Anya Mae's Story: Day 33- Becoming a real girl

Thursday, July 19, 2012

Day 33- Becoming a real girl

The single most difficult issue about having a newborn with severe CDH is the uncertainty. Ever since I found out about Anya’s diagnosis I have been planning for the worst but hoping for the best. It has kept me sane when everything is crazy, joking when I should be scared to death, patient when I at the end of my rope. It has also kept me a bit emotionally distant. Anya hasn’t been completely mine; I have to ask if it is a good time to visit, while she was on ECMO there was always an ECMO specialist in the room, and all of the miscellaneous medical devices make it a challenge to touch her like I would a ‘normal’ baby.

All of that changed today; I had gotten impatient waiting to be let back after Anya got a picc line (long term IV). What originally was an hour wait turned into two; maybe my aggravation showed because when I was let back Anya was still draped for the picc line, her nurse had me help get her settled. Her catheter has been taken out so she has wet diapers now! We went to change her linens, and I picked her up for the first time. It was not the tear jerking moment I thought it would be; Anya is still hooked up to more tubes and wires than a Borg, and this made it awkward. I got to snuggle her a little bit but all her IV lines pulled, her chest tubes (usually very sore) were right up against my body, and I was worried that I would hurt her neck after it was in one position so long.

For a month, Anya’s whole life, all we really could do is stare at her and pray, hold her hand, catch her in a wakeful moment and hope she would react. Her sedatives are being weaned now so she is a lot more interactive. She is becoming more real, more ours. One step closer.

Here is a video of Adam talking silly. He is really good at it and Anya seems to appreciate it. Sorry it is wonky!

4 comments:

UnknownJuly 19, 2012 at 8:03 PM
So glad you got to hold your sweet baby today! For real snuggles are coming your way soon :)
I totally know what you mean about not feeling like she was your baby up to this point. I think that's what keeps us from totally losing it.
Bonnie sends her love to Anya :)
Leslie (www.babybeehelms.blogspot.com)
ReplyDelete
Replies
TriciaJuly 19, 2012 at 8:20 PM
Aw, the picture of you holding her made me cry! I will never be able to imagine what it has been like for you not to be able to hold her, but I am so happy you finally got to!
ReplyDelete
Replies
TriciaJuly 19, 2012 at 8:25 PM
OH, gosh, I have to add another comment. The video is adorable!
ReplyDelete
Replies
AnonymousJuly 20, 2012 at 7:10 AM
Awww isn't she adorable. Soon everything will be close to normal.
Anu
http://ourcdhherolittlea.wordpress.com/
ReplyDelete
Replies

Add 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.