward to coming back to the cold weather on Tuesday! We are headed to the pool, so I will update more next week!
Monday, November 10, 2008 1:21 PM CST So sorry for not updating sooner!! Things have been going great....but very busy at our household! Clare has been a wonderful baby and Riese is being a wonderful big sister. We also became auntie and uncle again to baby Bergen Kopischke! My brother and sister in law had him October 20th! He is a beautiful baby!
Thursday, October 2, 2008 7:43 AM CDT Riese is a big sister!!! Clare Julianne Buttweiler was born yesterday at 6:10 p.m. She has 10 fingers, 10 toes, and most importantly a 4 chamber healthy heart! I went into labor at around 2 pm yesterday, got to the hospital at 4 and delivered Clare 2 hours later. She is 7 lbs 11 oz and 20 inches long and very healthy and cute!!!!!! Riese is so excited and we are all so surprised because we all thought that she was a he!!! We will keep you updated with info and I will try to put on pictures later today!!! Thanks for checking!
Thursday, September 25, 2008 8:34 PM CDT They went ahead and did another cardioversion today…her 4th this year. They are trying to figure out why they can’t regulate the atrial flutter with all of the medication that she is on. Dr. Burton, another cardiologist, said that he has never had a patient fail Sotalol and Amioderone (antiarythmic medications). They think that there might be a problem with her atrial lead, and if that is the problem, they will have to do open heart surgery to fix that problem. They did the cardioversion and that worked for now, the flutter is gone. They did a couple of other changes with her pacemaker, which they are hoping will keep the flutter away. The only thing is is that it uses up a lot of the battery in her pacemaker. There was a lot of information that I got today that I didn’t even understand. But, what I think I got out of today was that nothing is working to keep the flutter away. It might be that her atrial lead isn’t working properly, and if that is the case, there will be surgery. If that isn’t the case, they seem pretty much in the dark as to what is wrong and we will just have to wait and see what we are going to do. The atrial flutter is what is making her heart sicker and putting her into even more extreme heart failure….which makes me worry about her having to get that heart transplant. Wednesday, September 24, 2008 9:43 PM CDT I will be bringing Riese to Childrens tomorrow because they think that her flutter is back. I began to notice some changes in her a couple days ago and thought that things were just not right. I did a pacemaker check over the phone and they called me today saying to have her at the heart clinic at 8 a.m. tomorrow....so we are planning on them doing a cardioversion. So, we are down in the cities tonight because Riese is unable to eat anything and a 2 1/2 hour drive with an empty tummy isnt fun at 5 in the morning....for any of us. I am just hoping not to go into labor! I did go to the doctor before we left and she said that I shouldnt have the baby tonight, so i think that we are safe. So, keep us in your prayers and I will update tomorrow. Tuesday, September 2, 2008 10:33 PM CDT Riese survived her first day of Kindergarten!!!!!!!!!!!!!! The picture on the front page is her at breakfast this morning with her pick of food…………Fruit Loops with marshmallows, bacon, a Go-Gort and a banana. She had a wonderful day. The school bus picked her up at 7 a.m. and she got on the bus without even crying, with a big smile on her face and said “bye, I’ll see you later!” Surprisingly, I didn’t cry either! I was just so happy that she was so excited to go to school! But, I really don’t think that it has hit me yet…….and when it does, I probably will cry for days! She got home at 3 pm and was so happy and excited about school and her school bus…..she actually said “I wish I was on my school bus again.” I was really nervous letting her ride the bus, but she really wanted to and she really loved it, so I am glad I made the decision to let her! I can’t believe that she is in Kindergarten, what a big milestone for her! I am so proud of her and so excited to see how she develops in school. Sunday, August 10, 2008 10:54 PM CDT As you can see, we bought another puppy! Call us crazy, but we now have two yorkies......Watson is One and our new gal, Lucy, is 4 months old! Lucy is going to be half the size of Watson, only about 4 pounds or less. Things are acually going a lot better than i thought, the two dogs get along great and are already eachothers best friends! And, of course, Riese is is heaven.....she loves animals!
Sunday, August 3, 2008 10:34 PM CDT Just wanted to let everyone know that Riese's friend Abby just got a new heart!!!!!!!! If you dont already know, here is her website.....www.caringbridge.org/mn/abbyleigh.
Tuesday, July 8, 2008 9:09 PM CDT Riese’s Dr. appointment with Dr. Singh went well! The flutter has not returned and everything checked out okay. Riese will continue her heavy doses of medications but as long as it keeps the flutter away I guess that is the best things for her right now. We don’t have to go back for 6 months either! It is a good thing, I guess, but it still makes me nervous waiting that long for Dr. Singh to see her. We will continue pacemaker checks over the phone every month or two. I actually have an appointment with Dr. Singh in a few weeks. He is going to be doing another level 2 ultrasound just to make sure everything is still okay with the baby…..he and the perinatologist tell me that they don’t want any surprises……and neither do we! Only 2 more months or so left…..it is going very quickly, but I am happy about that because being pregnant in the summer is exhausting!
Wednesday, May 28, 2008 10:12 PM CDT Unfortunately, the cardioversion had to be done yesterday. We got to Dr. Singh’s office at 8:30 for them to do an EKG and a pacemaker check. At first when they checked, they thought that the flutter was gone, but they didn’t know for sure so they turned down the rate of her pacemaker and sure enough….it was still there. So, we headed to the PICU and were greeted by two of Riese’s primary nurses, Sue and Gaylene. Sue had her room already set up and the bed covered in one of the blankets that we had donated to the unit the week before, the princess one….Riese’s favorite. The first thing that I thought of was how depressing it was to have Riese there again, but I felt very fortunate to be in a place that cares so deeply about her. The IV start went a little better than last time, even though they had to try two times to get it in. We waited about 10 minutes before the “team” of about a dozen people arrived to do the procedure. And then, once again, we had to witness something that I hate the most and what just rips my heart right out of my chest……seeing Riese be put to sleep. For one, she hates the Propovol (med that puts her to sleep) because it burns so bad. And we have to see her scream to please have them stop because it hurts so bad……and then her eyes roll to the back of her head and then the respiratory therapists has to take over and help her breath. That is when I have to leave the room and leave everything up to the specialists. I know that it is necessary, but it is so hard that she has to deal with this so often. The cardioversion only takes about 5 minutes and we are back to the room to see her and wait for her to wake up. She cracks everyone up and seems to always make everyone laugh after she wakes up. She is still groggy but so funny at the same time it makes us feel so much better. I talked to Dr. Singh about the future, and it is still unknown. He increased her Amioderone another 5 mg (now 150 mg a day), which is still too much for her to take but necessary to try to keep the flutter from coming back. We have to go back for a check up in a few weeks and we will be keeping a very close eye on her from now on…….not that we ever did?!?!?! Her burns from the patches aren’t as bad as they were last time either……thank God! They “shocked” her at 30 Jules instead of the 50 Jules that they did last time. She does have burn marks but they aren’t half as bad as they were last time.
Thursday, May 15, 2008 10:22 PM CDT Ups and downs have been a part of our lives since Riese was born, and today we struck another down. Mostly every night, you can find me in Riese’s room listening to her heart and checking her rhythm with my stethoscope. It is something that just makes me feel better before I go to bed. Well, two nights ago, I noticed that her rhythm was off and sounded more tachycardic (fast) than normal. I decide to call Dr. Singh in the morning, and they ordered a pacemaker check. They found that she definitely was having a rhythm change and we should bring her in the next morning. We went to Minneapolis this morning and they discovered that Riese was back in Atrial flutter. The plan is to increase her Amioderone and Coreg for the next 10 days and then plan on another cardioversion if the increase of medication doesn’t work. This also happened back in January, her flutter was back, we increased her meds, and it didn’t help….so she had to get cardioverted. So, I don’t mean to have no hope that the medication wont work, but I believe that it isn’t going to help at all this time as well. So, we are planed to go back on the 27th to check the rhythm, and if it hasn’t stopped, they will go ahead with the cardioversion……again.
Wednesday, May 7, 2008 9:46 PM CDT Happy Birthday to You
Monday, March 10, 2008 9:08 PM CDT Riese had her Dr. appointment last week with Dr. Singh and her pacemaker specialists….Tait and Dr. Perry. Everything went ok and the flutter is not back!!!!! We don’t have to go back until June but she will have a pacemaker check in about a month. They have kept her on the large dose of Amioderone and continued with all of her other meds except one. She is now down to 8 meds a day and continues to take them well!!! She has continued to be her spunky self since the cardioversion and doesn’t seem to stop all day!
Monday, February 4, 2008 9:14 PM CST We are back home tonight and Riese is sleeping peacefully in her bed. The cardioversion went pretty quick this morning and it was successful. The whole morning was another reminder of how sick Riese’s heart really is. Having to see her get an I.V. and cry in terrible pain as the Propovol (the medication that puts her to sleep) goes through her vein and then roll her eyes back as she passes out was heart breaking to see at the least. I hate that she has to go through that and it seems so unfair that she has had to do it so many times. She was such a good patient the whole morning, she loved being in the PICU to see her old “home” and all of her nurses and doctors. The cardioversion was quick, like I said before and we were able to be in her room as she woke up. She thought that it was pretty cool that she didn’t feel anything and wanted to get out of bed ASAP! She was a little impatient, as she usually is when those kinds of drugs wear off, but after about 15 minutes she was able to sit up without felling dizzy and falling over. She then got to walk up to the gift shop with her nana Donna to pick out her first “Webkinz.”
Monday, February 4, 2008 9:50 AM CST The cardio-version is done and the flutter is gone. I have more to update, but have to go back down to PICU with Riese. She is doing well! I will update more later today or tonight. Thanks for all of your extra prayers! Friday, February 1, 2008 4:17 PM CST Riese’s check-up with Dr. Singh didn’t go as well as we would have wished. They did a pacemaker check on her first and noticed that her Atrial Flutter is back and in “full gear.” They tried for a long time to get her out of the flutter by doing some different things with her pacer and nothing worked. Our plan is to increase her flutter medication over the weekend and then recheck her on Monday. If the medication doesn’t work, they will be doing a cardio-version on her Monday morning. If you don’t know what a cardio-version is, it is normal used when a person goes into cardiac arrest and they get “shocked” to try to restart their heart again. They will put her to sleep for the procedure and it shouldn’t take too long. She is getting admitted to the PICU at 7 am Monday morning. Thursday, January 17, 2008 12:11 AM CST Just a quick update....Riese is doing well! We see Dr. Singh at the end of the month. I am hoping that he will be doing an echocardiogram to check the function of her heart. About a month ago I noticed that her heart was beating irregularly. Since she does have a metalic valve, it is really easy to hear. They did another pacemaker check and noticed that her atrial flutter was back. Dr. Burton (another cariologist at Childrens) looked at the strips and thought that it wasnt anything to worry about at this time. So, we will know more about that at the end of the month.
