This morning, a nurse came in and told me the cardiologist wanted to talk to us today, and asked if my husband could come to the hospital to be a part of the discussion as well, as they had discussed Annabelle’s cath results in their big cardiology meeting this morning.
Obviously, this freaked me out! It is one thing if they want to just talk to me, but another thing to ask me to get my husband in here too.
So Scott came in, we did doctor’s rounds, and waited. And waited. All the while I was out of my mind nervous! Then the social worker came in and said that the cardiologist had asked her to be in the meeting too.
Then I was REALLY nervous. If the news was such that I’d need a social worker (no offense to her… she’s been a HUGE help while we’ve been here) then that doesn’t sound like such a great thing.
Another half hour goes by, and I find out that they have also asked Annabelle’s heart surgeon to be there as well as our “regular” cardiologist who will see Annabelle once she is out of the hospital.
We sit down and have our meeting, and one of the things I’ve been fearing is what they wanted to talk to us about.
The consensus among the doctor’s is that we need to start the process of listing Annabelle on the heart-transplant list.
Her valve is still very leaky, even after one valve repair. Her heart function, while not bad, is NOT great, and a baby must have really good heart function in order to tolerate the Glenn and Fontan repairs. THe fear is that we will do the Glenn… and Annabelle will not do well. She would either not survive, or have to be put on the transplant list as a last resort, and many times kids don’t get a heart when there is so little time.
Listing her now instead of doing the Glenn, while she is semi-healthy, would give us more time to possibly get a heart.
The other option is to do a valve repair, again, first, and just see how she does. If she does better, then great, we try for the Glenn. If she doesn’t, then we get on the transplant list. But by then, we are at least a month or more down the road, we’ve gone through another open heart surgery with more risk, are potentially not as healthy as we are now, and are just now getting on the list.
As you can imagine, Scott and I are overwhelmed at the moment. It just isn’t something I can completely wrap my head around yet.
I don’t know a lot about transplants, but a few things I do know.
They don’t last forever. The average heart transplant must be repeated every 10 to 15 years. That means Annabelle would be looking at having a heart transplant every 10 – 15 years for the rest of her life. Granted, this doesn’t take into the fact that medical advances are sure to happen and hopefully these numbers will get better every year, but that is what they are currently.
A transplant doesn’t fix everything. It fixes her heart, yes, but it introduces a whole host of other potential problems. I don’t know all of those problems yet… we are meeting with the transplant team tomorrow to discuss.
Right now, we are in a fact-finding mode. We are getting 3 second options (I guess that would make them second, third and fourth…) from other hospitals as to what they think the best course of care for Annabelle is.
We are praying a ton, and begging God for wisdom.
And lastly, personally, I am coming to grips with the fact that … well, I guess for a long time now I’ve been in this “things will be SO much better after the Glenn” mind-set. It was my light at the end of the tunnel.
I’m having to realize that we might have to switch tunnels… and the light is even farther off now.
Anyway, your prayers tomorrow as we meet with the transplant team, and as Scott and I spend some time together and discuss and pray about Annabelle, are really appreciated.
Also, Annabelle had a not-so-stellar day today. She is still having fevers, and ran one pretty much constantly the WHOLE day. They just checked her temp a minute ago and that was the first time since midnight last night that she has NOT run a temp. I went to work for a few hours, and had to leave early because I got a call that she wasn’t doing well and was being taken back down to the PICU. But when I got here, they said they were going to check one more blood gas… and it was GOOD. So, after much discussion, she is staying here tonight, and we will reevalulate in the morning. If she has ANY little blip in the radar tonight though, we’ll just go down to the ICU as a precaution.
There are SO SO many things I have to say today… but I just need time to sort them out. Overwhelmed… that is a good way to describe how I am feeling right now.
But God knows this too. And thank GOODNESS God is not overwhelmed… and he as a TON more on his plate than me:-)
POSITIVE NEWS: Child life came by and asked if I needed anything. I told them if they had an extra mobile… that Annabelle might like it. We hang up her toys downstairs… but I thought something moving would be fun for her. Well… she LOVES it! It goes round and round and she sat there and stared at it and moved her head and eyes with it… it was hilarious! We have one at home… but I don’t think it will fit the hospital crib well, but this one fits perfectly!
Hurray for baby mobiles!
