Anya Mae's Story: Day 52- Caught!

Tuesday, August 7, 2012

Day 52- Caught!

A few days after I found out about Anya’s diagnosis, I wrote a letter to her. I described how I felt we were falling together, unsure if we would catch each other. Today I caught her:

I am happy I got to hold her, but it was a nerve-racking experience. It took some convincing for her to get comfortable and her sats went down. Her arms were flailing about and I was afraid she would pull out her intubation tube. Eventually she settled down and we had some nice quiet time. I look forward to holding her when she is extubated and we both can relax!

She is right on track to be extubated on Thursday. They started her on feeds today and she is handling them pretty well. She throws up occasionally but there are a lot of reasons that could be happening: the intubation tube gags her, she is upset from being repositioned, or the regular CDH issue of reflux.

Should be an exciting week!

3 comments:

UnknownAugust 7, 2012 at 8:13 PM
Ah! So happy to see you holding your sweet girl. What a great feeling :) Will be praying for a successful extubation on Thursday!
Leslie (www.babybeehelms.blogspot.com)
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TriciaAugust 7, 2012 at 9:57 PM
It is great to see you holding her! Beautiful pics! :)
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Jennifer TenneyAugust 8, 2012 at 5:18 AM
Congratulations!!!! Go Anya!!!!! Many prayers for a good day today!!!
Hugs,
Jennifer
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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.