Anya Mae's Story: Day 15

Sunday, July 1, 2012

Day 15

Nothing improved today, but nothing got worse. We have been treading water now for a few days now, which is good in a way, but it is frustrating and scary to me. Anya is needing higher ECMO settings now, and has not really bounced back from her last circuit change; she will probably need another circuit change soon, so we can expect another backslide from there. Which leaves me wondering where that will leave us? We talked to one of the doctors tonight, who did reassure us right now she is fine, but they are not sure what is going on. Her chest tube is not putting out as much as they would like, and they do not want to put in another or change it out for the risk of bleeding. She has a lot of swelling so they have put her on more diuretic. Both or neither of those things could be causing her problems. All we can do is pray and hope that tomorrow sees some positive changes.

Adam is optimistic but I am less so. God help me I am scared right now, despite all reassurance. No one ever says ‘everything is fine’ it is ‘everything is ok RIGHT NOW’. It is all empty promises to me until someone can speak with more confidence about what is going on. I have not been able to see her awake and active like she was four days ago, every time I have been up to see her she has been asleep. I did get to change her diaper today for the first time.

1 comment:

AnonymousJuly 2, 2012 at 12:39 PM
I do hope she has a better day. praying for your little girl.

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.