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Far from care: Life with a sick baby in a rural state

It’s not hard for them to stay awake while most everyone else sleeps. What could happen is enough.

The home nursery was dark on a recent evening other than the glow from the machine keeping the Samuelsons’ newborn alive. Bozeman’s late August heat had arrived and the equipment pumping air into baby Logan’s lungs added to it.

Tyler Samuelson rocked in a chair pointed toward his son’s crib. It was a half hour before 11 p.m. and he'd just started his night shift. His two oldest, 3 and 7, slept in bunk beds in the next room. His wife, Jera, was in their room down the hall.

The ventilator’s rhythmic push was the only sound. It was white noise until its base became an alarm — a series of quick beeps — when Logan’s pulse or heartbeat or intake of air changed.

Jera heard each beep without really knowing whether she was awake.

It could be that Logan kicked his feet and bumped his pulse oximeter. Or maybe he sneezed and let out air too fast. Or he stopped breathing and needs CPR.

Tyler would call if it was the third. Otherwise, she’d sleep until 4 a.m., when it was her turn in the nursery. 

That’s when Tyler, 30, went to work, the first of his two shifts in the day as a lab tech. He’d be home in time for Jera, 29, to go to work as a health inspector from 8 a.m. to 5 p.m. Then they’d rotate again.

———

Logan has two birthdays: the day he was expected — Feb. 11, 2019 — and the day he arrived — Oct. 26, 2018.

He wasn’t finished growing.

So when people ask how old Logan is, his mom answers “10 months actual and a little over 6 months adjusted.”

The difference hints at an emergency flight to Missoula after Jera realized while 24 weeks pregnant her bleeding and cramps wouldn’t stop.

It explains four hospitals in three states, 21 surgeries in nine months and 278 days in intensive care.

It’s why it would be unfair to compare Logan with any other 10-month-old.

There’s never been more options to care for babies like Logan who were born way too soon. The services just aren’t in Montana and may never be.

As Bozeman Health Pediatrician Pepper Henyon put it, “Montana is a big state with a sparse population.”

“In order to really support subspecialists, you really have to have a big population base, otherwise it just financially wouldn’t work,” Henyon said. 

The Samuelsons expected to travel for ongoing treatment long after their emergency delivery. They didn’t know how hard it would be to find basic care at home.

Before finding their doctor, Jera remembers six phone calls to primary care providers who said they weren’t a good fit for Logan. Four clinics never called back.

“I wasn’t expecting to go to them when we have a big issue, we know that would be a specialty group,” she said. “We needed someone for vaccines, checking his growth, normal kid things.”

The parents counted 11 rejection letters from home nursing companies that said they couldn’t take Logan as a client because of his medical record. They still haven’t found a nurse comfortable staying with Logan alone.

“I grew up in Bozeman,” Tyler said. “You never think of it as rural until you need specialized care. Then you realize how rural it is.”

So they split a 24-hour shift, rotating between Logan, work and sleep.

— — —

Half a million babies born in the U.S. arrive early each year.

Only 50,000 of those are micro-preemies like Logan — who was delivered at 1 pound, 10 ounces. The earlier a baby arrives, the higher their risk of future disability and health issues.

“We won’t know what it means for Logan until he starts missing milestones,” Jera said, adding he also has brain abnormalities doctors saw before he was born.

Logan’s ventilator pumps air through a trach tube in his throat, which his parents also use to clear anything from his airway.

There’s another tube that delivers baby formula to Logan’s stomach. A button on his belly glows in the dark so it’s easy to find at night.

It seems a bit like magic to his siblings — their baby brother glows.

Logan has blue-gray eyes that lock with his mom’s. The forced air of his ventilator means he can’t make a lot of sound, but his face creases into a laugh when his dad sings along to his crib mobile and leans over to touch foreheads.

“Day to day, he’s a super easy baby,” Tyler said. “But when things go wrong, they potentially would go wrong really quick.”

After his delivery, Logan went into an incubator. It was his best chance to grow. It was five weeks before Jera and Tyler got to hold him.

It was hard to describe to their two kids at home how small Logan was, so Tyler slid his wedding band on Logan’s leg and took a picture.

The second time they held Logan was at Seattle Children’s Hospital, just before his first brain surgery the week of Christmas. Later that day, Logan’s nurses handed Jera a small bag with some of Logan’s hair.

“I realized what they were handing me was Logan’s first haircut,” Jera said. “He wasn’t full term, and he got his first haircut from a neurosurgeon.”

“And it wasn’t even a good haircut,” Tyler laughed.

“They only cut one side of his head,” Jera said.

The surgeries continued as doctors took turns prioritizing organs.

In Seattle, Tyler and Jera received a binder to study tracheostomy care. Its cover included a roadmap, starting with “I can describe why my child needs a trach” and ending with “My home nurses have learned about my child’s care.”

In Portland, they were tested on whether they could change a trach and how to resuscitate Logan without a machine. Tyler’s parents worked through the same demonstrations to become secondary caregivers before the family could return to Montana.

“They kept telling us before we came home, ‘people will be intimidated,’” Jera added.

