Anya Mae's Story: Day 80

Tuesday, September 4, 2012

Day 80

Anya got to wear her first dress today! Last night she was very opinionated; she fussed whenever her music projector went off and would not calm down when they took her out of her bouncy seat. They had to leave her in.

More importantly, as I had hoped there was discussion on what the next steps are. Her oxygen has already been weaned down a bit, as well as the pain medicine. Occupational therapy is being consulted so hopefully tomorrow Anya will get to try eating by mouth for the first time. Since she is able to get all her calories through the tube she does not have to be very good at eating to be discharged. So the oxygen is the only real barrier for us getting home.

Which means we may be home in about two weeks.*

I was hoping this would be the case but it still surprised me. I have found myself composing a Goodbye Gainesville parody of Goodnight Moon. ‘In the NICU there was an alarm, and a nurse, saying she would be there soon….Goodbye Gainesville…Goodbye RMDH room…Goodbye having to ask for permission to see my baby in her room… I don’t think that rhyming is my strong suit.

Obviously I am excited but it is hard to believe that it is real. The past couple of months have gone by fast, even as my aggravation built. I would compare it to labor: while you are in the midst of it you don’t see how you are going to make it through, then when it is over and someone asks you how it was, you say ‘eh, not that bad.’ It doesn’t matter because you have a child to take care of.

I am excited about the OT consult for tomorrow; I have wanted to see what Anya can do. I know it will not be pretty, but we have to start somewhere. God is good. The day I found out about the CDH I posted on Facebook: ‘Dear God HELP!’ and he did.

*This of course is barring any unforseen crazyness!

2 comments:

UnknownSeptember 4, 2012 at 8:17 PM
I like your Goodnight Moon parody! So many things to bid a fond (or not) farewell to. I hope Anya's homecoming is very soon. Prayers for the oral feeding.
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Jennifer TenneySeptember 5, 2012 at 6:30 AM
Awesome news! She looks adorable in her dress!!!! Is Elaine the OT still? She is awesome!!! For some reason, they didn't let me see her for the first week of Dakota's feeding because Dakota was doing ok at it, then finally I asked to see her after I kept hearing about her and she taught me so many tricks!! I was mad I had missed out on a week! Also, every nurse has different tricks of the trade - pick their brains and try everything!!!! Try every type of nipple to you find one that works (try the NUK nipple if the traditional does not work). Ask them to teach you how to position Anya to sleep feed her (she won't have a lot of energy to eat in the beginning so we have to learn to feed them when they are in a light sleep). Are you guys moving to NICU II soon? Many prayers for continued progress and good days!!!!!!!! May the light at the end of the tunnel get brighter and brighter!!!
Hugs,
Jennifer
Mom to Dakota 12-25-2008
RCDH survivor
jennifertrafton@hotmail.com
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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.