A Game of Life
When Kari Jefferson came to Omaha to watch a high school basketball game with her husband, Jose, giving birth was probably one of the furthest things from her mind. And why not? She was only 23 weeks into her pregnancy with twins. She wasn’t due to give birth for another four months. It had only been a week since she had found out they were boys.
It was halftime in the basketball game between Creighton Prep and Lincoln High, where Jose was a football coach when those twin boys made their intentions very clear. Kari had left for the bathroom when her water broke.
The couple rushed to The Nebraska Medical Center, where Kari delivered the twins. The first was so impatient he was born while she was in the bathroom of the delivery room.
Tiny, thin and wrinkled, with flaps of skin for ears and other features still incomplete, each baby weighed 1 pound, 3 ounces – about the same as a jar of peanut butter.
The boys were immediately admitted to the hospital’s Newborn Intensive Care Unit (NICU), where Kari and Jose were told they had about a 15 percent chance for survival.
Luckily, no one told those two little boys.
The NICU (pronounced “nick-u” by those familiar with the unit) at The Nebraska Medical Center is a modern, 34-bed unit featuring private patient rooms, two twin rooms and dedicated in-room family areas. It’s nothing like one might expect from an intensive care unit. The walls are rounded and the floors carpeted. Noise is kept to a minimum, save for the occasional beeping of the electronic monitors, the voices of the attending nurses, and the occasional cry from one of the babies. The adjustable lighting can be cycled to replicate day and night rhythms.
It’s so comforting it’s almost womb-like.
“Research and experience indicate that babies born under a 28-week gestation period have adverse consequences when exposed to bright lights and loud noises,” says NICU Medical Director David Bolam, MD. “That is why we designed all lighting to be indirect and noise to be kept generally less than 70 decibels.”
The unit opened in November 2005 and occupies the top floor of the Hixson-Lied Center for Clinical Excellence. Between 25 and 30 babies are being cared for each day.
“Each baby, each family, has their own room,” says NICU Manager Chris Overfelt, RN. “That’s so important because families need to bond with the newborn in the NICU just like they would at home.”
The unit has a dedicated sibling area, a parent resource library, education room and lactation areas. Just outside the secure unit is a family and sibling play area with comfy chairs and a widescreen television. The nearby walls feature artwork by NICU “grads,” children who have gone on to use their creative minds and skills to serve as an inspiration to the parents of current NICU babies.
The new unit replaced the NICU that was built in 1979. “The plan back then was to duplicate what was being done nationally,” Dr. Bolam recalls. “It was a single large room with a series of modules for the babies. We had the same number of babies in a 5,000-square-foot room,” a room that is one-quarter the size of the current NICU.
“It was bright and open and visible because that’s what our knowledge levels suggested, based on the principles in place around the country,” Dr. Bolam says. “It was state-of-the-art. The art changed.”
Beating the Odds
A former track star and professional arena-league football player, Jose Jefferson knows all about beating the odds. When told of his sons’ slim likelihood of surviving, it didn’t bring forth the tears some might expect. “So much was happening all at once that we didn’t have the luxury of breaking down, ”says Jose. “Really, when I heard their chances, I kind of got irritated. I figured if somebody has to survive for there to be a 15 percent chance, it was going to be them.”
So unstable were their conditions that the parents were pressed to provide names so the twins could be baptized. Jonas was a form of Joseph, which is Jose in English. While Kari was experiencing contractions prior to the first birth, a friend suggested that she find a Bible and turn to the Book of Jeremiah, Chapter 29, verses 11-14:
“For I know well the plans I have in mind for you, says the Lord, plans for your welfare, not for woe! Plans to give you a future full of hope. When you call me, when you go to pray to me, I will listen to you. When you look for me, you will find me. Yes, when you seek me with all your heart, you will find me with you . . .”
“That’s where the name Jeremiah came from,” Jose says.
Kari spent the first five weeks at the hospital, dividing her time between the boys, leaving only to rest in her room at the Lied Transplant Center building.
“I don’t remember much from the first couple of months,” she says. “Just being in NICU, praying for my boys.”
Jose had to split his time between three cities: Lincoln and his coaching duties at Lincoln High, in Omaha where the boys were hospitalized, and Sioux City, where he served as head coach of the Sioux City Bandits indoor football team.
“I’d get up at 6 a.m. to get to Lincoln High by seven,” he recalls. “At noon, I’d check our house then leave to be in Omaha by one. I’d stay until four, then leave for Sioux City, where we’d practice from seven until nine. I’d grab a snack and then return home to Lincoln.”
At the hospital, the boys endured a series of medical issues that were addressed with medications and surgeries.
“The first week, Jonas had a bowel rupture,” Kari says, mentally ticking off the events. “Eight hours later, Jeremiah did the same. Then Jonas had a pulmonary hemorrhage, and Jeremiah had a staph and fungal infection. Jeremiah had five operations, and Jonas had six.”
Jose and Kari had to make incredibly difficult decisions. “They’d tell us that if they don’t have surgery, they could die,” Jose recalls, “and if they do have surgery, it could kill them.”
