Anya Mae's Story: Day 85

Sunday, September 9, 2012

Day 85

Today was a whirlwind of each one of us adults feeling slightly ill in turn and trying to manage visiting Anya while keeping Arwen entertained. I am feeling super stressed tonight because I have to take Arwen and Kasey to the airport first thing tomorrow. Even though I know it will only be a few weeks, I am sad for Arwen to leave. At the same time after she is gone I can focus fully on learning everything that needs to be learned without guilt that I am ignoring Arwen. Parenting wouldn’t be parenting without guilt right? J

Mommy's girl!

Come on Bear, it is time to watch the light show!

I am one snuggly baby!

There were no big changes in Anya’s care today. Weekends are typically pretty calm unless the baby’s condition changes. I expect tomorrow will have more to report on discharge stuff. Anya has been taking her bink more consistently and has been able to keep it in her mouth better. At one point today she was acting really hungry, even though she was getting her formula through her g-button at the time. I am excited to work with OT tomorrow and see if she can go a bit further with the oral feeds. Praying for patience!

1 comment:

Mary AbigailSeptember 11, 2012 at 4:49 AM
She looks so great!!
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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.