Picture a full-size Butterfinger bar in your hand.
Now picture holding an infant who’s not even as long as that Butterfinger.
That gives you a sense of how tiny Braelynn Tracy was when she was born at Sanford USD Medical Center on Feb. 15, weighing 11½ ounces.
This week, Braelynn left the hospital — and her medical family — to go home with her parents, weighing a robust 8 pounds.
Braelynn is the smallest newborn to ever have “graduated” from the neonatal intensive care unit (NICU) at the Sioux Falls, South Dakota, hospital. Survival at her size is rare, but from the very beginning she established to her parents and caregivers that she was a fighter. Her first six months of life have shone as an example of hope and determination — and feistiness.
Unexpected pregnancy and delivery
Jacinda and John Tracy of Sheldon, Iowa, have been married nearly two years. They were not expecting the news last October that they were due to have a baby June 9.
“We were both shocked,” Jacinda said. But they were excited about growing their family.
Jacinda’s pregnancy was troubled by type 1 diabetes and high blood pressure, though. Her blood sugar level kept dropping, even after medication adjustments. One morning last December, it dropped so low that she lost consciousness and ended up at Sanford Sheldon Medical Center.
Doctors watched her closely, and she also had a five-day hospital stay in Sioux Falls during her pregnancy.
Then she had a prenatal appointment Feb. 14 in Sioux Falls, at about 23½ weeks along. There, her doctor told her she would be staying in the hospital for the next 10 days because blood flow was low, and she could have the baby any time.
She ended up delivering Braelynn via a C-section the next day.
A lot of uncertainty surrounds the delivery of such an early baby. The medical team prepared John and Jacinda to expect a flurry in the room. Being able to insert a breathing tube to help her tiny lungs would be one crucial step.
Odds weren’t in her favor
“It’s pretty rare to have a baby this small,” said one of Braelynn’s primary neonatologists, Jacquelyn Grev, M.D., who started caring for her at 3 days old. “We’re taking care of younger and younger babies nowadays with advances in our ability to provide them optimal care, and the survival of our smallest patients has been increasing over recent years. So she’s already on the younger side, and then she was small for her age.”
Dr. Grev would have expected her to weigh about 500 grams at her gestational age. Instead, she weighed 325 grams. “Under 400 grams, you would worry if our equipment would actually fit a baby. Would the breathing tube actually be too big for their airway or not? And thankfully for her, it fit.”
“If the breathing tube hadn’t fit, we wouldn’t have had a way to keep her alive,” Dr. Grev added. “And 10 years ago, I don’t think a baby of her size and age would have survived.”
“It went a lot smoother than what everyone had warned us it could go, so that was nice,” John recalled.
“She came out crying, and they went nice and slow and smooth over to the table, and (the breathing tube) got in really fast, and it was incredible. I was standing back there watching it, and it’s just unreal how much they can do and what they can do.”
“How everyone comes together,” Jacinda agreed.
“It was almost entertaining to watch full-sized hands, and there were like 10 or 12 people trying to help a baby that could fit in the palm of your hand,” John said, with a hint of the sense of calm and humor that Dr. Grev has admired in Braelynn’s parents throughout her NICU stay.
‘She’s always been a little feisty’
Looking back, Braelynn’s first cry right out of the womb gave a hint of her personality. She would reveal it further to her parents and caregivers during the next 191 days.
“She’s always been a little feisty, and they say that’s good,” John said. “They say that kind of helped her be a fighter — and a little orneriness.”
Braelynn has needed that spirit. Her size challenged her caregivers to supply her with the exact amounts of fluids, electrolytes and medicine she needed, Dr. Grev said, by following her labs and weights closely.
Braelynn also underwent six surgeries. One closed a hole in her aorta that typically closes naturally shortly after full-term babies are born. When she had two brain bleeds, one on each side, she had to have a shunt placed. When that became infected, a new shunt had to be placed. She also had to have eye surgery to help with development and surgery to insert a feeding tube.
John and Jacinda have had a lot to worry about — starting with Braelynn’s size at birth, when John could place his wedding ring around her arm, with plenty of room to spare.
They live an hour and 20 minutes away from Sioux Falls. With a February birth, the weather was often a factor in the beginning in deciding whether to stay at the hospital or go home to sleep, along with how well Braelynn was doing. “The first couple months, we were here all the time,” Jacinda said.
