Amazing Gracie, Door County baby celebrates first birthday

The wedding ring dangles loose on her wrist, just a hair below her tiny red left hand, a hand roughly the size of three adult fingernails. Her name is Sheridan Grace, but they call her Gracie. In time, they’d call her a miracle.

Sheridan Grace Bongle

Gracie Bongle was born May 6, 2007, three and a half months premature to Anna and Jon Bongle. She weighed just 15 3/4 ounces, or 420 grams, and was 9 3/4 inches long, fitting comfortably in the palm of her mother’s hand.

The family was pessimistic – after all, she was the smallest baby ever to survive at Green Bay’s Aurora BayCare Hospital, and Gracie’s doctors made sure Anna recognized the hurdles Gracie would face.

“Along the way we were pretty honest with them about the risk of problems, and the risk of her dying,” said Dr. Toby Cohen, a neonatologist and director of neonatal Care at Aurora.

Babies born under 500 grams have less than a 50 percent survival rate. Those that do make it through birth face high risks of disorders, ailments, vision problems and myriad other health problems. Anna, 24, braced herself for the worst as she lay relegated to a hospital bed in the weeks leading up to her daughter’s birth.

Her father’s wedding ring hangs loosely from Gracie’s wrist.

“I was fully prepared to go home empty-handed,” Bongle says.

But Gracie, the baby with a stubborn will that belied her fragile physique, had other plans.

Early signs of trouble

The doctors knew early on she would be born premature.

“In the first month I started bleeding,” Bongle said. “We did an ultra-sound and they found my uterus was not shaped right. That was the start. From then on it seemed we’d have a new complication with each visit.”

They hoped to make it to 26 weeks. Bongle would spend more than eight weeks of her truncated pregnancy relegated to bed rest, including the last two and a half weeks in the hospital. Yet her mother, Sandy Sawyer, and friend Heather Moore said she remained remarkably poised throughout, working when possible.

“She did really well, she was amazing,” Moore recalled. But with Gracie on tenuous ground it was difficult to dive in whole-hearted into the normal trappings of pregnancy – the baby shower, announcements, even getting a room ready would wait until two weeks before she came home.

Gracie arrived a day short of 26 weeks, and was the size of a 22 week-old baby at birth. She immediately inspired awe in the halls of the hospital, with one doctor telling Sawyer “we had a miracle in the NICU [neonatal intensive care unite] this morning.”

She may have been a miracle, but she was far from out of the woods. She would spend six months in neonatal care, doing the growing most babies complete in the womb.

Watching her develop in those tenuous months gave Moore an odd sensation.

“It felt like you were peeking inside her womb,” she remembered.

The doctors told Bongle the struggle to get Gracie home would be a roller coaster. She would drive down to Green Bay faithfully each day to see her new baby from her home in Sturgeon Bay, while still working at Seaquist Orchards in Ellison Bay.

Three times she got “the call” from the hospital to come down immediately because Gracie had taken a turn for the worse, but Moore said a familiar pattern emerged from those scary moments.

“It seemed every time things got really bad, she would come back stronger.”

It was as though Gracie just wanted everyone there to see how strong she could be.

In those first months of prayer and hope the family clung to the smallest of successes. On May 15 she made her first sounds, the slightest of whimpers. Her mother’s journal entry on caringbridge.org two days later noted that she was “a little chunker at 1.2 pounds!” Mom finally held her baby June 5, and Gracie climbed past the two-pound mark June 21.

Gracie presented somewhat uncharted territory for her caregivers. Success rates for premature births have come a long way over the years, but the book on caring for extremely small babies like her is still being written.

“Forty to fifty years ago I can guarantee you she would not have survived,” Cohen said. “At that time, babies less than 1,500 grams were considered not large enough to survive.”

In many ways Gracie was “a new book,” penning the pages with each hurdle overcome, each day reached. For example, her doctors were concerned she’d be too small for even the smallest breathing tubes they had.

The mother who had been prepared for the worst still couldn’t let her guard down as Gracie fought day-to-day, telling Moore at one point she couldn’t picture her daughter ever coming home.

But as the months passed the chances improved, and in early August there was talk of Gracie leaving the hospital, and she finally did October 20.

“It didn’t become real until I was in the car,” she said. “Taking Gracie home.”

Her homecoming would not be carefree, however. The hospital’s social services department notified the highway department and the electric company. If there was a power outage they wanted to make sure they got the power back on as soon as possible to keep Gracie’s equipment running, and in the event of a snowstorm they would need their road plowed quickly in case they had to make it to the emergency room.

One year later

Today she’s not quite up to normal weight at 13 pounds (a full-term healthy baby would be around 18), but Bongle has to remind herself that Gracie’s age is deceiving. She can’t be compared to other babies her age – if the pregnancy had gone to term Gracie would be just eight months old.

Cohen said Gracie’s doing well and making good progress, crediting her success in large part to the care she’s received at home, while Bongle and Sawyer praised the efforts, compassion, and care of the doctors and nurses at Aurora who doted on Gracie for months.

With Gracie home the family battles the threats unique to preemies, giving her special shots to ward off disease due to her weakened immune system, and taking her in for extra scrutiny to determine if she’s at risk for other problems common to premature babies.

Today she has chronic lung disease that the doctors expect her to outgrow and heart problems. Gracie trails a bit developmentally, but doctors anticipate she will catch up by kindergarten, as better procedures for early identification of problems and intervention make the hurdles she’ll face much more surmountable. But the best weapon they have arrived in a tiny package.

“She’s stubborn in her ways,” Moore says. “But it’s good. It’s good she had a girl, because girls fight harder.”

If you don’t believe that, you’ll have to take it up with the tiny little girl packed with a lot of fight.