Anya Mae's Story: Day 13

Friday, June 29, 2012

Day 13

Boring is good! Not to much to report on today; she did not have any problems with her ECMO or moving too much. Adam started working again today; it was also Arwen’s last day visiting so I spent it with her and Ruth and Dan. Arwen needed me more today than Anya did. We went to a historical farm site with animals and back to the hotel pool so she could swim. I wish I was four and so easily entertained. Earlier today Arwen got upset and ended the episode clinging to me; later she told Ruth she wasn’t leaving with her. L We all spent the day discussing all the fun things Arwen would miss if she didn’t go home, and all of the boring stuff I would be doing; along with the wonders of Skype. I think she is more comfortable but we will have to see how the morning goes. I will miss her but am still very glad that Ruth and Dan can keep her for a while; it would be very hard on all of us if she stayed, no way could we give Arwen the amount of attention she deserves. Praying for safe travels and Anya’s condition to continue to be stable!

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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.