Anya Mae's Story: A story you will not believe is true

Friday, September 14, 2012

A story you will not believe is true

In nursing school, during one of my pediatric clinicals I got the opportunity to take care of a little baby girl I will call K. K had gone through a lot in her young life. She had been born prematurely and had spent many months in the NICU. She had a trach. She had a G-button. She couldn’t speak yet. But she was beautiful. She had bright eyes and a happy disposition. She did a wiggly little dance when she was happy. To look at her chart would make anyone cry. Seeing her in person you couldn’t believe her perseverance.

The day I had her she was sick. She was having a lot of breathing issues and her oxygen saturations were dropping. I gave her nebulizer treatments under the supervision of the staff nurses, but she still struggled. I did not break for lunch, even though it was not a requirement to stay. I was too invested in her well-being to leave. I loved that clinical and for a short time thought I was put on earth to care for sick babies.

Hmmm.

I never decided to do pediatrics for a wide range of reasons. Every once and a while I would think of this little girl and wonder how she was doing. Years after taking care of her, I heard her mentioned as part of an ad in a radio commercial for the facility she was in. She was doing well, and the thought of that kept me happy for days. I seriously considered naming one of my children for her.

After doing research on life with a CDH survivor I realized I would have a baby like K. Maybe not as sick, but a lot of the realities would be the same. I would be taking care of a sick little girl, but I had done it before, even if only for a few hours. I knew what it would look like. I knew she would have a personality and a spark if she could only survive. I knew we could do it.

God gives us what we need, sometimes way before we know we need it. True story.

1 comment:

Jennifer TenneySeptember 15, 2012 at 4:11 AM
You are a beautiful writer and that is a beautiful story! I am glad you guys figured out some things to help Anya eat more comfortably. It sounds like she is doing great! Many prayers for a smooth and easy next few days!!!!!!!!
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.