Anya Mae's Story: Day 59- Rollercoaster of a day

Tuesday, August 14, 2012

Day 59- Rollercoaster of a day

Afternoon:

I got nothin’. Seriously I have nothing left. I haven’t felt this bad since we found out about her diagnosis. I would like to go up and see her but that would require talking to people and I really don’t want to do that. I have no energy to be the nice mommy I am to the staff. So anyone who wonders how I do it? This is how: doing really, really well for a long time and then mentally imploding.

She was so cute when we went up to her last night- she was holding her little frog under a fuzzy blanket; she was wide awake with this look on her face that said ‘Mommy, something happened!’ We didn’t find out that she was doing poorly until right before she was intubated. The minute we found out something was wrong we went up but they were intubating her just then. I am heartbroken that I wasn’t there for the few hours when she wasn’t doing well. It would not have changed the outcome but I am down here for her, there is nothing in my life but her now, and I wasn’t there. The whole craziness of what this child has to go through and we with her just overwhelms me.

This is probably just an ordinary CDH setback. We will move on. Right now, I just want my baby girl to get better. Usually I am comforted by facts: things like this happen, we have to let her go at her own pace, all to be expected. None of this helps.

Evening:

Anya was looking good tonight, she was comfortable and very awake. This evening I was able to talk to Dr. Kays and the fellows, there is a new plan. She is going to have her reflux surgery on Friday, a Nissen fundoplication. Along with that she will get a feeding tube to her stomach. This is a good thing, because we can start feeding her through it before she is off the vent. Usually you have to wait to feed a baby until they are on nasal cannula oxygen, and then have to work through reflux issues to get them to take oral feeds, only then do they get the surgery. By having the surgery now we skip a lot of the process, we can feed her through the tube, she can get off TPN (IV nutrition), get her stomach working while her lungs are getting better. As she learns to take a bottle we can slow down on tube feeds and eventually she will not need it anymore, it will be taken out

Dr. Kays is also thinking that reflux may be causing some of her issues. In addition, TPN is not ideal nutrition, and getting on regular formula could help her get stronger. When he does the surgery he is going to look at her bowel and see if there is anything that may be causing her stomach emptying issues. He is still very optimistic about her future. Hopefully after Friday there will be a lot of improvement and we can get Anya home.

5 comments:

UnknownAugust 14, 2012 at 7:12 PM
So sorry to hear this, Kelly :( Even though you're probably right that it's a typical CDH thing, it's so frustrating to come *so* far and then have a setback like that. Praying that Anya just needed a little break from CPAP and that she can get rid of the vent for good very soon. Also praying for you, because CDH sucks. She does look super cute holding her frog :)
Leslie
(www.babybeehelms.blogspot.com)
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mickeyAugust 14, 2012 at 8:04 PM
this is aunt mickey sorry to hear that but like i said she is a fighter so we will pray for her to come home soon
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TriciaAugust 14, 2012 at 8:42 PM
I'm so sorry to hear this. Thinking of you and praying.
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KellyAugust 14, 2012 at 9:00 PM
Thanks everyone!
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Jennifer TenneyAugust 15, 2012 at 5:51 AM
Big Hugs!!!! I was thinking about you all - all day yesterday! Dakota very nearly got reintubated twice while she was on C-PAP. Two mornings I came in and her oxygen had been turned up to 100% and the PEEPS up to 7 and they had said that she was struggling and desatting. Both times she settled down and they were able to turn back down the oxygen throughout the day, but it was very close. Both those days they told me not to be disappointed if she went back on the vent (yeah right!!!!!) and that it was a normal thing for it to take a couple of few times sometimes. But I know how I felt, so I can imagine how you felt. Don't care what's normal, just want my baby to get better and better. It's okay to break down. I did.
I think that is a great idea to do the nissen surgery this week since Anya would have to be intubated for that anyways and now when she gets off next time, it will hopefully be the last time!!! She can do this!!!!!!! I know it!!!
Hugs and prayers for a great day today!
Jennifer
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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.