12/16/2025
Day 712 of Baby Liam’s heart journey outside of mom!
A lot has happened since the last time I posted in September!
Liam switched classrooms and is with children all older then him, some a few weeks but most a few months. He’s absolutely loving school and walks in every day with no tears!
He had another echo and ekg in November in Texas. He was so calm and still for all of his tests. It made my momma heart so happy that we didn’t have to sedate him to get clear pictures.
You may remember earlier this year that we were concerned that his pulmonary arteries weren’t growing and we confirmed that they were in the spring. They are still growing and are not a concern at this time.
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:
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. More good news is they don’t think this is something that will need to happen in the next year or two. However, (take a deep breath) they do think it might need to happen in the next 3-5 years.
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. I can dream that we will never spend another night in the hospital. Dreams do come true.
Liam is currently in physical therapy and speech therapy once a week. We don’t think he is delayed, but he is a little shy and needs to build up his core strength. He is learning to use his big voice when talking to other so don’t be afraid to tell him “use your big voice” when you see him 🙂
He absolutely loved trick or treating, enjoys Bucees as much as Mommy does and got to meet Mickey Mouse and all of his friends for the first time in his first ever cruise!
He thoroughly enjoyed Thanksgiving with family and friends. We spent it at the duck farm where he got one of his Christmas presents early from his maw and paw duck - a truck!
He has also grown much fonder of Santa Clause this year! We can’t wait for Christmas next week but this week, we mourn the loss of a dear family member and are so grateful we got to spend Thanksgiving with them. Please keep our family in your thoughts and prayers tomorrow and Wednesday especially, but always as we need all the prayers we can get!
