Coming home is just the first step By FELICE J. FREYER
Providence Journal medical writer
First of three parts.
It's obvious that a baby girl is about to come home to this tidy Pawtucket house. Every room stands ready, equipped in plush and pastel: upstairs, the crib with the Winnie the Pooh mobile, the cradle and the changing table; downstairs, the swing, the baby seat with flower-shaped headrest, plus two wicker baskets neatly stacked with toys.
But for the child of Kimberly and Joseph Grant, all that stuff is just the beginning.
On an afternoon last January, a white truck pulls up. Kim Grant is already at the door, leaning out to greet the driver, Thomas Riessen. Over the next hour, Riessen hauls in several brown cartons, a laptop-sized electronic device, a couple of poles with hooked extensions and various hand-held devices wrapped in plastic.
Then, backing through the front entrance, Riessen wheels in a hand truck with a shiny silver tank about the height of a washing machine and half as wide. He heads for the stairway and, step by step, aided by a motor on the hand truck, he pulls the tank to the second floor. He deposits the hulking cylinder next to the crib, setting Eeyore and Tigger aquiver on the mobile. He wheels in a second tank and gently lowers it to the floor in the downstairs hallway.
A technician wheels an oxygen tank up to the baby's room as Kim Grant readies the house for Teagan's homecoming.
Each tank weighs 200 pounds and holds 45 liters of liquid oxygen.
This little house in Pawtucket is ready for a baby, but she is no ordinary baby. Three days after the oxygen arrives, Teagan Grant will come home for the first time. Born the previous June, 16 weeks premature, Teagan has spent the first seven months of her life in the hospital. And she's going to need industrial-strength assistance just to stay alive.
Teagan's mother, Kim Grant, bounds from room to room, trying to figure out how to organize the supplies. Stephanie Galligan, a respiratory therapist with Vanguard Home Medical Equipment, is helping her. Kim's husband, Joe, is at work.
"You have to think about where everything is going to go, and what you need at your fingertips," Galligan says. "Your gloves, your suction catheters, your saline bullets have to be right there."
Kim contemplates the oxygen tanks. "They look nicer than I thought they would."
Teagan will need oxygen -- mixed with air and pumped into her damaged lungs by the laptop-sized ventilator. Riessen puts a set of wheels underneath the downstairs tank so Kim can move it once she figures out the best location. Then Riessen demonstrates how to hook up the oxygen to the ventilator, and how to fill the portable oxygen tank that must accompany Teagan every time she leaves the house.
"You never think this when you're going to have a baby," Kim remarks. "You just never expect it."
Indeed, the life that now awaits Kim and Joe Grant is the last thing that any new parents would expect. Before Teagan was born, Kim worked full-time as a paralegal for a title company and part-time as a bartender at a banquet facility. Joe is a mechanical engineer, a sociable guy who loves to play pool and who takes life as it comes. They grew up in Pawtucket, met as young adults, and married in 1995.
Kim's first pregnancy ended in a miscarriage about 10 years ago. After that, their attitude toward parenthood was: "If it happens, it happens." When it did finally happen, Kim was 38 years old -- an age when pregnancy complications are more common.
But Kim dutifully went for prenatal care, as do the vast majority of pregnant women in Rhode Island. For all its value, improving access to prenatal care does not seem to reduce premature births. Despite one of the highest rates of prenatal care, Rhode Island has about the same rate of prematurity as the rest of the country -- 1 in 8 births.
Audio: “I called my husband … and he’s like, 'Call 911 right now!’” – Kim Grant
KIM HAD visited her obstetrician the day before Teagan was born at 24 weeks' gestation. She hadn't been feeling well for about a week, had lost weight and had terrible pains in her side. Her doctor thought it might be gallstones. Leaving the doctor's office that day in June 2007, Kim suddenly felt dramatically worse; the pain was so intense she pulled over to the side of the road and called 911.
She was taken by ambulance to Memorial Hospital of Rhode Island, and quickly transferred to Women & Infants Hospital. Joe, summoned from work, followed the second ambulance to Providence. Women & Infants has specialists in high-risk obstetrics and an intensive care unit for sick and premature newborns.
There, the high-risk team descended. They diagnosed HELLP syndrome, a condition caused by pregnancy in which red blood cells break down, liver cells are damaged and the blood shows a reduction in platelets, which are responsible for clotting. HELLP syndrome is related to preeclampsia, another dangerous condition in pregnancy. The causes of both are little understood. HELLP sometimes comes on suddenly -- "out of the blue," says Dr. Stephen R. Carr, the high-risk obstetrician who cared for Kim.
