Anya Mae's Story: Day 94- THURSDAY!!

Tuesday, September 18, 2012

Day 94- THURSDAY!!

We are leaving on Thursday! Tomorrow she will get her central line out, and her oxygen will be delivered. We already have formula for the road and all of our other supplies. Her medicines have been approved and will be ready Thursday morning. It is not certain what time of day we will leave, I am hoping not too late! Anya’s oxygen is set at a higher level so she doesn’t have so many lows; she has been much happier since it was changed. She had two wonderful feeding sessions today where she took a good amount of formula. She is doing so well!

We were able to have a long talk with Dr. Kays about various going home issues. This was probably the last time we would get to talk much until we leave so we took the opportunity for a photo and to give him a gift. How do you thank someone for saving your baby’s life? We chose to give Dr. Kays a case of Budweiser longnecks. J

On the left is Joy, a RN and RT who is working with Dr. Kays on CDH research; she also helps with CDH families. She has been a great source of support. I think Anya is the cutest one though!!

So very excited, happy, nervous, worried…..but so thankful!

2 comments:

AnonymousSeptember 18, 2012 at 7:48 PM
I am sooo happy for you. All the best with the journey home!!!
http://ourcdhherolittlea.wordpress.com/
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TriciaSeptember 18, 2012 at 9:26 PM
YAY!!!!!!! I'm so happy for you! :)
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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.