Tiny miracles: The world inside the neonatal intensive care unit
He wriggles a ruddy hand and squirms. She beams.
He opens his eyes. She kisses his forehead, careful of the tubes taped to his face.
He sleeps. She gazes, cradling his 4-pound, 14-ounce body in her arms.
Stephanie Barron collects these moments as she sits an arm’s length from a plastic incubator in the neonatal intensive care unit at Shands Children’s Hospital at UF. Each memory with her baby boy Brody — changing his tiny diaper, tucking him into her shirt for “kangaroo care” — is precious to her. She almost didn’t have many memories of him at all.
Brody and his twin brother, Brayden, were born by emergency Caesarean section at Shands Children’s Hospital on June 17, about three-and-a-half months before they were due. Brody weighed just 1 pound, 9 ounces, and Brayden weighed just 4 ounces more.
“That first day, they told me there was only a 20 to 30 percent chance of either of them making it,” Barron says, her voice wavering. “That was hard. I didn’t believe them.
“When you get pregnant this is not what you expect.”
Designed for babies
The lights are low inside the Level III neonatal intensive care unit. Nurses bustle around plastic incubators called Isolettes where babies barely bigger than an ear of corn are hooked to ventilators, some causing tiny chests to quiver as they pump in 750 to 900 breaths a minute.
About 750 patients, from micro-preemies like the Barron twins to sick full-term babies, come through the Shands Children’s Hospital NICU each year, including some from other Level III NICUs whose doctors send babies to UF after they have tried everything else, says David Burchfield, M.D., chief of neonatology in the College of Medicine department of pediatrics.
It’s a place where the combination of medicine, technology and highly trained experts can save a baby’s life.
It’s also a place where mothers and fathers sometimes say goodbye to babies they never got to hold until after they were already gone.
“People always ask me ‘Why do you work there? It must be sad,’ ” says Leslie Parker, Ph.D., A.R.N.P., an assistant professor in the College of Nursing and a nurse practitioner in the unit. “But the way I see it, these things are going to happen regardless of whether you are there or not. I didn’t make the sad thing happen, but if we can make this experience better for the family then we have done a really good thing.”
The smallest and sickest babies stay in the Level III NICU until they can be moved to the Level II NICU, known as the “feeding and growing” unit, a few doors down.
Here in the Level III unit, the staff — a team of nurse practitioners and a team of residents take care of the babies with staff nurses under the direction of faculty neonatologists — have a variety of weapons in their arsenal to take care of sick babies. Even the room, which was renovated in 2005, is designed to give babies the most womblike environment possible, with low lighting and hushed sound. Nurses also try to handle the smallest babies as little as possible because they are still supposed to be floating in the womb, not held tightly.
Walking through the NICU, Shands nurse Melissa Huene, R.N., rattles off a list of machines they use to keep babies alive: Standard and high-frequency ventilators help babies breathe; monitors track babies’ oxygen saturation, heart rate and other vital signs; IV pumps dispense around-the-clock medication to help control baby’s blood pressure and treat respiratory distress; nitric oxide can improve oxygenation. And the list goes on.
“Some of the babies we take care of are so small, the total amount of blood in their bodies is three to four tablespoons,” Burchfield says. “If an adult blood test requires two tablespoons of blood, we need equipment that allows us to do it with a 20th of a tablespoon.”
The technology is vital, but it is the staff that keeps the Shands Children’s Hospital NICU placed among the top 25 percent of units that belong to the Vermont Oxford Network, which collects and analyzes data from NICUs across the country, Burchfield says.
“The NICU has the lowest turnover rate for nurses in the hospital,” he says. “They come here and they want to stay. We have a lot of electronic monitors, but nurses are the most important monitors. These nurses who have been here, they can just sense when a baby is not doing so well.”
C.J. Kereston knows she is probably in at least a few dozen baby books, having posed with countless babies during her 26 years as a nurse in the NICU. She tears up when she reflects on that time, on the teenagers who have come to visit years after being discharged and the families she’s cried with after they lost their little ones.
She’s seen the NICU from both sides. Twelve years ago, her daughter was a NICU baby, too.
“I had the luxury of already knowing everyone here, and I already had that trust,” Kereston says. “Parents come in and don’t know if they can trust you or not and they don’t know what to expect.”
