Anya Mae's Story: Day 31

Tuesday, July 17, 2012

Day 31

Posting early today because there is not much to say! Anya’s blood gases and oxygen have been doing great since she was off ECMO. Dr. Kays is planning to take the cannulas out tomorrow; then it will be easier to move her around. The cannulas are in the right side of her neck, so she has never been able to have her head facing her right side.

The next step is to get her feeding, and wean her off the vent. It may be a while before the vent can be weaned, they may start in the next few days but it depends. Anya’s stomach keeps filling with air that she is not able to get rid of. We are not sure what it is yet but her x-rays look normal, Dr. Kays is not concerned. I believe he is going to watch and wait to see if anything changes. As of now she is not getting any feeds, but she is getting nutrition through IV’s just like she always has.

Right now just enjoying the miracle of this baby who does not need as much support!

1 comment:

Jennifer TenneyJuly 18, 2012 at 5:19 AM
Yay Anya!!!! What a rockstar!
I hope you guys have a great day today!
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.