It seems like forever ago that Levi had his open heart surgery to repair his aortic valve and aortic aneurysm. It's been three months -- 13 weeks tomorrow to be exact. The past three months have been filled with all the busyness that three little boys bring to a household! Fall is now very much in the air with Noah starting kindergarten, Jacob in preschool two mornings a week, and Levi actually having his mommy all to himself for a few hours!
I know it's been awhile since my last update on Levi. With so much time and focus spent on Levi's surgery and recovery, once things started to let up a little, I just found myself wanting a little break from it all too. For weeks now, I've been meaning to write an update, and for one reason or another just never get around to it. I think I've also been avoiding it because I don't just have good news to share.
I do need to rewind to early August though. On August 4, Levi had his six-week post surgery appointment with his cardiologist. He had a sedated echo which showed several good things. His aorta was now a normal size after the repair and his left ventricle was no longer dilated. He only has trace to minimal aortic valve regurgitation (leakage) now, instead of severe. These are all great things!
However, it appears that his aortic stenosis (narrowing of the valve), measured by the pressure gradient, is up in the moderate range. At Stanford, after surgery, is was noted as being mild. I was shocked to hear that it was now moderate and questioned the doctor about it. She was pretty confident in the reading though. Because the stenosis is up in the moderate range, instead of seeing Levi in six months as hoped, the doctor wants to see him again in only three months. So, Levi's next echo is scheduled for November 3. I'm eager to see what this exam shows. It may be wishful thinking or just denial, but I'm hoping that somehow the last echo was off and that his stenosis is really only mild.
But what if his aortic stenosis is really in the moderate range? Assuming that's the case, he will be monitored fairly closely again to see if it worsens and to see what effect it's having on the left side of his heart. Over time, the extra work of pushing blood through a narrow valve can cause left ventricular hypertrophy, or enlargement of the heart. Levi would once again need an intervention -- either a balloon dilation valvuloplasty to open the valve (this is a catheter procedure which is much less invasive than surgery, but carries the risk of causing more regurgitation...the same procedure Levi had when he was born) or open heart surgery again to repair or replace his aortic valve. Hmm, sounds too familiar.
So when would an intervention be needed? We don't know. With aortic stenosis there are no good predictions for how quickly it will progress. Everyone is different. Levi's cardiologist said that she follows several patients with moderate aortic stenosis who have been stable for several years, so that's hopeful. But really it's a "wait and see" again.
We know that Levi will have more surgeries in his lifetime. We just really hope that he'll get at least two or three years out of this first surgery. That may still be the case, but it's disappointing to see his stenosis already up to moderate just six weeks after surgery.
Just like before, Levi is still asymptomatic. You'd never know what's going on with his heart by looking at him. He's definitely a little ball of energy! He's go, go, go, and into everything! He knows how to open all the doors in the house and is super fast, so we have to keep a sharp eye on him.
He's a momma's boy for sure too. He loves sitting on my lap while he sucks his thumb and holds his "monkey blanket" close to his face. He's such a sweet boy!
Levi's getting big and weighs in at almost 24 pounds! At his one year pediatrician appointment, his doctor said he looked great and is right on track developmentally. He did have a bout with croup a couple weeks ago, but is healthy again.
It's amazing what a year will do. I remember last year at this time, I was still trying to find my balance in the world of raising a child with a congenital heart defect. In the early days after bringing him home from the NICU, I wondered if he would live through the day or week. (Unfounded worries, but still real to me). He slept right next to me in a bassinet for several months and I remember checking on him throughout the night to make sure he was still breathing. Fifteen months later, he's still with us and so full of life. He has a smile and laugh that melt my heart. I love watching him change and grow and I thank God for the time that Levi is here with us.
We're enjoying our time as a family. Really, I feel like I'm thinking about Levi's heart health a little less these days. Though I still think about it daily, it's not nearly as consuming as it was before.
As I type this we're all enjoying one of our last warm evenings in the backyard. The boys are playing with sticks, balls, and rocks. Oh wait, Jacob's now being dramatic over something and I just wiped up pee spray in the bathroom. And that's how life with three little boys goes. I love it. I really do.
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| 12.5 weeks after surgery |
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| 12.5 weeks after surgery |
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| 12.5 weeks after surgery |
So when would an intervention be needed? We don't know. With aortic stenosis there are no good predictions for how quickly it will progress. Everyone is different. Levi's cardiologist said that she follows several patients with moderate aortic stenosis who have been stable for several years, so that's hopeful. But really it's a "wait and see" again.
He looks wonderful Erika. I'm sorry to hear about the worsening stenosis. That is the exact issue that Matthew had at 5 months and why we had to do the 2nd cath procedure. The good news is that while it did cause his leakage to go from non-existent to moderate his heart is working great. Not nearly as hard and all is well. I feel your pain with the "wait and see" though. It's never easy. Like you said, they're all different. Our cardiologist says the same things as yours. They have patients that progress rapidly and others that are great for years before additional intervention is needed.
ReplyDeleteI will keep you all in our prayers. And just so you know, I'd be hoping for the same "error" on the last echo :)
You write beautifully, which is no easy task when describing difficult topics like pain, fear, and the unknown, not to mention explaining medical terms AND choosing perfect photos which you've taken yourself. While you're also in the midst of meals, driving them around, bedtime, pee on the floor, etc. You're awesome, and so is your family! Prayers continue.
ReplyDeleteErika, you're amazing! Thank you for sharing all this with us. Let me know if you need help on Nov. 3rd. We are always praying for Levi's full healing.
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