Levi Overall
Levi's still doing great. There are no outward signs that his heart is bothering him. On Jan 18, he turned 7 months old! He weighs over 17 pounds and is more and more interactive and playful each week. His favorite activities include sitting up playing with toys, rocking back and forth on his knees, smiling at his crazy brothers, bouncing in his jumper, being held on my hip, and splashing in the bathtub. He loves eating oatmeal baby cereal, yogurt, and a range of fruits and veggies. He takes two two-hour naps each day and sleeps about 11.5 hours at night, with one feeding somewhere in the predawn hours. He's a happy little guy!
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| seven months old |
Family News
James is on a business trip to Mexico right now. It's his second 4-day trip this month, which is more traveling than he's done in awhile. When he's gone it's a bit more challenging in the mornings and evenings. He's so good about getting breakfast for the older boys and then putting them to sleep at night. Needless to say, it's been a bit busier for me this week!
The weather has warmed up recently. The snow is gone and it's been in the low 50s, which is "warm". It's been fun to get outside! Noah and Jacob have really gotten into riding scooters and bikes. This evening they were outside playing with the neighborhood kids and had a great time zooming up and down the sidewalk. Levi watched from the Baby Bjorn and a very sweet 4th grade girl from across the street hung out with us. Then we ordered our favorite pizza and brownies from Pizza Mondo. Daddy's away, so I don't feel too guilty about that!
Meeting with a Surgeon
First I want to clarify that Levi is stable as of now and does not need an intervention yet. But he will need open heart surgery at some point. Last month I mentioned that we were meeting with Dr. Langley, a cardiothoracic surgeon from OHSU who happened to be in Bend for a few days. This is the first opinion we've received from a surgeon regarding Levi's condition and need for future surgery.
Interestingly, he recommended trying to repair Levi's leaky and stenotic aortic valve using a fairly new FDA approved material called Cormatrix. In overly simplified terms, this bio-scaffold material allows surrounding cells to grow onto it, regenerating the same type of tissue and doing it without scar tissue forming or any type of rejection. Aortic valve repair is very complicated and it's possible that the repair would not work and the surgeon would have to move on to a "Plan B." If the repair did work, it still wouldn't be a life-long fix, but it may buy some more time and give Levi more options in the future, especially since this is a field that is seeing lots of advancement. There may be less invasive ways to replace valves in the future.
If you're interested in reading more about Cormatrix, check out this site and also this Q and A.
Dr. Langley said that in his opinion, there are basically three options for Levi at this point:
1. Attempt a valve repair
2. Replace the aortic valve with a homograft (preserved donor valve)
3. Ross Procedure (this is the most common intervention for his condition and age and the one we've previously been told he'd need. Levi's diseased aortic valve is taken out and replaced with his own healthy pulmonary valve that should grow with him and function normally. A pulmonary homograft valve (from a donor) then replaces Levi's pulmonary valve and will need to be replaced periodically as it won't grow and will wear out eventually).
Other points of interest from our conversation:
- on average a child like Levi could need 5-6 open heart surgeries over his lifetime
- after looking at the echos, he didn't think Levi would need surgery in the next six months!
- he wouldn't speculate after that
- he thinks Levi will end up needing surgery due to the valve insufficiency (leakage). It's moderate right now, but if it gets worse it could cause the left ventricle to enlarge, become thickened, and not work well.
- once a series of echos shows his heart getting worse, then we'll schedule surgery.
- most likely the surgery would be planned months in advance, not days or weeks (phew!).
It was certainly a very informative meeting and we walked out with our minds spinning with new information. We're really looking forward to hearing what Levi's cardiologist has to say at next month's appointment. She had previously said Levi would most likely be looking at a Ross procedure, and that may very well still be the case. We're eager to hear what she thinks about this new repair procedure. We'd also love to hear what other top pediatric heart centers and surgeons think about Levi's heart.
I'm thankful that we are not yet pressed for time in making a decision. We want to be as informed and as ready as possible when the time comes.
For now, we're enjoying the day to day excitement of three busy little boys!
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| Brothers! Levi turns 7 months old |
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| Noah on a preschool morning |
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| Jacob decorating a forgotten gingerbread man in Jan. |
