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!
I will be praying, for wisdom, peace and discernment. The picture of Annabelle playing with her doll is so cute!
Ah, Krista, thank you for sharing today's news. I will continue to pray for Annabelle and for you all that the decision becomes clear for you.
You are such an inspiration to me.
Praying for you and that God will give you peace about the decision. I wish I could give you guys a big hug through the computer.
I have been reading your blog through Matt Hammit's blog. My daughter is a heart baby and has had two open heart surgeries at U of M. I want you to know that I have been praying for you and sweet Annabelle. I do not know you but I feel a connection with you because of what we have been through with our daughter. Thank you for the encouragement that you give me through your blogs. Erin Weber
Krista, my continued prayers are with you and Scott as you endeavor to make the very best decision for your little princess.
Think about you all everyday. Will pray for clear answers!
Krista, what a decision to make. You're right, how do you know what to pick. God will tell you. Waiting for the answer is tricky, but it will come. Usually just in the nick of time. That's how God has been with me lately. I give it up and the answer comes just in time. I love you and I'm so proud of your strength. I love seeing your sweet Annabelle pictures. I'll be praying for the answer to be clear. Love you.
Give Krista, and her family and the doctors wisdom and peace over the decision about weather to do the surgery or not. I pray for peace for Krista about the decision especailly. you have this family in the palm of your hand and you have a plan for them. you know what is going to happen and when it is going to happen. you are in control and everything you do is for a reason. I pray that Annabelle would have a great, fever-free weekend and that she would get a heart soon if the other option for Boston doesn't work out.
I know these are tough decisions you and Scott are making. It seems like you have the right perspective. We will continue to pray and ask God to give you peace and make it very, clear as to what you should do.
Praying, praying, praying!
Praying for you and your sweet little girl!!
Oh my goodness, it is just constant twist and turns! Praying for you all on clarity for this decision. Annabelle is absolutely adorable and your strength is unbelieveable.
Praying, praying, praying…and thanking God for the answers to prayer so far!!
Praying for wisdom, peace, and rest for all of you.
Blessings and hugs,
I'm praying that God's answer to your prayers come through loud and clear! Sweet, sweet pictures:)
Lord, please surround Krista and her husband with your loving arms and wisdom so that they will get the clarity they need to make some really hard decisions. Be with them as they wait the result of those decisions. And Lord, please be with these doctors as they care and provide the best medical attention they can provide to sweet Annabelle. We know that You're loving and holding Annabelle in your arms every minute of the day. We pray in Jesus's name, Amen!
Krista, I love those beautiful pictures of your sweet girl. Thanks for sharing them!
Wow… oh my… I've just discovered your blog from Rachelle Gardner's and…. oh my…
I am praying. Will continue praying – for Annabelle and for your strength and guidance. We've had (minor, nowhere-near-lifethreatening) health issues with our boy since he was a baby and the stress was immense. I literally can't imagine what this would do to your heart!!!
Big, big hugs and prayers.
Hi Krista –
I'm praying the Lord will give you wisdom and clear direction.
I was tearing up while reading this post Krista. I just can't immagine having to make this decision. God has really laid Annabelle on my heart lately. I'm praying that God gives you clear direction in this decision. This whole thing totally stinks and I wish I could take it all away and make it better. I guess I should say that I'm asking God to do that for me 🙂
Krista, I am praying for you guys. I think about sweet little Annabelle every day. I can't imagine how hard all of these decisions must be. I am praying along with you that God makes the answer crystal clear, and that once your decision is made that you and Scott have total peace about it.
This will all come clear to you when it should. I'm sure of that.
You are taking all the right steps, checking and re-checking. As a parent there's little else you can do but pray for discernment.
Chocolate does not HURT.
And coffee beverages, legally addictive stimulants.
Praying for all of you! Such a blessed family and I have absolute faith and confidence in your wisdom.
And she's so stinkin' cute. Adorable.
And I love her name.
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