The wait between Leo’s respiratory distress event and his second surgery was one of the longest weeks of my life (little did I know what lay ahead). Our week of waiting was filled with a lot of prayer, calls to family, and snuggles (Leo is on my left in the above picture). The morning of Leo’s surgery was the first time I heard the surgeon mention that there would be a decent chance he will need a transplant. The surgery Leo was about to get could end one of three ways (see previous post for more detail): widen the mitral valve successfully (ideal but very difficult to do in a baby his size), do a Norwood to make his heart a single ventricle pump if pulmonary pressures are low enough, or if neither is possible, Leo would come out of the OR and need to be listed for a heart transplant immediately.

I waited on pins and needles for the hourly update. Waiting to make sure your baby is okay during surgery is difficult enough, let alone with all of the unknowns. Each call I got, Leo was doing well on bypass which offered some relief. Finally I received the news that the surgeon found a membrane around his mitral valve to cut and allow the valve to widen. He also cut the leaflet on the valve to further improve the stenosis. The echo in the OR looked great and the gradient was down to 3 from 12 (the lower the better).

This was the absolute best news we could have hoped for. We are still so incredibly grateful to his surgeon for saving his life with this surgery, and subsequently many more times. The surgery lasted 6 hours total and Leo handled it well. He was extubated a few days later, his gradient remained around 4 and he seemed to be doing great. He was even on room air for awhile.

The promising results of the surgery, however, came with a caveat. “The proof is in the pudding,” as his surgeon put it. The echo can look amazing in the OR and ICU when fluid balance is perfect and before any growth (or lack thereof) occurs. Though this was promising, we truly would not know the outcome until Leo showed us. During the post-operative talk with the surgeon he warned me that if the valve does not grow and Leo isn’t doing well, he will still need a heart transplant.

After another surgery for a g-tube placement and a total of nearly 9 weeks in the hospital, Leo was discharged! It was an exciting and terrifying day to bring such a fragile baby home. Thankfully I had the critical information from the surgeon that this was by no means a cure for his mitral valve problem, but more of a bridge to buy us some time in hopes of a valve replacement when he got bigger. Because of this, I watched Leo like a hawk once we were home, constantly monitoring him for any signs of increased work of breathing.

I still remained hopeful that there would be some chance he could get the valve replaced. Things moved steadily along as we settled into our new lives at home with twins over the next week. I thought 9 weeks in the hospital was a long time and being home again almost seemed surreal. I had no idea what battle was ahead of us, and it turns out this initial stay was just a drop in the bucket of Leo’s heart journey.

Remember to follow along on our COTA for Team Leo Facebook and Instagram pages for updates on Leo’s journey!