Sunday, December 16, 2007 6:16 PM CST We returned from our very sunny trip to Florida and things couldn¡¦t have gone better! We stayed with Robb¡¦s parents in Venice and we had a wonderful time. The highlight of the trip was going to Sea-World, but we did a lot of other fun things like visiting the ocean, swimming in the pool, shopping and eating really good food! Riese did awesome on the plane, although she did say about a thousand times ¡§I want to be in Florida!¡¨ I was a little worried about going through security with all of Riese¡¦s meds and her pacemaker, but things went pretty slick. She did get her own digital camera from her Grandma Donna before we left, so that was a big hit with her on the trip¡K.she carried the thing practically everywhere! We had such a great time and we can¡¦t wait to go back!!!
Monday, December 10, 2007 11:07 AM CST We have returned from our trip to sunny Florida! I will update and put some new pictures up later on in the week!
Monday, October 8, 2007 4:30 PM CDT Hello to all! The wedding on the 22nd went wonderfully! Nothing could of gone better, we had beautiful weather and Riese was the best flower girl ever! Some of Riese's nurses from Childrens in Minneapolis were even able to attend, and also a few of the heart moms and dads....we were all so happy to see all of you!!! Not much else is new. I did post some new pics from the wedding and i will put some other new ones up from the wedding when i get some more. Thats it for now! We hope you are all enjoying your fall!
Monday, September 17, 2007 9:59 PM CDT Well, I am finally getting a chance to update, so sorry for the delay!
Monday, May 7, 2007 10:15 PM CDT Happy 4th Birthday Riese!!!!!
Tuesday, April 10, 2007 7:57 AM CDT Just a quick update since DECEMBER. Riese has been doing outstanding. She has been staying very busy and is full of energy. She has been going to school,daycare, and lots of fun shows. She just recently had her ears pierced, which she is very proud of. Not much else to report...everything is going great with her. One of us will update with more detail when time permits. Thanks for checking in.
Wednesday, December 20, 2006 11:24 AM CST The cardioversion went well and the atrial flutter is gone, at least for now. We will continue with our monthly checkups with Dr. Singh and pacemaker checks with Tait and Kim. They dont know if the flutter will come back, but there is a good chance that it is going to be a never ending problem. Riese will also continue all of her medications, including the Sotalol for her flutter. Hopefully the cardioversion worked and the Sotalol will also work, or else she will be on that med for a long time. As far as a transplant, we hope that we can go a long time without one, but the flutter damages and scars the heart increasing the chance of a transplant sooner.
Sunday, December 17, 2006 7:53 PM CST Just a quick update.....riese is sceduled for a cardioversion tomorrow morning. They need to shock her heart to get rid of the atrial flutter. They noticed about a month ago that the atrial flutter came back. They increase one of her medications to see if it would work, but it didnt. So, they dicided to do this cardioversion tomorrow. I will update when we know more about the atrial flutter and if it has gone away...... Sunday, November 26, 2006 1:40 PM CST Well, I am finally getting a chance to update Riese’s page! It is hard to believe that we have been home from the hospital for over three months. Riese has been doing well and her doctors appointments have been going well up until last week. Riese’s heart went back into atrial flutter and her atrium is now fluttering at 240 beats per minute. Dr. Singh increased one of her meds and sent us home until the middle of December, when we have to go in for her next check up. We are hoping that increasing this med will do the trick, but if it doesn’t, we don’t really know what is next. Her heart is already in heart failure and this atrial flutter is what makes it worse. In August after Riese’s heart surgery, Dr. Moga had said that the atrial flutter is what is going to make her go into heart failure even more and increase her chances of getting a heart transplant sooner. So, as scary as this is, I am trying not to worry about it until we learn more in December.
Monday, October 16, 2006 8:28 AM CDT Riese had a Check-up with Dr.Singh on the 13th. Everything checked out and she's doing excellent. She's full of energy and acting like sometimes naughty 3 year olds act. She loves to tattle on people and sometimes she acts as if she's more like 5 or 6. Its amazing how far she has come. We are so thankful that all is going well. Besides her 6-7 meds she still takes twice daily, she is a normal bouncing of the wall little girl! Thanks for taking the time to check in , we'll try to post new pics soon.
Tuesday, September 5, 2006 2:36 PM CDT Riese is doing excellent! There's not a whole lot more to say. The fluid in her chest seems to be gone for most part and she's starting to be able to eat normal again. She still takes 6-7 meds twice a-day but she is use to that. She is spunkier and crazier than ever.Thats about all for now, hopefully things stay this good for a long time. Sorry for the quick update, Lindsey will post new pictures in the near future. Thanks for checking in.
Wednesday, August 23, 2006 7:58 AM CDT The fluid in Riese’s chest cleared up substantially over the weekend. It seems that the extra diuretics are helping, so chest tubes are no longer in the picture. She is still on her “fat free” diet which is not so easy but she is coping with it. Other than that, not too much else to report, she is starting to get back to being her goofy self and hopefully things keep going in this direction. Thanks for checking in and we’ll keep you updated on how things are going. Saturday, August 19, 2006 8:33 PM CDT We saw Dr. Singh on Thursday and Riese still had a lot of fluid in her Pleural Cavity. He increased her diruretics for over the weekend and we go back on Monday to see if the fluid has gotten any better. If not, I believe that they will have to put in a chest tube to get rid of it. She has been quite crabby and hasn't been sleeping much because she is uncomfortable. This has been a really long week getting used to new meds, she is now on 8 twice a day and we are also trying to get used to the fat free diet. She has been doing pretty good with it but it is hard when she can only have 2 grams of fat per day. Monday, August 14, 2006 4:06 PM CDT Riese is home! Her potassium levels balanced out and she was discharged today at about 2:00. What a miracle to think she was admitted only 10 days ago for open heart surgery and she is already going home! I don’t think anybody, including all of the doctors and nurses that cared for her expected her to recover this fast. Thanks again to all that showed so much support and said an extra prayer for Riese. She is a truly blessed little girl to have so many people love and care for her. Lindsey will update again in a few days after things settle down and we have a check-up with Dr. Singh. Thanks again! Sunday, August 13, 2006 7:12 PM CDT
Sunday, August 13, 2006 4:10 PM CDT Just another day at the hospital. These days keep getting longer and longer! Riese is doing well with the exception of that fluid in her chest. Her x-ray this morning was the same as yesterday. They started her on a new diuretic along with her lasix hoping to dry her out some more. She got a dose of it a few days ago and they gave her another dose today, so hopefully her x-ray will look dry tomorrow so we can go home! She is doing alright with the fat free diet that she is on, but you can tell that she is loosing weight. We will find out tomorrow if we have to go home on the fat free diet and how long. Saturday, August 12, 2006 5:12 PM CDT Well, just another boring day at the hospital. But, we were able to go outside a couple times for a little while. Riese slept pretty good last night but woke up around 4 with a tummy ache. She is feeling pretty well right now, but is a little crabby, I think that she is sick of being here. Riese's X-ray looked better today, there is still some fluid on her right side of her chest but it seems to be drying up from the diuretics. Friday, August 11, 2006 1:08 PM CDT Riese's day is better today. Her x-ray was better this morning and Dr. Singh said that they are going to watch her over the weekend and hopefully send us home on Monday. Not much more news, Riese needs me at her bedside ASAP so I better go!
Thursday, August 10, 2006 1:23 PM CDT Well, we ran into a little set back this morning and arent planning on going home tomorrow anymore. This morning I noticed some oozing coming out of Riese's incision. I didnt think that it was a big deal but Dr. Singh looked at her X-ray this morning and she has built up some fluid on the right side of her chest. They started her back on IV lasix (diuretic) to "dry" her out. They also started her on an antibiotic just in case her incision was to get infected. She is quite crabby but is starting to feel a little better. They also started her back on potassium because the fluid loss decreases her potassium level. This medication is just terrible tasting but the pharmacy sent up some sprinkle potassium which did the trick in some ice cream.
Wednesday, August 9, 2006 11:57 AM CDT Riese had another great night last night. Her x-ray looked good this morning but there was a little bit of fluid in the lower right quadrant of her body, but Dr. Singh doesnt seem to be worried about it. I was going to update earlier, but the Minnesota Zoo came to the hospital to visit. Riese had a wonderful time looking at the animals! Tuesday, August 8, 2006 10:32 AM CDT We had a pretty good night on the 3rd floor. Riese slept pretty well, waking only to go potty. She is doing well today but is complaining of a tummy ache. Dr. Singh was in this morning and said that her x-ray today looked good. He said that if things keep going well, we might be able to go home on Friday!!! They are going to be turning off all of her IV meds this morning and the one thing that Singh is woried about is fluid retention. THey are switching her to oral lasix instead of the IV, so we will be watching closely for that fluid retention. Not much else is new! Riese is doing good and now that she is kind of in the clear, so are we. Thanks for all the prayers! I will get some new pics up soon after they turn the IV's off.
Monday, August 7, 2006 2:56 PM CDT Riese’s progress continues to amaze everyone! Her chest tubes and catheter were removed early this morning and we moved up to the 3rd floor! We all cant believe how well things are going and everyone in the hospital seems to be in as much shock as we are! We just continue to pray that things keep going in the right direction. Riese deserves this so much with all that she has gone through in the past. Her heart is in good condition now and Dr Moga hopes that it will stay that way for a while. One thing that he is concerned about is her atrial flutter. She isn’t in it right now, but that something that will be concerning for her heart. I asked him about the heart transplant and if it is still inevitable that she will have to get one, and he said that her heart could keep up for three months or twenty years…..he just doesn’t know. He would just like her to get as old as she can before that decision has to be made.
Sunday, August 6, 2006 8:59 AM CDT As you can see Riese continues to do well! She did great throughout the night last night and rested very well. She only had one dose of tylenol the last 12 hours because she keeps saying that she feels good and that she has no pain. I honestly cannot believe it! Two days post op and she woke up this morning looking wonderful and asked to eat some cereal. She had a few bites and then was back off to sleep. There is not much else to update about. The doctors haven't done theie rounds yet. But, if you were to ask me, things are going great and we hope to be moved upstairs to the 3rd floor soon! Thanks for your prayers!
Saturday, August 5, 2006 9:27 AM CDT As hard as it is to believe, this picture was taken 4 hours after Riese came out of major open heart surgery! She was doing so well that they took her breathing tube out 2 hours after surgery. Things are just going better than we all expected, including the doctors. She slept about 5 hours last night with the help of some Ativan (narcotic). She is quite crabby at times because all she wants to do is drink water and we cant give her much. We just got the order from Dr. Singh that she can have 2 ounces of Gatorade every 3 hours. She could probably drink 2 bottles every hour if we let her! She is now resting in her room thinking that I went to the Kitchen to get her something to drink. She seems to do better and rest better when we aren’t in the room. We wish we could be in there every second, but we just want to get her healthy and get her home. Thanks for all of the prayers and support from you all, they mean so much to us! I will update later today.
Friday, August 4, 2006 3:07 PM CDT Riese is recovering and doing well. She is already waking up and responding with shaking her head yes or no. They think that they are going to take the breathing tube out either tonight or tomorrow. We just cant believe how well things are going. She is pink for the first time in her life.....her lips, fingers and toes! Her saturation levels are at 98% right now which is great but a little too high for her. Dr. Moga wants them in the high 80's to low 90's. Things are going great but we were reassured that things can change in an instant, so please keep those prayers and happy thoughts comin'. I will update if anything changes tonight, if not...I will update tomorrow.
