07/31/2026
Day 940 of Baby Liam’s heart journey outside of mom!
A lot has happened since the last time I posted in December 🤦🏼♀️🫣
He had another echo and ekg in April in Texas. He was so calm and still for all of his tests. He also had a sedated CT scan this time (first time since his surgery) to take a better look at the coronary arteries (and everything in general) - they looked good and are growing.
You may also remember that we are currently watching his baffle.
The baffle (the patch on the hole between the lower chambers of his heart) is made out of pericardium (the heart sac) - yes they cut a peace of it to make his baffle. The baffle isn’t expected to grow with his heart and there’s usually a chance that it will have to be replaced once the heart is fully grown (teenager or young adult) but sometimes it doesn’t have to be replaced.
Our current concern: (since November)
There is a subarctic membrane growing off of the baffle (like a piece of a scar tissue) and it’s just flapping around in front of the aorta. This membrane is expected to continue to grow as the heart grows. The good news is that it’s not attaching to the aorta or anything else. It continues to just flap around out there. The velocity continues to increase ever so slightly and it seems to directly correlate with the growth of the membrane. If it continues to increase it could eventually damage the aortic valve so we (not me but the doctors- though I feel like I could do it with my eyes closed these days) would have to go in and remove the membrane. However, (take a deep breath) they do think it might need to happen in the next 1-2 years (as of today’s echo) - I will send all the results from today to his dr in Texas to get her opinion.
If they have to end up doing this, it would be another open heart surgery. Also, (as advanced as technology is) it’s really hard for them (the doctors- not me- I would totally be able to tell) to see the difference between the heart muscle and the membrane so there’s no guarantee that they would be able to get it all and it usually grows back and would have to be removed again….and you get the picture how scary this could be
BUT
We can pray, hope, wish that none of this will actually happen. Maybe the membrane will stop growing. Hopefully even if it grows the velocity won’t continue to increase. We can wish that the baffle is the right size and will never need to be replaced.
Liam has found his voice and is has become very opinionated. He’s potty training and doing a wonderful job.
He “graduated” from his therapy outlook and is no longer seeing any of his therapists at this point in time.
He loves trucks and Woody, Buzz and Jessie along with trains!
Him and Baileys are the best to friends.
He completed his first season of soccer shots.
First monster truck show
First x games
First sparkler
First beach trip
Our next visit to Texas is in January. Please pray for all good results.
Also- Saturday December 5th Liam will have his own team at the Heart Walk at Audubon Park. I’ll post more details in the comments if you want to donate and/or join us to celebrate him, his heart, and all of the others affected by heart disease!
