Life in the Neonatal Intensive Care Unit
Parents of premature infants forge tight bonds with their baby's caretakers
Kymberli Petronio, pregnant with triplets, couldn’t see beyond the sheet that was tenting her swollen belly. She didn’t really want to. The seventh-grade science teacher at Forest Oak Middle School in Gaithersburg had worked so hard to delay this moment. Twenty weeks into her pregnancy, she’d taken a leave from teaching because her doctor told her to stay in bed as much as possible. When she went into premature labor at 24 weeks, she spent a month flat on her back in a room at Adventist HealthCare Shady Grove Medical Center in Rockville. To stop contractions, the petite 32-year-old took muscle relaxants that sapped even her ability to swallow solid food. She subsisted largely on chicken broth and Ensure—all so the triplets, two boys and a girl, might grow enough to survive.
Inside Shady Grove’s neonatal intensive care unit (NICU), doctors and nurses followed Petronio’s pregnancy and prepared for the delivery. “We were ready for them a month before they came,” says Cathy Ambrogi, a nurse who has worked in the hospital’s neonatal unit for 20 years. When it looked as if the babies might be born at 24 weeks, with lungs so underdeveloped that there was no chance they’d breathe without help, the staff placed three ventilators side by side in a large curtained bay that they nicknamed “Triplet Row.”
Now they were out of time. At 28 weeks, the amniotic sac surrounding one of the triplets had ruptured. Petronio had developed an infection and systemic sepsis, imperiling her and the babies. More than a dozen doctors and nurses wearing surgical masks and gowns crowded into the delivery room with Petronio and her husband, Chris, in February 2014. As the obstetrician prepared to deliver the triplets by caesarean section, three neonatology teams—one for each baby—stood by with empty incubators. The doctors and nurses tried to sound upbeat, even cheerful, but the mood in the room was tense, Petronio recalls. She knew, and they knew, that the babies might not all survive. One of the nurses in the room was a grief counselor.
Unable to read the masked faces around the delivery room, Petronio listened intently for the sound of her babies crying. The cries of infants born prematurely can be faint, like the mewing of a kitten. She couldn’t hear anything above the steady din of doctors and nurses at work.
Infants born prematurely often spend their first days or weeks protected inside temperature-controlled incubators. At Shady Grove hospital, NICU staff—including nurse Meghan Bailey—must reach through open portholes to care for their tiny patients.
Suddenly, there was swift movement. First one neonatology team, then a second, wheeled a clear plexiglass isolette toward the door. Inside each, Petronio glimpsed a tiny figure wrapped in what looked to her like a biohazard bag. Then she heard a cry. It was not the reassuring sound of a baby crying. It was the sound of her own screaming.
“Are they dead?” she shouted. “Are they dead or alive?”
All three babies were alive. A nurse brought the largest, Nicolas, to Petronio’s bedside. He weighed 2 pounds, 5.5 ounces. “He was the least distressed one,” she says. “I couldn’t hold him yet. I remember giving him a kiss on the cheek.”
Then Nicolas, too, was placed in an incubator and wheeled down the hall to the NICU. The triplets would spend the next 59 days there, among infants struggling to do what others are born doing: breathing, sucking, swallowing, digesting.
Kymberli and Chris remember the tidal wave of fear. Everything about their babies’ survival seemed terrifyingly beyond their control. Then, over the next several weeks, something unexpected happened. They realized that Ambrogi and the other NICU nurses and doctors weren’t just caring for the triplets as if they were family—they were becoming a kind of extended family. The nurses in the unit didn’t just monitor the triplets, they fussed over them like aunts and grandparents do. They helped Petronio balance all three babies on her lap for a family photo. “I had this strong desire to know them and let them get to know me, because you have to trust them,” she says of the medical professionals who cared for the triplets. “That trust bond has to be developed or you are not going to survive a NICU stay.”
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A steady rise in premature births nationally has made many NICUs busier than ever. About one in 10 babies in the United States is now born prematurely—before 37 weeks of gestation. The reasons for the increase are not entirely clear, but fertility treatments leading to more twins and triplets is one factor in this country. Advances in medical care have meant that some infants born at just 22 weeks of gestation—long before their brains, lungs and digestive systems are fully developed—can be saved. To do that, the newborns must spend weeks or months in neonatal units that are sterile and regimented, while parents keep vigil at their side.
