Wednesday, August 12, 2009

It has been such a blessing to see Mya during the past 24 hours, her level of alertness is so refreshing. She is such a beautiful girl! I don't know if I truly absorbed the reality of our situation until last night, but after Rob & I left the hospital (we've been going home the past 2 nights), everything hit us. It's taken a bit of time to soak in that Mya has to have another heart surgery or she could go into cardiac arrest at any time as a result physical strain (ie fevers, getting sick, putting in another breathing tube for a future surgery etc). While the idea of another surgery is stressful, it's not the greatest source of concern. The bigger issue we're facing is that our surgeon team isn't even clear on how to fix it. It's a very unusual problem and because she is so small, there are a lot of physical limitations. Mya's current physical state (which is really good) would have allowed her to come off the breathing tube yesterday, but she's being left on it until they derive a few surgery options. They feel the risk of taking her off the breathing tube is high. She doesn't need the ventilator right now, and taking it out isn't the issue. It's putting it back in for another surgery that is the problem. They have to sedate her for that procedure which could cause her to have dangerously low blood pressure, which could easily cause another arrest. Now we're waiting on several top people to do a lot of research, reviewing of her tests and echo cardiograms and coming up with some plausible fixes for her little artery. Our cardiologist is consulting other colleagues across the country to see if any other teams have worked with this type of situation. If there is ever a time that we've had to rely on faith 100%, this is it. Not only for the choice on when to do surgery, but how they're going to proceed with it. We are praying for clear discernment for Dr. Cohen and the surgeon team on how & when to proceed with a fix. He will be reviewing our case later today.

9 comments:

jaime.ledger said...

Julie! She is beautiful. Especially in this picture. It is so nice to see her with her eyes open and looking right at the camera!!!! She looks like an angel laying there. I have faith they will come up with a fix. They just have to. Keep your faith. It will be good to have her healthy!

Jaime

AngMomof3 said...

I'm sorry you had a rough time after leaving the hospital last night. I'm so thankful that you and Rob have eachother. You're a strong couple.

Loves to Mya, and prayers for discernment in the medical community!

Carissalayla said...

"Never will I leave you, never will I forsake you" Hebrews 13.5

Michelle said...

It's so good to see her eyes open!! She is still our little Mya Bug and she is going to get through this and be stronger.

Just think how easy parenting her through the teenage years will be in comparision to this!

Hilty Sprouts! said...

What a sweet little pumpkin!

It was so good to chat with you this morning. Thanks for stopping by. I hope you don't mind but I put a link to you guys from my blog so people could pray for Mya.

Jennifer

Everyday Becky said...

I just stopped by from the Hilty-Jones' blog. I'm so sorry you are going through all of this. I wanted to let you know that your beautiful Mya is in my prayers. And you, too!

Chris and Britt said...

Nothing more precious than seeing those baby blues open and looking right at you! She is beautiful. We will be praying for the surgical staff and for those who may have answers across the U.S.

Mark & Brittany Sawyer said...

Oh look at those eyes, it is awesome to see them open again. =)

I cant wait to play with you all again. I know the Dr.'s will figure this out and fix the problem.... She is a fighter and she has people from all around the world praying for her.... all the staff at SCS and our church.

I love you guys, and are constantly praying for you.

Love,
Aunt Brittany

Lori said...

Julie, reading your blog is an emotional rollercoaster. I can't even begin to imagine what you and Rob are living through. Your faith is shinning through bright and strong, and is an example for all of us.

I love seeing Mya's eyes open again.

Our family continues to pray for yours each day.