Wow, I can't believe we are here. One year since Max's open heart surgery. Alex and I were discussing it last week and when we think about the follow up appointments, it seems like a long time ago but when you put the number 1 year onto it, it doesn't feel like it has been that long.
In August we had a cardiology appointment and it went fairly well! The cardiologist still hears a murmur which is normal but can't distinguish if it's from his pulmonary valve that was left open or if it is from the small suture holes around his VSD patch. Technically she needs two echos that show no blood flow crossing over those two holes to officially say it's closed, right now, since she is still hearing blood flow, she can't officially say it's closed. However, they are so small that she has absolutely no concern for it. So that's good news!
The cardiologist also mentioned to us that the gradient, meaning the pressure of blood flow into his pulmonary artery, is increasing quicker than she predicted. After surgery it was measuring at 17 and now it's 47, honestly I don't know what the numbers mean but since it was a higher jump than we wanted, we have to go in for a follow up in February. What does this mean long term? The procedure that he will need every 10-15 years (valve replacement) could come sooner than 10ish years. She did reassure us that with right sided heart complications, they will see signs of needing repair/interventions before any symptoms show for us. The procedure itself won't change, it's just timing which is good news as well.
We had a Neuro-Cardiac development appointment in October just to make sure that Max is meeting all of his milestones as it is common for CHD kiddos to be slightly behind in growth and development. That appointment went amazing, the physicians all said that he is exactly where he should be and socially/emotionally, he is above average.
Some other things that have happened since the last update: we celebrated Max's first birthday! It was Wild One, safari themed. It was perfect, everything that we could have wanted and more. Max is walking, EVERYWHERE. He's trying to say more words/sound out more consonants. We unfortunately have battled RSV already this season. We've been hospitalized for croup this summer. He has his first experience camping. He has 7 teeth total, one is a huge molar and his hair is (finally) growing in long and blonde!
We are so incredibly proud of this little boy, he has been through a lot in his first year of life. To watch him go through it all with a smile on his face, laughing and being his silly self is so inspiring. He has shown us how to be strong, love, and persevere through all phases of life. We are so honored to be his parents and share his story with the world.
We love you Maximus with all of our being. Happy Heart Day 🩷
God and Saint Gerard are good.