It was hard for the twins and for their parents, who often could do little more than watch and wait.
“For so long,” Kari says, “we couldn’t hug them. We couldn’t stroke them or pick them up. We couldn’t love them outside of their isolettes.
“So much of the time, Jonas just laid there. I didn’t hear him cry for the first two and one-half or three months. I kept hearing another baby in the unit crying, wondering if I was ever going to hear that.”
They did get to help with feedings, and eventually they could “kangaroo” the babies, holding them against their chests, bare skin to bare skin. Jose says he looked forward to those moments during his visits to the hospital.
“It was so comforting to be able to touch them,” he says, “that’s when I cat-napped.”
The new NICU is being viewed as a model by other hospitals, some of whom have visited or are planning to visit The Nebraska Medical Center and see the unit firsthand. The environment is impressive, as are the technological features – wireless communication, bedside electronic medical record documentation and family Internet access.
There are two procedure rooms in the unit for on-site surgery or extracorporeal membrane oxygenation (ECMO) procedures. In the case of newborn respiratory failure, ECMO involves the use of an artificial lung to put oxygen into the blood and send the blood to the body tissues. The hospital has had an experienced neonatal ECMO team in place for nearly 20 years.
The new unit was a goal of Dr. Bolam “for a number of years.”
Because the unit is still in its infancy, there is no clear-cut data yet available to document how it has affected outcomes. “We have some preliminary data we have looked at and we seem to have improved in most areas,” Dr. Bolam says.
That equates to greater hope for the parents of the tiniest of babies.
The Human Factor
The Jeffersons say they were overwhelmed by the support shown them. It came from family and friends. It came from strangers. And, it came from the doctors, nurses and other staff at The Nebraska Medical Center.
“We received a lot of love, prayers and support, some of it from people we didn’t even know,” Kari says. “So much love came from family and friends, and friends who have become family.”
A golf benefit was held last July to help them meet some of the mounting expenses. The Sioux City Bandits team presented a donation to The Nebraska Medical Center on the boys’ behalf. The twins’ story was told in area newspapers.
Although they care for dozens of babies each year, Donna Mason, RN, and Georgene Gottsch, RN, say they’re not likely to forget the Jefferson twins or the boys’ parents.
"Sometimes there is something about a family that touches your heart and brings you closer to them," says Mason, a nurse for 30 years and on staff at The Nebraska Medical Center for 25. "With the Jeffersons, we felt like a family."
In the medical center’s Newborn Intensive Care Unit (NICU), each nurse usually cares for two or three babies. They monitor vital signs, administer medications, handle the babies’ personal care and help teach the families about medical and physical care.
With the Jefferson twins, the boys were born so early, almost four months before their due date, that they required almost constant care and monitoring. Their complications were many and often demanded immediate action – and a high degree of professionalism from the twins’ nurses. "When that happens you think with your head, not your heart," Mason says. "There are still emotions involved, but everyone is so well-trained you just respond to the moment."
Gottsch, a nurse for 32 years, says she tries to distance herself emotionally from the NICU babies. It doesn’t always work.
"I let myself get really close about once a year," she says. "That’s about all my emotions can take. Sometimes, like with the Jeffersons, I fall really hard."
Mason says she prays for her NICU babies.
"I respect all cultures, religions and beliefs and encourage them to keep their faith no matter what form it takes, and I do pray for my babies and my families," she says. "I’m a strong believer in the power of prayer, and I wouldn’t be human if I didn’t get emotionally involved."
Mason once considered switching to adult intensive care until she realized she would miss the babies and the NICU. "We get such a wide variety of cases that it’s always challenging. In a sense, we’re caring for the whole family. I like that experience."
Plus, every now and then, they get to meet families like the Jeffersons.
"They were such strong people," she says. "Because of their strength together as husband and wife, they were totally devoted to those babies. They never lost their faith and trust in us. They never gave up hope."
And neither did their nurses.
Jose says his coaching duties in Lincoln and Sioux City brought him in contact with many people. “It was just amazing,” he says. “Their first question was never ‘Did you win or lose?’ but ‘How are the boys doing?’”
Besides the operations and infections, the boys suffered “brain bleeds,” or hemorrhaging within their skulls. On a grading scale of 0-4, with four being most severe, the boys were rated grade 2 on one side of their brains and grade 4 on the other.
“Not only were they fighting for their lives, we were told that if they did live, they would be physically and mentally challenged,” Jose says. “They also said there’d be a 90 percent chance of them developing cerebral palsy.”
It bothered the Jeffersons that some people used the term “normal” to describe the kind of lives most healthy children could anticipate.
“Normal is very individualized,” Kari says. “The effects have been more pronounced in Jonas, but he doesn’t know any difference. To him, he is normal. What is normal, anyway? Five fingers? Five toes? If that’s the case, then my babies are normal.”
No matter how much technology and medical equipment you have, there is always the human factor. At The Nebraska Medical Center’s NICU, that means the personal care provided by physicians, medical specialists, respiratory therapists and other staff – and the nurses.
