History

Tuesday, August 1, 2006 11:26 PM CDT

Hi there! Since Mommy doesn't update the site anymore, I guess it is up to me now! (Maybe it has something to do with me keeping her so busy!)
As long as I have all the attention right now...big news! I am potty-trained! No problem at all! Mom says she wishes getting me to eat without the feeding tube was so easy!
I AM getting better at eating! I go see a really nice lady named Brenda every week who is helping me learn to eat. I just say "Go to Brenda's house", but Mom seems to think she is a Speech Therapist and works at the Children's Hospital. She doesn't know the real reason we go is to go on the swing and get stickers. Anyhow, lately I have decided I really like peaches. I also seem to know that CANDY is a really good thing!
With all of the work I have been doing eating, I have developed the muscles in my mouth. Which means I like to talk... a lot! I can say some pretty funny things too! Like the other day, I pointed outside on the sunny day and told Mom "It's lightning." Then I said "Just kidding". My favorite song to sing lately is "Happy Birthday to you". It's pretty important to have a "hat" on your head when you sing that song, you know. But if you don't have a hat, anything will do. I even used my potty training seat the other day! Mom wasn't too happy about that though.
It's been a busy summer, but I am glad it is cooling down. Mom says we get to go to the Minnesota Zoo this week. Maybe I can get Mom to put some pictures up of my visit there real soon!
Please remember all of the CDH children and their families in your prayers. They all need as much strength as God gave me!

Sarah

Tuesday, February 21, 2006 0:39 AM CST

Well, Sarah has again been busy amazing us with her growing eating abilities!
I actually have a toddler who is throwing fits because SHE WANTS TO EAT! Wow...as tough as that can be when you don't quite have the meal ready yet... I am very thankful she is THAT interested!
We have an appointment with the dietician on Wed., and hopefully will be talking about a plan to challenge Sarah to eat more, and begin the process of weaning her from the G-tube. This could be a lengthy process...but there is a light at the end of the tunnel!
Otherwise...Sarah has been enjoying all of her toys, and leaving tornadoes all over the house of them! She also loves to take a lot of breaks to read books. She will even try to tell some of the stories to us at times too!
Sarah's speech has also really taken off since her oral feeding skills have improved. She says a lot of 3 word sentences now, and is actually to the point you can begin to have conversations with her!
Please keep Sarah's feeding in your prayers...and of course, remember a prayer for all of the other families going through this journey. We seem to have some traffic through here lately, and I am very very blessed to see Sarah giving hope to others.

Dawn

Tuesday, January 17, 2006 9:07 PM CST

Great news on Sarah! She ate 1/2 an avocado, some mandarin oranges, sour cream, and drank 1 oz of her Nutren formula for dinner last night!

She had her first feeding therapy appointment today and her therapist was amazed at how far she has come since her initial evaluation 2 months ago! SHe said she is like a different child!

Sarah will be working on developing a stronger chew, and learning to tolerate different textures. We're confident this will get her to take more volume and finally be able to eat enough so she can get rid of the g-tube.

Weather and temperature permitting, we are planning to bring Sarah to the March for Life at the state capital on Sunday. This will be wonderful to participate in, as we hope to lend hope to those who are faced with a poor prenatal diagnosis.

Happy New Year!

Dawn, James, and Sarah Violet

Wednesday, December 7, 2005 2:40 PM CST

I am not sure if anyone is still checking in here or not..but my Mommy has finally decided to update the page! (She says it's because I keep her so busy!)

I am now 2, and Mommy tells me every day I am a miracle, and I know she is right. I keep reminding her every day by showing her how I can push my little lungs to the limit by running around non-stop, and by showing her how smart I am. I love to look at books and read with Mom and Dad. I have even learned to count "1,2" (well, when I feel like doing it of course)! I also like to watch Barney and Elmo, and play with all of my toys.

Mom says I still need to gain some more weight, but then she also says I need to eat all by myself so I can say bye-bye to my feeding tube! That sounds like a lot of hard work! But, I have been showing Mom and Dad I am up to the challenge lately. I have learned to suck from a straw and will drink just about anything they offer me (my favorite is Coke though..oops, Mom didn't want anyone to know that!)
I have also been trying out a lot of different foods. I met a really nice feeding therapist who I am going to start visiting with each week so she can help me work on learning to eat.

I have to go now...Mom says it is time for a nap!

Sarah

Tuesday, January 18, 2005 12:48 AM CST

Hello! Sarah is busy showing us life will never be dull again! She began walking on Christmas Eve and hasn't slowed down since!
Her new favorite thing is to take things and hide them around the house- in drawers, cabinets, in the bath tub, anywhere at all!
Sarah had a follow-up with her surgeon today, and also had a chest x-ray taken. It showed that her left lung has grown more since her last x-rays, so that is great news.
We are continuing to struggle with eating...Sarah has done wonderful in so many other ways, and we are thankful for that, of course...but this is the one area she doesn't want to give up control!

