Anya Mae's Story: Day 34

Friday, July 20, 2012

Day 34

Anya is getting rid of various tubes. One of her central lines was pulled out today, and rumor has it she may get one of her chest tubes out tomorrow. I have not heard if her vent settings are going to be weaned soon, but I do know that all her blood gases are coming back good.

Her tummy is still a little wonky. She keeps retaining air; her belly blows up like a balloon. Her x-rays still do not look abnormal so they are watching it, she has a tube sucking the air out to keep her belly from getting too full. She hadn't pooped for about a week or so, then yesterday started again. Hopefully she just needs to get that moving and that will be the end of it. I am anxious to get her eating, and we can’t feed her until her stomach gets better.

It is obvious that she is getting better but another sign is all the staff that keeps wandering in her room. Anya’s room used to be the popular place to be- at times it seemed like half of the NICU staff was in there. She doesn’t require as much supervision now but old faces still stop by to say hello and say how good she looks. Very gratifying especially when they haven’t been here in about a week. Last Thursday was her thoracotomy, that morning she was a pretty sick baby. A week later she looks a lot different!!

1 comment:

Jennifer TenneyJuly 20, 2012 at 8:13 PM
YAY!!!!!!! Go Anya!!!!
Hugs,
Jennifer
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Summary of Anya's story.

Anya was diagnosed at my 20 week ultrasound with congenital diaphramatic hernia. Over the course of about a month multiple tests were done to determine how severe her case was. A group in St. Louis told us since her head-to-lung ratio was at 0.8, with three being normal and lower than one being severe, she would not have much chance at survival. In fact, one doctor said it would be 'ethically optional' for us to attempt treatment; she was so severe that any treatment would be futile.
Doing research online I came across Dr. David Kays, a pediatric surgon at the University of Florida in Gainesville. Babies under Dr. Kays care have a 90% chance of survival. Nationally the survival rate is 50%. We flew down for a consult and he did agree that her CDH was severe, and he offered us no promises, but he thought she might have a 65% chance at survival.
We relocated to Gainesville the 36th week of pregnancy and I was induced in the 37th week. Anya's CDH repair was done the morning after she was born; there was a very brief window where she was stable enough to be operated on. Only hours after surgery she was put on ECMO, Dr. Kays had spent the entire day with her, guiding her care.
Anya was on ECMO for 30 days; during this run she had a bleed in her chest and needed a thoracatomy to remove it. She improved after the thoracotomy and was able to come off of ECMO.
Weaning Anya off the vent was a big challenge. She was extubated three times before she was successful. After the second failure she had a nissen fundoplycation and a g-buttton to treat reflux, the thought was that if she was able to digest feeds her lungs would be stronger.
She is still working on overcoming the CDH issues. She still uses a G-button to make sure she gets enough calories. She gets speech, PT and OT but is well on her way to catching up.
Adam, Arwen, Anya and I thank God for all of the blessings he has provided on this journey: family and friends who have been extremely supportive, the fantastic staff at Shands, and of course Dr. Kays as well.