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Baby James Update
James has been doing really well— he is eating on his own, gaining weight, and is learning to stand on his own! All of his cardiology appointments have gone smoothly, and he is off all diuretics. We celebrated his birthday last week, and today is the one year anniversary of James’s first heart surgery! In the world of heart patients, the anniversary of someone’s open heart surgery is called their heartiversary. We hope that 5, 25, and 50 years from now this day will not be a sad reminder of his suffering, but that it can be a celebration of his strength. It is a day that represents three surgeries, and more to come someday. Seeing pictures of him post op is an amazing reminder of the miracles in his life.
All this time we have been asking for specific prayer requests, but now that James is in good health, here are some broader things you can pray for, if he is ever on your mind.
Pray that he is able to avoid any respiratory illnesses, which should not be life threatening anymore, but will be harder for him to get over than a normal child.
Pray that his INR is stable and that we can keep his medication dosage for his blood thinner working well for him.
Pray that his home testing machine starts being more reliable, so that he does not have to get weekly lab draws. We have been having issues with its results not matching the lab draw results for some unknown reason.
Pray that he is able to grow and play and enjoy his childhood despite the restrictions he will face, and that he will stay free from any brain injuries that are made more likely due to the blood thinners.
Pray that he is able to make it more than a couple years before growing out of his current mechanical mitral valve.
Pray that medical advancements continue to make heart surgery safer and provide more options for kids like James. Pray that another drug is developed someday that protects mechanical valves as well as warfarin, but with lower bleeding risk.
Pray for the babies who were wheeled into the OR today for the first time, and their parents who sit with them in the CICU tonight. Pray that one year from today their baby will celebrate their first heartiversary at home.
One year is a huge milestone and we want to say thank you for being on this journey with us, praying for us, and for spreading awareness about congenital heart disease.
God is Good!
Take care