Anya Mae's Story: Day 28- One month old!

Saturday, July 14, 2012

Day 28- One month old!

Today they were able to wean her ECMO settings down further, and they brought her vent settings up to get her ready to get off ECMO. Dr. Kays is planning on taking her off tomorrow! She was awake this afternoon and she really enjoyed sucking on our fingers, we haven’t gotten her to take a pacifier yet. Tomorrow should be a very exciting day. She is looking a lot better this time than the last time they attempted to take her off. Praying everything tommorrow goes well.

3 comments:

UnknownJuly 14, 2012 at 7:53 PM
What a doll baby! She has so much personality, even with all the ECMO/ventilator/tube/wire business going on. It doesn't seem to bother her a bit! Will be praying with you for success in getting off ECMO tomorrow. She can do this!
Leslie (www.babybeehelms.blogspot.com)
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TriciaJuly 14, 2012 at 9:38 PM
She is SO adorable and looks so strong! She looks like she is ready to get up and go! Praying for you tomorrow, and I can't wait to read the update!
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AnonymousJuly 15, 2012 at 8:28 AM
She is soo cute. All the best to be off ECMO.

Anu
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.