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Hospital experience leads mom to serve families

by SUE THOMS The Grand Rapids Press on April 08, 2014 11:00 AM

GRAND RAPIDS, Mich. — Amy Nyberg remembers how long she had to wait to hold her babies: 52 days.

For nearly two months, she felt like a bystander, watching nurses care for Lucas and Jacob, who were born several months early.

“That was heartbreaking for me,” she said. When she finally got to hold her sons, “that was the first day I felt like a mother.”

Memories of that experience drive Nyberg as she helps other parents as the March of Dimes family support specialist in Helen DeVos Children’s Hospital’s neonatal intensive care unit. The program received the March of Dimes’ 2014 NICU Family Support Project of the Year Award.

The job represents a big career change from Nyberg’s life pre-baby, in which she worked in sales for an outboard marine company.

In 1999, she and her husband, Ralph, who live in Ada, were expecting triplets. Their first baby, Adam, was born at just 19 weeks, too early to survive.

“I was able to hold off delivering the other two for five more weeks,” she said.

On Aug. 24, 1999, she gave birth to Lucas and Jacob, weighing 1 pound, 5 ounces, and 1 pound, 7 ounces, respectively. They stayed in the NICU at Spectrum Health’s Helen DeVos children’s hospital for 120 days.

As the boys grew stronger and healthier, Nyberg began volunteering at the NICU and serving on the family advisory council. In the meantime, she gave birth to Liam, who was born 2οΎ½ years after his brothers, weighing 7 pounds, 14 ounces.

When she learned funding was available through March of Dimes for a family support specialist in 2006, she was eager to take the job.

“I just wanted to help other families,” she said.

“I thought it would be nice to be able to bring my experiences to the table and tell other parents, even though their situation is different, I’ve been through the NICU journey.”

Joan Rikli, director of neonatal intensive care services at Helen DeVos Children’s Hospital, embraced that approach.

Although she was advised to hire a nurse or social worker, she believed strongly that a former NICU parent should lead the program.

“What a parent can bring to it is that personal experience and knowing the emotional highs and lows that go along with having a child in the NICU,” she said.

While Nyberg’s focus is largely on supporting the families, she also provides valuable insights to staff, Rikli said.

Nyberg led an initiative to reduce the wait endured by parents after their newborn baby is whisked off to the NICU for care. She brought in parents to share their experiences with the staff.

“One of the moms said it felt like torture to have to wait to hear whether her baby was dead or alive,” Nyberg said.

She recalls, when her boys were born, asking several times if she could see her babies and being told they were not ready yet.

“That’s really hard as a parent,” she said. “You really want to be there. You just want to be with them, even if they are being worked on.”

After hearing the parents’ stories, the staff created a process to make sure parents receive an update no later than one hour after the baby is born, Rikli said.

The mother is brought to the NICU as soon as she is stable.

If the baby is receiving treatment, a nurse or social worker stays with the parents to explain what’s happening.

Nyberg also has been passionate about increasing skin-to-skin care for the babies in the NICU. The process involves placing the baby on Mom or Dad’s chest, with skin-to-skin contact, while both are covered with a blanket.

Research shows that babies benefit from cuddle time, and not just because of the obvious reasons of bonding with parents. It causes “actual physiological changes with the baby,” Rikli said.

“The temperature stabilizes better. The oxygen level increases.”

But making skin-to-skin care happen is challenging for babies whose health is fragile, who are in isolettes, attached to ventilators, IV lines or feeding tubes. Sometimes, it takes two staff members to make it happen, Rikli said.

In other cases, the baby is too sick to be taken out of the isolette. Parents can use an alternative method, in which they encircle the baby with their arms or hands.

Nyberg held a two-week “kangaroo-athon” in the NICU, in which moments of skin-to-skin contact were tracked with paper kangaroo cutouts decorating the unit.

“It really increased participation significantly,” Rikli said.

For Nyberg, it was rewarding to see the look on the parents’ faces. “They love it,” she said.

Another area of focus is providing breast milk for the babies.

Even though some cannot nurse, mothers can pump milk that can be provided through a feeding tube. Nyberg holds “lunch with lactation” twice a month in which a lactation counselor answers questions and parents share tips.

Nyberg’s sons Lucas and Jacob are now 14 years old and in the eighth grade at Forest Hills Central Middle School.

“They’re doing great,” she said. “We’re extremely fortunate.”

She is glad she can help the NICU program that helped her babies through those first fragile months of life.

“Because it’s at the hospital where my boys were, it’s extra special to me,” she said.

[PHOTO: March of Dimes NICU Family Support Specialist Amy Nyberg, shown on March 18, 2014 in Grand Rapids, Mich.  Nyberg has worked with the Michigan Chapter's NICU Family Support Program at Helen DeVos Children's Hospital which has recently won the March of Dimes national award for NICU Family Support Project of the Year.  (AP Photo/The Grand Rapids Press, Emily Rose Bennett)]

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