Anya Mae's Story: Day 92

Sunday, September 16, 2012

Day 92

Today was a lot better than yesterday. Anya was a lot mellower, she had a couple of situations where she became crabby and her oxygen dropped a little, but she recovered quickly with her oxygen turned up. I was able to talk to one of the fellows with Dr. Kays and she did not seem too concerned about changing her oxygen or having the TC test. I feel better after talking to her and hopefully when Dr. Kays comes back we can get this show on the road, literally. I can just picture the introduction: ‘It’s The Anya Mae Show! With Adam driving and Kelly in the back on feeding duty! Will they be able to drive more than two hours before taking a break!?! Will Anya’s oxygen need to be turned up in the Great Smoky Mountains!?! Tune in and find out!!!’

Another positive event was Anya’s bottle session today. She did really well; she actually sucked on the bottle this time and did not just chew it like yesterday. She hardly gagged at all even though she pulled the nipple into her mouth pretty far. This bottle has different settings on it to control the amount of formula it will allow out, right now we have it about half of a preemie nipple size. She has gotten overwhelmed with the amount of formula she would get out when she sucked before but today she handled that well also. (I am having a hard time using words like ‘nipple’ and ‘sucked’ without giggling to myself a bit. Apparently I am part thirteen year old boy.)

Estimated three days remaining…

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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.