Each of Lauri Gilliland’s three children were big babies.
None of them born early.
This time, she expected twin boys in late May.
At about six months, her son and two daughters would poke her belly to feel the babies move. And then one day, one of the babies was too still. Gilliland called her doctor right away.
“When I came in, I thought they’d just check his heart rate and send me home,” she said. “I knew Arby’s was down the street, and I was looking forward to getting something when I left. You know? You always worry you over-think things.”
Instead the doctors moved quickly. Within hours they had delivered her twins boys, Liam and Elijah, by cesarean section at Deaconess Hospital. It was March 22, and they were nine weeks early.
Today she will spend part of Mother’s Day in the hospital’s neonatal intensive care unit – the only home her baby boys have had since birth.
They’ll be there until at least May 25, their due date, and are developing well.
“It’s a blessing how early they were, and no real problems,” Gilliland said.
One in 8 babies born prematurely
Each year, 1 in 8 babies are born prematurely – 36 weeks or sooner – in the United States, according to the U.S. Centers for Disease Control and Prevention. A child can survive after being born as early as 23 weeks; about the same time he or she would start to sense movement in the womb, such as their mother dancing.
The length of time a premature baby stays in a neonatal unit depends on how early they’re born. A baby born two months early could remain hospitalized for 65 days. The average cost is about $76,700 with minimal complications, according to a national study by the Agency for Healthcare Research and Quality.
“We have to look at it this way: 90 percent of these babies are going to go home,” said Ann Seaburg, Deaconess’ senior director of women’s services and NICU. “Their lives just started out rough.”
Some of the babies are tiny, weighing about a pound and attached to machines that help them breathe, monitor their hearts and push nutrients into their bodies.
Doctors and nurses do what they can to prevent premature births. They discourage smoking, drinking or drug use during pregnancy. They put women on bed rest.
Yet there is no one common cause for premature births. More and more research points to myriad scenarios, ranging from the age of fathers to genetics, stress, chronic disease such as diabetes and carrying multiple babies.
Liam and Elijah coo while they sleep; they rarely cry at this age. A nurse sits near their special bassinets 24 hours a day to monitor them.
“I love the sounds they make right now,” Gilliland says softly. She often flashes back to her boys’ birth. “It was amazing just to see them. I thought since they were early, they’d be skin and bones, but they were more chunky, about 3 1/2 pounds.”
It was Elijah who prompted concerns. Doctors determined there was a blood clot in his umbilical vein that prevented him from getting nutrients and led to an irregular heartbeat.
Elijah now weighs 5 pounds, 9 ounces and stretches 17 3/4 inches. He has a thick crop of brown hair.
Liam weighs 6 pounds and is 18 inches long. He’s impatient, even fussy.
The day the twins were born, Gilliland and her husband, Chris, also learned Elijah has Down syndrome.
“I don’t know what I would have done if my husband hadn’t been here,” she said. “It was a lot of information to take in all at once. But he grew up with someone who had Down syndrome, so he was familiar with it.”
The twins’ long stay at Deaconess has given the couple time to learn about the diagnosis before taking their son home.
She adds, “It’s amazing to think about that day now.”
Three NICUs in the area
Since Gilliland’s other babies were born without complications, this is her first experience in a neonatal unit. “You hear stories about the NICU, but it’s scary when you see them in the little incubators hooked up to all the equipment,” she said.
Deaconess’ 38-bed neonatal intensive care unit, or NICU, is one of three in the region that helps premature and sick newborns overcome deficits and reach a physical development level consistent with a full-term, healthy birth.
Sacred Heart Children’s Hospital has the largest such unit, a 61-bed NICU that offers the highest level of specialized neonatal care outside of Seattle.
Kootenai Health in Coeur d’Alene offers a six-bed unit, but has limited care abilities. The unit can help babies born as early as 32 weeks or as light as 4 pounds. Newborns needing a higher level of care are often sent to one of the Spokane hospitals, where some 1,200 premature babies are cared for each year.
A hospital’s care level is based on the level of expertise in that facility – specialists and subspecialists.
Thirty years ago, chances were slim that a baby born 10 weeks early could survive. Today, advances in medicine, neonatal care and technology have improved survival rates and quality of life.
A premature baby born at 26 weeks has an 80 percent survival rate, according to the March of Dimes.