Shady Grove and Holy Cross in Silver Spring are the only two hospitals in Montgomery County with Level III NICUs, which means they’re able to provide highly specialized care for premature, low birth-weight and critically ill babies. Around the NICU at Shady Grove are reminders of the high stakes. Nobody can enter the secure unit without washing their hands as carefully as a surgeon preparing to operate. Atop a centralized desk, a Yacker Tracker noise meter reminds staff and visitors to keep their voices low; some preemies are so fragile that even a loud noise can cause their vitals to crash, triggering brain bleeds.
On a July morning at Shady Grove, a dozen health care professionals wearing scrubs or white lab coats work their way around the NICU. They stop next to every incubator or open crib to discuss each baby’s status: how the infant is breathing and eating, how much weight the baby has gained or lost, what medications, if any, are required. The staff making these daily rounds—doctors, nurses, a social worker, a nutritionist, a pharmacist and a therapist who helps babies learn to suck and swallow—don’t just talk to each other. They also direct their remarks to the parents, grandparents or other family members who are often there day and night. Together, they make a care plan for that day.
“You truly are the co-captain of the team,” Dr. James Rost, medical director of the NICU, tells one mother, “if not the captain.”
Shady Grove NICU nurse Cathy Ambrogi cuddles a now-thriving baby boy who is wrapped up to leave the NICU and go home.
This mom is frustrated because her 3-week-old daughter is having trouble eating. She asks if it’s time to give up on breast milk and use a medicated formula, if making the switch might help her baby leave the NICU sooner. Breast milk helps a baby’s developing immune system, Rost reminds her, and medications can damage the lining of the stomach. He encourages her to hang in there while they try different feeding positions before they resort to formula. “I mean, I would rather do breast milk,” she says. “But I really want to go home.” She laughs, and the staff laugh with her. They hear that a lot.
An electronic sign on one wall announces how many days, hours and seconds have passed since an infant here has developed a potentially lethal central line bloodstream infection. Some premature infants are fed and given fluids and medicine through bundles of long, thin tubing and a catheter inserted into a short remnant of their umbilical cord. Neonatologists used to say that a certain number of these infections each year was inevitable. “Now we know that’s not true,” Rost says. The infections are preventable with meticulous infection-control procedures, such as mandatory hand-washing and a culture that empowers parents as well as health care professionals to speak up when they notice that someone has touched something unsterile and needs to wash again. When central lines are inserted, changed or removed, two nurses wearing masks and gowns perform the procedure in a special isolation room. As of early December, there hadn’t been a central line infection in the Shady Grove NICU in more than three years.
Before babies are developed enough to rest in open cribs, they are typically kept inside protective plexiglass isolettes or incubators. Born with little body fat, they need the warmth of the incubator to regulate their body temperature and stave off hypothermia. Open portholes in the sides of the isolettes allow caretakers to reach inside to manage tubes or change diapers that can be as small as a matchbook.
“We put a hat on their head, we put a tube in their nose, we stick Velcro things on their face to keep the tubes in place. They are a hot mess,” says Leeann Giuseppetti, a NICU nurse who works the overnight shift. “Some babies just lay there and take it. Other babies are just wild. They are kicking and screaming. When you go in to change their diapers, they are not having it. …They are cozy the way they are. Then here comes this set of hands again and they go off the deep end.”
Successfully treating infants in the NICU requires “high-tech and high-touch,” Rost says. A very premature infant weighing less than 1 pound can fit in the palm of an adult’s hand and is so delicate and fragile that you can almost see through them. Sticking a ventilation tube down a tiny baby’s airway and into the lungs can cause long-term damage, so the NICU now uses noninvasive equipment whenever possible to help babies breathe. The staff encourages mothers to start pumping breast milk within six hours of giving birth. The hospital has a donor breast-milk program to help infants who were born so prematurely that their mothers aren’t yet producing milk. In addition to boosting a premature infant’s immunity, ingesting even tiny amounts of breast milk helps signal a preemie’s underdeveloped digestive system to start working, Rost says.
