Anya Mae's Story: Day 69

Friday, August 24, 2012

Day 69

Another day of everything going the right way! The vent settings were decreased. Her feedings increased, and there is also a plan in place to increase it further. Her feeds will be increased every twelve hours as long as it is tolerated until she gets to 20ccs, then they will consider if she needs a concentrated formula. It may be too hard on her to have a normal volume of formula, but she still needs the calories. After she is able to tolerate all the formula her body needs, they will try to give it over shorter and shorter periods of time, until she can get her feedings in like any other baby. When we get on nasal cannula (aka ‘normal oxygen’) she can start taking a bottle. We won’t have the reflux to deal with but we will have to see how much oral aversion she has. Anya will also have to learn how to eat, and to manage eating and breathing together.

I am sure sometime after she tolerates feeds her TPN will be taken off. At the same time her sedatives will be weaned. Someday we will be IV free; I see the light at the end of the tunnel!

Last night I went looking for toys that Anya could grab onto instead of all of her various IV lines, heart monitoring wires, intubation tube, etc. Babies can extubate themselves on accident! She has been able to track toys across her field of vision before, but today she was VERY interested in a red and white rattle ball toy. She followed it from her preferred side, her left, all the way over to her right side, turning her head. This is not easy for her since she had to face her left side for a month while she was on ECMO. So now I hope that getting her to look over that way will help her get that neck stretched. At some point after she is extubated we will have OT to work with her, but no reason we can’t as long as she isn’t worn out by it. Here she is with her ‘prize’ in her hand, we kept telling her to throw it at various nurses but she wouldn’t do it, can’t imagine why:

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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.