Anya Mae's Story: Day 49

Saturday, August 4, 2012

Day 49

And we have poop! Anya saved it for Adam; she pooped while he was changing her. All those talks with her have paid off J. You should have heard me in the waiting room questioning Adam about the poop: ‘What did it look like? Was it transitional? Watery or just loose?’ Etc, etc. The go-lytely will continue for another two days; she has not had suction to her belly for two days and it is not blowing up so much. Her vent settings came down a little.

All of this is wonderful of course; more important is the relationship that is quickly developing between Arwen and Anya. Tonight after a full day of swimming and getting pizza and ice cream it was Arwen’s idea to go see Anya. Even though it was past eight and getting close to bedtime we went up for about 90 minutes. Arwen spent the entire time entertaining Anya and settling her down. I tried to get some of it on video but she clams up when she sees a camera:

And here Arwen touching Anya's head, it helps calm her:

Wonderful day!

1 comment:

Jennifer TenneyAugust 5, 2012 at 2:26 PM
Soooo sweet! What wonderful sisters!!!! Yay for poop!!!!
Hugs,
Jennifer
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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.