No one thinks about having a baby attached to tubes and monitors and a ventilator when they get pregnant, says Julie Baines, M.D., a UF assistant professor of neonatology.
“It’s incredibly difficult and full of uncertainty,” Baines says. “It is a lot of ups and downs, and I usually tell parents that from the get-go.”
The department holds a reunion for babies who have gone home, giving families a chance to bring their growing children back for a visit … and a chance for families with children in the NICU now to meet children who are home and thriving.
“I like keeping in touch with families,” says Baines, who keeps baby photos tacked to a bulletin board in her office. “Here are these 1-, 2- and 3-years-olds out there thriving because of what happened in the NICU.
“These little babies can be so incredibly sick. To see them growing, laughing and playing is very special to all of us in this field.”
But for parents whose babies are in the NICU, it can be hard to see past the tubes, the dings and beeps of the monitors, and the four plastic walls of the Isolette.
“It was hell. I don’t even know how to describe it,” says Jamie McLaughlin, D.V.M., a Gainesville veterinarian whose twins, Ava and Elliot, were born 10 weeks early in May 2009. “You see people leaving with their big, healthy babies every time you walk to the NICU, and see your babies struggling … It’s a roller coaster.”
After surgery to repair a heart condition called patent ductus arteriosus, McLaughlin’s twins improved and came home about eight weeks after they were born. Now 16 months old, Elliot can walk and has caught up to other 1-year-olds in weight. Ava, who crawls across the floor at expert speed, is not far behind.
Brandon Lok’s stay in the NICU lasted just a little longer. Born last July, Brandon and his twin sister, Sophia, spent six months apart after birth. Each weighed less than 2 pounds, but Brandon faced far more setbacks. His lungs were not as developed as his sister’s and he developed pneumonia twice, says Laura Lok, who had the twins at 27 weeks’ gestation after developing preeclampsia. Brandon was still in the Level III NICU when his sister came home from the hospital last October.
“With her, we at least saw one good change every week,” Lok says. “Sometimes, it just seemed like he was never going to make it out of there.”
But in January, he finally came home, weighing about 9 pounds.
“As soon as I brought Brandon home, I had them in the Pack N’ Play and they were holding hands and laughing. They must have remembered each other from the womb,” she says.
Brandon still has struggles — he is on a low level of oxygen and the family is working with a therapist to resolve feeding issues — but Lok is hopeful he will catch up to his peers by the time he is 2.
“I am just happy to see how far they have come and how much they have grown,” Lok says. “When you are in there, it is hard to imagine your kids being 10 pounds. I am so appreciative to everyone over there.”
Loss … and hope
Two days after her twins were born, Barron and her husband, Jared, got the call. Brayden, who was hooked up to every possible machine in the NICU, was not doing well. He had a serious hemorrhage in his brain, his lungs were not mature enough and he wasn’t responding to treatment.
He passed away while the couple was on their way to the NICU.
“We came and saw him, and I got to hold him,” Barron says quietly. “As soon as Brayden passed away Brody started doing better. They say it is a twin bond. After he passed, all the energy he had left went to Brody.”
Brody has faced his own struggles since then. He developed necrotizing enterocolitis, a common infection in the smallest premature babies that causes the bowels to stop functioning. Before he underwent surgery, Barron got to touch Brody for the first time. She placed her head on his little chest and sang. First “Jesus Loves Me,” then “Jesus Loves the Little Children.”
Surgeon David Kays, M.D., operated on Brody, connecting an ostomy bag to his abdomen to collect waste while he healed from the infection. Brody recently underwent surgery again to remove the ostomy bag and repair his intestines.
Barron has been by his side every day. Since returning to work, her husband visits on nights and weekends with Brody’s older brother, Jordan.
“(Jordan) came every day all summer until school started,” Barron says. “He would watch the monitors and tell me what Brody’s heart rate and oxygen were.”
Two days before the surgery was scheduled, Barron sat in the Level II NICU, peering at Brody in the Isolette as he underwent a blood transfusion. His pacifier popped out of his mouth. She reached in to replace it. He looked pink … and wiggly. Healthy.
“He’s almost the size of a bag of sugar,” she says with a smile.
For now, her whole world is there, the tiny bundle in the Isolette. She hopes to take him home soon, but until then she travels from her home in Trenton, Fla., every day to be in that chair next to him.
It’s the only place she wants to be.