My little Rockstar Blair will be coming home at the end of the week. I'm guessing Friday. Dr. Lyle hasn't given me a date yet, but he said it would be this week! :) I'M SO EXCITED!
Words cannot express the feeling I have! It's been 6 weeks as of today... in the beginning they told us she would be there 3-6 months! So, she is really proving them wrong!
Blair continues to take ALL of her feeds by bottle. They have had a couple of feeds where they had to put about 5-10ml in through the tube because she wouldn't finish it, but that's not bad. Today she has taken all of them and at noon when I was there she took the whole bottle in 10 minutes. They have increased her feed time to 25 minutes so she should be able to finish that! They have also increased her calories (the additional calories) to 25/day.
When I got there today I noticed she had spit up on herself. So, I had to change her and we had to change the dressing on her O. I was VERY surprised to see how much the skin has grown up over it! It's almost doubled since the last time I saw it. They are keeping some kind of powder on the new skin to keep it dry. I guess under the bandage it stays kind of moist and it was a little pink/red. But, it wasn't infected or anything. And, I was surprised to see how much it has decreased in size since the last time I saw it!
I have pics that I will post tomorrow. I've got to go pump and we are off to a ballgame!
Hugs - Tiffany
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Omphalocele and PPH/RVH
This page is for Baylee and Blair. Blair was born with a Giant Omphalocele on April 7th, 2008. She spent 7 weeks in the NICU at AR Children's. Amazed by the Dr's she came home at the end of May only on a little bit of O2 and no other medications. She was also diagnosed with a 3mm VSD of her heart. That has since CLOSED COMPLETELY and will not require surgery. Recently we found out that she was born with her heart on the right side of her chest. She had surgery on Aug. 20th without expanders. The Dr's were able to do a closure surgery with a bit of alloderm pulling the muscles together. We will be in St. Louis for a few weeks while she recovers.
Baylee is an energetic 4 year old. She loves swimming, her babydolls, playing outside and most of all her little Sissy! She is our little princess and we have been amazed at how well she has reacted to her little Sissy. She is WONDERFUL to her little sissy and loves her so much!
She was diagnosed on April 13th with a Right Ventricular Hypertrophy due to Primary Pulmonary Hypertension. In July we traveled to Boston to see a Hypertension Specialist. I LOVE this Dr! She is wonderful and answered all of my questions. She will have another Heart Cath on Dec. 1st to check the pressures in her heart again. She is now sleeping with a bit of oxygen just as a precautionary.
I hope that everyone enjoy's reading about our lives and if you learn something in the process that's even better!
Baylee is an energetic 4 year old. She loves swimming, her babydolls, playing outside and most of all her little Sissy! She is our little princess and we have been amazed at how well she has reacted to her little Sissy. She is WONDERFUL to her little sissy and loves her so much!
She was diagnosed on April 13th with a Right Ventricular Hypertrophy due to Primary Pulmonary Hypertension. In July we traveled to Boston to see a Hypertension Specialist. I LOVE this Dr! She is wonderful and answered all of my questions. She will have another Heart Cath on Dec. 1st to check the pressures in her heart again. She is now sleeping with a bit of oxygen just as a precautionary.
I hope that everyone enjoy's reading about our lives and if you learn something in the process that's even better!
3 comments:
Oh my gosh I forgot to mail the thickener. Heading to the post office!!!!!
Tiffany - That is WONDERFUL news. I'm so happy that you are all going to get to be home together again.
Kickin' Butt and takin' names already - That's our girl! I am so excited for you all!
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