Anya Mae's Story: Day 44 update :(

Monday, July 30, 2012

Day 44 update :(

Well, it is now 9pm and I just got off the phone with the nurse practitioner- Anya started struggling soon after we left at change of shift and they had to intubate her again. She never was in severe distress; they intubated her before it got too bad. So I guess we try again in a few days.

1 comment:

Jennifer TenneyJuly 31, 2012 at 6:23 AM
Awe! Big Hugs! Unfortunately that is very common! It often takes a couple or even a few tries to get extubated. I am sure it is heart breaking though. On a good note though, it will probably shorten her time on C-PAP. Dakota hated HATED C-PAP! She was a devil baby on C-PAP - throwing fits, throwing her head around, crying constantly. She would try to maneuver it out of her nose and was only quiet when she managed to get it out of at least one nostril. I made a deal with her and would let her leave it out of one nostril if she kept her sats up. Sorry- just warning you. A lot of babies are only on C-PAP for a few days, but Dakota got stuck on it for a couple of weeks because she caught a staph infection in her picc line. Many, many prayers for a successful extubation in a few days or less and a short stay on C-PAP!!!!!
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.