Anya Mae's Story: Day 81

Wednesday, September 5, 2012

Day 81

We didn’t work on feeding during the OT appointment today; I think they want her oxygen flow down more before they start. The OT did do a general assessment; she was happy that Anya is interested in the world around her. Because she has been on her back for nearly three months, her back muscles are strong and her front muscles are weaker. In order to progress through milestones (grabbing at things, controlling her head) Anya needs to learn to use these muscles. She showed me ways I could encourage Anya to move her arms and encourage her to grasp at things. We will get to work with OT once a day as long as Anya is not tired or irritated from a treatment.

Again, Anya’s oxygen and pain meds were decreased. Her feeds have been changed from continuous to on for two hours, off for one hour, to get her closer to giving her feeds as a bolus. Bolus simply put means over a short period of time. I held Anya for several hours today and it was nice to spend some quiet time with her. Adam comes back tomorrow; Arwen and I miss him!

No comments:

Post a Comment

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.