Today the 3 of us went to see Blair. She was doing great when we got there. They are now feeding her for 2 hours on and 1 hour off. She is at 24ml/hour and they are still only giving her 1 bottle/day. They were going to give her one at 5:00 pm tonight while we were there visiting and they decided not to because her respirations were at 84 and not below 70. We had also just changed her dressing, diaper, took her temp and blood pressure. I also wiped her down with some warm wet wipes because she was a little stinky. :) She is getting a big bath tonight though! This was the first time that Britt has seen her Omphalocele since she was born. Baylee kept saying it was her big owie on her belly!
Kelly - to answer your question... I have decided not to breastfeed her. I don't want to be the only one to be able to feed her. I can't commit to being at the hospital 5 or 6 times a day especially having a 3 year old at home. But, she is getting the best thing from my breastmilk so I'm SO thankful I'm not having any issues pumping!
Hugs - Tiffany
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My Peepers!
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!
2 comments:
Hi Tiffany!
Glad to see and hear that everything is going well!! What a perecious little one she is ;) And Baylee, OMG, what a sweetie! I love seeing the pictures and reading your updates on how things are going, Thank You for taking the time to do this.
If you have explained this before, I apologize I don't recall hearing or seeing it...What is the purpose of the "dressing", other than protecting it? Is it suppose to help push everything back in or will it stretch and grow along with her? Amazing it all is and what a little trooper Blair is :) She must be excited to go home too she's keeps progressing so well ;)
More later! Love Ya!!
Clothesline
She is doing so well!!! I remember those teeny-tiny bottles. Charlie couldnt' even drink one of those when he dirst started. Sounds to me like Blair stomach is doing A-OK.
I'm sorry you had a nurse that you didn't like. I find that the better your child does, the crappier the nurses get. I had a couple of nurses that I wanted to kick in the butt once we got out of intensive care. There was one in intensive care that I almost killed too. Unfortunately, though, I tend to bottle it all up and just cry.
I think that's great that you're pumping. I struggle with that so much, but I did make it to the three month mark, which was good enough for me.
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