Sunday, December 5, 2004 9:36 PM CST

Hello!
Well it has been a long time since we last updated! Sarah has kept us very busy!
It is hard to believe she is already 1 year old! She has gotten rave reviews from all of her Dr.'s at her follow-ups! She is very active, a very good sign that those lungs have developed nicely.
Sarah now weights almost 19 pounds, and has 12 teeth! We are still working at getting her to use those teeth for eating all kinds of food, but she has made some good progress in that area. Hopefully one day she will just decide she loves to eat!
Sarah is now learning to walk, and has taken a couple steps on her own lately. But she sure does get around and into anything she sets her mind to! She still has all that determination that got her through her time in the NICU!

Happy Holidays!

Dawn, James, and Sarah Violet

Sunday, December 5, 2004 1:08 PM CST

Well, it has been a long time since an update! It is hard to believe Sarah is already 1 year old!
She is doing great...she has had rave reviews from all of her Dr.'s at her follow-up appointments!
Sarah is really getting around...keeping us very busy! She has been standing alone recently and has even taken a couple steps on her own. She is a very active girl...and this is great because it tells us her lungs are doing very well keeping up with her!
Sarah is even doing better eating, becoming more tolerable, and it seems she has even found a couple things she likes. It has been a long process to get to this point, and we still have a way to go, but we can see things are looking up.
I will try to post some new pics soon...

Dawn, James, and Sarah Violet

Thursday, September 9 8:31 PM CDT

Sarah has been really busy learning a lot of new tricks lately! She has learned to crawl, pull herself up to things all in the last few weeks!
She now has 8 teeth!
And best of all, she is starting to be a lot more interested in eating! Favorites so far seem to be green beans and oatmeal! She is also learning now to drink from a sippy cup.
Sarah recently had a follow-up appointment with her NICU Dr., and they were amazed with how far she has come. We were so proud of her!
Every day we are amazed at what a miracle God has given us. It is hard to believe Sarah is the same little baby who was once so sick!

Monday, May 24, 2004 11:52 AM CDT

Hello! Everything seems to be going great with Sarah...she seems to be getting more active every day. She likes to jump in her Johnny Jumper, and likes to stick her feet in her mouth (along with everything else!). We are waiting for a tooth to come poking through! It is nice to start worrying about some of the "normal" baby stuff!
Sarah will be starting to get services through Early Intervention to help her catch up on some of her developmental milestones. They will also be able to work with her on the feeding. Sarah still does not care much for the bottle, but has started to work on Sweet Potatoes and Bananas, and rice cereal.
Hopefully we will have some new pictures up soon!
Be sure to check out Sarah's story on www.benotafraid.net, an online support for families continuing pregnancies with a poor diagnosis.
http://www.benotafraid.net/story.asp?id=59

Dawn

Saturday, April 17, 2004 11:32 PM CDT

Hello! Sarah is doing great...she has rolled over onto her tummy a couple times now, and loves to play, and still watch her Baby Einstein movies. She weighs 11 lbs 10 oz now, and continues to grow taller and taller!
With this beautiful weather she has enjoyed a few stroller rides out and about. Mom has even taken her out a couple times to begin teaching her to shop : )
We are happy to tell you that Sarah's story has been included on a website created to support families continuing a pregnancy despite a possible poor outcome...you can see it at:
http://www.benotafraid.net/story.asp?id=59

Dawn, James and Sarah

Thursday, April 1, 2004 10:10 PM CST

Hello! Hard to believe our little munchkin is going to be 5 months old pretty soon! And weighing in at almost 11 pounds!
Sarah has learned to roll to her side..onto the tummy on a couple rare occassions too! Sarah has had a few giggles, and is always (well mostly) full of smiles!
She is doing great off of the Oxygen, and still working on the feedings for now.
Be sure to stop in the photo album and see the new pictures!

Dawn

Thursday, March 11, 2004 10:36 PM CST

Back home...again! After just under a week, Sarah (and Mom!) are home again! Sarah had surgery on Tuesday to re-inflate her lung, and to place the G-tube. All went very well...and 4 hours after surgery she was smiling and kicking around! Sarah seemed to really enjoy her "socializing" while in the hospital...quite the little "flirt" with everyone.
We were able to start using the G-tube 24 hours after surgery and it has gone very well. One of the risks is that the G-tube placement may make her reflux worse, however, we don't see any problems with this.
Since going to the hospital, Sarah has also learned to roll over onto her side..she really enjoys doing this and "eating" her hands!
Sarah's left lung (the bad one) has actually grown to about 3/4 full size...pretty good considering she had about 1/5 of it at birth!
Other good news...Sarah has been able to come off of the Oxygen fully! So... no tubes of any kind on the face!

Dawn

Saturday, March 6, 2004 8:25 PM CST

Well it has been a wild couple of days! Sarah has been re-admitted to Childrens Hospital in St. Paul... a chest x-ray taken on Friday showed a small area of collapse in her left lung. Despite this, she is very stable and the doctors seem to have a hard time believing she could be "sick". Another study today showed that the left side of her diaphragm may be paralyed...this could happen with the CDH, especially with the size of the defect she had. The surgeon will be seeing her tommorow and deciding what our course of action will be. They have decided too that as long as she is already in, they will do the surgery to place the G-tube and get rid of the NG-tube... the G-tube will be placed in her abdomen, going straight into the stomach...yay no more tubes down the nose! This will hopefully make it more pleasant for Sarah to work on taking the bottle. Hopefully this will help with her reflux too.

