Anya Mae's Story: Day 95

Wednesday, September 19, 2012

Day 95

So far everything is lined up to go tomorrow. There are a few small things left but not much. Her discharge orders and everything are written up. I already made an appointment to see our pediatrician on Monday; I am so excited for him to meet Anya!

She had another great day. They took out her central line, so we have an IV free child for the first time! I think I may cry when I get to take the leads off tomorrow!

Now I must stop typing and go pack up. We also need to clean our room before we leave tomorrow so I am going to get started on that as well. After that I am hoping I get a good night of sleep because it is the last full night of sleep I will have in a long time!!!

3 comments:

UnknownSeptember 19, 2012 at 9:27 PM
Ok, this is Anya's story but her story contains a big sister named Arwen and that's what my comment is about. When Adam and Kelly gave us the opportunity to care for Arwen while they were in Florida I had some concerns. One was I didn't want to be responsible for returning a spoiled brat to them and from the other side I wondered what we could possibly do to comfort a child who's parents have been absent for a very long time.

I'm happy to report that Arwen has come thru this with flying colors. For her it's been a big adventure. I guess we'll have to see what Adam and Kelly think of thier daughter but I don't think they will be disappointed.

I'm very proud of Arwen. She has held up very well and despite not being a phone talking person or a Skype person she really has missed her parents. Other than when she's been grouchy she's pretty much a happy girl. She loves her little sister very much and her face has lit up when ever we've been able to share one of Anya's improvements with her. Anya has an amazing big sister and I very much look forward to watching the two of them growing together in the coming months.

Grandpa Eaton
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Jennifer TenneySeptember 20, 2012 at 3:39 AM
I am thinking of you today!!!! Picturing you walking out with your baby girl!!! You all should be so proud!!!! Many prayers for a smooth day today and a healthy baby at home!
Hugs,
Jennifer
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TriciaSeptember 20, 2012 at 2:31 PM
I'm thinking of you also! I hope you are well on the way home by now! Have a safe trip home. :)
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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.