Anya Mae's Story: Day 72

Monday, August 27, 2012

Day 72

Our prayers were answered. After posting last night I went up for a quick visit and the redness had receded somewhat; when I came in later today it was all but gone. She still did have some right at the g-button site. Her stomach was measuring where it was before the redness started. Dr. Kays was happy and restarted feeds at a low rate. I am not sure how quickly we will progress from here but I am sure it will be slow at first.

I am still anxious to get going on getting her off of the vent. This is why:

I know moving your head around is not a qualification for getting off the vent but still! The vent is really cramping Anya’s style! I am beyond thrilled that she can move her head like that but it makes me so sad for her. There are so many other things we could be doing with her now. I have not heard of the plan for weaning but I hope we can get on it quickly, and that she is successful this time!

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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.