Anya Mae's Story: Day 55- Sweet

Friday, August 10, 2012

Day 55- Sweet

In one word, today was sweet. Anya was fussy again because of the c-pap, I was worried holding her would make her more upset but we tried it anyway. The moment I got her she settled right in and went to sleep for a while:

Then she woke up, inspected everything to the sides of me, and then looked at me. Then she started to coo in this little croaking voice. We cuddled for several hours, and she was calm the entire time. It was wonderful.

When Adam came he got his turn:

Dr. Kays came by and was very excited for us, hugging me and patting Adam on the back. He gave us a good expectation of when we could get her home, the first time since she was born that it has been discussed. Anya will need another surgery to prevent reflux; she hasn’t shown any yet but he thinks it is inevitable. He will not take her for another procedure for another 3-4 weeks to let her recover. Usually two weeks after the surgery the baby can come home. So we are looking at six weeks at the least, only two weeks more than he originally thought.

While we are waiting Anya’s lungs can get stronger and get used to doing more; her oxygen will be decreased as it can be. She may/probably will still need oxygen when she comes home, but it will only be temporary, she will grow out of it. We will work on getting her to eat on her own. That can take some time and may still be an issue after we come home, but there are therapists that we can work with at home.

Six weeks seems like a long time but we are already over the hump of the total time we will spend here. Now that I can actually spend quality time with her I think the time will go faster. Sitting in a chair and staring gets boring! Thank you Lord!

1 comment:

TriciaAugust 10, 2012 at 8:00 PM
This is all such wonderful news. I am so happy to see you getting to hold your sweet baby. :)
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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.