Sarah is just as playful as ever...she had her developmental check yesterday and they are very pleased with how well she has come along!

We are asking for prayers for Sarah through this, that she may be pain-free and that God would lead her doctors in their care of her...and put our minds at ease!

Dawn

Tuesday, February 24, 2004 8:25 PM CST

Hello! It has been quite awhile! Hard to believe we are coming up on almost 2 months at home!
Sarah has had a rough day today... the Home Care Nurse came to give her Synagis shot...and Sarah had pulled her NG tube out this morning...so Mom and Dad had to put that back in!

Sarah is still working on bottle feeding...we have had a lot of ups and downs with this. She has an appointment Thursday with some feeding specialists at Childrens Hospital, so hopefully they will be able to give us some insight. Despite this, Sarah is a growing girl! She now tips the scale at 9 lb 13 oz (4 pounds over her birth weight!) and is 23 inches tall!

She seems to be learning so much so fast. She loves her Baby Einstein videos, and loves to be talked to.

There are also new pics in the photo album to check out!

Dawn

Tuesday, February 24, 2004 8:08 PM CST

Hello! It has been quite awhile! Hard to believe we are coming up on almost 2 months at home!
Sarah has had a rough day today... the Home Care Nurse came to give her Synagis shot...and Sarah had pulled her NG tube out this morning...so Mom and Dad had to put that back in!

Sarah is still working on bottle feeding...we have had a lot of ups and downs with this. She has an appointment Thursday with some feeding specialists at Childrens Hospital, so hopefully they will be able to give us some insight. Despite this, Sarah is a growing girl! She now tips the scale at 9 lb 13 oz (4 pounds over her birth weight!) and is 23 inches tall!

She seems to be learning so much so fast. She loves her Baby Einstein videos, and loves to be talked to.

I had planned to post some new pictures, but am having trouble getting my scanner to work, so those will probably be delayed.

Dawn

Tuesday, February 3, 2004 1:06 AM CST

Hello! Well, Sarah just keeps surpising us every day with all of the new things she learns! She has a bouncer chair that will light up and play music over her when she kicks, and she has now figured this out and will kick and kick with this look of determination on her face to make it work! Today, she has also gotten really good at getting her hands and little toys into her mouth! She is definitly awake more during the day, and full of smiles!

We are still working on the bottle feeding with her, kind of at a setback right now as we have been battling a case of thrush. Before this, she had been getting up to 2 oz per feeding! If she can do that well consistently we will be able to get rid of that NG tube very soon!

Sunday, January 25, 2004 7:51 PM CST

Hello everyone (who is still with us!) ! Hard to believe we have been home almost a month now...and we thought that it would never come!
Sarah is doing great...as you can see in the new pictures, she is enjoying bath time, her swing, her bouncy chair, and of course... a few naps!
We have been able now to pretty much do without the schedule she was on for feedings, and feed her as she becomes hungry. This way, she will learn what it means to be hungry and work hard for her food! That may sound terrible, but our little girl seems to be taking advantage of those tube feedings!
Sarah now weighs 8 lb 8 oz (almost up 3 pounds since birth!) and is 22" tall. Hopefully if she keeps growing well, she will soon be rid of that Oxygen. She would REALLY like that! But, as her Grandma says, those tubes have really taught her a lot about using her hands and fingers!

Monday, January 19, 2004 8:10 PM CST

Hello! Still settling into a routine here at home with our little girl (the night owl!). Things are going well, just working on gaining weight (we are at 8 lb 8 oz) and on feeding.

Sarah has had a lot of visitors and enjoys the new faces. She is having fun in her bouncer chair and swing, and now has discovered how fun it is to grab Mom's hair!

Sunday, January 11, 2004 12:53 AM CST

Hello! Well, it has been over a week and things are going good here at home!
Sarah spends her time in her bouncy chair, in her swing, watching Baby Mozart (at least listening!), and mostly, sleeping! Oh yes, another important part of each day... trying to pull out that Oxygen cannula! She is starting though to have more frequent awake times and has begun to smile. It seems every day she has new little coos and noises to make!
As far as the feedings go, we are hoping that they will improve as she continues to have more awake times. She does seem to wake now before her feeding times, hungry, but just seems to need some more energy!

Wednesday, January 7, 2004 6:27 PM CST

Hello! Well Sarah slept right through the night last night! Very welcome after the night before which seemed to be our initiation into parenthood! Sarah had her 2 month check up and shots on Monday, and was an extremely fussy little girl all night. To top it off, she pulled out her NG tube that morning right before her feeding, so we had to put a new one in.
She is doing well with the feedings, slowly, but seems more consistent.
She is still spending a lot of her day sleeping, but likes to sit in her vibrating bouncy chair and seems to enjoy the colorful things around her.
Sarah now weighs 7 lb 14 oz and is 21 1/2 inches long!