The pain Kim felt in her side was her liver swelling against the tough capsule that encloses it. If the swelling didn't stop, the liver would rupture and Kim could bleed to death. And there was only one way to stop it: end the pregnancy, even though the baby would be terribly premature. The minute the baby is delivered, the illness goes into reverse "as if someone flicks a switch," Carr says.
Audio: Joe Grant talks about efforts to save Kim’s life.
But attempts to induce labor failed, and Kim's platelet count was too low to allow a caesarean section -- the risk of bleeding was too great. Kim had been given betamethasone, a steroid that helps the fetus' lungs develop more quickly. By happy coincidence, that drug also increases the mother's platelets. The day after she arrived at the hospital, Kim's platelet count improved. She had the operation.
"There was a little cry and the baby lived," Joe recalls. "I was a little surprised that the baby was still alive."
Scrawny and wrinkled, Teagan came into the world weighing just under a pound -- 440 grams. She was one of some 1,500 premature babies born in Rhode Island in 2007, part of a growing nationwide epidemic. Teagan was an extreme case, much smaller than most preemies, with a rough road ahead.
Kim and Joe had recently chosen the baby's name: it's Welsh for "beautiful." Kim is Irish, not Welsh, but she and Joe wanted a name off the beaten path.
Teagan was whisked away to the neonatal intensive care unit, or NICU (pronounced "nick-you"). The next few weeks were a blur of calamities. The first came when Teagan was a week old. The phone rang in the middle of the night. As often happens to babies so premature, her fragile bowel had burst open and her belly filled with deadly, toxic fluid. Kim and Joe rushed to Providence.
Audio: Do not resuscitate? "What's best for Teagan?" -- Kim Grant
"We didn't say a word the whole way down," Joe says. They were ushered into a small room to be alone with their baby. Kim held her hand, and Teagan just lay there. They waited for her to die.
But Teagan lived. "She's really a remarkable little girl," Kim says, pride in her voice.
Over the next weeks, the Grants were awakened by two more middle-of-the-night calls leading to two more bedside vigils. Eventually the doctors asked the Grants for some guidance on how far to go for Teagan. Kim and Joe agreed to a "do-not-resuscitate" order, saying the staff should take reasonable steps but shouldn't go overboard trying to revive her if she had another crisis. "I didn't want her to suffer," Kim says. But Teagan's calamities were over.
Meanwhile, Kim was spending most of her days at the hospital -- she eventually left her job -- and Joe would come in the evenings after work. Their lives revolved around the NICU.
Eventually a surgeon performed a tracheostomy, creating a hole in Teagan's throat to connect her to the ventilator through a plastic tube called a "trach" (pronounced "trake"). He also made a hole into her stomach for feeding through a gastrostomy tube, or "g-tube." Until then, Teagan had been fed through a slender catheter threaded through her nose and into her stomach.
Not long after that, the doctors and nurses started talking to Kim and Joe about taking Teagan home. The parents could barely fathom what that meant, and even at Women & Infants, Teagan's case was unusual. Premature babies commonly go home with a monitor and sometimes supplemental oxygen, usually administered through a tube in front of the nostrils. But rarely does a baby go home with a ventilator and a g-tube. Such children need home nurses and round-the-clock attention, and no one can predict for how long.
Audio: “Can she come home? How does that work?” – Joe Grant
Joe and Kim started their training. To them, the process seemed as chaotic as it was frightening.
"We basically started learning what the nurses do," Joe says.
"You know what amazes me," Kim says, "is that people have to go through four years of college to take care of our baby in the hospital. And just like, you know, two to three weeks of training. … It's like, you're kidding me. Oh my god."
Kim and Joe had to learn how to operate the ventilator, which forces air into the baby's lungs; the pulse oximeter, which measures the oxygen levels in her blood; and the machine that pumps formula into her stomach. They had to know how to draw her medications, how to mix formula, how to change the dressings around her g-tube, how to change her trach and how to suction fluids out of it.
Kim had to alert the local Fire Department that a sick baby lived in the city, and would have to be taken to Hasbro Children's Hospital in an emergency.
She had to notify the electric company that her neighborhood should get priority in a blackout because her baby depends on technology to live. She had to apply for a handicapped license plate.
Kim Grant hugs nurse Heather McKaig goodbye on Teagan's final day at Women & Infants Hospital, in Providence, R.I.
She had to get a double stroller big enough for Teagan's equipment.
She had to arrange -- with call after call to insurance company and pharmacy -- to get the baby's medications.
THE GRANTS had no idea what all this would cost them. Joe had health insurance through his company, but that never covers everything. (UnitedHealthcare of New England, which covered the Grants at the time, says that it spent $1.6 million on Teagan's seven months in intensive care.)
