Anya Mae's Story: Day 50

Sunday, August 5, 2012

Day 50

Vent settings are being weaned; slower this time. Anya’s stomach is doing well; the go-lyetly will stop tomorrow. An x-ray will be done and then they will be discussing feeding her again. It will start through a tube as before, and then when she is off the vent and cpap she will be able to start doing oral feeds. As I have posted repeatedly, CDH babies have a lot of oral aversions. It is usually worse the longer they have been intubated. I have hopes that Anya’s will not be too severe since she is interested in sucking on a pacifier.

Other than holding her (of course) I am eager to learn when we will be working with different therapies. She hasn’t had normal stimulation or the ability to use her muscles normally. After staring at her for so long I am excited to have something to do with her recovery, this is something I can help with. It will probably not start until she is off c-pap, so it will be a while.

I will be on my own Monday night; Adam is leaving on a short business trip and Arwen and Ruth are leaving tomorrow as well. I will miss everyone!

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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.