Anya Mae's Story: Day 32- Cannulas out

Wednesday, July 18, 2012

Day 32- Cannulas out

Today was a good day but an odd one. Shortly after I got to the hospital a baby close to Anya was having trouble; I was asked to wait outside along with all the other visiting families. Surgery ended up being done so I didn’t get to go back in until later this evening. I was concerned for the family and the baby, but happy; many other times has the NICU been emptied of visitors due to Anya’s severity. This was the first time I felt completely comfortable leaving the area. I left the stuffy, uncomfortable waiting room and walked outside, read, got some coffee, and generally enjoyed being somewhere other than the Ronald McDonald house or the NICU. By the time we were allowed back Dr. Kays was taking out Anya’s cannulas, she did very well. She was sleepy due to the sedation, so I didn’t get to visit with her much today.

I don’t want other babies to be sick, but it is a blessing that Anya is no longer the sickest baby in the NICU!

3 comments:

Jennifer TenneyJuly 18, 2012 at 8:00 PM
Oy! I remember a day like that. The baby next to us was crashing. Dakota was already off the ventilator and on C-PAP and doing fairly well. The baby did not have CDH - I actually don't know what she had, but it didn't matter ... I watched the despair on her parents' faces and prayed all day. I watched that baby's saturations more than Dakota's for the first time. Finally, they kicked us out. Unfortunately, I don't think the baby made it. it was a definite wake up call as to how lucky we were and how blessed and how fragile life is. Many prayers for that baby, that they have a better day tommorrow. And prayers for another great day for Anya - good blood gases and weaning!!!!!
Hugs,
Jennifer
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Laura // ElizabethJuly 19, 2012 at 3:23 AM
So good to hear Kelly!!! I've been Facebook stalking you to see how Anya's been while I've been off the last couple days :) see you today!
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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.