Jera said the first independent nurse who came to their house flinched when Logan’s monitor sounded. The nurse said she didn’t think it would work out.

The Samuelsons talked about moving somewhere Logan could get more care. But that would mean losing their employer-based health insurance, which helps pay for the machines keeping Logan alive.

As far as they’ve counted, the hospital bills have neared $9 million and more arrive in the mail each week.

Tyler said he could leave Bozeman to find work and have the family join him when he’s established.

“But that goes from two people splitting 24-hour shifts down to one,” he said. “So as crap as our health care is out here, we’re fairly stuck.”

— — —

On a recent afternoon, Bozeman Health Chief Advancement Officer Jason Smith pointed toward a building on the hospital's campus with a boarded window on the top floor.

That’s where southwest Montana's first neonatal intensive care unit and women's and children's tower will go. Its construction is expected to end next year.

“Our initial inspiration around taking this big step forward was driven by a pretty surprising number of local families who find themselves having to travel when they should be home,” Smith said.

He said the unit will be a regional resource, “serving a much wider population base than just Bozeman.”

The unit will start at level two, which means it can care for some infants recovering from an illness and babies born up to nearly two months early. Logan was born almost four months early. 

Neonatologist Diane Warner said the Samuelsons' struggle, while rare, isn’t unique to Montana.

“I think it’s lack of resources and the intimidation of how incredibly ill the baby can be,” Warner said.

She said the hope is to bring more pediatric subspecialty care to the area and, if not full-time, through more visiting specialists. 

Bozeman Health Deaconess Hospital president Kathryn Bertany said the expansion will be a springboard to increase the system's pediatric pharmacy expertise along with respiratory, speech and physical therapies.

But it’s unlikely the new unit would serve babies like Logan, she said.

“There are certain complex, very preterm, very low-weight infants who get the best care by being in a high-volume children’s hospital setting,” Bertany said. “...In a rural community like ours, that’s part of what we need to recognize, which can we do safely here and which is the level of care where you need more specialists, more expertise than we could ever maintain.”

She said when that's the reality, the hospital should help coordinate care for families who have to go elsewhere.

— — —

There’s a banner over Logan’s crib with his name between the day he was born and the day he came home: July 30, 2019.

“Nurses made that, but we added the ‘home,’” Tyler said. “We carried that with us everywhere because we never knew when it would happen.”

Tuesday night, Jera crawled into the bunk beds for story time with Kendal, 7, and Lucas, 3.

Not far from the bed was a babydoll with a hole in its throat filled by an old trach. Jera and Tyler made it to teach the kids about Logan before he came home.

“I heard them the other day ask who was going to feed the baby,” Jera said. “They fed their doll the same way we feed Logan. It’s the little things. I never expected my children would be playing that. I’m proud at the same time.”

“Never expected” is about as negative as Jera gets when she describes the family’s new normal. She never expected she would burp her baby with a machine. She never expected she'd ask people whether they were vaccinated before they visited.  

In the kitchen, Tyler made Logan’s baby formula and poured it into the drip bag that would hang next to the crib through the night.

“Growth is his only way to get him off having to use that vent,” Tyler said. “So for him, one of the biggest things is he gets a lot of nutrition. But eating is tough, his stomach hasn’t had time to expand.”

There has been progress.

Logan is now 15 pounds and 15 ounces. He tries to hold up his head and rollover, though that can get scary with all he's attached to.

He’s also learning how to hold his breath long enough to force his own sound — which comes out like a harsh quack and seems to startle Logan when it works.

— — —

The Samuelsons have a white box equivalent to most “baby’s first” photo albums.

Inside, there’s a diaper smaller than an adult’s palm. There’s Logan’s first blood pressure cuff, which fits Jera’s pinky, and his second which could wrap around a few fingers. There’s his first Halloween outfit, a hatching duckling costume that Tyler and Jera made and laid over him in the incubator.

“These little things, not only show huge milestones for him — that he’s growing,” Jera said. “But if we would have lost him, for a long time these were the only things we had of him.”

They imagine a time when Logan can breathe on his own which would also mean they could hear his laugh. They hope Logan will one day swallow his food instead of needing tubes, no matter how cool his glowing tummy is.

For now, the dream is they find a home nurse who could cover a day shift while they work. That still means splitting nights indefinitely, but they would at least have steady hours to make money.

Thursday morning, Logan’s siblings stepped on the stool by his crib that they typically use to kiss him before bedtime.

He was headed to Missoula for his third appointment since returning home.

Later that day, Jera and Tyler began the 45-minute process of loading Logan into the van, walking no more than 5 feet apart as one held him and the other his equipment. Logan’s eyes followed his mom as she organized the tubes between the van’s back seats, where she’d stay through the trip.

Soon after they arrived at the hospital, they learned there was a new tear in the wall of Logan’s stomach.

They started preparing for the trip to Seattle for Logan’s 22nd surgery.

Katheryn Houghton can be reached at khoughton@dailychronicle.com or at 582-2628. Follow her on Twitter @K_Hought. 

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