Anya Mae's Story: Day 29 Still on ECMO

Sunday, July 15, 2012

Day 29 Still on ECMO

Anya’s blood gases were not exactly what they needed to be so they delayed taking her off ECMO. It is a little disappointing but they hope to take her off tomorrow afternoon. Right after the decision was made the gases started looking better, so hopefully tomorrow will be the big day. I called this evening to check on her; she is getting stronger because she pulled out her NG tube...twice. I think she is ready to be better too!
I swear; this kid is going to have more milestones than we know what to do with. Birthday, day she got of ECMO, day she got off the vent, day she went home: I picture her being 13 rolling her eyes at me. J

3 comments:

CorinneJuly 15, 2012 at 10:03 PM
Isn't it an extra super sweet image to picture our CDH kiddos being 13 and rolling their eyes at us. I know where you are is hard so pictures like that one can help us remember what we're working towards.

Sending strength to you.
Corinne
Mama to Samuel, lcdh, Feb1/11
www.samuelslight.blogspot.com
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ChrissyJuly 16, 2012 at 11:43 AM
She will let you know when she is ready! And she is the boss. :)

Mama to Clara Mae, 3/23/11
LCDH, ECMO survivor
www.thehardylife.blogspot.com
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AnonymousJuly 16, 2012 at 3:28 PM
Here is to her coming off ECMO very soon.

Anu
Expecting my LCDH baby boy Aug 24th
http://ourcdhherolittlea.wordpress.com/
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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.