Anya Mae's Story: Day 93

Monday, September 17, 2012

Day 93

Anya had another great bottle session today. We tried a new kind of nipple and she really did well, taking the most she has ever taken from a bottle. Her gag is getting less and less sensitive, and her swallow is improving. It is very exciting how far she has come in such a short period of time. She didn’t have many issues with oxygen today; I am thinking we will just get instructions to increase her oxygen for comfort, as long as it is not that often. It is hard to know. The past couple of days Anya has had more energy and has been even more social than before; this is the most ‘normal’ she has ever been. There have been no major changes with any of her treatment for a while now.

Still no absolute on when we will get out of here. Dr. Kays comes back tomorrow and I am sure we will know more then. I really don’t think there is that much keeping her here, so I am really hoping for Wednesday. Right now we do not plan on staying here long after discharge. Depending on what time of day she gets out we may spend the night, but if there is much day left we may try to get to Atlanta. It seems wise to spend time with her in one place right after discharge but there will be no way to be in a ‘normal’ situation. We would either be at RMCD or at a hotel and I really don’t feel like that is in Anya’s best interest. The only way to get to normal is to get home.

Estimated two 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.