Friday, August 4, 2006 2:06 PM CDT The surgery is over and Dr. Moga is closing up her chest right now. We will be able to see her in about 40 minutes. Dr. Singh told us that her numbers right now are looking good. But, with the Fontan things can look good for one minute and the next minute it can change........so lets keep praying that everything stays good! We will update later with more news and more pics.............
Friday, August 4, 2006 12:58 AM CDT Dr. Singh just stopped by with an update……….they just finished getting through her chest cavity, which took about 2 ½ hours. There is so much scar tissue from her other 4 heart surgeries that makes it difficult to get through easily. They also just put her on the heart/lung bypass machine, which they usually don’t do with the Fontan surgery, but they felt it was necessary for her. We were reassured this morning by Dr. Moga that this is a risky surgery for her. The risk for a normal Fontan is 3 %, but after looking at a recent echocardiogram, the risk for Riese is 20%. He knows that she will be able to pull thorough this, he just doesn’t know if her heart will. So, please say extra prayers for our little one, she needs them………. Friday, August 4, 2006 8:55 AM CDT They took Riese in at 8:45. She was doing well when we left her. There is not much else to say but please say an extra prayer for her. This is going to be a long day, we will update when we find out more.
Friday, June 9, 2006 6:51 PM CDT The Cardio-version went well and the atrial flutter is gone…..at least for now. Dr. Singh started her on another medication to hopefully keep that flutter away for a while. Like I said yesterday, they did the cardio-version because she was in atrial flutter. This is when the atrium flutters instead of taking normal beats. When they checked her pacemaker yesterday, her atrium was fluttering at 300 beats per minute. But, since she has a pacemaker, her heart is in heart block and her ventricle is mostly what matters……..if that makes sense?!?!? She has been pretty crabby and irritable the past month and a half or so and they believe that the atrial flutter caused it because it makes her cardiac output very high. So, hopefully this new med will work and there will be no more cardio-versions before the next heart surgery……..which brings me to the next topic. They scheduled Riese’s 5th heart surgery for August 4th. They are going to be attempting the Fontan. So a couple more months of enjoying the summer before back at Children’s. It is hard to believe that at that time it will be a year and a half since Riese has had heart surgery, a new record!
Thursday, June 8, 2006 7:18 PM CDT Riese had her Dr. appointment with Dr. Singh and it didn’t go as I thought that it would. She had a pacemaker check first and they found out that Riese was in Atrial Flutter and that her atrium is fluttering at about 300 beats per minute. She is doing well and we are home but she is getting admitted into the PICU tomorrow morning at 7:30 to get cardio-verted, that is when they use the paddles to shock her heart. Her ventricle is beating normally between 90 and 180 beats per minute with the help of her pacemaker, which is good. This is all so hard and complicated to explain, but after tomorrow I will update with a better explanation. Her weight is still the same at 30 pound and is about 37 inches tall. We were also kind of shocked when we found that her saturation level was at 63%, a normal person ranges 98-100%. Well, I better go, we have to be up at 4 am tomorrow to get to children’s on time so I should get Riese to sleep! Once again, I will update as soon as I can with a better explanation and hopefully good news……..
Sunday, May 7, 2006 10:44 PM CDT HAPPY 3RD BIRTHDAY RIESE!!!!!!!!! Monday, April 17, 2006 5:29 PM CDT Riese’s procedure is over and we are home! Everything went really well today. They ended up only putting caps on 2 of her molars. The dentist thought that the enamel on those two teeth were defective and that was why they were so easily prone to getting cavities. They also did an echocardiogram and nothing has changed since the last time. Dr. Singh wants her to have her next heart surgery (fontan)in July, but the exact date has not been set yet.
Monday, April 17, 2006 8:07 AM CDT We are at Childrens for Riese's oral surgery. We see Dr. Singh at 9 and I guess that we will go from there. Please say an extra prayer for her. We will update later as soon as we can. Monday, April 10, 2006 9:23 PM CDT Riese’s oral surgery is scheduled for next Monday, April 17th around 11 a.m. We have to be at the hospital at 9 so Dr. Singh can look her over. We are not exactly sure what they are going to do with all of her teeth until they put her out. We do know that she has at least two cavities and they are going to put caps on, do root canals or remove them. Sunday, March 12, 2006 10:52 PM CST Well, I wish that I could say that Riese’s dentist appointment went well, but before preparing her for her next heart surgery, we have to prepare her for oral surgery first. During the oral exam, the dentist could see that she has at least two cavities, and maybe some more. They won’t know all of the problems with her teeth until the day of surgery when she gets put under and they can do some x-rays. The two known cavities are her upper two molars. They plan on just capping one, but the other one they are either going to do a root canal or remove the tooth. They are worried that if they don’t do one of the two to the more damaged molar, the infection could get into her blood stream which could lead to endocarditis. Endocarditis is a life-threatening inflammation of the lining of the heart muscle and its valves. It is caused by a bacterial infection. Although endocarditis can occur in anyone, it is more common in people who have heart valve disease, have had heart valve replacement surgery, have a congenital heart defect, or have had recent heart surgery. So, as most of you know, Riese has had heart valve replacement surgery, a congenital heart defect and had 4 heart surgeries before the age of two. All of this information is so scary, but if we get those teeth worked on soon, everything should work out just fine. The surgery is going to be at Children’s in Minneapolis and recovery could be a few days and hopefully no longer than that. We are hoping to find out this week when the surgery is going to be. So, just a reminder of how important it is to go to the dentist!!!!!!!! Thursday, February 2, 2006 12:33 AM CST Riese's last Dr. appointment with Dr. Singh went well. We don't have to go back for another check-up until April. At that time they are going to be scheduling her next surgery...the Fontan. Dr. Singh said that she will probably be able to wait until after July 4th.....so then we can have a little time to enjoy another summer.
Sunday, December 11, 2005 6:46 PM CST I know that I told all of you that I was going to update last month, but things, as always, have been very busy. Riese has been doing well, with the exception of having some flu like symptoms this week. She did get her flu shot again this year, so we know that it isn’t that, but she was throwing up earlier this week and hasn’t had a normal stool in six days. They did a blood test Thursday to check her electrolyte level and it came back normal. We brought in a stool sample to the hospital yesterday so they can check for Rotavirus, but we wont know those results for probably a few days.
Wednesday, October 26, 2005 1:34 PM CDT Just a quick update......................the heart cath is finished and Riese is now recovering, which is why I don't have time to write much. The overall procedure went well. Her CVP level was at 9-10, which is great!!! So, Dr. Singh said that we can plan on doing a Fontan (and not a heart transplant) and that we can wait until I am done with Nursing school...which will be mid June. So, GREAT NEWS!!!!! I wish that I could write more, but I have to get back to Riese! I will update in a couple days with a better update.
Wednesday, October 26, 2005 10:13 AM CDT Riese went in for her heart cath this morning at 9:45. I will update later when we find out some more news. Thanks for everyones support! Sunday, August 28, 2005 3:07 PM CDT It is hard to believe that the summer is almost over! Riese’s last appointment with Dr. Singh went well. We have scheduled her heart cath for October 26th, and at that time they will determine where her CVP level is at. We will then find out about her next heart surgery. Dr. Singh thinks that they will be doing the Fontan with a bigger fenestration and not a heart transplant, but we won’t know for sure until they are done with the heart cath.
Wednesday, June 8, 2005 6:26 PM CDT Hi everyone! I apologize for not updating last week after Rieses appointment, but we had a busy end of the week and we just got back from vacation in Wisconsin. Riese’s appointment with Dr. Singh went well. This was the first Echo they have done since we left Children’s after her 4th heart surgery in March. Her new metallic valve is looking good and her heart and liver have decreased in size. They also checked her pacemaker, which also looks good, and made a few minor adjustments with that. Dr. Singh is happy with her overall progress. We don’t have to go back for a check-up for two months. Then a month after that, they will plan on doing a heart cath, where they will decide if she needs a heart transplant or if her heart could ever handle the Fontan. So, now we are going to enjoy our summer, and try not to think of what the next year could bring.
Wednesday, May 18, 2005 3:47 PM CDT Just a quick update.......Riese is walking!!! She is still a little nervous to let go of things, but she is doing it all by herself! She is still doing well. We see Dr. Singh June 1st. They will be doing an echocardiogram and the basic other things like x-ray and checking her oxygen levels and her blood. Please pray that everything looks good!!! I will update after that appointment! Hope all is well with all of you....check out the new pics!
Sunday, May 8, 2005 6:10 PM CDT Well, our little girl turned two yesterday!!!!! Although the weather didn’t cooperate, we had a wonderful day. She got lots of fun gifts and Barney even showed up! It is hard to believe how fast these last two years have gone. Riese is doing very well! She is getting closer to walking by herself and her favorite new thing to do is color. We had a checkup with Dr. Singh this past Tuesday. It went very well. Her heart is finally shrinking in size and so is her liver. Her oxygen levels are also the highest I think I have ever seen them, they usually run in the high 60’s to 70’s and they were in the low 80’s this time! Her weight is also increasing! She is now 23 lbs. 4 oz. She is finally starting to get a little belly and some meat on her bones!
Wednesday, April 13, 2005 12:06 PM CDT Riese had her doctor’s appointment on Monday and things went well. Her heart is still enlarged but Dr. Singh said that it should slowly start to shrink. Since the heart is still quite enlarged, he wants to wait about 6 months to do a heart cath in order to get an accurate CVP level reading. As most of you know, the CVP level will determine if she could handle the next surgery….the fontan or if she needs a heart transplant. So, we won’t really know anything about Riese future until the end of summer or early fall. We will now have monthly visits with Dr. Singh until then, unless he thinks that we need to do the heart cath sooner.
Thursday, March 31, 2005 4:15 PM CST We are home and Riese is doing well! Besides the fact that she isn’t sleeping very well, she is getting better every day. We were discharged from the hospital on Tuesday around noon and we were so excited to get out of there. Tuesday, March 29, 2005 12:17 PM CST We are going home!!!! I wish that I could write more but Riese REALLY wants to go home! I will update soon Monday, March 28, 2005 12:35 AM CST We hope you all had a great Easter. Although Riese wasn’t able to be home, she still had a great day. She was in a fabulous mood and even went on an Easter egg hunt. She has been doing well these past few days and we are hoping to go home tomorrow. I would write more, but Riese is waiting in her wagon and keeps saying “ride”, “ride”. I will update more tomorrow! Thanks again for everything Friday, March 25, 2005 2:33 PM CST We are on the 3rd floor! For those of you that don’t know, the 3rd floor is a great sign that we will be going home soon. The 3rd floor is the step up from the PICU. Riese will no longer have one on one nursing care, it is more like a 2:1 ratio. She has no more I.V. medications on, all that is being pumped through her I.V. is her TPN and lipids (nutrition). Her eating is getting better each day. Her liver is still really enlarged so it is hard for her to eat a big full meal. Her heart, lungs, pacemaker and everything is sounding good. The only thing that is holding us back now is the Coumadin. They keep upping the medication each day hoping that we will find the exact dose soon. Dr. Singh said that we will probably be able to go home sometime next week, probably in the middle of the week. It is a major bummer that we won’t be home for Easter, but as long as we get to go home, I don’t mind.