Praying for all of you. I can't imagine what is going through your mind and heart…
Oh goodness, Krista. What a lot to take in. But isn't it a great thing that the doctor's all work together to do the very best for your little Annabelle? We pray for those doctor's each and every day to have the wisdom to do the right thing for her and we trust that God gives you the wisdom needed to make the decisions you need to make. I know God's got a plan. And he loves her so! I am praying for you, Krista! (((hugs)))
I've just recently starting following your blog. Thank you for sharing your journey with us. I can only imagine how overwhelming all of this is. I am praying that God will give you wisdom to make the best decision for your daughter and that you both with have a total peace with the decision. Blessings!
We'll continue to pray for you all.
Child life is awesome. They can get you just about anything you can imagine.
I don't think I've said this enough, Krista, but you are amazing. After the day you had, to be able to write such a post is incredible. I admire your strength, your faith, and your ability to see the positives in things like mobiles when your mind must be reeling and your emotions taking a ride on a Tilt-a-Whirl.
I'm grateful Annabelle has inherited her mommy's best traits. She's a strong little girl who trusts in the love of her doting parents, who in turn trust in the One who's in charge.
I know it will make this comment long, but I'm not just going to tell you I'm praying. I'm going to pray "with" you right now.
Lord, I lift Krista and Scott to you tonight. You know the huge amount of information they had to take in today, how weary they are from the months of waiting, watching, and wanting. Please wrap them in Your arms, pull them close to You and each other, and give them peace. I ask, too, that You give them wisdom to make the tough decisions they're facing, that You continue to work through the medical professionals, and that You hold Annabelle in the palm of Your hand. No matter how big our trials and tribulations may seem to us, they're not too big for You. Please work Your will in this situation. I know You're a loving Father who understands what Krista and Scott are going through and will be there for them every step of the way. Thank You that they don't have to face this alone. In Your Son's name, Amen.
Jen shared your story with us. We're praying for you. She also gave me this scripture verse earlier in the week, so maybe it might help you too! Trust in the LORD with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight. Proverbs 3: 5-6
Krista, I am a cousin of Kaye Dacus's and she directed me to your site. I will be lifting you up in prayer.
I'm relatively new to your blog and I don't think I have commented before. I just wanted to tell you what an inspiration you are. You are so strong and you always seem to hit the ground running no matter what the hurdle.
Annabelle will be in my thoughts and prayers.
Oh my, that's definitely a whole new plan.
But as you said … there are so many new medical developments, who knows how it will be ten years from now?
But for now this is a shock. And you need God's strength and guidance more than ever!
I'm praying and praying …
Krista- I am the mother of a transplant baby. I understand the emotional roller coaster you are on right now. So many things to discuss, think about, absorb! Please know that there are good stories out there for children who have had transplant. I sent you an email, too. Feel free to contact me if you have questions or just need to speak with someone who has been there. My son is post – transplant 3 years and is a MIRACLE of God!
Dear Krista, Praying for wisdom for you and Scott, and praying for healing for precious Annabelle. Hugs.
God will give you wisdom, I KNOW He will. And I will be praying. (((Many hugs))
Oh, Krista, how my heart aches for you. I sit here with tear-filled eyes, wanting you to know we will especially be praying for you and Scott to have God's wisdom as you have very important decisions to make. Of course, Annabelle, as well as, your other 3 girls will continue to be in our prayers, too.
I wish there was more that we could do to ease your pain. Just know that our family is praying, along with many others. (And though we have never met, if I could, I'd give you a great big hug now.)
As always I am standing behind you and agreeing with everyone in prayer for wisdom and skill for the doctors and peace and confidence for you and Scott if this is in God's plan, and well as clarity in what your decision should be. we are all in awe of your strength and ability to journal during a time when many of us would be crumpled up in the fetal position unable to speak! You have armies of Angels surrounding your whole family, and as is evidenced in the facebook comments, God knows your needs before we even ask…as many of us were awakened at 4 this morning to pray for her. Praying without ceasing, Cheri from Pa.
Oh, Krista! We're praying for you today! I don't really know what to say right now, but I'm sure praying for His guidance and wisdom.
Jesus IS the light at the end of the tunnel. And He sees your every concern and is shining that light even now on baby Annabelle bathing her in his love and care. I echo Keli's prayer. Hang in there, Krista. You CAN do this. He is shining his light on you, too.
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