Anya Mae's Story: Random inspiration

Wednesday, April 11, 2012

Random inspiration

Thought I would post a few sites that have interesting information about CDH.

http://www.cdhsupport.org/ This is CHERUBS, a non for profit that gives support and information about CDH. I am on the message boards daily, it is a great group of parents of survivors, those expecting CDH babies, and those that have lost their babies.

http://www.realhopeforcdh.com/ This is the site that led me to consult Dr Kays. The stories about his kids are amazing. I emailed several of them before calling his office and they have been so helpful. Hard to believe that people would ever be willing to put their email out like that.

OK so this feels really juvenile, but this is a song by Christina Perri I heard shortly after Anya's diagnosis. So many of the thoughts expressed are what I have been feeling. I looked up the complete lyrics and was really irritated that it was in a Twilight movie and all of these tweens were posting that it was about the love of Edward and Bella.

A Thousand Years

Verse 1)
Heart beats fast
Colors and promises
How to be brave
How can I love when I'm afraid
To fall
But watching you stand alone
All of my doubt
Suddenly goes away somehow

(Pre-chorus)
One step closer

(Chorus)
I have died everyday
waiting for you
Darling, don't be afraid
I have loved you for a
Thousand years
I'll love you for a
Thousand more

(Verse 2)
Time stands still
Beauty in all she is
I will be brave
I will not let anything
Take away
What's standing in front of
Every breath,
Every hour has come to this

(Pre-chorus)
One step closer

(Chorus)

And all along I believed
I would find you
Time has brought
Your heart to me
I have loved you for a
Thousand years
I'll love you for a
Thousand more

(Pre-chorus x2)
One step closer

One step closer

(Chorus)

And all along I believed
I would find you
Time has brought
Your heart to me
I have loved you for a
Thousand years
I'll love you for a
Thousand more

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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.