By MAGGIE MENDERSKI
Herald-Whig Staff Writer
Andy and Kelsea Hoskins prayed their newborn son would scream.
Ultrasounds had shown the child would be born with his large intestine and a portion of his liver outside of his body. As the weeks before the birth neared, the list of requests the couple -- both teachers for the Quincy School District -- put before their God and their church family grew just as rapidly as the little boy in Kelsea's womb.
They didn't just want their first baby to have all his fingers and toes. They also asked for their son's lungs to breathe on their own. They prayed Kelsea could breast feed and that the growing list of insurance claims would be filed quickly.
Most of all, they asked that their son survive birth.
Hayden Hoskins finally arrived through surgical birth at Children's Hospital in St. Louis at 3:54 p.m. on Jan. 18. He took his first breath on his own and cried, and his parents smiled.
"It was the best sound we've ever heard," Kelsea said.
The nurses rushed Hayden off to the hospital's neonatal intensive care unit. It was odd to see part of his body was encased in a pouch outside his stomach, but everything else seemed to be going well.
Andy and Kelsea checked that first of many answered prayers off the list.
As Hayden continued to exceed the doctors' expectations, the checkmarks kept coming.
Doctors at Quincy Medical Group first noticed complications with Hayden during a routine ultrasound on Sept. 17. Afterward, Andy went home and did exactly what the doctors told him not to do.
The photos showed infants with bloated yellow-green orbs the size of softballs protruding from their stomachs. The websites Andy scrolled through associated Hayden's condition with chromosomal deficiencies, kidney problems, heart abnormalities and stillbirth. That information haunted Andy and Kelsea, who had suffered a miscarriage in February 2012.
Five months later, Hayden slept peacefully at Children's Hospital. The exterior sac that held his large intestine and part of his liver bobbed with each breath, and the little boy rested his walnut-sized hand on the yellow orb. To strangers, the sac of organs looks out of place, but the abnormality is all Hayden has known. The monitor above him indicated that even though his organs had been misplaced, they still kept the little boy alive.
The Centers for Disease Control and Prevention estimates one in every 5,386 babies are born with the defect. These orbs, or omphaloceles, form when the umbilical rings fail to close around the organs. A study published in the American Journal of Medical Genetics in May 2008 showed that of 86 patients with omphaloceles observed between 1979 and 2003, 64 of them had associated malformations similar to the ones Andy had read about online.
Dr. Brad Warner, a specialist in pediatric surgery at Children's Hospital and Hayden's primary doctor, estimated he sees four infants a year with omphaloceles.
"The defect itself is not a life-threatening sort of issue," Warner said. "It's really all the other things that are associated with it."
He said with proper care and treatment, his team can surgically correct Hayden's defect, but operating would have to wait. It would take a year for the stomach cavity to be large enough to tuck the organs inside the child's body.
However, the little boy escaped the long list of potential health problems associated with his omphalocele. Warner anticipates Hayden will grow up normally with no memory of the abnormality except for a incision scar spanning his chest cavity, a surgically constructed belly button and the stories his family will tell him.
Andy and Kelsea never prayed for a perfect little boy. They only wanted a child to love.
When Bob Cowman, pastor of Columbus Road Baptist Church, asked Kelsea for a list of intentions, she felt uncomfortable at first. Throughout the pregnancy, Andy and Kelsea never asked why God had given their son an abnormality. They only questioned how to help their son cope with it. They only asked for strength.
"There's lots of prayers going out," Kelsea said. "And lots of prayers being answered. One at a time."
Hayden would enter the world ushered by the prayers of a whole community.
Just as Andy had punched "omphalocele" into the Google search box, the couple pounded the keyboard asking for God's favor on their child and their family. Cowman took their 26 requests and turned it into a pamphlet for Columbus Road congregation. Among the requests were:
• Hayden's heart will be healthy, without defects.
• Emotional endurance for Andy, Kelsea and all other family members and friends. Patience with one another.
• Hayden will cry right when he is born (confirmation that his lungs are working).
• Hayden's omphalocele (the membrane that holds his organs) will not rupture.
• Hayden's blood pressure will be stable at birth."
