Ten years of appointments

Hard to believe we’ve been on this journey for ten years now. (When I was still pregnant.) By now most everything has changed. His cardiologist Dr danford retired. His surgeon Dr Hammel moved away. His nurse Jenny switched departments, a new hospital has been built. Blaise had his full blown cardiology appointment this morning at Children’s. Since he’s getting older, and we are getting further out from his Fontan surgery, his Cardiologist is now wanting to run more tests and check more things out. Things can start to arise as his modified heart works twice as hard. This could be leaky valves, blood pressure issues, arrhythmia and basically anything else. We are also starting to do blood work tests for heart function, liver enzymes to look for liver failure as that’s one of the most common complications for post-Fontan kids. We also added in wearing a 24- hour holter monitor last week and had his normal echo this morning. It’s been a lot if testing for a kid who hasn’t enjoyed it. He’s also at an age where he understands the depths of what all this means and how important good results are.

Blaise passed everything with flying colors today. All tests, blood work etc came back fine. For the first time he has a one year pass til his next visit. As I told the three doctors in his room today, the past ten year journey has been one that would have been impossible to wrap my head around ten years ago. The highs, lows, daily stress, unknowns. One thing through it all has been Gods incredible blessings He’s given Blaise. We thank God EVERY day. 

Thanks to our "community" for your continued prayers.

Heart month

It’s February 1st, which means it’s Heart Month! 1 in 100 babies are born with a heart defect. Blaise was born with Hypoplastic Right Heart Syndrome, often known as the most severe heart defect. After three open heart surgeries and three heart cath surgeries, Blaise will live his life with only a two (not four) chamber heart. Not a week goes by that I don’t see or hear about the death of another heart warrior. Our family continues to be in awe and so thankful to God for the life He’s provided Blaise. We hope his current heart will last him into his 30’s, and with the constant improvement of modern medicine, even longer. To my other heart mama friends who know what this life is like: you are the strongest moms I know, thank you for the constant support. To Blaise: you are a warrior in the truest form. I’m in amazement of how you live everyday, oblivious to the fact that you are any different. You are the one who reassures me daily that “I’m fine mom, I’m not hot, cold, puffy, blue, clammy, tired, short of breath......” 😂 You’ve also taken the last year in stride, and have heard more no’s then yeses than any kiddo should. I’m forever blessed beyond measure to be your mom. Thank you for the many, many prayers said for Blaise. God has been hearing them!