Monday, January 5, 2004 0:08 AM CST

Hello! We have been home for a couple of days now, and all is going well! Sarah seems to be adjusting to her new surroundings.
She seems to have improved with breastfeeding..,.one change upon coming home was that instead of being fed every 3 hours she is now fed every 4 hours...and it is helping to make her hungrier and therefore work a little harder at breastfeeding!
It is wonderful to have her home with us...FINALLY! At the same time, it was difficult to leave the NICU...the nurses have been truly a God-send....aside from being wonderful caregivers to Sarah, they have become like friends to us. God truly blessed us with the best!
We will keep you posted...things are pretty busy around here though :)

Friday, January 2, 2004 1:01 PM CST

(James) Hi everyone, We should be heading home in a short time. Sarah is doing great, and we are excited to get her home. Thanks everyone for all your support. we will continue to keep you informed and update the pictures.

Thursday, January 1, 2004 11:04 AM CST

Hello! Well, it looks like Sarah will most likely be going home Friday or shortly after! Things are going well roomimg in with her...besides the lack of sleep! I guess that I got away without that deprivation for long enough....

It has been real busy though, doing the learning that we need with her before discharge...we had to go through reflux training due to the reflux she has...most CDH babies will have reflux. And since she is coming home on Oxygen and with a tube feeding we had to be trained with those also. She will be on the Oxygen probably only for a short while to help her growth and hopefully give her more energy for feedings. And the tube feedings...only Sarah can tell us when she will decide to be a hungry little girl and eat enough on her own!

So...the next update will probably be the announcement that FINALLY our little gal is coming home : )

Monday, December 29, 2003 1:56 PM CST

Hello! I am adding this journal in addition to the new one yesterday! Seems every time I add one, there is then new news!
Sarah will be moving to a private room in the "West Wing" (aka last stop!) with Mom this afternoon. There, we will continue to work on her feedings. Allowing me to stay with her will permit her to go on a "feed when she is hungry" routine, rather than feeding her automatically every 3 hours. So hopefully then she will do much better with the breastfeeding. Seems the little smart girl knows that she will get food via her NG tube anyway, so why work hard for it when you can get it for free?!?!?! Sarah will breastfeed when she seems hungry and then they will catch her up on the feeding she didn't take with her NG tube. If needed, she may go home with the NG tube to allow us to supplement her as needed.
So Mom is back to calling Fairview-Riverside home again....but it will be nice to finally be a full-time Mother!

Sunday, December 28, 2003 12:44 AM CST

Hello! Hope everybody had a wonderful Christmas and ready for the New Year! We are talking with Sarah about some New Year's resolutions she could have....like feeding really well so she can come home!
That is still the big speedbump for her... she is doing better with the breastfeeding overall, but just is not getting the consistency down with it. We are also trying the bottle on her, which she does alright with, but nothing to write home about! The key with her is to catch her in the right mood I guess!
She has still been without the Oxygen.... for about 5 days now!
Sarah now weighs 7 lb 1 oz.
It is great to see her development...often, you would expect a baby who has been through what she has, and suppressed by drugs, to be behind developmentally, but Sarah seems to be right on track...she has good control of her head and enjoys watching her mobile. She has even kicked at and reached out for the things on her mobile!
She really enjoys being talked to and is quite the "social girl" in the nursery!
Thank you for everyone's continued support through this "journey" :) We would like to ask for your prayers that Sarah can get the feeding down and come home...we are thankful for coming this far...but always would like just a little bit more :)

Sunday, December 28, 2003 12:44 AM CST

Hello! Hope everybody had a wonderful Christmas and ready for the New Year! We are talking with Sarah about some New Year's resolutions she could have....like feeding really well so she can come home!
That is still the big speedbump for her... she is doing better with the breastfeeding overall, but just is not getting the consistency down with it. We are also trying the bottle on her, which she does alright with, but nothing to write home about! The key with her is to catch her in the right mood I guess!
She has still been without the Oxygen.... for about 5 days now!
Sarah now weighs 7 lb 1 oz.
It is great to see her development...often, you would expect a baby who has been through what she has, and suppressed by drugs, to be behind developmentally, but Sarah seems to be right on track...she has good control of her head and enjoys watching her mobile. She has even kicked at and reached out for the things on her mobile!
She really enjoys being talked to and is quite the "social girl" in the nursery!
Thank you for everyone's continued support through this "journey" :) We would like to ask for your prayers that Sarah can get the feeding down and come home...we are thankful for coming this far...but always would like just a little bit more :)

Wednesday, December 24, 2003 4:29 PM CST

Hello! And Merry Christmas to everyone!
A couple of big news items for Sarah... she has now been entirely OFF of Oxygen for 24 hours... and her Oxygen saturation has been generally 98-100% (they want it above 92%)!!!
She has also been consistent enough with the breastfeeding that it is almost time for Mom to start staying in the hospital with her, so that she can start feeding more often. She has been getting around an ounce... very good news!
Sarah has been wide awake all day long.... she really enjoys looking around and being talked to.
Merry Christmas...we know we have the best gift of all!