Tuesday, March 22, 2005 2:21 PM CST Riese is looking better every day! Most of her fluid weight has past, her lungs are mostly clear, and her heart is sounding better. The chest tubes are still in but planned to be taken out tomorrow morning……we will see about that. She still has a leak and they don’t want to take them out too soon. She did develop Rotavirus a couple days ago. It is a gastro intestinal virus which makes it hard to hold any food or liquid “down” or “in”, if you know what I mean. It is very contagious so we have to be careful when we change her pants or clean up her throw-up. We are hoping that will only last a few more days. The Doc’s also started her on Coumadin today. Coumadin is a blood thinner that she will have to take because of her valve replacement. The drug is what is probably going to hold us up at the hospital the longest. They have to find out her exact dose before we bring her home. They have to make sure her blood isn’t too thick or too thin. And Coumadin is more effective when the patient is eating normally, so Riese needs to start eating and holding it in. Sunday, March 20, 2005 3:48 PM CST As you can see by this picture, Riese seems to have done a complete 180 from two days ago. Her lungs are clear of mucus and now only has one night left of Bi-Pap! She went all day today without Bi-Pap and could probably go all night too, but they want her to get some more rest so they decided one more night on it would really help her. She is still very, very weak though. Her body parts shake whenever she tries to lift them and has hardly enough energy to do anything. They started her on TPN and lipids, which is nutrition that goes through her I.V. Her tummy hasn’t been able to handle anything, not even water or juice. She hasn’t had anything to eat for 6 days, so they had to start her on some kind of nutrition to get her energy and strength back.
Friday, March 18, 2005 5:04 PM CST Well, I don’t really have good news but not really bad news either. We just hit a little bump in the road. Riese had an x-ray last night around 6 and it showed that her right lung was full of mucus. They were really close to intibating (breathing tube put in) her again but decided to put her on a machine called a Bi-Pap. As you can see by the pictures, it isn’t very fun to look at or very comfortable for her. But, after getting used to it, it doesn’t bother her that much. They Bi-Pap is kind of like a ventilator without having to put a breathing tube down her nose. It is supposed to get air to her lungs to help get rid of the mucus. It seems to be working, while she is on it her oxygen levels are in the 80’s….which is really good. She just got another x-ray and it showed that her lung had cleared a little bit since morning, but not enough to take her off Bi-Pap. So, we are hoping that over night her lung will clear, if it doesn’t they will have to do a bronchoscopy which is a probe that will go into her lung to get rid of the mucus. They also had to put a catheter back in her last night because she wasn’t peeing. They did an ultrasound on her tummy and she had 500 cc’s (ml’s) in her bladder. Dr. Moga also plans on finally taking out her chest tubes tomorrow. They usually take chest tubes out within two days, but since this is her 4th heart surgery, she has extra blood and air in her chest so they are unable to remove them.
Thursday, March 17, 2005 3:48 PM CST Riese got her breathing tube out around 11:30 this morning. They also went ahead and turned on her own pacemaker, which seems to be working well for her. They weren’t able to take out her chest tubes because they were still draining blood and air….they plan on taking those out tomorrow. She is still very puffy, she can barely open her eyes, so they are giving her more lasix hoping that she will go pee.
Thursday, March 17, 2005 10:24 AM CST Just a quick update.......Riese will be getting extibated (her breathing tube taken out) any time now. We just have to wait until she wakes up. She also got her temporary pacemaker turned off and her permanent pacemaker turned on. That is all for now, I will update as soon as I get a chance! Tuesday, March 15, 2005 2:40 PM CST Riese successfully made it through her 4th heart surgery. Although they only did the valve replacement and not the Fontan, the doctors are very happy. They decided to not do the fontan because the pressure in her lungs were too high. They are supposed to be around 15 or so and they were at 30……way to high for a successful fontan. They also decided to put in a pacemaker because her heart isn’t beating at a normal rate (it hasn’t for most of her life). So, now the plan is to let her heal and go home and then they want to see her in 3-4 months. During that check up they will be doing a heart cath which will determine what the pressure is like in her lungs. After they do that, they will then decide if she could handle a fontan procedure……if not, they think that she will need a heart transplant. Tuesday, March 15, 2005 11:27 AM CST Riese went into surgery this morning at 8 a.m. We just talked to Dr. Singh and he told us that they are probably just going to do the valve replacement. They don’t think that her body is ready for the Fontan yet because the pressure in her lungs is too high. So, they are replacing her valve right now and when they are done doing that they will look at her numbers again and reassess if she is ready for the fontan when they close her heart up. If they don’t do the fontan, we will probably be back here in 5-6 months to do a heart cath to see when she will be ready for the fontan.
Wednesday, March 9, 2005 5:37 PM CST It is hard to believe that in just six days Riese will be having her 4th heart surgery. It’s coming up so quickly. The plan for her is as follows……She has a pre-op this Friday in the cities with Dr. Singh. Then, on Sunday they want to admit her into the hospital to prepare her for surgery on Tuesday. They want to do this to make sure that her heart is definitely ready for what it is about to go through. They are going to be replacing her Tricuspid valve and also decided to go ahead and do the Fontan…the last stage surgery of the Norwood procedure. This is what the Fontan is……….The blue blood from the lower part of the body is sent to the lungs. This is done by using the inferior vena cava, the right atrial wall and artificial material. A tube is placed through the top right part of the heart and connected to the right pulmonary artery branch. This rerouting of the blue blood allows it to enter the lungs without being pumped to the heart. The heart remains available to receive the red blood from the lungs and then pump it to the body. Some small holes are placed in the tube to allow the heart and body to adjust gradually to the new blood flow system. These small holes (fenestrations) close off on their own a few months after surgery. The surgery goal is to: separate the red and blue blood, have the blue blood enter the lungs directly, have the heart as the pump for oxygen rich blood and then replacing the only valve that she has…the Tricuspid valve with a metallic valve.
Friday, January 28, 2005 11:20 AM CST Well, I wish that I had good news, but I don’t. They did an echocardiogram, EKG and an X-Ray on Riese yesterday at her appointment and Dr. Singh wants to do another heart surgery in a month. The plan is to replace her valve. Her right and only ventricle is just getting to weak, do to her leaky valve, to wait any longer. The original plan was to replace her valve and to do the fontan (the final stage of the Norwood procedure) at the same time sometime this summer. But now they are going to do two separate heart surgeries. Dr. Singh is hoping that the fontan can wait a year after the valve replacement.
Monday, December 27, 2004 7:53 PM CST We hope that you all had a great holiday season!!! Ours was pretty busy; having about 6 or 7 Christmas parties was exhausting, but so wonderful to see everyone. Riese has been doing pretty well. She was a very spoiled little girl for Christmas, getting everything from a Magic cook kitchen to a Video Now DVD player. She loved opening gifts, but she hated Santa Claus! I suppose the beard reminds her of Dr. Singh, her cardiologist (no offence Dr. Singh, you know we love you!) Maybe next year she will warm up to both Santa and Dr. Singh!
Tuesday, November 30, 2004 5:02 PM CST We hope you all had a Happy Thanksgiving!!! Sorry for not updating sooner, but things have been busy since I went back to work. We had a check up with Dr. Singh yesterday. He said that things are looking alright. Her Right atrium isn’t quite as enlarged anymore and her valve isn’t any better, but it isn’t any worse. He said that they have done everything they could for her valve, and unless some kind of miracle happens and it grows tighter on its own, they are going to have to replace it with her next surgery-the Fontan. When we left Children’s after this last surgery, they said to plan on her next surgery to be late next Summer or Fall, but now they are telling us to plan on next Spring or Summer…….way too soon, I think. But, they know best and doing surgery sooner rather than later is the best plan for Riese and her heart. Dr. Singh also told us that she needs to put on some weight…..trust me, I am trying!!! Ever since her last surgery she hasn’t been eating much at all. She has lost 1 ½ lbs in three weeks (some of it was fluid from surgery) and is down to 21 ½ lbs. He said that her weight is pretty good especially for having such a serious heart condition, but the fatter she is for her next surgery…the better!
Wednesday, November 3, 2004 4:35 PM CST Wow, it is such a great feeling to be home with Riese! She is still pretty sick and recovering from surgery, but she is getting better each hour that passes. I made a nice big bed for her in the living room so she can rest and watch Elmo. Her body is pretty sore so we aren’t able to hold her very much, so we have been “vegging” out and relaxing the last couple of days.
Monday, November 1, 2004 9:09 PM CST Just another quick update for all those that are wondering what’s going on. We were discharged from the hospital today (Monday) at about 1:00. They did an EKG and an Echo this morning and everything looked fine. Riese is still feeling a little under the weather but that is to be expected. What a great feeling it is to only be at the hospital for six days and not six months WOW! Again, we would like to thank everyone for all the prayers and support, it’s absolutely amazing! We’ll update in more detail in a couple days when things settle down and start to get back to normal. Thanks for everything Monday, November 1, 2004 10:34 AM CST Just a quick update. Riese is doing well and we are hoping to go home today. She had an echocardiogram and an EKG earlier this morning and the docs are looking at them right now. I will update when we find out more about her heart and when we get to go home! Friday, October 29, 2004 9:53 AM CDT Riese continues to get better as the hours go by. She is starting to be awake a lot more and starting to get her normal spunky little attitude back. She has been watching a lot of Elmo and eating popsicles and cookies when she wakes up. We even managed to get a smile out of her last night, which is really amazing considering what kind of condition she was in just 12 hours before that. We are absolutely amazed at how fast her recovery process is going. Dr. Singh (her cardiologist) said we might be able to get out of here as early as this Monday, which would make our stay here less than a week! Even though we are very excited about this and her rapid recovery, we are still not sure of the outcome of her surgery. At this point all we really know is that it didn’t make anything worse, we probably won’t find out the real accurate results until they do an echocardiogram. They say they’re going to do that right before we’re ready to leave. Overall, things are looking very positive right now and we pray that it keeps moving in this direction. Thanks again for all the prayers and support, it’s very comforting to know that there are so many people that care. Talk to you soon.
Thursday, October 28, 2004 11:37 AM CDT Riese’s recovery process is starting to pick up and we are making some major progress. This morning she got her chest tubes out and was extibated (breathing tubes removed). She also had her catheter removed and some other additional lines that were in her. She was taken off the morphine for the time being and is starting to wake up occasionally. She is still “out of it” but is starting to come around. We’ll keep updating as her progress continues. Thanks for the prayers and support it is truly amazing!
Wednesday, October 27, 2004 11:03 AM CDT Please pray for Riese right now as she recovers. She isn't very happy and is now on even more medicine. I will update later in the day when we know more about what is going on with her. Tuesday, October 26, 2004 3:53 PM CDT Riese made it through surgery and is now recovering in the PICU. All of the doctors and nurses are saying that she is doing very well. I have to admit that I was so scared letting Riese go this morning, handing her over to the anesthesiologist and into the surgeons hands. There was and is a risk of Riese having heart failure and that was so devastating to hear. But, now she is out of surgery recovering well, I think a lot better than everyone expected. Thank you all again for your prayers….your support means the world to us! I will update again tomorrow with better detail, but until then, we are off to spend time at Riese’s bedside. Please keep praying for Riese during this critical time of recovery.
