The days following Leo’s mechanical pleurodesis were terrifying and seemed hopeless at times. The lack of fluid leaking meant his body and lungs held onto it, as you can see from his swollen eyes and face in the above picture. Doctors began saying that we may be reaching the end of the rope as they grew more unsure each day about whether Leo could ever be listed for a transplant. Still, doctors continued to work tirelessly to find an answer as to why Leo’s lungs were suddenly in such bad shape, given that he did not have any intrinsic lung disease. About a week later, a couple of adjustments were made and his lungs rapidly improved. Three days later, Leo was listed for a heart transplant.

Fun fact: Leo’s twin brother Derek rolled over for the first time the night before Leo was listed 🙂

An unexpected call came at 7:37am on my first Mother’s Day just as I arrived at the hospital. It was a call letting me know that the team had accepted an offer on a heart for Leo that was the right size and blood type. His OR time was 4:30pm. We waited all day while one surgeon went to look at and retrieve the heart and the other stayed at CHCO to perform the operation.

The day was filled with happy tears, hugs and celebrations. The CICU had a Mother’s Day activity involving the boys’ footprints and we gladly welcomed a distraction from all the anticipation.

Right before 5:00pm, Leo was wheeled back to the OR. The surgeon opened his chest quickly and Leo laid on the operating table on bypass waiting for his new heart. Around 8:30pm, it arrived. The same surgeon who retrieved Leo’s heart did all of his previous surgeries so it was very special that he was the one who ended up getting Leo’s heart for him.

The surgery went smoothly. The CICU attending doctor came into the waiting room around 10:30 and told us that heart was beating. We were told it could take 8-10 hours total and Leo was out in about 6 hours. At 11:30pm, I heard the CICU bell sound, which signifies a patient arrival. This time the bell was for Leo. We watched as our baby was wheeled out with his new heart all thanks to a selfless donor family, brilliant doctors, and the people who refused to give up on him.

His battles were not quite over, but this was the biggest step yet.

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