Anya Mae's Story: Day 73

Tuesday, August 28, 2012

Day 73

Anya had a good day today with increased feeding and the vent settings decreased. She spent some time propped up in her boppy again. She really likes it but took her some getting used to at first! She gave her nurse one of the most scathing looks I have ever seen. I didn’t get the best picture of it but here it is anyway:

Are you NUTS?!?

Here she is later looking at Dr. Frog (this is what Arwen named her).

I got my eyes on you!

This evening Dr. Kays came in with a family expecting a CDH baby and they asked if it would be OK to see Anya. When we had our consult we toured the NICU as well but there were not any CDH babies there at the time. I told them a little bit about Anya’s course and what we were told in St. Louis. It was nice to give support to someone else. It seems so long ago since we were in that situation: we came down for our consult in April. I pray their baby does as well, or even better than Anya!

1 comment:

TriciaAugust 28, 2012 at 10:41 PM
LOL! I love that pic of her looking at the nurse! That kid has some SPUNK! So happy to see she is doing well!
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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.