Tuesday, December 23, 2003 5:28 PM CST

Hello! It has been awhile...things have been really busy getting ready for Christmas and being at the hospital for Sarah's feedings...Mom is on a short leash!
Sarah is now off of her narcotic medications...she is doing well with this and has not seemed to have any problems with withdrawl. She is starting to be a little more awake, which is probably helping with the feedings.
She took a little over an ounce yesterday... we have not beaten that record yet, but she seems to be doing good with it. Thankfully, she has been able to breastfeed without increasing her Oxygen needs during that time. She just gets tired out and has not developed an extremely strong suck just yet.
She has actually been able to spend some periods of time entirely off of her Oxygen, and even the amount that she is on when needed is very small.
She won't make it home for her first Christmas... but we are just very blessed to have her, and the support of all our family and friends.

Friday, December 19, 2003 1:00 PM CST

Good news today...we made it to 26 ml...almost an ounce! It is wonderful to have her breastfeed that much and not feel "stuck" where she was! Mom had a talk with her about doubling this the next couple times and maybe she would be ready to go home real soon!
Doing great in all other aspects too... she is down to 1 dose per day of her narcotic medications, so she is almost off of those. She has not had any trouble with withdrawl from these...thank God for a smooth transition with this area!
She is really starting to be awake and alert...she enjoys looking at her mobile and even tracks the moving objects now. We are still working on some stretching to help loosen up her legs and get her moving a little better, but developmentally Sarah seems to be doing great!

Wednesday, December 17, 2003 4:51 PM CST

Hello! Sarah is continuing to do very well. We have worked our way up to 1/3-1/2 of an ounce with breastfeeding. They are also starting her on a bottle, which she has not seemed too extremely interested in so far.

They are still weaning her off of her narcotic medications...hopefully this will help her to be more alert and ready to eat!

Not much else to say today... she is enjoying her visits from the Occupational Therapist who is helping her to get stronger with her sucking and also helping her with some stretching... as long as they don't make her work too hard! Sarah also likes her mobile above her crib...she seems very deep in thought while looking at it!

Monday, December 15, 2003 12:08 AM CST

Hello! Not much new with Sarah... she is getting pretty boring as the nurses would say! But that is good!
The big news has been working on breastfeeding. She is doing very well, and seems to get stronger every day. She still gets breastmilk fed to her by the NG tube, since she only takes about 3 ml (1/10 of an ounce!) when she breastfeeds...not enough to get a little gal by!
They are still weaning her from her medications... and from her Oxygen.
We are still hoping for the chance of having her home for Christmas.... her discharge is pretty much dependant on how she is doing with feedings...so only she can decide!

Friday, December 12, 2003 2:31 PM CST

Hello! Sorry it has been awhile since an update, for those faithful Sarah-watchers! She is doing great, the only big news is that we're still working on the breastfeeding! She is doing well, seems to be exceeding the expectations for starting out!
She has been pretty awake during the day but snoozes all evening when we are there!
Her tummy is tolerating her feedings... she now gets fed by the NG tube every 3 hours. We are happy about this, given the problems some children with CDH have with digestion.

Wednesday, December 10, 2003 4:49 PM CST

(Dawn) Well, a really big day today...Sarah and Mom got to try out breastfeeding for the first time! And it went really well! This is wonderful, since the feeding issue is the last obstacle for her to overcome before she can come home...so Christmas at home is looking like a possibility!

She was actually awake today for a stretch of about 3 hours, very bright eyed and looking around. As she is being weaned more from her narcotic medications she should continue to be even more awake and alert.

We just thank God every day for all of the obstacles Sarah has overcome... she is 1 month old today and it is amazing to think of how much has been accomplished in that short of time! God has truly used Sarah to show us the miracles that come only from His power!

Tuesday, December 9, 2003 10:37 PM CST

Sarah got to move to Nursery 1! So we are moving closer and closer to the front door....
She is still pretty sleepy. As they wean her off of her narcotic medications she should wake up a little bit more.
She is doing well with the feedings, they are giving her large amounts again at one time to prepare her tummy for breastfeeding. So far she is tolerating them well, so hopefully soon we will be breastfeeding.
Today she met with the Occupational Therapist who will help her strengthen her muscles and also work on sucking for feedings.

Monday, December 8, 2003 4:54 PM CST

Hello! Today we arrived at the hospital to find that they had removed Sarah's last IV line...and as a result she was able to be dressed (finally!) in some clothes! We were also told that she may get to move to Nursery 1. Apparently that is a nursery for the "not so sick" babies! After that will be the "West Wing"...an area of the NICU with private rooms that the family stays in with the baby when you are working on going home. She will be ready to move there when she is able to take a certain amount of breastfeedings a day. So Mom will be moving back to the hospital again...I'll have to have a talk with the little one about not keeping me there so long this time!!!
She is still needing just a little bit of Oxygen to keep her going...she may come home on a little bit, but of course we are hoping not. So is she...constantly trying to pull it out!