Advances in care include the administration of surfactants, a substance developed by the fetus at about 26 weeks that enables them to breathe. This crucial period of lung development is among the most common complications in early births, said Patrice Sweeny, Deaconess’ NICU director.Seaburg believes experience and the ability to draw on the expertise from a network of providers in the United States and around the world makes more difference than technology.
“We’re not an island anymore,” she said.
Each neonatal intensive care unit in a hospital has a team of specialists who nurture the babies to health and anticipate future complications, including physicians, nurses, respiratory therapists, speech therapists, dietitians, occupational and physical therapists, surgeons and social workers.
Speech therapists, for example, have the critical task of teaching the babies how to eat, swallow and suck in coordination with breathing.
“It’s an art to feed a baby when they are learning to eat,” Sweeny said.
Social workers are making sure moms and dads are connected with all the support services they might need when they go home.
“It’s not just whether they survive,” said Dr. Kathleen Webb, Kootenai Health’s director of neonatology. “It’s how well they thrive.”
Parents increasingly part of NICU care
Incorporating parents into the premature babies’ care more often is a new emphasis in hospitals across the country.
“Parents can be here 24 / 7 if they want to,” said Jean Kelleher, nurse manager for Sacred Heart’s NICU.
Kootenai Health is adding rooms to its NICU unit that will include a comfortable place for mothers to sleep. The addition is part of a $57 million expansion announced earlier this year, which includes doubling its NICU.
Gilliland visits Deaconess twice a day. She thinks it’s silly to be excited to change her boys’ diapers, but she can’t help it.
She also appreciates the opportunity to visit with other parents because it’s a built-in support group.
Medical professionals are always learning new techniques to help the delicate newborns.
Baby massage is one of the newest methods used in NICUs. Occupational and physical therapists in the hospital are now teaching the technique to parents.
The right touch soothes the baby, reduces crying, helps with sleep and may even relieve constipation.
A therapy called kangaroo care – skin-to-skin contact with a caregiver – is also becoming more common.
“We are encouraging that more and more because of how beneficial it is for the baby and mom,” Webb said.
The contact also helps mothers produce milk.
The most severe cases that go to Sacred Heart include babies who suffer brain injuries. Babies now can go through hypothermia treatment, called the cooling method, Kelleher said. The infant’s body temperature is lowered to 92.3 degrees for 72 hours to reduce or reverse damage. The babies have to be at least 34 weeks or older.
Sacred Heart Children’s Hospital is among a relatively small number of hospitals that have extracorporeal life support machines, which allow medical professionals to put the infants on heart and lung bypass, sustaining breathing and circulation, long enough to stabilize them.
“The whole focus of neonatal medicine is how can we figure out how to get you what you missed out on,” Kelleher said.
Gilliland is grateful that the twins are doing so well. And yet there have been challenges.
“It’s been a couple steps forward, one step backward,” she said. Liam and Elijah were off oxygen for two weeks and had to go back on because they were suffering from sleep apnea.
Problems have prevented their mother from holding the babies some days when she’s visited. “That’s really hard,” she said.
‘You don’t want the parents to miss out’
Inside their bassinets Elijah and Liam are developing their own personalities.
“Liam seems more annoyed to be here,” Gilliland said. “Elijah is really laid back.”
The boys were born one minute apart, a detail twins often use to lord over their sibling. Gilliland doesn’t know if that will be the case with these twins: “I keep hoping they will be competitive, like who is going to get off oxygen first.”
Back at home, their father is still working on the boys’ room. The theme is “Star Wars,” his favorite movie.
Lauri Gilliland knows this Mother’s Day will be different from all the others. She’ll spend half of it with Liam and Elijah.
Her other children – 10-year-old Jonathan, 7-year-old Kaitlyn and 3-year-old Brianna – will make sure she doesn’t have to cook or clean.
Deaconess’ staff will be sure to mark the holiday for Gilliland and her twins.
Staff preserves anything that might be a part of a baby book, such as a lock of hair, a hospital bracelet, measurements and pictures.
Today, pictures of moms and their children will be taken to add to the baby book collection.
“This child is starting life, and you don’t want the parents to miss out,” Seaburg said. “We don’t want them to be the only parents without a baby book.”