After a heart transplant and 402 days in the hospital, a Missouri baby finally gets to go home

KANSAS CITY, Mo. -- After spending more than half of his life in the hospital, 2-year-old Rohen Reeves and his family are finally going home.

“I couldn’t imagine him being two years old in our front room or in his bedroom or sleeping in his bed," Rohen's mom Amanda Reeves said. "That thought wasn’t even there, and the first time seeing him do those things was amazing."

Reeves said her son has spent much of his life receiving treatment, including a 402-day stay in the pediatric intensive care unit. Rohen was born with Hypoplastic Right Heart Syndrome, a congenital heart defect that affects the chambers, valves and blood vessels in his heart.

“When you don't know, when you're waiting for that call, it's so crazy because of the amount of stress on your body takes such a huge toll,” Reeves said.

Reeves said “normal” has meant something much different for her family as they’ve waited for Rohen to undergo heart transplant surgery.

“You wake up, you get ready, and then you take your whole family to the hospital and spend the entire day there," she said. "You come home, get ready for bed, and do it all over again when you wake up."

The long trips from Joplin, Missour, to the hospital eventually paid off when Rohen underwent surgery in September. It didn’t take long for Rohen to start to show progress.

“He missed 15 months of his life being in the hospital, receiving therapies," Reeves said. "He received speech therapy, physical therapy, occupational therapy multiple times a week, but I feel like he's catching up in fast forward. So it's really cool to watch and absolutely worth every moment of waiting. You don't realize how purple your baby is when they don't have proper blood flow until they get a heart, and now I'm like 'I have my brown boy back.'”

Now Rohen and his mother are on the road to recovery and working to adjust to their new normal.

“We're so looking forward to a normal, lazy day," Reeves said. "You're being home and doing nothing. Not having plans, your normal boring days. We're looking forward to those the most."