Anya Mae's Story: Day 46

Wednesday, August 1, 2012

Day 46

Anya had a busy day today, but still managed to be awake for us a while today, here she is wrapped up in one of her big sister's 'baby burritos':

She was very interested when she went downstairs for her test; her nurse went down with her (awesome!) and said that Anya was looking all around at everyone.

Anya’s test came back negative. She has been having a lot of dirty diapers today; a very good thing. To do the test they shoot some contrast up in the colon, the contrast can get the bowels moving and it can sometimes solve the problem, if a stuffed up bowel is the only issue. It could still be that she is just ‘full of poop’, at least I hope. Anya won’t be the first one in this family to be guilty of this issue! J

In less fun news (interesting that poop is fun news around here), Anya needs another surgery tomorrow. This is a small one; she needs a central IV line placed. She had a different kind of IV but it went bad, and they have been unable to get another one in. Dr. Kays is going to do it at the bedside. It is a common procedure. I am still a little sad that she has to have something else that puts her at risk for clots and infection; even if it is much lower than what we she has already been through.

So tonight I am praying that dirty diapers will resolve her stomach issues, and that her procedure goes smoothly tomorrow.

1 comment:

TriciaAugust 1, 2012 at 8:49 PM
Anya is looking great! I hope everything goes well tomorrow! I loved yesterday's update with Arwen and Anya together. Arwen has gotten so big! She is adorable. They both are!
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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.