Tuesday, October 26, 2004 9:37 AM CDT Riese went into surgery this morning at 7:30 and we just got word about 20 minutes ago that the procedure started. They are going to try to repair her valve first and then take her off the heart/lung machine and then do an echocardiogram to see how it is functioning. If it doesn’t look very good, they will have to put her back on the heart/lung machine and replace her valve. There is also a pretty good chance that she will be getting a pacemaker put in. Dr. Moga (her surgeon) is just hoping that her heart will be able to handle all of this stress and also that they didn’t wait to long to fix her heart. Please pray for Riese and pray extra hard that her heart doesn’t fail. We know that Riese is a very strong little gal and she will try her hardest to pull through this very risky surgery. Thanks to all of you for your support, prayers and guestbook entries……they mean a lot. I will update this afternoon after she comes out of surgery. Sunday, October 10, 2004 8:02 PM CDT Riese’s next heart surgery is scheduled for October 26th at 7:30 in the morning. This is sooner than we thought, but the doctors think that it would be better for Riese if they did surgery sooner rather than later. Right now the plan is to either replace or repair her valve (they will decide that probably when they get into her heart and see exactly what her valve looks like), remove part of her heart that is enlarged and they also want to do a procedure that will get rid of her irregular heart beat (atrial flutter). Dr. Singh told us that this is going to be a major and risky surgery. He also said that if the surgery goes well, we could even make it a year or more before we have to go back for her 4th heart surgery (the fontan). Friday, October 1, 2004 3:24 PM CDT Hello everyone, I am so sorry for not updating sooner, but Riese didn’t do as well as we thought that she would. The anestisiologists had a hard time putting her out for her heart cath, and they also had a hard time putting in the lines. They had to put a line in her groin and a line through her neck. They had a difficult time doing that because most of her veins have been used up from all of the other surgeries that she has had. Once she fell asleep and the lines were in place, there were no problems in the heart cath lab. But, after it was all over (it all took about 5 hours) and she started waking up, her heart was beating in the 200’s and she was very stressed out. Brent and I went into the PACU (post anastisia care unit) to try to calm her down. After about an hour and a half, her heart started beating more normally and she became a little more relaxed, and then we headed to the PICU. Her cardiologist wanted us to go to the PICU so she could get some extra care because she wasn’t doing as well as we all thought that she would. We ended up spending only one night there and then Dr. Singh released us the following morning.
Monday, September 6, 2004 6:17 PM CDT UPDATE: Monday Sep. 13th
Sunday, August 29, 2004 3:42 PM CDT Hello everyone! We are going to the cities Friday to have a checkup with Dr. Singh. I will update on Sunday and let you all know how everything goes. He will be doing an echocardiogram on her to see how well her heart is working, so say an extra prayer that he says everything is well. Depending on how her heart is looking, he will be scheduling a heart cath for either that day or sometime in the future and that will determine when her next heart surgery will be. Riese has been doing well lately…she now has 16 teeth and her favorite new thing to eat is apples!! Thanks for checking in and I will update on Sunday! Sunday, July 25, 2004 7:01 PM CDT We hope you all are having a great summer! I am sorry for not updating this last month, but since moving into our house, things have been pretty crazy. Riese is having a wonderful summer. I often think about what Riese was going through at this moment last year. Last summer at this time she was recovering from her 2nd open heart surgery. She had run into a few problems with her heart beat which led the doctors to “shock” her heart a few times, also known as cardoverting. They had also found that during her surgery, her diaphragm had been paralyzed……which lead to another surgery (diaphragm placation) only about a week later where they also placed a pacemaker wire into her right atrium. They were also getting ready to extibate (remove the breathing tube out of her nose) her and reinsert her trach. She was only eating between 1-2 ounces every few hours and ended up having horrible drug withdrawals which kept us in the hospital even longer. This list could go on and on with these setbacks that she had.
Monday, June 7, 2004 10:40 PM CDT Riese’s Cardiology appointment last Thursday went well! Dr. Singh said that she looks very well! They took a chest x-ray and he said that her heart was a little enlarged, which is due to her leaky valve. He told us that this is normal with kids who have valve leakage and that it is nothing to worry about. We got the okay to stop Didgoxin, which is a heart med for heart failure. She is still taking 6-7 meds a day, but eliminating one is actually really exciting. I just hope that one day she will not have to take any! We will be planning a trip to see Dr. Singh again in 3 months. At that appointment, they will do an echocardiogram (ultrasound of the heart). After they take a look at that, Dr. Singh will probably schedule a day to do the heart cath. Depending on how her heart looks, they could schedule a heart cath for that day or a couple months later. Then, after she gets her heart cath, we could be scheduling a date to have her Fontan….her 3rd heart surgery.
Tuesday, May 25, 2004 9:05 PM CDT Just a quick little update…..Riese went to the pediatrician and she now weighs 20 lbs. 3 oz. and is almost 30 inches long. He said that she is looking and doing really good! She sees Dr. Singh (her cardiologist) next Thursday, June 3rd, so I will update after that! Not much else is new! Riese is becoming quite independent! She is eating well and growing fast! Thanks for checking in and I will update again next week!
Sunday, May 9, 2004 4:40 PM CDT OUR LITTLE MIRACLE IS ONE!!!
Monday, April 19, 2004 10:03 PM CDT Hello again! Riese is still doing wonderful! She did get really sick a couple weeks ago with pink eye in both eyes, an ear infection and a cold, but is now back to herself! She saw the pediatrician last week and she is now over 19 lbs. She also has 9 teeth and another about to come in. She is getting so big and it is hard to believe that she is going to be one in a couple of weeks!
Monday, March 22, 2004 10:17 PM CST As you can all see by the new pictures, Riese is still her smiley self! She did get a little stomach virus a couple weeks ago, but we are happy that has now passed! She lost a little weight, but her eating habits picked up again and she is now almost 18 lbs. Along with the virus, she was in the process of getting new teeth. She now has four on the bottom and the top four are all coming in at the same time. I thought that she would be a lot more unhappy, but as the new teeth came in, they didn’t seem to bother her one bit. It doesn’t really surprise me though; she is a lot tougher than a lot of us!
Tuesday, February 17, 2004 9:52 PM CST Our little girl is growing up so fast! Riese is now 9 ½ months old. She has developed quite a personality lately. She smiles just about 24 hours a day and loves to play all of the time. She rolls everywhere around the house and is sitting up all by herself and just lately she started standing! We think that she will start walking before she starts crawling! Riese also got a new tooth! So, she now has 3 teeth on the bottom and no teeth on top, it is kind of funny looking, but she is still the cutest thing ever! She has grown up so much this past month and we look forward to all of the new things she will start doing in the months ahead.
Thursday, January 1, 2004 4:23 PM CST Happy New Year! We hope everyone had a great holiday season! It was a pretty hard and eventful 2003 to say the least, but we made it through. After being blessed with a baby girl on May 7th, we found out that the road ahead of us wasn’t going to be easy. After spending over 5 months in the hospital and seeing Riese go through what she had, we are so grateful to have our precious little girl home with us.
Friday, December 12, 2003 8:42 AM CST Hello, just a quick update to let everyone know how Riese is doing. Sorry its been so long but we have been very busy with Riese. The past few weeks have been very good! Since the last update we have been back to the hospital twice. The first time to get her broviac removed ( a line that was left in her so they could draw labs) and the second time (yesterday) to get her stoma or her “trach hole” fixed up. Dr. Sidman, a pediatric plastic surgeon did the procedure and promised us that you won’t even be able to see the scar where her trach had been, so that is great news. Other than that we are leading a fairly normal life with Riese with the exception of the daily meds she has to take. She now weighs just under 16 lbs. and seems to be getting bigger every day. She is really starting to take off developmentally as well. We are very excited to keep watching her grow and develop into the rambunctious little girl she is becoming. From now on we will try to update the site every few weeks to a month to keep everybody posted on what is taking place in Riese’s world as she continues to grow and develop. Again, thanks to all that have said their prayers for Riese, they really seemed to help. She is definitely a real “miracle baby” and we are very blessed to have her here for the holidays and the many many long years to come. Thank you and we wish everyone a Happy Holiday Season!!!
Monday, November 24, 2003 12:50 AM CST We are sorry we haven’t updated sooner, but Riese has been keeping us busy these past couple of weeks. Although we have been busy with her, things are going great! She had her first trip to the Mall of America and to Bubba Gump Shrimp. She was so good the whole time we were there, we were so proud of her. She also sat up for the first time by herself last night! Even though it was only for about 10-15 seconds, she was very content and did very well.
Thursday, November 6, 2003 9:42 AM CST We have some exciting news!!!! Riese’s teeth have arrived! Both of her lower teeth came in this week…….finally! She is even cuter than she was before!
Thursday, October 30, 2003 9:17 AM CST It has been two weeks and two days that we have been home as a family and things are going wonderful! She is finally getting used to home and used to normal things. She is still getting us up about three times each night, usually to eat, but her sleeping is getting better every night.
Wednesday, October 22, 2003 9:14 AM CDT It has been one week that we have been home with Riese, and things are going wonderful! There have been a couple nights that she kept us up at night, but it hasn’t really bothered us a bit. We are enjoying her so much and haven’t taken one second for granted.
Wednesday, October 15, 2003 9:30 AM CDT WE ARE HOME!!!
Saturday, October 11, 2003 10:05 AM CDT It has been another wonderful week for the princess!!! She has no more tubes connected to her and she is definitely ready to go home! Her trach has been out since Monday and her breathing is going very well. Her Milrinone has also been shut off since yesterday and she is handling that very well also. Yesterday was the first time we have been able to hold her with no cords or tubes connected to her since she was born. She finally seems like a normal baby.
Monday, October 6, 2003 10:06 AM CDT THE TRACH IS OUT!!! THE TRACH IS OUT!!! THE TRACH IS OUT!!!
Monday, October 6, 2003 10:06 AM CDT THE TRACH IS OUT!!! THE TRACH IS OUT!!! THE TRACH IS OUT!!!
Wednesday, October 1, 2003 11:41 AM CDT Riese has had such a wonderful week! We were able to go outside once again and every day we take a walk around the hospital. We are getting so excited because we think that we are going to be able to go home in a couple weeks! We are trying our hardest not to get our hopes up too high, but it is really hard not too! Friday, September 26, 2003 7:23 PM CDT Our little one has been having a wonderful week! We haven't been able to go outside again because of the cold and windy weather, but we have been able to walk around the PICU unit and the hospital. She loves to get out of her room and look at new things!