Cowman had gathered 90 members of the congregation for a prayer service to pray specifically for each intention. The attendants promised to individually pray for Hayden every day until his birth.
"(Andy and Kelsea) saw God work moment by moment, all the way down to the medical team and doctors they were able to work with," Cowman said.
Andy kept a worn, spiral-bound notebook full of questions at Hayden's bedside at Children's Hospital. In the months since Hayden's diagnosis, he's finished one log and started a second.
The questions began in September when they muddled through how to pronounce their son's defect (try ohm-FAHL-oh-seal). It escalated to the proper ways to wrap Hayden's swelled stomach with gauze and bandages. While most parents take turns changing an infant's diapers, Andy and Kelsea use teamwork to change two dressings. Kelsea supports the extra organs just as naturally as she'd hold Hayden's head, but they still need to bandage the orb.
A wooden dresser houses the cloth diapers, while a recently purchased plastic bin holds a collection of gauzes and bandages.
Hayden fussed during the first few wrappings, but eventually he adapted to the ritual just as his parents embraced theirs.
"I'm totally capable," Kelsea said. "I'd rather have him with us. We know we can take care of him.
"It's all part of God's plan."
Andy kept a playbook for paying for God's plan, too.
As spiral notebooks held their questions, another binder bound together the bills. Even with insurance, paying for a child with an abnormality and a four-week stay in the NICU hiked up the cost of the average newborn.
As doctors and nurses swarmed the small child at the hospital, and occupational therapists, physical therapists and nurses now funnel in and out of the Hoskins' home in Quincy, the price tag of care continued to grow.
The omphalocele and the care Hayden needs eventually will shrink. In the meantime, so will the family's income.
Kelsea hasn't taught her class at Baldwin Intermediate School since before Christmas break. Andy spent seven weeks helping care for Hayden with Kelsea before returning to his classes at Quincy Junior High School in early March. Kelsea won't return to her job this year.
Growing medical bills have forced Andy and Kelsea to cut back on luxuries. They've swapped reality TV and dinners on the town for each other's company and discounted groceries. Finding new homes for their cats, Slice and Killer, could save $40 a month on cat food, but it hasn't come to that yet. Andy didn't want to think about parting with the family dog, Tucker.
On the second day home, Kelsea sat in the glider holding Hayden when the doorbell rang. Andy accepted a Pizza Hut gift card from a neighbor. In fact, neighbors and church members had started a rotation of gift cards and meals as the new parents settled back into their home and life away from the NICU.
Leaving Children's Hospital meant leaving a staff of trained nurses and a monitor that ensured Hayden was still breathing. Now at home, Kelsea would sit up with Hayden all night as he struggled to keep his pacifier. His sucking reflex hadn't fully developed, and he fussed every time the nipple fell from his mouth.
Earlier that afternoon as Andy completed errands, he called and offered Kelsea coffee. Someone had provided a gift card to Starbucks.
"I told him to make it a Venti," she said.
She hadn't slept, but it had been more difficult before. Each night before they left Children's Hospital for the Ronald McDonald House 10 miles away, they raised the blue gate on Hayden's NICU crib. They tried to sneak out as he slept.
They hated leaving him at the hospital, but they didn't need to now ... even if it meant Kelsea needed coffee.
As Kelsea carried Hayden, the memory of her miscarriage and that fear of stillbirth and abnormalities laced their prayers and plans. The couple knew the statistics and received a positive outlook from the doctors, but the question of a live birth still remained.
On the night they painted the nursery, Kelsea cried. If she delivered a stillborn baby, she wasn't sure she could face the empty nursery without her child.
"I just had a total meltdown," she said. "Is an empty room going to be any less lonely than a painted room?"
She prayed for strength. They painted the room.
"You'd allow yourself to have those times where you just had to have a moment," Kelsea said. "Sometimes those moments turned into a full night."
A month after his birth, Kelsea gingerly set her son on the changing table in the deep blue nursery in their Quincy home. Hayden's omphalocele kept his diaper from staying in place.
"His diapers don't fit really well, because they have to go underneath (his omphalocele)," Kelsea said. "He's got kind of a permanent plumber's crack."
