Anya Mae's Story: Induction scheduled!

Monday, June 11, 2012

Induction scheduled!

We made it down to Gainesville safely without any surprises! I had my appointment today and everything was positive: Anya’s growth is still good (6lbs 10 oz?!?) and they did a non stress test to check her heart rate along with her movement, and it was appropriate. Apparently CDH babies can slow down later in pregnancy and it can be a sign of distress. I will add it to the growing list of ‘Stuff That Was Not an Issue’, along with the extra fluid, hydrops, heart malformations, and probable genetic abnormalities.

As far as me I have been feeling pretty good, my blood pressure was normal, and at the risk of TMI my cervix is softening and I am dilated to 2. They are planning on admitting me Friday night and starting the induction, I will probably deliver on Saturday. There was a lot of back and forth between high risk OB, the OB resident, and Dr. Kays as to when to induce, they needed to coordinate when Anya and I would be ready, along with Dr. Kays surgery schedule to make sure he was available at key moments. That is one of the reasons Dr. Kays is so amazing- he is not a neonatologist, he is a surgeon; most surgeons just do the hernia repair. Dr. Kays on the other hand is there at the birth, and runs the show that most neonatologists do: the vent settings, ECMO, etc.

Tonight we are meeting a family with a child who was born with CDH. Her story is amazing because she was actually born premature, at a different hospital than Shands, and they flew her to Shands for treatment with Dr. Kays and she is doing wonderfully now, she is three years old.

Last night was very emotional for me; my only goal was to get down here safely, now that I am here a lot of stuff is surfacing that I was burying before. As Adam has said, “it is time to rip off the band-aid.” Pastor Schade from Immanuel is coming down to be here for the birth, and I am so grateful!! I ask everyone for more prayers! I ask for Anya to continue to exceed expectations and be born fighting! For strength of mind and body, that my recovery will be quick so I can be at Anya’s bedside as soon as possible (and the wisdom on when to rest). For my husband Adam that he maintains his strength of spirit. For all the healthcare team including Dr. Kays; that they are at their best and give her the best chance. For safe travel for those who are visiting in the coming weeks, my sister Kasey, Pastor Schade, Ruth and Dan my in-laws, and of course my little girl Arwen.

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your request to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Philippians 4:6-7

1 comment:

Stephanie BearceJune 12, 2012 at 6:58 PM
We are praying!
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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.