Sunday, December 7, 2003 3:59 PM CST

(Dawn) Our little princess is, as usual, doing wonderful! Mom and Dad came in this morning to see that she had graduated to a crib, and was hanging out in a bouncer seat. She has much more freedom since she has gotten rid of the ventilator and IV's. She is also much easier to pick up and hold.
They will probably be removing her last IV line in a couple of days. Then she will get all of her remaining medications by mouth.
She is still recieving Oxygen, through a nasal cannula. It is possible she may go home on a little bit of Oxygen, but not if she has her way! She likes to try and pull the nasal cannula out of her nose.
It is impossible to describe how wonderful it feels to see her becoming more of a "normal" baby. Now every day we can see she is a step closer to coming home with us, no doubt by the grace of God only. We hope she will never forget what a little miracle she truly is!

Saturday, December 6, 2003 2:44 PM CST

(Dawn) Hello! We just got back home from seeing Sarah this morning...she is doing wonderful!

Her breathing looks better... she does not seem to be having to work as hard to inflate those lungs! She was even without supplemental Oxygen for some time last night!

Her feedings are going very well. They are able to increase them in even greater increments now. She is recieving enough nutrition from the breastmilk she gets through her tube feedings. Therefore, they will be discontinuing the IV fluids she was getting... and they will be taking out another of her IV lines today! We are almost rid of all those tubes and wires!

Thursday, December 4, 2003 10:20 PM CST

Hello! Another wonderful day for Sarah! Dad got to hold her tonight, so she got some extra loving today!
She is getting stronger every day.... tonight when Grandma and Grandpa Pierro came to visit she looked ready to crawl right out of there! She showed them just how strong her lungs were with some cries, but followed up with a couple smiles to make a good impression!
Her respiratory rate continues to decrease...not much longer and it looks like she will be able to work on breastfeeding...then when that is down, we'll be home! Hopefully in time for Christmas!

Wednesday, December 3, 2003 5:10 PM CST

(Dawn) Hello! Another good day for all of us! Sarah is breathing even better today on her own... her rate of respirations have decreased, which is very good. It is nice to see her not having to work so hard! Her chest x-ray this morning showed that the area of collapse in her right lung has resolved...more good news!
She is doing good with the feedings... they have continued to increase the amount they give her. She is making some nice messy diapers...news this Mom and Dad are very excited about! When they do the surgery to repair the defect it is not really possible to put everything back in just perfect order...so the intestines are not in perfect position, so the fact that everything "works" is great!
Sarah seems to be becoming more alert every day. She still does a lot of sleeping because it hard work to use those little lungs right now all by herself. But when she is awake she is focusing more on things and just seems more content. She likes to be awake though around the time Mom and Dad have to leave!
Well, it is amazing to look around that nursery at some of the other little babies there and realize how far we've come! I don't know how we made it through some of that when I look at the other babies... it is true that God gives you everything you need for the journey... there is no other way we could have made it!

Tuesday, December 2, 2003 1:08 PM CST

Hello! Sarah continues to do wonderfully today! She spent the night on a CPAP breathing machine to give her breathing a little rest, but today is back breathing on her own. She is on low amounts of Oxygen too.
She is able to cry now! (very hoarse though!) It is so nice to see her doing "normal" baby things like that!
Her feedings are going well, they have been able to increase how much they are giving her. She now weighs
6 lb 3 oz.
We are so thankful every day to see her making wonderful progress! God has done wonderful things for her, and has also blessed us with the most wonderful nurses and Dr.'s here. We believe she is truly a little miracle!

Monday, December 1, 2003 11:30 AM CST

(Dawn) Look Mom, no tube! We came in this morning to see Sarah without the tube and ventilator! And she is doing very well! Her blood gases She was wide awake for awhile after, and the nurse got some good pictures of her... you can finally see her cheeks!

(James)What a great day! I can't explain how awesome it is to see Sarah laying there with no tube in her mouth and breathing all on her own. It truly is a miracle. I have always knew that the day would come but when you see her dependant on so many things for so long you wonder if it will actually happen. The doctors and nurses are truly a God-send and Sarah has truly become a testimony of the power of prayer and Gods grace. I am so thankful for all of you.

Sunday, November 30, 2003 11:32 PM CST

Hello! Well, we didn't get to get rid of the tube and ventilator today... maybe tommorow. Sarah had an area of collapse in her right lung so they are giving that time to re-inflate before removing those. However, she has done very well today so hopefully tommorow they will be able to proceed.
They are trying a new method for tube feedings, and so far today it seems to be going well.
Thank you to everyone for your continued prayers and support.

Saturday, November 29, 2003 12:52 AM CST

(James) Hi everyone, We got here this morning and Sue (one of our favorite nurses) had her on her stomach again. She really seems to like that. I suppose anyone would after laying on their back for three weeks. She can also digest and breathe a little easier that way.

The feeding has been going good. She is digesting her milk and making some pretty interesting dippers (if you know what I mean)

Continues to come down on her vent,in fact the Surgeon was in this morning and says that probably tomorrow he will be taking the tube out of her mouth and taking her off of the vent support machine. We are really excited about that and would appreciate all your prayers that things will go great.

