Anya Mae's Story: Day 21- Three weeks old

Saturday, July 7, 2012

Day 21- Three weeks old

My prayers from last night were answered, so far we are having that ‘boring but improving’ kind of weekend! Anya was able to come down on her ECMO a little more today, so we are praying, hoping, crossing fingers, dancing a going off ECMO dance: for possibly in the next few days. As long as she is improving the whole CT idea is shelved, she may still need one but it is not a priority right now. Dr. Kays weaned some of her sedatives, he wants her more awake and it helps her breathe more on her own. It was great seeing her awake and moving today, we have not seen her awake every day and it is really discouraging visiting a snowed baby. Much, much easier to be optimistic visiting an awake wiggly baby! It was a great day!

2 comments:

TriciaJuly 7, 2012 at 7:39 PM
So glad it was a great day! *Doing a going off ECMO dance*
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AnonymousJuly 8, 2012 at 6:13 AM
Awesome news first thing in the morning. Yayyyy. Come on girl, lets get off that ECMO.

Anu
http://ourcdhherolittlea.wordpress.com/
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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.