Anya Mae's Story: There is no place like home for the holidays

Wednesday, December 12, 2012

There is no place like home for the holidays

We are home, and Anya is doing wonderful. I know I keep talking about how pleasant she is with every post, but it cannot be overemphasized. She has so much energy, kicking her legs, she has been able to grab her feet a couple of times, she is always working on getting to them. She is cooing and verbalizing all the time and even when she fusses she has a half smile on her face. She has started smacking her lips when hungry; I tried offering the bottle to her a few days ago and she was not as resistant. I was planning on giving up the bottle and working on a cup, but now I think it is worth giving the bottle another shot. We have speech therapy at Children’s (groan) tomorrow so we will work on that then.

I'm gonna break out of here! Did I hear someone is sending me a steel file?!?

Anya has never been as snuggly as other babies. She never got used to being held early on so I think it can stress her out. Tonight she tolerated being laid on my shoulder, usually she fusses. Then she tolerated a bit of tummy time and held up her head. All of these new behaviors tell me a few things, first, this was percolating for a while, and second, Anya’s baseline personality is laid back. I have really been thinking she was just a fussier baby than Arwen, but now I can say with certainty that if she is fussy something is going on.

Tonight we watched Charlie Brown Christmas as a family, with the real Christmas tree lit up. I will get a real Christmas tree as long as I am physically able, the wonderful piney scent cannot be reproduced. Whenever we put up a tree I am five years old again. Anya sat on my lap staring in turn at the TV, the tree, and Adam and I. She was in a semi-reclined position and she held her head steady. Sitting there with the whole family together was incredible. Last year this time I was dreaming of that moment, and what has happened in the past year to make that dream possible…I am overwhelmed.

Merry Christmas everybody!

Arwen as Mary for her preschool's Christmas program.

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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.