We really appreciate all the prayers thus far. The bible says that God can do increasingly and abundantly beyound what we can think or ask. Dawn and I have been hanging on to that the last couple of days and boy if it isn't true. We are ready for her to come home and can't wait for you all to meet her. Hope everyone is doing well and had a great Thanksgiving.

Friday, November 28, 2003 2:35 PM CST

Hello everyone! Sarah has had a wonderful night and morning. Her chest x-ray this morning showed a little less fluid in the chest, but they will continue to give her the medication to help pull this fluid out of her. So we're making lots of wet diapers!
All of her labs were negative, so no infection anywhere! Her temperatures have also been normal.
Sheis still down on the ventilator and now down even farther on her Oxygen levels given to her. Starting to see the light at the end of the tunnel! Before we know it she will be doing all of the breathing on her own!
Sarah was wide awake this morning and seems comfortable for the most part.. except when she gets a wet diaper! She does not seem as uncomfortable today coming off of her medications, so hopefully she will not experience any major withdrawl symptoms.
They have also resumed her tube feedings today... a little slower this time I think, so hopefully that will go better this time around so we don't have to take them away from her again!

Thursday, November 27, 2003 11:46 PM CST

Happy Thanksgiving! We certainly have a lot to be thankful for today!
Sarah is doing great with her breathing... she has been able to continue having her ventilator turned down. Her chest x-ray this morning showed some more fluid in her chest area so they are starting medication that will help to remove this excess fluid.
She has not really had any more fevers, just slightly elevated. The labs that they ran on her blood and urine were negative, but we are still waiting for one more lab that was done on the secretions from her lungs.
She has been off of her blood pressure medication all day and remained stable in that way.. . there are so many fewer medication pumps at her bedside than there were a few days ago!
Also on that note... they are weaning Sarah off of her "comfort" medication, and is expected, she is experiencing some withdrawl from this. We will be praying that God will bring her comfort and a feeling of security during this time... hopefully this time will be short but right now we don't really know how long of a process this may be.

Wednesday, November 26, 2003 11:33 AM CST

(Dawn) Hello! Sarah has been able to go down on the ventilator again. It is giving her less breaths leaving the more of the responsibility to breathe to her. Those lungs are getting stronger!
They began tube feedings yesterday... however yesterday she did not actually digest any of what they gave her. So it was good news this morning to find that she not only digested today but that they were able to increase the amount given!
One little bit of bad news this morning... Sarah has a bit of a fever, but they have already began antibiotics to treat any possible infection. We are waiting for the labs on her blood and urine to come back.
She has still been pretty sleepy, but they will be cutting back again today on the medication she gets that keeps her sleepy and pain free. She likes to wake up at night when Mom and Dad are trying to leave... making it hard to leave ....already trying to manipulate us!

Tuesday, November 25, 2003 12:21 AM CST

(Dawn) Hello! Sarah has been pretty awake since I got here this morning, and seems really content. As I write, she is starting her first tube feeding, so we will see how that goes! As the Dr. this morning said, "Everyone should get some real food for Thanksgiving!".

They have also lowered the # of breaths that the ventilator is giving her, so hopefully she will continue to do some breathing on her own to make up for that. The surgeons and Dr.'s are real pleased with her progress, that is good to hear. Hard to believe that her real "due date" was tommorrow and she has already been through so much!

Mom is probably moving down on the favorite person list as I have been able to start changing her diapers and swabbing her mouth while I am here. But I am able to hold her now every day, which she (and I :) really seem to enjoy.

Monday, November 24, 2003 12:08 AM CST

Hello! Well, we have had a good weekend. Sarah continues to remain stable, is doing well. Things do not always move forward as quickly as we would like them to, but as the nurses tell us, no news is good news!
She has been awake on and off, still "napping" most of her day! I am sure that she will likely not continue this pattern once she comes home!
Thanks to everyone for their continued prayers and support!

Saturday, November 22, 2003 1:25 PM CST

(James) Everything is still going well. In fact as you can see in the photos, she is stable enough that Dawn got to hold her for the first time today (that was a lot of work with all the lines and stuff) however I think that they both enjoyed it a lot. Sarah was so peaceful through the whole thing. Things are going great and we really appreciate all the prayers and support.

Friday, November 21, 2003 10:36 AM CST

(Dawn) Somebody's awake! A lot of new changes this morning! We came in to find that Sarah was back on the low-frequency ventilator, and that her Oxygen has also been turned down. She is doing wonderful on that. Her blood pressures have also been more stable.
This morning she was wide awake for the nurse, got a little purple bow in her hair and had a little "photo shoot" with the nurse, hence the new photo! She is also listening to some nice relaxing music today!

Thursday, November 20, 2003 1:44 PM CST

Sarah continues to do well today. She is on just about the lowest settings of the high-frequency ventilator, so should be able to put her back on the low-frequency ventilator soon. They are allowing her to move around a little now, as long as she is not overly active. She has been opening her eyes now and then, and today was making faces at Mom and Dad!
Her blood pressures have been up and down, but her nurse today explained to us that this is likely due to fluid shifting in her body and should straighten out in a few days. That was good to hear!
We are still waiting for her to start tube feedings... so for now just IV's for nutrition!

