It has officially been two weeks since Annabelle was placed on the heart transplant list. On one hand, it seems like it’s been a blur. But when I think about potentially having to wait many, many, many more weeks… it feels like forever ago.
Annabelle had her MRI today. She was intubated not long before going down, and extubated a few hours after coming back.
We talked with the cardiologist and surgeon and looked at the MRI pictures not long after we got back.
I had prayed and begged God for clear answers with the MRI. That there would be no wishy/washy maybe, that it would be clear direction, Yes or No.
(If you don’t know what I’m talking about, read this post here where we got some surprising news from a 2nd opinion.)
Here are the results:
In order for the two-ventricle repair to have any chance in working, the doctors in Boston said her left ventricle needed to have a MINIMUM volume of 20. However, they’d really prefer it to be 25 or bigger.
The doctors here said her ventricle was only measuring a size 12 on the echo (ultrasound of her heart, basically) and even though the MRI might show it bigger, they doubted it would be THAT much bigger.
Boston said they would need an MRI done that would show us a much more exact measurement of her ventricle. They have another test too, but that can’t be done here, and Annabelle would need to go to Boston for the final decision to be made.
Scott and I decided to get the MRI done, so we could at least rule out the option of a two-ventricle repair and feel good about our heart-transplant decision.
Her left ventricle is a 32.
Almost 3 times what they thought, and bigger than Boston’s preferred number. Still VERY small though.
The other thing it showed us was “how” unbalanced her common AV valve is, the one that needs to be fixed. It is a 70/30, meaning 70% of the valve is aimed at the right ventricle and 30% at the left. It should, I think, be 50/50.
From the very little I could find to read about it, under 20% is a no-question single-ventricle repair. A 30% is in this gray area section. But this is coming from Google, not doctors, and my interpretation of some pretty detailed medical study stuff, so I could be way off base.
Our doctors here still tell us that transplant is the route we should go. The function of her left ventricle is very weak, and her recovery course and survival odds are much worse compared to the transplant route.
But if it worked, in the long run, she wouldn’t have to worry about heart rejection and life-long serious medications etc. She would have a whole heart… that is her very own, original one.
But if it didn’t work… well, most likely we would lose our Annabelle. There would be the option to then go back on the heart transplant list, but she would probably be much sicker and have a much worse recovery period, and much more risk of not getting a heart in time.
Right now, we have asked for the MRI results to be given to Boston, and to get an opinion from them on if they still think she could be a good candidate for their biventricle repair.
Scott and I are praying and thinking and researching in the mean time.
Part of me feels like Gideon. He asked God for a sign, and God gave it to him. (I asked God for her volume numbers to be clearly more or less than what they were asking for to point is in the right direction… they were much more) But then he still wasn’t sure, so asked God for another one just to make sure he was doing this right.
Well, I’m asking God for another confirmation. Much depends on our decision, and our hearts desire really truly is to be obedient and do what God asks of us. I really don’t want my own brain and logic to override His will. And I hear ALL the doctor’s here warning us not to do it, and I DO listen and put a lot of stock into what they say. They’ve cared for Annabelle very well for the last six months, and know her better than anyone.
Except God of course. And in the end, God trumps doctors.
That said, I firmly believe God gives us doctors and gives them divine wisdom as well.
So PLEASE PLEASE pray with us that the doctors in Boston will give us a clear opinion, that God will impress upon their hearts the best course for us, and that Scott and I can have a peace with the decision. Part of me hopes they come back and say, “She’s probably not a good candidate…” because then it is completely out of our hands and we can continue our course. But if they come back and say, “Yep, bring her here, let’s do it…” Well…I would be SO SO excited to have her heart fixed. But honestly, it’s the more scary route. It’s a big, not-very-researched unknown.
And this is my baby’s life we’re talking about.
My stomach is in knots just thinking about it.
I have no clue when we will hear back from Boston. It took us over a week to get our first 2nd opinion, so it could very well take that long again. Or we could hear back tomorrow.
In the mean time, we are still on the heart transplant list. If a heart came available, we would still take that as direction from God that we are to go that route, and Annabelle would get a special heart.
Your prayers for us during these time as we face really difficult decisions are so very appreciated. I can’t tell you how much it helps knowing that so many others are praying as well. And THANK YOU to all your heart parents who have reached out, whether those who have faced transplant or those who have gone to other hospitals for 2nd opinions… or those who have seen their loved ones go into the arms of Jesus, hearing your stories and interacting with you is SO SO helpful to us! Our heart babies are all SO precious in God’s eyes. We’ve been giving such a special, unique gift and responsibility in taking care of them for as long as God gifts them to us.
Love to you all, and I’ll leave you with some fun pictures from today.
Before her MRI. She had a GREAT morning. Was happy and doing well, and Mommy and her snuggled for a few minutes before it was time.
Drugged up after the MRI. What’s my name? Anna something? And what is this ridiculous tube doing down my throat???
Ahh, sweet relief! The tube is out, I’m in my bouncy seat, and dressed in a cute outfit! Life is good!
While we waited for them to extubate Annabelle this afternoon, Scott and I came downstairs and listened to Matthew West sing a few songs, and had fun watching him write a song with the help of the kids. Fun stuff! Something about eating at taco bell, wet chulupas, and Thomas the Train. The kids loved it, and the picture is of everyone singing the final version of the song while the kids got to play instruments. It was great seeing all those kiddos smiling!
Finally… Annabelle playing with her dolly!! She had her by the braid at one time and was swinging her around. I was SO SO SO proud of her. It looks like she’s sleeping here… but she’s not. Still a little groggy, but she was focusing on dolly!