It has been a while since my last post but know that there are some days that I know that we only make it through the day by grace and the prayers for our family. Life with two, just 14 months apart has been a challenge but our hearts are full with lots of giggles, snuggles, and everything little boy.
We recently made our routine trip to Houston for a slew of appointments for both boys and everyone got a good check up. Bennett still has an excess piece of tissue in his atrium but the cardiologist sees no reason to be concerned about it. She wants to do a follow up echo in about a year to see if it grows as he grows or it would be our hope that it would completely go away on its own as it grows.
Easton had a routine echo, x-ray, and cardiologist visit that left us with good news but also burdened hearts and minds as we sift through how to move forward with his care. As per my last update, we had reached out to the surgeon at Standford for a second opinion regarding his collaterals (MAPCAS). We have since heard back and they have given us their surgical recommendation but it would be an elective procedure with an unknown amount of recovery time, across the country. Easton’s cardiologist believes we should go for the surgery but also used the term “great risk/great reward,” which is just not something you tread lightly as a parent. There are several details and further questions that need to be asked before we would feel comfortable moving forward with the potential surgery. The issues at hand are that the Stanford surgeon did not actually say he would take on Easton’s case (just made a surgical recommendation), we don’t know if the Stanford surgeon has ever preformed the surgery on a child who has some of the same parts as Easton’s diagnosis, particularly those with a single ventricle (pumping chamber)—and if he has, have those children gone on to have the surgeries to address having just half of their heart. (Easton is NOT currently a candidate for those surgeries that he needs because his heart anatomy/lungs just aren’t where they need to be for a successful transition). Also, his cardiologist believes that if we have this surgery done in California then ALL of his subsequent surgeries Easton would need to have would all need to be done in CA, which throws a major kink in the plans. The last issue that weighs the most heaviest is that if Easton has this elective surgery and it is successful, Easton might one day be a candidate for a heart transplant. As of now, Easton is not a candidate or can’t even be a candidate for a transplant because his heart anatomy is also affecting his lung growth and development. We need his lung development (controlled by the pulmonary artery) to continue to grow as he grows. Of course, no parent throws around the term heart transplant lightly and that is a road that I am not even sure how and when we would weather, but for for we enjoy our sweet little man, all of the successes he has, and take it day by day.
So, we’ve had much to process and have been trying to think about all of these things, as well as continue to parent two young children, along with balance a marriage/job on top of all of it. Like I said earlier, not a day goes by that I don’t stop and think that there are so many people who we know and others we don’t that are praying for our family, particularly Easton.
