Anya Mae's Story: Day 96- See ya later, alligator!

Thursday, September 20, 2012

Day 96- See ya later, alligator!

We are so out of Gainesville!

Leaving was emotional. I felt sick all morning as we cleaned our room and loaded up the car. I thought I hadn’t slept well; really I was just really wound up. There was not much for the nurses to do; we ended up getting held up getting an oxygen tank carrier. As we were packing Anya’s room up I just kept saying, ‘I can’t believe this is happening, I really just can’t.’ The past three months have been long but at the same time they have flown by, and I can’t believe we are where we are. Awesome.

Walking out of the NICU doors, for the last time!

What, I am outside? Who cares!

I was very excited to see what Anya thought of fresh air, but she wasn’t impressed, immediately falling asleep. She stayed asleep through town until we went to top off the tank. Stopping woke her up and she started to fuss. She didn’t settle quickly and I was worried the position in the car seat was making it difficult for her to breathe. So then we went through the list of things to look for that show Anya is not getting enough oxygen. Color is one; she needs to be nice and pink. After seeing her color in artificial light for three months it was difficult for me to tell in the sunshine. Just to make sure we took her out of her seat and turned up her oxygen a bit until she settled down. I have been nervous about dealing with normal baby fussy periods without the reassurance of the oxygen monitor, but this experience made me feel more confident.

She has been doing really well the rest of the trip, usually asleep until we stop, occasionally waking up and then she gazes at the pattern of light from the window. Welcome to the world little one, we have been waiting for you!

Homeward bound!

Right now I am finishing up the post in the hotel, and Anya is in the bouncy seat staring at me. She fussed until I put her where she could see me.

This will be the last numbered post. Ninety six days in the hospital, two and a half months intubated thirty days of ECMO, and four surgeries. One miracle. Taking our baby home, priceless.

2 comments:

Jennifer TenneySeptember 21, 2012 at 3:55 AM
Congratulations!!!!!!!!!! What a special day!!!!!!!! Your little miracle is adorable and I will still be following and praying for a smooth transition to home and continued good health and progress! I am so glad to have met you guys and to have witnessed your miracle!!!! Thank you for sharing with us!
Hugs,
Jennifer
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TriciaSeptember 21, 2012 at 1:08 PM
This brings tears to my eyes. What an awesome miracle! I am so happy for you all! Enjoy being home with both of your beautiful girls!
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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.