Anya Mae's Story: Day 67- A whole new view

Wednesday, August 22, 2012

Day 67- A whole new view

Every time Anya is awake, I try to think of what would be good to do with her. What would she be doing at home, as a two month old? Anya’s experiences have been extremely limited, for a while this made sense when she was very ill. Right now however she really isn’t all that sick, and she has a lot of energy. Sometimes the nurses seem surprised that she is awake, sometimes even concerned a bit. After asking about this I learned it is rare to have a happy awake baby, usually when they are awake they are upset. It seems a waste to me to not use her energy to give her a chance at some normal experiences. So today, with Dr. Kays approval, we propped her up facing the nurses desk. Up to this point she was facing the other way, so if she was propped up she would see the wall. In a sick baby this makes sense, to decrease stimulation that would be irritating. Anya’s situation, at least in my opinion, is not the same.

For whatever reason she was more attentive when we moved her around. Before she focused only on a few things, our faces, the warmer above her head, the intubation tubes. When we sat her up she was looking at other things and toys that I moved across her field of vision. She had never tracked them before but she did today. Here is a video of the crazy setup:

After a while she became tired and conked out, so cute!

Anya was tolerating her feeds well so the rate was increased today. They can’t give her the total amount of formula she needs at once because she wasn’t fed for so long; she needs to get used to it gradually. Her tummy was blown up still but not as tight, her girth was a little smaller. The vent was weaned as well. Praying this all continues!

2 comments:

AnonymousAugust 23, 2012 at 4:15 PM
She is adorable. Yayy for tracking, hopefully soon she can have full feeds.
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ParrishAugust 23, 2012 at 4:18 PM
I'm following closely her story. Seeing that NICU and hearing those monitor beeps takes me back to where we spent so much time. I don't miss it, but there's a sort of Stockholm syndrome. A different world. But I see the pictures and video and I'm confident in her. It's so hard, but someday you'll say, "Wait, how did we come so far?" Right now my son Flynn is in his chair with some chips and watching Eebee Baby. No g-tube anymore, going to day-camp twice a week. Two years old soon. It will happen! and I'm excited for you, because it will come.
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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.