Monday, September 22, 2003 4:43 PM CDT HAPPY, HAPPY DAY!!!! Riese got to go outside today for the first time since she was born!! It was so wonderful!! She went on Trach collar this morning again and we decided that it was time for her to enjoy a little sunny weather. She absolutely loved every second of it. She seemed to be a little confused and suddenly realized that there was more to life than being stuck in an 8 x 8 room. She loved the light wind and the sunlight on her face! We just pray that we can have more days like this one soon (and we know that we will!)! We thank Riese’s primary nurse Sue and another nurse named Deb for the wonderful experience. Thursday, September 18, 2003 2:54 PM CDT Miss Riese has been having a wonderful couple of days!!! She is now on 24 hours of C-PAP today and is doing wonderful with that! We also did a trial today on the trach collar. We didn’t want to push her, so we only went for 20 minutes. She did alright, but it is going to take time to get used to it. It took her about 3 weeks to get her to 24 hours of C-PAP and we are hoping that it won’t take much longer on the trach collar.
Monday, September 15, 2003 3:28 PM CDT Hello everyone! We are so sorry for not updating sooner, but we actually got to go to Alexandria for the weekend. Everything in the hospital is going alright. Slowly but surly we are getting closer to getting out of here. Sunday, September 7, 2003 4:25 PM CDT HAPPY 4 MONTH BIRTHDAY RIESE!!! Sunday, August 31, 2003 3:57 PM CDT Well, as you can see by the new pictures, Riese has been doing very well! We have realized that our stay here is going to be longer than we thought. Since we took so many big steps backwards last weekend, we are going to have to take smaller steps forward.
Wednesday, August 27, 2003 1:58 PM CDT Well, the last couple of days have been good, but Riese had a really tough weekend. She kind of told us that we were going a little too fast, and she just wasn’t ready. So we had to take a couple steps backwards. On Friday, one of her “happy drugs” (methadone) was taken away from her. She was really irritable and inconsolable for a few days, so the docs started her back up on it. She will be getting it 3 times a day for a few weeks and maybe even a few months to wean her off of it again, but Dr. Singh (her cardiologist) told us that we can go home with it. It is so sad knowing that she is addicted, but she is so much more comfortable now. The wean is going to be slow, but she will hopefully be done with it soon.
Friday, August 22, 2003 7:07 PM CDT We have great news!!! Riese had her Bronchoscopy at 4 o’clock this afternoon. Dr. Sidman came back with the wonderful news that everything looks great and as soon as she gets off of the trach collar, the trach will be removed!!! Dr. Singh came in the room soon after Riese returned and he said that the trach could be gone even in a couple days. Even though we aren’t getting our hopes up that it will happen that quickly, we are relieved that everything is healed and we will be going home without the trach! He also told us that we may be home within a couple weeks!! It is so crazy to think that we are actually going to be out of this hospital soon and living a normal life!!! Wednesday, August 20, 2003 4:37 PM CDT Little Miss Riese has been improving quite well these past few days! She is still on the vent, but the weaning is going well so far. She is now off C-PAP and now on the trach collar….the next step closer to being off of the vent. The difference between C-PAP and trach collar is that on C-PAP, the vent was still connected to her trach giving positive pressure, but with the trach collar, the vent is taken off of the trach giving no ventilator or pressure assistance. We are doing the trach collar twice a day for two hours at a time. We were going to try to go all day today with the trach collar, but the doctors and nurses said that it would be better to just take our time and increase an hour or so every couple days. Saturday, August 16, 2003 2:43 PM CDT Our little princess has once again had a few good days! Her vent rate is down to 10 breaths per minute and we started her on C-PAP. On C-PAP, Riese will breath totally on her own with positive pressure coming from the vent. At the moment, we are only doing C-PAP for 15-30 minutes twice a day. The nurse said that when kids can handle being on C-PAP for around 4 hours, it is likely the vent isn’t needed. Riese’s first trial on C-PAP was this afternoon around 1:15. She went the full 30 minutes and she did very well! Dr. Singh (her cardiologist) was very impressed and he hopes that maybe the ventilator will be gone in a week or so!
Wednesday, August 13, 2003 1:18 PM CDT Well, little Miss Riese has been doing really well these fast few days! She got over her last surgery (diaphragm placation) really fast! Now we are on the road to recovery and getting her home! Wednesday, August 13, 2003 1:15 PM CDT Well, little Miss Riese has been doing really well these fast few days! She got over her last surgery (diaphragm placation) really fast! Now we are on the road to recovery and getting her home! Friday, August 8, 2003 12:18 AM CDT We are proud to announce that our little miracle girl made it through another surgery! She went into the operating room this morning around 8:45 a.m. and was out at about 10 a.m. They successfully fixed her diaphragm and put in an atrial pacemaker lead and ended up not putting in the pacemaker. She is looking good but in some pain. They numbed up the area where they did the surgery and are giving her some morphine and chloral (a pain med) to numb the pain. She will hopefully be herself in a couple of days, so we can’t wait to get some more smiles out of her! We hope you all enjoy the pictures! She was being a little stubborn and would only smile when the camera was out of her face. We thank you all once again for all of your love and support. Hopefully we won’t have to go to that operating room again for a long time! We realized today that she has been in there 7 times, it’s hard to believe! Thanks again!! Tuesday, August 5, 2003 1:30 PM CDT Well, it looks like we will be heading into the operating room once again this week. They have decided that they are going to go ahead and do a diaphragm placation probably this Friday. The doctors feel that since she is doing good, they would rather not wait and just get it done so we can maybe go home a little earlier. The other news that we got is that they are going to be putting an Atrial Pacemaker wire in her right atrium. They feel this is necessary because her heart is still beating irregularly and just in case she does need a pacemaker, the wire will be there, ready to go. So that leads us to another possibility, they might be putting in a pacemaker too. Dr. Moga (her heart surgeon) said that he wants a couple days to think about it and wants to run it across Dr. Singh (her cardiologist). It is a very scary thought, but I was reassured that the pacemaker would be there to help her heart function a little better and beat at a more normal rate. So even though she could probably live without it, it might be the best thing for her and maybe we can get home a little more quickly. They also told me that if it is put in, she might not need it forever, so that’s another plus.
Wednesday, July 30, 2003 3:16 PM CDT Riese is 12 weeks old today! As good as she looks, we were surprised to get some bad news yesterday. She went in for an x-ray in the afternoon and they realized that the right side of her diaphram is paralyzed. Dr. Singh (her wonderful cardiologist) doesn’t believe that it is going to get better. So within a couple week they are going to do another x-ray, and if it doesn’t look like it is getting better, they are going to have to do another operation. They will go in from her side and put some stitches in her diaphram so it will stay down. As depressing as this is, they hope that they can take her off of her ventilator a couple days after the surgery. So even though it is really bad news, hopefully some good will come out of it. If she doesn’t need the ventilator, she doesn’t need the trach, and then hopefully we can make some plans to get out of this place!!! She is back to her smiley self and is adorable as ever!!! She weighed 9 lbs. 14 oz. today, so she is getting beefed up! Thank you all again for your support, we love you all !!! Riese will be 3 months old next Thursday, so we hope to get some more wonderful new pictures up on the site! So make sure to check back! Friday, July 25, 2003 10:41 AM CDT Hello everyone!! Riese has been doing excellent these past few days. There were a couple setbacks in the beginning of the week, but they don’t seem to stop her from wanting to get better! On Monday morning they had to shock her heart because she was having an atrial flutter (an irregular heart beat), as scary as that sounds it seemed to work and the flutter is gone, hopefully for good! She also had her pacemaker wires hooked up to the pacemaker for a few days to help that flutter too, but that is now turned off also. Her weight did get down to 8 lbs.13 oz. yesterday. She is only getting 6 cc’s (ml) an hour of formula which is only a little bit more that 1 oz. every six hours, but soon we will start bottling again and beefing her up! They also took her breathing tube out of her nose yesterday and put her trach back in. She is so much more comfortable now and hopefully soon we can start weaning her off of the vent and we can take that trach out! There seems to be less and less wires and cords everyday! She looks so wonderful and we can’t wait to hold her in our arms again. We want to thank all of you again for all of your love and support. We are now on our road to a hopefully great and speedy recovery! Thanks again, we love all of you! Tuesday, July 22, 2003 12:53 AM CDT Riese is recovering fairly well from her surgery. She has had a few minor problems but nothing that seems to be too serious. She still has not really woken up yet, they want to keep here as calm and as still as possible so she is able to recover without any added stress. Overall the doctors seem to be pleased with her progress. We can only hope and pray that things keep going at a somewhat steady pace and hopefully there won’t be too many surprises along the way. Thanks again for your support and we’ll keep you updated on the recovery process. Friday, July 18, 2003 7:09 PM CDT I am proud to announce that our little miracle girl did it again! Riese has successfully made it through the surgery and is now back in her room starting her recovery process. The doctors said everything went as planned and went very smoothly, which is exceptional considering this rare procedure. It’s absolutely amazing to think that just a few hours ago she was on an O.R. table with her heart stopped and that the doctors were making incisions in her tiny little heart. It is just incredible what they can do. We are still kind of in the hot seat for the next few days during her recovery. Like the first surgery the following 24-48 hours after the surgery are very critical. This is when the chances of something going wrong are the highest. We have a very positive attitude that she will keep improving now and start sailing through her recovery at a fast pace. I think we deserve that and we all know she REALLY deserves that. Enough of this hospital mumbo jumbo we are ready to get her well and get out of here. This is like the start of a whole new phase, and we expect things to go smoother in this round. The past few days Riese seems to have such strong determination to get better it’s just amazing. We know she wants to get home and finally start her (our) normal life. So lets all keep praying for a good, fast recovery and to let this little bugger get home! Thank you all so much for the extra prayers and the support the last few days, we know that was part of the reason everything went as planned. Thanks! Wednesday, July 16, 2003 4:11 PM CDT Riese’s surgery is now scheduled for Friday the 18th at 1:30 p.m. The doctors feel it’s necessary to bump the date up due to her heart enlargement and other complications she is beginning to have. They told us a long time ago that we’ll be able to tell when she needs her next surgery. We are now starting to be able to see the signs that she needs the surgery. Mainly just in little things like her irritability and color, and we can also tell that she is starting to look a little uncomfortable more often. The good news is that she now weighs 9lbs 13oz and the ideal weight for the second surgery is around 10 pounds, so she is going into this at good solid weight. The doctors have explained to us what exactly they will be doing during the surgery and how they will do it. They assured us that they both have done numerous Glen’s (second operation in the series of three) and many valve repairs. But… here’s where it gets kind of scary, they have not done both of the operations combined but maybe once or twice. Infact a hospital in Michigan that has done the most of these combined Glen and valve repair surgeries have maybe done a total of 8 or so. It is a very rare case that you would need both of these surgeries at the same time, but in Riese’s case, due to her severely leaky valve they are going to have to perform this procedure on her. Even though it is rare and they have not done many of the procedures anywhere, they still feel somewhat comfortable doing the operation and they believe she has a fairly high chance of making it through the surgery. So lets all hope and pray extra hard for our little Riese on Friday and hope that everything goes smoothly during the operation and that she has a good recovery. We will keep everyone posted on how she does on Friday. Take care.
