Anya Mae's Story: Four months old!

Tuesday, October 16, 2012

Four months old!

Anya is four months old today! I am still getting used to this stay at home mom gig. I started an Exel spreadsheet to help me remember everything I am working on. There are insurance issues, medication issues, doctor appointments, and therapies from Children's as well as First Steps. That way I can enjoy moments like this, instead of worrying there is something else I need to be working on.

Anya is gaining weight well, she gained about a pound in two weeks time. She has started batting at things with her hands and is holding her head up a little better.

2 comments:

TriciaOctober 19, 2012 at 1:14 PM
Happy 4 Month Birthday, Anya!
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Laura // ElizabethOctober 21, 2012 at 11:54 AM
I love this! It's so cool to see them interact and Anya just seems to love the entertainment this is Arwen ;)
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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.