I spoke with Dr. Warner today and feel much better about making some sort of decision about the tissue expanders for Blair. He said that it's almost better to do these type of things when they are younger. The issue they run in to when they get older is finding an expander that's big enough and expanding everything to fit over the O.
So, looks like little missy prissy pants will be having her 1st surgery sometime this Summer. And, 6-8 weeks after that she will have some sort of closure surgery. I guess the unknown of this not being a "normal" type of procedure scares me. I know she will eventually have to have it. And, my friend Brandy made a good point. It's better that this happens when she's younger and doesn't mess with the bandages and everything then when she gets older.
I still haven't heard back from the Cardiologist regarding Baylee's condition. I hope they call soon!
Hugs - Tiff
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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:
Another upside to her having the surgery younger is that she will never remember it. Buddy had to have laser surgery on both eyes before he was even due (but he was 2.5 mos old) and the hydrocele and circumcision at 18 mos. No recollection of that stuff... (for him - for mom and dad, it was a little scarier!). You have a place to vent - here - and I'll be here for you always! :-)
I agree it's far, far better to have it now when she won't remember!
No comment...just wish I was there to give you a big 'ol hug.
Me
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