Anya Mae's Story: Day 14

Saturday, June 30, 2012

Day 14

Anya is two weeks old today! She is doing well with only a few small concerns. Her chest tube did not seem to be draining all the fluid in her chest, but laying her on that side seemed to get a lot more fluid out. Hopefully everyone will be satisfied with how the x-ray looks in the morning.

The other is one of her oxygen levels- before anyone freaks out, they check four different kinds of oxygen levels at all times, along with checking it by blood work frequently, and there is no concern that she is not getting enough. The low one is her post-ductal oxygen (I think that is the name anyway); there is no immediate concern because everything else is looking well, but they turned up her ECMO today. Until this number improves they will probably not start weaning off the ECMO. The number has been fluctuating back and forth for a few days, I am not sure why, I believe they are hoping getting off more fluid and turning up the ECMO will help.

1 comment:

TriciaJune 30, 2012 at 8:34 PM
Happy 2 week birthday, Anya!!! :-)
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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.