May 14, 2012 9:00 am  •  DOUG ERICKSON | derickson@madison.com | 608-252-6149

Jonathan Terrill, 3, rides in a hammock swing in the backyard of his home in McFarland. His parents, Melissa Terrill, pictured, and Mike Terrill, started Mikayla’s Grace, a nonprofit organization that provides care packages and memory boxes to parents with children in neo-natal intensive care units. The charity is named after Jonathan’s sister, who lived just 36 hours.

Mikayla Grace Terrill was born three months Premature at St. Mary’s Hospital in Madison — a micro-preemie — and weighed just 1 pound, 5.5 ounces. She lived 36 hours.

For her parents, Mike and Melissa Terrill, leaving the hospital without her was almost too much.

“When you get pregnant, you don’t expect to come home without a child,” said Melissa Terrill, 33, of McFarland. “It was just so shocking.”

That was in June of 2010. One year later, the couple baked strawberry cupcakes for the nurses in the neo-natal intensive care unit at St. Mary’s.

They also donated to the hospital 66 books, 28 gowns with matching booties and hats, 20 care packages for parents with babies in the intensive care unit, and 12 “angel memory boxes” to help other parents remember the children who would not be coming home with them.

With the donations, a charity was born. Mikayla’s Grace, the name the couple chose for the nonprofit organization, has now given hundreds of items to the neo-natal intensive care units at St. Mary’s and Meriter hospitals in Madison. The organization hopes to branch out to hospitals outside of Madison.

The effort has given the couple a concrete way to help other families while honoring Mikayla’s memory, said Mike Terrill, 35, a recruiter for the pharmaceutical industry. It also has given friends and family members a way to broach a very difficult subject, said Melissa Terrill, an optometrist.

“It’s such an unnatural thing for a child to die that people just don’t know what to do,” she said. “Talking about it is really challenging, so it can become isolating. This helped people acknowledge the loss.”

Mikayla was the couple’s second child. Jonathan, now almost 4, arrived after a problem-free pregnancy.

Nine months after Mikayla’s death, the couple learned they were pregnant with their third child. A routine ultrasound found the baby did not have a heartbeat, and Melissa underwent a surgical procedure to end the pregnancy at 10 weeks. The couple named the boy Chase Gabriel.

All of those experiences now inform the work they do through Mikayla’s Grace. Each care package includes, among other items, a disposable camera, lip balm, hand lotion, a scrapbook specifically for preemies and a journal. The latter would have been especially helpful during Mikayla’s brief life, Mike Terrill said. He was often scrambling for scratch paper to record things doctors or nurses said about Mikayla so he could take the information back to his wife, who was hospitalized in a different room.

“It all happens so suddenly,” he said. “These were just some of the things it would have been nice to have with us.”

Drawing on feedback from other bereaved parents, Melissa Terrill created two pamphlets for the memory boxes — “What I wish someone would have told me before I left the hospital” and “Making funeral/cremation arrangements.”

Using items in the memory box, parents can make a 3D impression of their child’s hands and feet and store a lock of hair in a keepsake tin. The box also includes a teddy bear (for siblings), special burial clothes, a “certificate of life,” a votive candle and numerous resources for grieving parents.

“Grieving families don’t have the energy or the time to do a lot of research,” said Chantel Schneeberg, a nurse and perinatal bereavement coordinator at St. Mary’s. “What Mikayla’s Grace has done is taken all that time and energy and done the research. It really has made it a lot easier for families incurring the loss.”

Decades ago, parents rarely got to see or spend time with a baby who died in a hospital, the thought being that developing a bond with the child might make the loss seem even greater, Schneeberg said.

That approach has evolved over time to one in which hospitals now encourage families to keep the baby in the room as long as they want and to make those special memories.

“We tell parents, ‘Nothing you ask is abnormal,’” said Laura Ziebarth, a clinical nurse specialist in the neo-natal intensive care unit at St. Mary’s.

Some parents have wanted to bathe their deceased child or take the child on a walk in the hospital’s garden, Ziebarth said. One couple put their child in a car seat, perhaps because it was a special gift from a family member, she said.

Last October, Dan and Kaylan Pesature’s son Jackson arrived stillborn at 32 weeks at St. Mary’s. In photos of him, he is dressed in outfits provided through Mikayla’s Grace.

“It was just such a comfort in that moment to get that angel memory box and to know other people had experienced what we were going through and had gotten through it,” said Kaylan Pesature, 28, of Madison.

The Pesatures now are among the dozens of volunteers who donate financially to Mikayla’s Grace and help put together care packages and memory boxes for others.

Each memory box costs about $45 and each care package about $30, Melissa Terrill said. Money comes from donations and fundraisers.

The organization also sponsors an annual event called Forever in Our Hearts Remembrance Day to honor families who have lost babies through pregnancy, stillbirth or early infancy. This year’s event is planned for Oct. 13.

The Terrills are now pregnant with their fourth child, due May 30, and the pregnancy has gone well. Their feelings are more cautious this time but also deeper and richer.

“I’m just much more aware of every moment,” Melissa Terrill said. “Every moment becomes part of the special memories of this pregnancy.