Monday, July 14, 2003 10:42 AM CDT Hi everyone, Riese is still doing good. She continues to grow and now weighs 9lbs 9oz. She is really starting to get used to bottle feeding too, she takes a good portion of every feeding through her bottle now. The doctors have set a date for the next surgery, which will be on Monday July 28th. But, this morning they said they may have to do it a little sooner (possibly end of this week or early next week) because her heart is really starting to enlarge due to all the extra work it has been doing. We’ll find out for sure in a day or two when it will be done. Along with the Glen surgery (the standard second surgery out of the three) her valve continues to leak severely, and they will definitely have to try and repair that during the surgery as well. They actually have to stop the heart with a bypass machine when they do this procedure so they can have a somewhat “dry field” to work in. This seems it would be a complex and risky operation, and it is to a degree but the doctors seem to know what they have to do in order to fix our little Riese up. As for now that’s about all the new updates we have for you, we’ll keep in touch and let everyone know when the surgery will be for sure. Monday, July 7, 2003 2:39 PM CDT Riese is two months today! She is still hanging in there and doing what she is suppose to be doing, growing! She now weighs 9lbs 1oz and continues to gain a little weight almost everyday. She is starting to really get the hang of bottle feeding too. She is learning more each day on how to do it, hopefully sometime she can get that feeding tube out of her nose and do it herself. There is really nothing else new besides that, her progress is staying stable and she is always smiling and awake. She is almost on a normal sleep schedule where she is awake most of the day and sleeps most of the night. I have put new pictures in the photo album but kept the one on the front page the sane because she looks so darn cute. We’ll keep you updated. Tuesday, July 1, 2003 4:09 PM CDT Riese had her heart cath this morning to confirm what the doctor’s thought was wrong with her. They mainly did it to look at the leaky valve, and to see how serious it was. Well, we were told that the leak was very severe and it will definitely need to be altered. They will try and fix the valve when they do Riese’s next heart surgery which will probably be around 3 to 4 weeks. The risks goes up tremendously when they are dealing with a valve like this because they actually have to open the heart up and try to alter this main valve. We do have faith in the doctors that they will do everything to the best of their ability, but even they are not certain of what the outcome will be. Doing this type of procedure is very risky, especially on an infant. Until then we can only hope that she keeps gaining weight and doing as good as she has been doing these past few days. She seems to be so normal and in such good spirits as you can see by the pictures, she has a long tough road ahead of her and we hope and pray that she will pull through this and keep being the amazing little girl she has already proven to be. Sunday, June 29, 2003 1:07 PM CDT As I read back the last journal entry to myself about three or four hours after I had written it, I realized that it was basically just not true. That’s how much things can change inside of a day down here. They are now planning on keeping Riese on the vent for sure until her surgery. It’s just way too difficult for her to do it on her own right now and they really want her to gain weight for her surgery. They are going to be doing a heart cath on her on Tuesday morning to find out what is going on with her. The doctors think that this “leaky Valve” is causing the majority of her problems, by doing this heart cath they will be able to tell what is really happening in there. This in itself is considered another operation, but not one that involves a lot of risk. From my understanding they inject a colored die into the bloodstream and then are able to see with a type of ultrasound machine where all of her blood is flowing and how much is getting to certain areas and so on. The scary part for us is that this will tell us the truth about what is going on with her heart. It could go either what right now, either good to fair news or very bad news. This will really determine when her next operation will be and it will elimainate this kind of guessing game the doctors are doing trying to find out why she is so irritable and having problems breathing on her own. So Tuesday’s a big day, and we are hoping for things to go in that good to fair category instead of going the other way. We will let everyone know what we find out after Tuesday. Take care
Monday, June 23, 2003 11:28 AM CDT Riese’s progress is staying consistent. They take her off the ventilator for 5 hours and then put her back on for 5 hours. They’re trying to slowly build the strength in her lungs so she can be on her own, which will probably be in a few days to a week. She is doing everything the way she is suppose to right now and things are definitely heading in the right direction. It is amazing to see how alert she is and she’s always awake and starting to smile a lot too. They are thinking that she will get moved up stairs in a few days. That means that she doesn’t have to be watched as close and that she is getting to be more stable. It also means that we will be able to spend more time with her without nurses and doctors always over our shoulders, we are looking very forward to this. We’ll keep in touch.
Thursday, June 19, 2003 10:30 AM CDT Riese continues to take steps in the right direction. She is gaining weight at a good pace and is more alert and awake than ever. We have really learned to take the news day by day around here, everyday we usually here something different on what is going to happen in the future. Now they say there is a slight chance that Riese will be able to come home for a couple of months before her next surgery. They want to start weaning here off the vent and try to maybe get the trach out before the next operation as well. It all may sound a little repetitive and confusing, it’s just that everyday her condition changes and the doctors all have different opinions (educated guesses) on what to do with her and how she will recover. Only time will tell what the real outcome of everything will be. As for now she continues to make good progress and things are going real smooth for the most part. She should start to recover a lot better now, as of Monday she has one more angel watching over her. Riese’s Great Grandpa Kluver passed away and we know that he will tell everyone up there to keep their eyes on her and make sure she gets better. Thanks for all the support and we’ll stay in touch. Sunday, June 15, 2003 3:14 PM CDT Riese has been doing pretty good the last couple of days. The doctors looked at her trachea on Friday and said everything looked really good and the damaged tissue was all healed up. They said if it were not for this leaky valve in her heart they would probably take the trach out and get ready to send her home, but as long as were going to be here until the next surgery they will probably just leave the trach in until she is ready to go home after her second surgery. We really have not gotten word as to when her next surgery will be. They say it could be as soon as a couple weeks or as long as a couple months. The longer the better, she needs to gain as much weight as possible and try to get stronger before this next surgery. So now we just hope that she can hang in there with this leaky valve for a while until she gets big enough for her next surgery. She continues to be in good spirits most of the time and is always awake and very alert. She loves to suck on her little nook and look at her bug mobile. Take care and we’ll update again in a few days. ~Thanks Thursday, June 12, 2003 11:41 AM CDT Sorry about be not updating all the time, I will probably only update about one or two times a week from now on. I have been trying to get home and work a few days a week and Lindsey is staying very busy here with Riese. We have found out some rather depressing news the other day. The doctors want to keep Riese here until here next surgery, which will be at least a couple more months. She has a valve in her heart that is not closing all the way when it is suppose to and this is causing her to work a lot harder than she should be. She needs to stay here so she can keep getting the medication she needs to keep this little valve working. I am not sure yet if they plan to fix this valve during her next surgery or do a separate surgery for this, this was not part of her original diagnosis. Whenever she reaches 10 pounds or so she will have her second operation (The Glenn). It was a big shocker for us to here this news but it is only for the best I guess. We will make sure to stay in touch with everyone down this long…long road, in the mean while there is nothing else to do besides sit around, wait and pray.
Saturday, June 7, 2003 4:28 PM CDT Riese is one month old today and things continue to keep going well for her. She has recently been taken off all of the IV tubes and drugs she has been on. They continue to give her a med or two orally a few times a day. It is so nice to see her without those big needles and tubes in her. She seems much more happier and content with the trach in as well. We are all kind of getting used to it being there now, and it’s all worth it when you can look at her and just see how much more comfortable she is. We have also been starting to feed her with a bottle the last couple of days, but she is still getting the majority of her food supply through a feeding tube that goes down her nose. It is going to take a little time for her to get used to eating normally because she has never really had a chance to do it before. Hopefully things keep going in this direction and she keeps getting stronger and better. Wednesday, June 4, 2003 5:34 PM CDT Hello everyone, sorry about the updating delay, we both have been busy the last few days. It’s hard to believe that we have already been here four weeks today, Riese will be a month old on Saturday already. She is now finally starting to move in the right direction. She is still hooked up to the ventilator, but she has been breathing on her own the whole day so she is making good progress in that area. She will probably be taken of the ventilator tomorrow if things keep going well. We will not know for sure how long she will have the trach in until next Friday. Hopefully some of the damaged area in her trachea has healed a little and maybe just maybe she will not have to go home with the trach in. She also has been taken off many of the different meds she has been on and just has a couple of I.V tubes left in her. So yes, things are starting to look up a little bit now, but we still have a ways to go. She still is just a little bitty thing only weighing in at about 7 ½ lbs. She is starting to be very alert now and awake a lot more often. We hope that things keep moving in the right direction and there are no more surprises this time around. Thanks again for the support and prayer’s, we will continue keeping you informed on Riese’s progress. Saturday, May 31, 2003 12:13 AM CDT Believe it or not, it has gone from bad to worse. After Riese was put back on the ventilator, the doctors suspected something was irritating her throat or her trachea(breathing pipe). The did a procedure where they go in and look down her throat with a small camera. They found out that because of the breathing tube being down her throat for so long it was starting to wear down the skin and cartilage around her trachea. The only option that we were faced with was to have a Tracheastomy performed. For those of you who do not know what this is, it is a tube that they insert in the lower- middle portion of your throat to help you breath better, she needs this tube in so that her worn down skin and cartilage around her trachea can have time to heal. As that skin heals and her trachea looks good again they will remove the trach. This could be as soon as 2-4 weeks, or it good possibly have to stay in until her next surgery or even longer. The good part is that it is only temporary, she looks a lot more comfortable now, but it’s not the most cosmetically pleasing thing to see. We sure hope that this down hill snowball we are in stops pretty soon, she has kind of been going in the opposite direction that we want her to be moving in, but hopefully it will turn around sometime. This will definitely extend our stay here at this glorious hospital a couple more weeks at least. Thanks to all of you for keeping the support and prayer’ s flowing, even though it may not seem like they are helping her condition improve much, it is making all of us stronger down here. Hopefully some day this bad dream will end and we will have her back in our arms at home. Thursday, May 29, 2003 3:20 PM CDT Here we go again, Riese was unfortunately put back on the respirator machine this afternoon. She did really well through out the night and everything was looking good. When we arrived at her bedside this morning she was starting to struggle a little bit, as the afternoon progressed she started to have more troubles with her breathing. They tried to put her in a little oxygen tent and that did not work very well. We waited and waited to see if she would come out of it and start breathing good again on her own and unfortunately she never really got to that point. They had to put that big annoying tube back in her nose and down her throat. She looks a lot better now than she did a few hours ago when she was struggling for breath, her color is back to normal and things are looking stable again. The doctors say that she will probably have to be on the machine for about another week. Let’s hope that the third times a charm. This has been a pretty bumpy recovery process so far, we know that things could be going worse, but they also could be going a lot better. We can only hope that things start to improve from here. Wednesday, May 28, 2003 2:49 PM CDT Hi everyone, Riese is doing really good right now. She was taken off the resprirator machine early this afternoon. She is doing everything on her own now and seems to be doing a great job at it. It is SO NICE to see her without any tubes going down her nose. She seems to be awake and alert too. I think she really enjoys not having those tubes run down her throat. She has been getting cut off many of the drugs that she has been on as well. Hopefully all goes well this time around, she is back up to her normal weight and things are looking good. As you can see I also put some new pictures up, they were taken right after she was extibated. We Hope you enjoy the new pictures and we will keep you updated on Riese’s progress. Thanks for everything! Tuesday, May 27, 2003 4:20 PM CDT Hello, Riese is still hanging in there. She continues to improve and is starting to really be more awake and more alert. The doctors think they will be extibating(taking her breathing tube out) tomarrow morning or the next, after that hopefully things will go a little bit smoother than the last time. I am confident that everything will work out this time, she is a little bigger and stronger than she was a week ago. As for now that's about it, so take care and keep praying for a good recovery.