But they both had to go back to work, juggling their schedules so they could visit Braelynn as well. Jacinda’s maternity leave started when they brought Braelynn home from the NICU.
‘Always people surrounding us’
The surgeries were difficult for the couple. Jacinda says they “prayed like crazy every time.” Family and friends came to be with them those days, too.
“They’d come and sit with us, distract us, and we’d go get some food or something. But there was always people surrounding us,” John said.
John also appreciated the medical staff keeping them informed. He said they encouraged questions and made sure the couple understood the surgery processes, drawing pictures or printing off illustrations from the internet.
“The nurses prepping her before surgery would come over to give us reassuring words,” he said.
They were also called several times during a couple of surgeries with updates.
The NICU nursing staff became a big part of the family’s life. Besides their hands-on care for Braelynn, they used their creativity to mark special holidays during her stay by making scrapbook pages, including her miniature hand and footprints. And many signed cards and celebrated her “graduation” from the NICU with gifts.
“It’s enough for us that they just do the job that they get paid for, but then they go above and beyond and really let you know that they are here for you and your daughter,” John said.
Jacinda appreciated getting close to the nurses and having them to talk to, especially when she came up alone to visit Braelynn. “To get extra snuggles, they stay later,” Jacinda added.
One big job Braelynn had in the NICU was to gain weight. It was slow going at first. And she made it clear she wasn’t happy about her orogastric (OG) tube, which initially delivered her feedings through her mouth into her stomach.
“She would pull it out herself a few times, and they’d have to put it back in,” Jacinda said.
But a month after she was born, she had grown to the size of a Butterfinger and a half.
Now, she weighs more than 10 times her birth weight. She has a feeding tube that will keep her parents busy five times a day, for an hour and 15 minutes each time. She also drinks a couple of bottles of milk each day.
‘A new, new normal’
John and Jacinda didn’t really have a timeline for when they thought they’d get to bring Braelynn home. She had to meet certain criteria first, and they’d settled into this “new normal” life of visiting her in the NICU, working at their jobs and replacing everything, down to plaster and lath, in a renovation of their house.
Suddenly, though, they were being told she might be ready in a couple of weeks. On one hand, they realized they really needed to get some stuff done first.
“She’s not that ready, so we’ve probably got more time than what they’re telling us,” John thought at the time. “And then it turned out I was wrong. Because Braelynn said, ‘Nope, I’m ready to go. Let’s start checking off these boxes.’ Within a couple weeks, she had them all checked off.”
Over the weekend, they spent a couple of nights at the NICU to get the hang of all of her overnight care, including a drip that starts at 11 p.m. And then they were prepared to take their baby girl out of the hospital and into the rest of her life.
“It’ll be nice to know that we’re getting out of here, and at the same time, it’ll be hard to leave a lot of the people that you’ve gotten pretty close with,” John said. “It’ll be nice to know we’re on our own. At the same time, we’ll be on our own.”
“What are we going to do with all of our time not being here?” Jacinda joked.
“This really has become the new normal for the last six months, so now we gotta get into a new, new normal,” John said. That will include follow-up appointments, as well as physical therapy to help Braelynn’s muscles.
‘There’s always hope’
It’s clear Dr. Grev will not forget her smallest patient or her family after she leaves. “Braelynn is a fighter, and she has a personality. … It really is our pleasure to be a part of her story and to help her get better and go home.”
“Some of the obstacles she has had, just seeing this family handle everything with grace and eloquence, knowing what outcomes could be or how her future may be — where she may have issues — they’ll just handle it in stride and say, ‘Well, she’s our baby, we love her, and we’ll get her to the best of her abilities,” Dr. Grev added.
“It’s an example that as much as the odds may be against a baby surviving and getting out of the NICU, that there’s always hope. It is good to be reminded of this hope and see an example of a baby who’s overcome a lot of obstacles and is doing well.”
The Tracy family won’t forget the NICU, either. They plan to bring Braelynn back for visits during trips for appointments.
“That’s something we want to do, just to keep them in the loop of how she’s doing because they’ve cared for her for so long,” John said.
“No one wants to be here, but we feel blessed that this place is here and that they know what they know.”
Someday, John and Jacinda will tell Braelynn about just how unusual she is.
“I think it’ll just be fun for her to know exactly what she all overcame,” John said. “It’ll be nice just to tell her her story and watch her eyes in amazement on how unreal it’ll be, even to her.”
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