Kim applied to the Katie Beckett program, a part of state Medicaid that pays for the care of severely disabled children. Unlike other aspects of Medicaid, for which only low-income people are eligible, Katie Beckett doesn't consider the parents' income. Named for a girl who was forced to live in a hospital to remain eligible for coverage, Katie Beckett enables middle-class parents to take home children who otherwise would need to be in an institution. It pays for home nursing and other costs not covered by private health insurance. Some 1,500 Rhode Island children benefit.
"We worked hard all our lives," Kim says, tearing up. "We're like middle-class people, and no one gives you anything. I feel like we're fighting from day to day."
Kim was quick to tears in those days. Although she comes off as unimposing -- short, with unruly auburn hair, typically wearing jeans and sweatshirt -- Kim sets high standards for herself. She keeps her house immaculate and mails her thank-you notes on time. Now, contemplating her many new responsibilities, Kim didn't see how she could possibly manage it all.
Kim and Joe Grant ride the Women & Infants elevator, elated as they take Teagan home for the first time.
At the discharge planning meeting, as Kim recalls it, there were 22 people -- doctors, nurses, social workers, respiratory therapists -- each with his or her own area of expertise, but no single person who could pull it all together, no "point person" with all the answers.
"No one tells you how this all works," she says.
ON JAN. 13, 2008, a Sunday afternoon, Kim and Joe come to the NICU for Teagan's final medical checks and the paperwork. They say goodbye to the nurses and therapists who brought Teagan so far from the day she was born, when no one knew if she could survive. They hug, they pose for group pictures, they shed tears.
On her homecoming day, Teagan weighs 11 pounds. With a big bald head and chubby cheeks, wearing a brown hooded jogging suit, she doesn't look like a preemie any more. Kim puts the baby in the car seat and all her equipment in a big red wagon. You can barely see the tube running from Teagan's throat to the portable oxygen tank slung over Kim's shoulder, or the wire from her foot to the school-bus-yellow pulse oximeter.
Kim picks up the car seat by its handle, and like a celebrity, Teagan leaves with an entourage -- her parents, one of her nurses, a respiratory therapist and a parent consultant.
Kim Grant shows Teagan her first glimpse of her bedroom.
"Your attention, please," the NICU's loudspeaker announces. "Teagan is leaving the building."
Teagan sleeps throughout the 25-minute drive home. They arrive to find that friends have decorated the house -- balloons and streamers outside, a "Welcome Home Teagan" sign inside the front window.
Kim happily carries Teagan upstairs and shows her her crib. "Look how big it is!" It's a normal size crib, but probably four times larger than a NICU bassinet.
The house fills up with people, and they stay for hours. There is so much to contend with. Stephanie Galligan from the equipment company arrives. The home nurse hired to take care of Teagan pulls up. It takes all afternoon to get things arranged. Someone rolls the oxygen tank into the living room, along with plastic drawers full of supplies. Out go the two wicker baskets piled with toys still in their packages.
Conversations overlap and intersect. The home nurse and Kim go over paperwork and confer about how to mix the formula, when to give which medicines. Someone spills the formula. Someone rushes to clean it. Every now and then Kim exclaims, "I'm ecstatic!" or "Joe, we have a good baby!" Or she bends over Teagan, covers her in kisses and tells her, "Mommy's so proud of you."
Meanwhile, Teagan falls asleep in a chair, the machinery that sustains her huffing nearby.
Amid the hubbub, Joe asks with a guffaw, "What do we do now? Wait for her to grow up?"
But of course there will be plenty for the Grants to do, more than they ever imagined.
TEAGAN'S STORY: February 2008 'But will she catch up?'
The Grants master their baby’s care, but Kim asks some tough questions about the future. Read the story
TEAGAN'S STORY: December 2008 Learning the basics
Nearly a year after coming home, Teagan is learning to eat and slowly gaining strength. Read the story
GRAPHIC Every day matters
Track the week-to-week development of the heart, lungs, brain and digestive system in the womb, the impact of premature birth on these organs, and on a preemie's survival Explore the graphic
RELATED STORY High costs follow rise
in preterm births
Throughout the country, more than 530,000 preemies are born each year, including about 1,500 in Rhode Island. A lot of preterm infants die, but if they survive, they need days to months of intensive care, at costs that can run into hundreds of thousands of dollars or more — expenses that contribute to the price of health insurance for everyone. Read the story
CHART
On the rise in RI Preterm births in Rhode Island have steadily increased since 1990, but the growth has been chiefly among late preterm births