Sunday, May 25, 2003 2:15 PM CDT Hi everyone, We just got back to the hospital this afternoon. We decided to go home for the weekend and try to have a little fun. We had a really good time just being home and seeing everyone again. Riese is doing good, she is still hooked up to her breathing machine but will hopefully be off of it within a day or two. She is looking really good and still has her spunky little attitude. I think she really wants to get home and finally meet all of the great people that have been waiting to see her. We all know that she has had an outstanding amount of people praying for her to get better, it is really helping her and us get through this. Thank you all so much for all of the support and the gifts, it is incredible to know that there are so many people that care. I will make sure to get some new pictures up very soon, she sure looks a lot different than she did when she was born. She just keeps getting cuter by the day. We’ll talk to you soon. Friday, May 23, 2003 11:40 AM CDT Hello and Happy Memorial Day weekend. Little Riese is starting to come around again after she has been put back on the respirator. They say that it could have been a number of small things that caused her to be put back on the machine. It may have been due to drug withdraws, they are trying to wean her off all of the meds she is on, and maybe they just did it a bit to rapidly. In any case, she is now doing a little better and is starting to be more awake and alert again. We are praying that this will be the only set back she has in the battle of trying to get through this mess. We have now learned that we have to take one step at a time and not get ahead of ourselves, this is a long and extensive recovery process and things may not go as well as we would like them to go all the time. It came to mind today that this is our 16th day of being down at the hospital, it really does not seem like that. Hopefully time keeps going fast and Riese heals up so we can get home and see all of the great people that have been giving us support and prayers throughout this difficult time. Again, we would like to thank everyone for their support and prayers, and also thank all of the people that have came down here to visit Riese. So… THANK YOU and we appreciate it very much. Thursday, May 22, 2003 11:16 AM CDT Hello everyone today is not starting out to be such a good day for Riese. The doctors took her off the respirator yesterday afternoon and she was doing really well until last night. We a call at about 2:30am that said they had to put her back on the breathing tube because she was having trouble breathing on her own. So she is now back on the respirator machine and will probably continue to be on it for another week or so. This will really slow her recovery time down as well. She was suppose to get moved to the seventh floor tomorrow, which are kind of the recovery rooms, but they say now it will probably be at least a week before we can do that. It is not the worst thing that could have happened, and with a major operation like this I guess you almost have to expect some bumps along the way. They are in the process right now of trying to find out what is causing her to behave this way, hopefully it won’t be to serious and she will keep zipping through this like a little champ. We will be saying an extra little prayer or Riese today and hoping that she will get over this obstacle in her recovery process. Thanks again for the support and prayers, it’s very much appreciated. Tuesday, May 20, 2003 1:55 PM CDT Hello everyone, Sorry about not updating the journal in a few days, we have been doing a lot of running around lately. Riese is still doing very good. She continues to get her meds weaned and is starting to be alert and awake more often. Tomorrow is a big day, she will be getting the breathing tube removed and will be on her own for the most part. Believe it or not we are really excited to be able to hear her cry again, she has not been able to make any noises because the tube was between her vocal cords. This is just another big step towards her recovery and being able to bring her home. We are looking SO forward to the day when we can load her up in the car seat and head back home. We are hoping that by the end of next week we can maybe do that, if all keeps going as well as it has been. I will also try to get some new pictures up within the next couple of days. Again, thank you so much for your support, it is really making it easier to get through this with all of the prayers and support you have given. It’s greatly appreciated, Thanks! Saturday, May 17, 2003 11:57 AM CDT Hi everyone, Little Riese is still doing good and starting to get weaned off more and more meds as time goes by. She keeps pulling through and is proving to be the tuff little bugger we knew she was when she was born. Other than that, I really don’t have a whole lot to say today because it’s quite and those quite days mean good days. So let’s keep hoping and praying that everything keeps going smoothly. As always, thank you for your support and prayers. Hope everyone can get out and enjoy the great weather today. Take care. Friday, May 16, 2003 10:16 AM CDT Hello again, As another day goes by little Riese is getting closer and closer to being able to come home and meet all the nice people that have been supporting her through this tough time. Today we have made it over yet another very important hurdle. After Riese’s surgery doctors actually left her chest open so it would not put so much pressure on her heart, it was basically covered by gauss and tape. Today at about 7:30am she went into the operating room to get stitched up. They do the stitching from the inside so it will leave less scaring. We haven’t seen the actual incision yet but we are told that it will look very clean and neat. The doctors do a great job with that, as well as everything else they do. So now, we just have to watch, wait, and pray for her recovery. She will start to slowly get weaned off the IV’s and the meds she’s on and start to bounce back into being the spunky little girl we know she is. Again, thank you all for the support and prayers, it means a great deal to us. Friday, May 16, 2003 10:16 AM CDT Hello again, As another day goes by little Riese is getting closer and closer to being able to come home and meet all the nice people that have been supporting her through this tough time. Today we have made it over yet another very important hurdle. After Riese’s surgery doctors actually left her chest open so it would not put so much pressure on her heart, it was basically covered by gauss and tape. Today at about 7:30am she went into the operating room to get stitched up. They do the stitching from the inside so it will leave less scaring. We haven’t seen the actual incision yet but we are told that it will look very clean and neat. The doctors do a great job with that, as well as everything else they do. So now, we just have to watch, wait, and pray for her recovery. She will start to slowly get weaned off the IV’s and the meds she’s on and start to bounce back into being the spunky little girl we know she is. Again, thank you all for the support and prayers, it means a great deal to us. Friday, May 16, 2003 10:13 AM CDT Hello again, As another day goes by little Riese is getting closer and closer to being able to come home and meet all the nice people that have been supporting her through this tough time. Today we have made it over yet another very important hurdle. After Riese’s surgery doctors actually left her chest open so it would not put so much pressure on her heart, it was basically covered by gauss and tape. Today at about 7:30am she went into the operating room to get stitched up. They do the stitching from the inside so it will leave less scaring. We haven’t seen the actual incision yet but we are told that it will look very clean and neat. The doctors do a great job with that, as well as everything else they do. So now, we just have to watch, wait, and pray for her recovery. She will start to slowly get weaned off the IV’s and the meds she’s on and start to bounce back into being the spunky little girl we know she is. Again, thank you all for the support and prayers, it means a great deal to us. Friday, May 16, 2003 10:13 AM CDT Hello again, As another day goes by little Riese is getting closer and closer to being able to come home and meet all the nice people that have been supporting her through this tough time. Today we have made it over yet another very important hurdle. After Riese’s surgery doctors actually left her chest open so it would not put so much pressure on her heart, it was basically covered by gauss and tape. Today at about 7:30am she went into the operating room to get stitched up. They do the stitching from the inside so it will leave less scaring. We haven’t seen the actual incision yet but we are told that it will look very clean and neat. The doctors do a great job with that, as well as everything else they do. So now, we just have to watch, wait, and pray for her recovery. She will start to slowly get weaned off the IV’s and the meds she’s on and start to bounce back into being the spunky little girl we know she is. Again, thank you all for the support and prayers, it means a great deal to us. Thursday, May 15, 2003 10:18 AM CDT Hello everyone, as time goes by little Riese is getting better and better by the day. She is one week and one day old today. The doctors say that she is starting to recover good. They started to take her off some of the meds that make her not move and she is starting to open her little eyes and wiggle her little toes every once in a while. We cannot believe how strong she is, well actually we can! She has been a little fighter since the day she was born. The nurse’s said that she has a little attitude already, I wonder where she gets that from? The doctors say that we will be able to see some very noticeable changes within the next couple of days. We are looking very forward to watching her progress through her recovery. Again, we thank everyone so much for the support and prayers, we cannot believe how many people are sending their prayers this way, it means the world and we appreciate it immensely. Wednesday, May 14, 2003 11:32 AM CDT Hi everyone, it is day two after surgery and Little Riese is doing very good. We have gotten through some of the most crucial time of recovery. The doctors say she is doing as good as she possibly can be doing at this point. She is making a great recovery. It is unbelieveable how strong she is. She will slowly start getting off some of the different meds and machines she is on, but we still have very important weeks to come. We hope and pray that every thing keeps going as good as it has been and that she makes a speedy recovery. Your prayers and support are really helping us get through this and we appreciate it greatly. Thank you all! Tuesday, May 13, 2003 8:53 AM CDT Hello Everyone. We made it through night one after surgery, the most important hours. The doctors say that she is looking very well and are very pleased with how she is recovering. The Doctors down here are absolutly incredible, It seems god as put them on this earth for one reason, to fix little babies. She had a long, strenuos day yesterday but she pulled through it with her incredible strength and everyone else's prayers. We really want to thank everyone for all of their support and prayers, it is really helping us get through this. We will keep updating as time goes on, in the meantime keep those prayers going, I have a strong feeling that's why little Riese is doing so well right now.THANK YOU ALL!!! Monday, May 12, 2003 3:39 PM CDT Hello Everyone!! We just wanted to tell you all that we have made it through the first hurdle!!! The surgery took approx. 6 hours and they will be bringing her into the recovery room in about 15 minutes. They did have a couple complications late in the operation and it made us a little nervous, but little Riese prevailed!! We were told by the doctors that she is doing well but these next couple of days are crutial and will be tough for her. We want to thank you all for all of your thoughts, prayers and support. Keep praying for her, she is a tough little bugger!! We love you all!!
Monday, May 12, 2003 10:17 AM CDT Riese is doing well. She went into surgery this morning at 10:00am. She she has a long day ahead of her and a lot of surgery to go through, but she is looking good and is really strong. We will let everyone know the outcome of the surgery and in the mean time we will all be praying and hoping for the best.
Sunday, May 11, 2003 12:26 AM CDT Hello everyone. I thought that by making this website it would be a good way to keep everyone informed with what is going on with our daughter Riese. She was born on Wednesday May 7th at 10:19 am. At he Douglas County Hospital. She Weighed 8 lbs. 10oz. And was 21 ¼ inches long. She has dark black hair and looks just like her Daddy. She is a beautiful little girl and is already getting spoiled. Lindsey is doing great for just having a baby (especially having it naturally with no epidural) She has been up walking around from the day she delivered Riese. She is very strong and doing well. Sunday, May 11, 2003 12:26 AM CDT Hello everyone. I thought that by making this website it would be a good way to keep everyone informed with what is going on with our daughter Riese. She was born on Wednesday May 7th at 10:19 am. At he Douglas County Hospital. She Weighed 8 lbs. 10oz. And was 21 ¼ inches long. She has dark black hair and looks just like her Daddy. She is a beautiful little girl and is already getting spoiled. Lindsey is doing great for just having a baby (especially having it naturally with no epidural) She has been up walking around from the day she delivered Riese. She is very strong and doing well. Sunday, May 11, 2003 11:44 AM CDT Riese is doing well Sunday, May 11, 2003 11:44 AM CDT Riese is doing well Sunday, May 11, 2003 11:32 AM CDT Sunday, May 11, 2003 11:31 AM CDT this website does not work very well Sunday, May 11, 2003 11:22 AM CDT Riese is doing well
Sunday, May 11, 2003 11:22 AM CDT Riese
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