Anya Mae's Story: Day 30- Off ECMO at last!

Monday, July 16, 2012

Day 30- Off ECMO at last!

Anya was taken off ECMO this evening, from the start she was doing really well. Dr. Kays redressed her chest tube site and the bed needed to be changed afterward; all of her numbers stayed normal through this. Before she had surgery her oxygen numbers would often go down with this kind of activity, so this is very reassuring. Despite being given additional sedation she woke up afterward and was calm but active. Earlier today during another chest tube redressing she was very aggravated and pulled out her NG again. She has been a much more active, responsive baby the past week. I am not sure if it is due to less sedation, the thoracotomy, or being off ECMO but it is wonderful. Even if I don’t touch her when Adam and I come in she will wake up and look for us.

I got to see the back of Anya’s head for the first time today. The ECMO machine and cannulas got in the way of being anywhere other than her right side before. Her hair is dark like Arwen’s was; I wonder if it will stay dark or lighten like hers did? Soon she will get a bath, she hasn’t had a full bath yet!

God has blessed us!

3 comments:

TriciaJuly 16, 2012 at 7:28 PM
Wow! This brings me to tears!! I am SO happy to hear that precious baby is off ECMO! I am happy for all of you!
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ValJuly 16, 2012 at 8:43 PM
Just getting a chance to check on Anya...this is wonderful news!!!! She is doing great! God is real!

Val
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AnonymousJuly 17, 2012 at 6:50 AM
Yayy, just what I need. Thanks for all the help ECMO, now byeeee!!!!

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.