First transplant post
Bela has had 12 incredible years of living life since my last post on here. We were getting really comfortable with our cardiology appointments every 4-6 months, endocrinology every 3-4, bloodwork every couple months, and occasional MRIs, procedures, or trips to the cath lab. Life has been full and so good. She's traveled a ton, ate a lot of good food, hung with friends, participated in theater, and found so much joy in her simple but rich life. We also had two more kids in that time.. more chaos and more love. I don't know if anyone will still look for and find this blog looking for hope for HLHS, but I hope so.
We've now been inpatient listed for heart transplant at status 1A for a month. After the decision was made I did feel a lot of relief, even though I was anxious about what this would look like for our family. Every day we wondered if she was ok to still be at home. The worry was constant. Since she doesn't complain, ever, it was hard to know how she was really doing. And she was very content and happy with her simple life. But that first night I felt it was absolutely time to be here, as hard as it was to walk through those doors, knowing this could be the new normal for us for a long time. This has certainly been a long road for her. But looking back through the last couple years of evaluations, procedures, back and forth between listing for dual heart/liver vs heart only, traveling to and posssibly listing at Stanford, and 10 months on status 1B waiting from home, there's been so much sweet life lived. We spent lots of good time all seven of us together before Benson left on his mission, and Tanner and I both got to take him up to the Provo MTC together, which was something I didn't think we'd be able to do. I'm so grateful for that time at home. Last week when I was feeling a little heavy, Ruthie said our nighttime prayers and said "we're so grateful that Bela is listed here in Phoenix so close to home and we didn't have to go to California" and I was so grateful for that reminder. It looked a lot more bleak for a while, and truly there is so much to be grateful for.
When I told Benson we were now inpatient, he responded with "I love her so much! She is more brave than I could ever be." Watching your kids grow up and mature and become amazing people is pretty much the most fulfilling thing I think I've ever experienced. I've spent the last 19 years pouring my heart into raising them, and loving them with everything I had. Both Benson and Bela are going through very different, but very big things right now, and I could not be more proud of both of them for how they are choosing to face them. They are showing incredible faith and optimism and they are inspiring and lifting me every day. I've also been so touched by Ruthie, Rosie, and Oliver's empathy and concern and tender hearts over the last few weeks with all the changes we've had.
Transplant has been daunting for me to say the least, since the first time we heard it was time back in March 2023. It has been tricky for my mind to wrap around it with all of its complexities. There is a lot to work through. I have been learning even more about how much of a miracle it is that she has lived 16 years with her anatomy. Whenever I tell staff she had the “Glennwood” procedure (the first and second of the three surgeries for HLHS done at the same time instead of separately) I'm told she's one of the lucky ones to have survived it. I don't think they do that a lot anymore unless they have no other option. The Fontan physiology (which she's had for the last 12 years) has sustained her life, but also gives her significantly elevated venous pressures and congestion in the heart which subsequently causes damage to the the liver and other organs. On top of that her tricuspid valve has been pretty much non-functional for several years now. I don't know why really, it probably doesn't do me any good, but I can't help but learn about and try to understand all this. It leaves me with so much awe. Awe at what her physical body has endured for 16 years, awe at the doctors that have invented and performed these procedures, and awe at the overwhelming amount of divine power I feel she has received and that I have been a witness of. Her single ventricle heart, which started out about the size of a walnut, has been an absolute champion.
This week for the first time Bela broke down and sobbed to come home. Tanner was with her and said it absolutely broke his heart. She needed a good cry I think, she's been so strong. He gave her a priesthood blessing, cried with her, and then she was ok again. Every time I walk out of there to come home it feels so heavy knowing how badly she would like to do the same. She's so grateful for the good staff that spends time with her, and for friends and family that visit. It's the highlight of the days for sure. She loves learning the names of the other kids on the floor so she can say hi to them when we pass by on our walks around the unit. Some come and go quickly, others are also waiting. She got some origami paper the other day and immediately made a bunch of origami hearts and put them on a little girl's door a few doors down from us who has been waiting 4 months. God has taught me so much through Bela.
I'm once again so touched by the abundance of support and love and prayers for her. It means so much.
"The lessons we learn from patience will cultivate our character, lift our lives, and heighten our happiness." Dieter Uchtdorf
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