A tiny pacemaker keeps 10-month-old Lena’s heart beating. Our supporters and her team at Sanford Children’s keep fighting to give her a real childhood.

‘They’ve never given up hope on Lena’

January 29, 2020

“I always say I’m thankful for my journey,” said Melissa Olivier, with her 10-month-old, Lena, cooing in the background. “Half the battle is embracing the life you were given, not the one you pictured.”

Melissa was 30-weeks pregnant with Lena when a routine scan revealed that her baby’s vital signs were failing.

“She was low on amniotic fluid and wasn’t moving. Her heart rate was very low … my doctor said we needed to get her out,’” Melissa remembered. “Less than two hours later, Lena was here.”

Lena came into the world 10 weeks early with complete heart block — a congenital disorder that keeps her heart from pumping blood normally on its own. Her tiny body was also swelling from hydrops, another life-threatening condition.

“It made my heart sink to my stomach because we had lost a daughter to the same heart condition four years ago,” Melissa said. “I feel like we were afraid to have much hope for Lena.”

Lena was rushed into surgery where a pacemaker was implanted in her chest. She later spent 87 days in the Sanford Children’s Boekelheide Neonatal Intensive Care Unit.

“We have two other children, so it was a huge challenge balancing the NICU life and home life,” Melissa said. “The fortunate part was I could go home and know she was being taken care of. I never questioned that. They really do just care about your child. They become a part of your family.”

During the time in the NICU and the months that followed, Lena has faced one health scare after another.

“Everything that could go wrong, has gone wrong,” Melissa said, describing all that Lena’s been through in her short life … all the complications, five major surgeries and time spent in the hospital and doctors’ offices.

Today, Lena’s heart is 100 percent dependent on her pacemaker. Because of all the early health setbacks, she has a lot of catching up to do.

“Developmentally, she’s more like a 2- or 3-month-old,” Melissa said. “We’re at Sanford twice a week for occupational and physical therapy, and some sort of doctor’s appointment at the Castle once a week. We’re working on giving her some stamina, some core strength and working on her oral skills because she doesn’t bottle or eat food.

“My big hope is that she can live independently and be able to do all things that kids want to do. I just want her to be able to be a kid and enjoy life and not have to spend it in and out of a hospital all the time.”

‘Care you can’t describe’

This spring, Lena will need another surgery to modify her pacemaker, and another when she’s 3- or 4-years-old to replace it. It takes your breath away to think of everything Lena and her family have been through, but there’s not a trace of frustration in Melissa’s voice — only gratitude for her little girl’s life.

“We’re learning to adapt to our new normal,” she says. “My motto is to embrace chaos and choose joy.”

Throughout the journey, Melissa is glad to have Sanford Children’s at their side.

“I can’t even fully describe the feeling you have when you know that you can walk in someplace and they provide the best care you can even imagine. It’s care you can’t describe,” she said.

“You depend on their knowledge and expertise to make the best decisions for your child. I just feel like they’ve always steered us in the right direction and they’ve never given up hope on Lena.”

 

100% of every gift to Sanford Children’s cares for kids like Lena by helping:

  • Purchase lifesaving equipment.
  • Assist families with costs not covered by insurance, such as meals, lodging, travel, specialty foods, formula and supplies.
  • Care for every child, regardless of his or her family’s ability to pay.

Thank you to everyone who gives to help fight for futures like Lena’s!