Anya Mae's Story: Day 45- Return of the Big Sister!

Tuesday, July 31, 2012

Day 45- Return of the Big Sister!

She walks, she talks, she is HUGE! She is….Arwen the big sister!!

It has been about a month since Arwen has been down and I forgot what it is like to have a child that isn’t hooked up to machines. She is hilarious, and she has come up with sayings I don’t remember like ‘don’t you know, Mommy’ and ‘show me those Anime eyes!’ As I write this she is having two of her stuffed animals race; they are stuffed in her slippers and she is sliding them along the floor. This is going to be a fun week.

Arwen and Anya really got to know each other a little more today. Anya was wide awake when we went in; her face lit up when she saw Arwen. I really think she remembered Arwen’s voice. Arwen was able to hold her hand and touch her a lot more than the last visit as well. Here we are singing ABC to Anya:

Tomorrow Anya is going to have a study done of her stomach, so hopefully we will know tomorrow what is going on in her belly and it will not be too severe! Anya’s blood gases looked good today since she is back on the vent; there is no specific plan to wean right now. Tomorrow will show us a lot!

2 comments:

Jennifer TenneyAugust 1, 2012 at 5:20 AM
Awe! Arwen is so cute!!!!!!
Hugs,
Jennifer
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Mary August 1, 2012 at 2:36 PM
I adore how Baby Anya completely changed when her big Sissy began to sing! Her reaps increased and her legs kicked - brought tears to my eyes! Enjoy your week as a family of 4 in the same city :-)
Sending many prayers your way.
Blessings to all,
Mary :-)
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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.