Anya Mae's Story: Day 4: Boring and loving it!

Wednesday, June 20, 2012

Day 4: Boring and loving it!

Nothing much happened today, and that is fantastic in my book. It is too early for dramatic improvement, so any news to report would be of the bad kind. She is swollen all over, that is to be expected as normal with the ECMO, but there is a lot of fluid in her face so it is difficult for her to open her eyes. They have given her some diuretics and it should improve with time.

The chest tube didn’t get placed today, Dr Kays was preparing to do it this evening when we went up, but he got called away to the OR on an emergency. He will probably do it sometime tomorrow, it wasn’t essential that it happen today. I got to ask about the chest tube more; there is some fluid in the left side of her chest along with air where the stomach contents used to be. The tube will suction off the fluid and encourage the heart to shift more to the left where it is supposed to be, allowing her right lung to expand better. Everyone on the medical team is happy with her progress; she is off all her blood pressure medications.

Tonight’s visit was one of the most enjoyable; she had started moving more over the course of the day. She was moving her hands and feet around, and scrunching up her face. With the intubation tube in she cannot make noise on her own, but there must have been a slight leak around it tonight, because she was blowing bubbles and making some grunting noises. So hopefully tomorrow we will have more of the same to report!!

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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.