Wednesday, November 19, 2003 10:50 AM CST

(James) Hi everyone. We got a call this morning that they put her back on the high frequency ventalator. (not really a set back, she just needed a little extra support) She has been doing really well on that. They have her blood pressure medication completly off right now and she seems to be doing great without it. They gave her something for the fluid build up and it is working great. She has already put out as much fluid as all of yesterday. They will probably be letting her start to wake up late today or tomorrom. She already kind of is. Last night when I was sitting there she started to open her eyes on and off for a few minn. untill they gave her more medication. This morning when we came we both got to see a little bit of her eyes. I can't wait to see them open. We are just praying that she won't be in a lot of pain. That was pretty majior surgery and I know I wouldn't feel great after it. It is a long road to recovery but she is progressing every day and we are so proud of her and thankfull to God for all of you and all the answered prayers. Love everyone and love to see your notes. Check back later.

Tuesday, November 18, 2003 2:44 PM CST

(Dawn) Well, not much new today....Sarah continues to do beautifully following surgery. They have been able to decrease the amount of Oxygen they are giving her throughout yesterday and today, so that has been good news.

They are still giving her medication to sedate her and keep her from moving around. We are hoping and praying that she will be as pain free and possible when they do start allowing her to wake up. We have been told that things can be uncomfortable following the surgery due to increased pressure in the abdomen as it will be a lot fuller now.

Thanks to everyone for your continued prayer and support...God is definitly answering a lot of prayers with this little girl!

Monday, November 17, 2003 4:01 PM CST

The big day is over! (Almost :) Sarah returned from surgery at about 2:00 p.m., did very well. They removed her stomach, spleen, small intestine, large intestine and left lobe of her liver from her chest cavity and into the abdomen. They did need to use a patch to close off the hole in her diaphragm.
Since surgery, she has remained on the low-frequency conventional ventilator and her blood gases have continued to look good. The doctors and surgeons have told us that she will be on a ventilator anywhere from another few days to a few weeks. They will be able to start tube feedings with her shortly and after she is off the ventilator will be able to work on breastfeeding. Then she will be ready to go home!

Sunday, November 16, 2003 10:51 PM CST

(James) Hi everyone, We just got here from church and everything is great. You don't how great I feel to show up and to see that she is doing so good. Over the night they have brought her completely off of the nitric oxide. I in no way expected that, but God is great! They said that they wanted to get her down to at least 5 to go to surgury, then from there they cut it in half, and in half, and in half, until she is off of it. During this time they are constantly monitoring her blood gases to make sure she is doing ok. The nurse told us last night that they usually have a hard time getting completly off of it befor surgery, they just seem to need to hang on to that last little bit. So needless to say I am so pleased. Thank everyone for all of your prayers. You all have a part in this and we are so thankful. I can't tell you how blessed I feel to have so many people praying for her. It is the greatest and most humbling thing I have ever felt. More later.

(Dawn) Hello! It is late evening, and our little gal has made it through the day just wonderfully! She was able to come off of the Nitric Oxide and maintain stable lung function all day long :) We hear nothing but positive things from the doctors and nurses caring for her, which is a wonderful feeling going into surgery. God has blessed us with a miracle and given our little girl so much strength for her journey! We do also hear from the nurses that she "has an opinion" - but I think that stubborn can be a good quality and certainly appropriate for these circumstances! I just tell her we might have to work it out when she comes home but for the time being she can be as strong and stubborn as she would like to be :)
So..she is set for surgery tommorow morning, 10:30 a.m. We have heard it may last anywhere from 2-4 hours...hopefully that time passes quickly! Thanks to everyone for their prayers and support... God gives us exactly what we need and you all have been a part of that :)

Sunday, November 16, 2003 11:23 AM CST

Saturday, November 15, 2003 5:50 PM CST

Hi everyone, This is our first entry. Sarah is now a little more than 5 days old. The most important thing in these CDH cases can be the first 24 to 48 hrs. We were so thrilled to get through them. After the first day they had changed her from the conventional ventalator to the high frequency one. That wasn't to good to see for the first time. However, they got her stable on that over the past few days and things have steadily improved. The goal is to get her to a stable enough point so that they can go to surgury and repair the hernia. Right now they have the surgury scheduled for monday morning. Today we were so pleased to show up and to see that they have her back on the conventional ventalator. They have also been bringing her down on her nitric oxide and O2 levels today with success. We are so proud of her. Once she gets back from surgury she may need to go back on the other vent, and then it will all be about the recovery. We pray that she will have some good lung and she will recover quickly. It will take a couple of weeks to even months to get to the point where we will be able to take her home. They will have to wein her off of the vent and medicin. They will also be working on feedings. We can't wait for that point, and the time when we will get to hold her. We want to thank everyone for all their prayers. We totally feel that God has blessed us and we have learned so mutch already. She will be an awsome testimony of His grace. We will keep you informed.

Saturday, November 15, 2003 5:30 PM CST

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