Anya Mae's Story: Day 90-Three months...whew

Friday, September 14, 2012

Day 90-Three months...whew

Every day is a learning experience with Anya. I had blamed her crabbiness the past couple of days on her immunizations. Today we figured out that when she is particularly active or is being fed, g-button or oral, she needs more oxygen.

I was working with the OT on Anya’s noon feed and it wasn’t going very well, she was crabby and was not taking the bottle very well. We try to get her to settle down and stop crying before we take out the bottle so she doesn’t learn that crying makes the bottle go away. This time she just would not settle down. Her oxygen monitor was going off but it does frequently because she moves so much; when she is moving the number is not accurate. I was watching it out of the corner of my eye and realized that the numbers WERE valid, and she was in the low 80’s when she should be high 90’s.

We did everything we could do to settle her down: vent her belly, give her some sugar water, pick her up and rock her, change her diaper, nothing worked. She became more and more frantic and I realized she was air hungry. You may remember that from the whole c-pap post before. Her nurse was involved then so she OK’ed turning up her oxygen and she almost immediately settled down. Later her nurse was giving her a g-button feed and watched her get fussy as soon as the feed started, and even though her oxygen saturation was normal she turned up the oxygen again and Anya settled down. Needing different amounts of oxygen is a fairly routine thing.

So tonight we put up her oxygen before we tried a bottle session and she did great! Still no normal sucking and swallowing but she enjoyed chewing the nipple and sucked a little bit of formula out, and was not too overwhelmed by it. I took the nipple out of her mouth several times to see if she was done, but each time she fussed and when I showed her the bottle she looked at it and opened her mouth. Her OT was excited and told us to use our intuition on when to try the bottle over the weekend. I am so proud of Anya. She is making her way! The beginning of the day was frustrating but the end was so satisfying!

Estimated five 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.