“The nurses have so many combined years of experience,” says Dr. Bolam. “This is more than a job to them.”
The nurses’ opinions are important because of their experience and the amount of time they spend in direct contact with the babies and the parents.
“We have created a very nurse-friendly unit,” Dr. Bolam says. “It’s not the traditional relationship you see on TV. We sit down as a group and go over the patients’ progress and issues. Their input is a vital aspect of the decision-making process regarding patient care.”
Their experience also is a great comfort to the parents. “We get very close to our families,” says Marilyn Mainz, RN, who has been a part of the NICU since 1995 and a nurse for 28 years. “They get comfortable with us and sometimes ask us questions they might not otherwise ask.”
That closeness results in an emotional bond with the babies and families. Sometimes, the babies do not survive. Other times, often after stays lasting weeks and months, the babies reach the point where they are deemed healthy enough to be discharged. Either way, Mainz says, the nurses “have to let go.”
They’ll make plans to keep in touch and many do, she says, especially at holidays and at the annual NICU reunion tea.
“It’s hard to say goodbye, but really it’s very exciting for them to go home,” Mainz says, “and we’re tickled for them.”
Born March 4, 2006, Jeremiah and Jonas Jefferson were discharged from the NICU and allowed to go home a few days short of four months later. The date was June 29 – Kari’s original due date.
They had grown from fitting in the palm of their father’s hand to weighing close to five pounds each.
Once back in Lincoln, they spent the first year largely homebound to help strengthen their immune systems. Kari returned to work as a physician’s assistant in orthopedics. Jose left coaching to become director of group national accounts at a Lincoln investment firm. But a future in coaching still simmers in the back of his mind.
The boys are eating and growing and laughing and taking to exploring the house. During a recent visit, Jonas weighed 19 pounds and was still a bit more laid back than his brother. He’s had eye surgery and wears glasses. Jeremiah, at 19.8 pounds, was crawling everywhere, scooting on his stomach until he reached a wall or a piece of furniture, then rolling over and pushing off with his feet before taking off in another direction.
“These are two of the happiest babies you’ll ever meet,” Jose says. “They wake up smiling. We are so blessed with that.”
When told a few days before their unexpected birth that he was to be the father of twin boys, a flood of thoughts rushed through Jose’s mind. “I thought I had myself a quarterback and a wide receiver, or maybe a pitcher and a catcher, or at least half of a relay team,” he says.
The owner of several track and field records says he’s accepted the fact that the hurdles which lie ahead for his sons aren’t likely to come at a track meet. “It really puts sports in perspective,” says Jose. “I thought it would be devastating, but it really isn’t. I couldn’t care less if they ever play a down of football, as long as they can walk and talk and be happy.”
The Jeffersons have their sons. And they have hope.
“Who knows?” Jose says. “They might just shock us all.”
Kari smiles as she lifts a giggling Jeremiah into her arms. “They’ve already shocked us.”
crafted with care
Amid all the high-tech monitors and devices and impressive medical equipment in each baby’s room of the Newborn Intensive Care Unit (NICU) at The Nebraska Medical Center, one sight is the most memorable of all.
Atop each baby’s isolette or adorning each crib is a handmade baby quilt.
Crafted by individual volunteers, church groups and other various organizations, the beautiful, often intricate quilts add a sense of care and concern at a time when it’s needed the most. Though made by strangers to the families who receive them, the soft, warm quilts – some trimmed in satin and adorned with pastel Teddy bears or toys, bunnies or trains – are unquestionably the handiwork of someone’s loving mother or grandmother.
Betty Hammitt, 71, has been making quilts for more than 50 years, beginning with the one she made for her firstborn daughter, Deb (Tomek), who today serves as vice president of Human Resources at The Nebraska Medical Center.
“I quilt every day and have for the past 20 years,” Hammitt says proudly. “I love fabric. I love quilts. And there are so many patterns I haven’t done yet.”
A former nurse, Hammitt has donated a half dozen quilts to the NICU and is in the process of crafting six more. Her goal is to do one a month. Each baby quilt takes at least 25 hours of work, quite an effort but still a fraction of the months she might spend crafting a full-sized quilt.
Hammitt believes quilts are made to be given as gifts to family and friends, not to be sold. “Truth is, fabric today is expensive,” she says. “Unless you’re selling it as an art quilt, you’d never get back what you put into it.”
Hammitt didn’t choose The Nebraska Medical Center just because of her daughter’s affiliation, “If I didn’t make quilts for them, I’d do it for another NICU.”
“Those itty-bitty babies,” Hammitt says, “their mothers and their parents have such a hard road ahead. If I were them and someone brought me a quilt for my baby, I’d be overwhelmed with joy.”
A grandmother to 11 and great-grandmother to one, Hammitt realizes that NICU babies don’t always overcome their medical obstacles. Still, she wants her quilts to go to any NICU baby, not just the ones most likely to survive.
“Sometimes, they won’t have a baby to take home,” she says, “but they still have a quilt to take home.”
And the memory of the love put into each stitch.