Anya Mae's Story: Day 82

Thursday, September 6, 2012

Day 82

Lots of moves forward today! I was not able to get up to see Anya until this afternoon because I had to pick Adam up; but I did call and got an update. They are slowly moving Anya’s feedings to bolus feeds, and she is completely off her pain medicine! Soon they will discuss when her central line will be pulled, after she is off the antibiotics.

When Arwen and I went up, we were in for a surprise. Anya had been moved from comfort flow to nasal cannula oxygen. Nasal cannula is what I call ‘normal’ oxygen, the last step before not needing oxygen at all! She did great with it all afternoon. To make sure she was comfortable on less support, we did not try feeding today, but OT did work on her suck reflex.

OT works with very small, minute signs. I am learning to pay attention to tiny body language that indicates what Anya needs next. When she is looking at a toy and moving her arms, it means that she is starting to realize she should do something to reach for it. We let Anya suck a finger, which made her mouth make saliva, which then she had to work on to swallow. Baby steps in the literal sense!

Daddy, I missed you!!

Being on nasal cannula is a VERY, VERY, EXTREAMELY exciting development. We are so much closer to where we need to be, and with the other IV and feeding changes, it is a world easier to get her up and hold her. It has been a while since I held a baby this small, and it has been difficult to feel comfortable holding her with all of the stuff connected to her. Now I can pick her up and flip her around nearly any way I need to, and it is easier to connect.

On the home stretch! Thank God!

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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.