The room was stocked with diapers, wet wipes and a new leather glider for rocking their son to sleep.
Months before, Kelsea had cried as she made the decision to return Hayden's soccer-themed bedding for a less expensive jungle print theme. While they'd purchased some of the decor, they couldn't afford the remainder.
Andy had coached freshman and sophomore soccer for Quincy High School, so a sports theme seemed obvious to Kelsea. She'd already spelled out Hayden's name with sports craft paper and wooden letters to hang over the crib, but the art project would have to be set aside.
However, before Kelsea returned the soccer-themed bedding, friends generously paid for the remainder of it.
As Andy and Kelsea have adapted to parenthood, they've also adapted traditional caring methods to suit their son's needs.
Andy believed he could care for his son's omphalocele, but he wasn't sure a standard car seat could. The sac protruding from Hayden's body would bump, rub and potentially not fit into a car seat.
"The only time I ever truly got upset was when I was reading about him not coming home in a regular car seat," Andy said.
Just as Kelsea had struggled through her moment while painting the nursery, Andy worked through his.
That difference was overshadowed by the joy of leaving the hospital for their new normal.
Life didn't become more difficult, just different.
"We have to get creative to help him," Andy said.
A physical therapist at Children's Hospital tucked foam pads around the straps to hold Hayden and his omphalocele securely in place in the car seat. Hayden didn't seem to notice the adjustment. He slept during the first trip home from St. Louis.
The car seat became the first of many tweaks. Sleeping also has required ingenuity. His top-heavy tummy tilts the little boy to his side. Andy and Kelsea are fearful of sudden infant death syndrome (SIDS), which is more prevalent in babies who sleep on their bellies. Before they leave Hayden in his crib, they tuck a neck warmer across his body to keep the little boy from rolling on his side.
Infants traditionally strengthen their neck muscles by lying on their stomachs. Hayden needs more assistance.
The physical therapist devised a mat similar to what pregnant women lay on during massages. A foam mat with a doughnut-like hole cut from the center allows Hayden to use his neck muscles even with the omphalocele. Kelsea tucked a jungle print blanket over the foam before resting Hayden's omphalocele in the hole. Beneath the blanket rested several spare pieces of foam. As the bandage-wrapped orb shrinks, Kelsea can adjust the hole to match.
A dresser in Hayden's nursery is stocked with oversized onesies. The soft colors and fun patterns look just like any other infant's. They're newborn size, but Hayden looks more premature, weighing 6 pounds, 2 ounces at birth. The cartoon dog faces covering the footies of his onesie hung loosely around his feet, but the outfit's zipper curved better over Hayden's stomach. The larger newborn clothes actually fit him better.
As his mother concealed the pajamas in a swaddling blanket, Hayden opened his striking eyes. He didn't fuss and could have cared less that the footies didn't fit.
His mother's look of content showed she didn't either.
As Hayden approaches 3 months old, the joyful, faith-filled memories his birth has created have replaced the initially grim prognosis.
When the nurses at Children's Hospital unplugged and unhooked Hayden from the machines that kept him alive, Kelsea held Hayden for the first time 48 hours after his birth.
Now, Hayden's omphalocele is just as much a part of him as a toenail.
When he's swaddled in his mother's arms, he's not a baby with an abnormality. Rather, he's a gift, and Andy and Kelsea feel blessed to care for him.
They still remain watchful of his swelled stomach, but they also notice his personality, his habits and his features.
He fusses at night. He forms his tiny mouth into a circle and pushes his tongue through. He looks just like his father.
Kelsea hopes her son has inherited her invisible traits, but features like Hayden's eyesight and organizational skills won't show until he ages.
The birth has strengthened Andy and Kelsea's faith. They look forward to taking him to church and passing on that love of God's plan. Until Hayden's immune system is strong enough for public outings, however, they're building that faith for him in the home.
From the first note of concern with the ultrasound to wrapping the omphalocele in their Quincy home, the couple believes "If he leads you to it, he will lead you through it."
That patience and trust resonates just above the changing table where they wrap their son's defect each day.
A handmade needle-pointed picture from a family member shows a small child standing in a disheveled mess of clothing and reads, "Please be patient. God isn't done with me yet."