Anya Mae's Story: Pictures!

Wednesday, October 10, 2012

Pictures!

I know what you all want- all you really want is pictures! So here is a picture fest:

Arwen playing with Anya; we had this same play gym for Arwen and it is neat seeing Anya playing with it.

Anya and Grandma Ruth

Hi, what are you doing?

Mommy thinks I should sleep but I am not convinced.

And just because I have not been fair to Arwen and haven't put potentially embarrassing photos of her up:

This is decorative tape on Arwen's face. For some reason she put it on before she fell asleep.

1 comment:

Smilen ChampOctober 13, 2012 at 6:14 PM
My name is Jenna and I came across your site. Your kids are precious miracles, special gifts, and beautiful princessess They are cute earthly angels. Anya is a smilen champ, inspirational hero, courageous fighter, and a brave warrior. The is funny and adoreble that Anya put tape on her mouth. I know sometimes my parents joke about putting tape on my mouth cause I keep chatting.
I was born with a rare life threatening disease, developmental delays, 14 medical conditions.
http://www.miraclechamp.webs.com
ReplyDelete
Replies

Add comment

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.