Life in the NICU isn’t only stressful for the babies. Research shows that parents with a premature infant who spends time in a NICU can experience lingering post-traumatic stress disorder. Parents sometimes sleep on a reclining chair next to their baby’s incubator. Day and night, nurses teach terrified parents how to feed, bathe and diaper their tiny infants. They encourage moms and dads to unbutton their shirts and hold their baby, skin to skin, for hours. The practice, known as kangaroo care, has proven benefits. Among them: stabilizing babies’ heart rates, regulating their breathing, increasing weight gain, and shortening their stay in the hospital.
The Shady Grove NICU, which treated 574 infants in 2015, is open to parents 24 hours a day, and moms and dads are encouraged to be at their baby’s bedside during morning rounds so they can hear updates and participate in decisions. They receive training on how to speak up, ask questions and advocate for their infants, Rost says. Still, there is no way to prepare parents for some of what they experience.
Jen Keefer was sitting in the NICU at Shady Grove holding her newborn son, Tripp, in 2014 as her husband, Randy, and her mother looked on, beaming. Suddenly, Tripp stopped breathing. “The oxygen alarm and the heart rate alarm were going off,” says Keefer, 33, a lawyer. Tripp, their first child, had been born at 26 weeks. His lungs were underdeveloped. “I could see him turn this sickening color. This gray, just the color of death. He’s not breathing. He’s not doing anything that a living being does. And he’s lying on me. I’m his mom and I can’t do anything. I can’t do anything. His nurse comes over and picks him up off me. My mom and husband and I back away and try to make ourselves as small as possible. We watched while nurses gathered around his bed. They tried to revive him: patting him, tickling him, giving him puffs of oxygen, reminding him to breathe.”
Keefer lost track of how many times Tripp had to be resuscitated during his stay in the NICU. Ambrogi, one of Tripp’s nurses, can’t forget—she says the newborn stopped breathing at least 100 times. “We would basically have to resuscitate him for a very long time,” she says. “His parents would spend lots and lots of time here, so they saw this over and over. It was scary for them. It was scary for us.”
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To be a NICU nurse requires warm people skills, meticulous attention to details, critical thinking and a tolerance for the stress of life-or-death situations. Not every good nurse can handle it. “Every once in a while one comes through and says, ‘This is not for me,’ ” says Amy Gilkey, who supervises the 75 nurses who work in the unit.
Cathy Ambrogi, however, wouldn’t work anywhere else. “She is like the mayor of the NICU,” Gilkey says. “She knows everybody.” Ambrogi, 58, grew up in Bethesda and graduated from what is now the Connelly School of the Holy Child in Potomac. She knew even before she went to nursing school at Marymount University in Arlington that she wanted to work with sick infants, she says. She’s always loved babies. She was a NICU nurse at Georgetown University Hospital for 17 years before going to Shady Grove, where she works the day shift.
Premature babies are often fed and medicated through lines that must be inserted and periodically changed without introducing a potentially lethal infection. This board shows some of the equipment that is used in the process of changing a central line.
The work has never become routine. “I cry at every delivery, every time I take the baby to the mom. Not sobbing, but my eyes fill with tears every time,” says Ambrogi, who is divorced and has two grown children. “It’s crazy. I’m like, when is this going to stop? But I don’t think it ever will. It’s the coolest thing to help the mom see her baby for the first time.”
On her days off, Ambrogi, who lives in Gaithersburg, often calls the NICU to check on babies she knows are having a tough time. “I miss them,” she says. “I miss the parents. I miss the babies. I miss their little toes.” When she goes out to socialize, it’s often with colleagues from the NICU or parents of former NICU babies. As much as she loves her work, it takes a toll. When her own daughter, a NICU nurse in New York, gave birth last year, Ambrogi was painfully aware, too aware, of everything that could go wrong. She counted the weeks of her daughter’s pregnancy the way few grandparents probably do. If the baby is born this week, she would ask herself, will it need a ventilator? Will it have to go to the NICU?
“The NICU is a scary place,” says Kymberli Petronio, who gave birth to the triplets in 2014 and has since been on an extended leave from teaching. “Cathy just lightens it.” When Ambrogi returned from New York last summer after attending the birth of her first grandchild, Petronio picked her up at D.C.’s Union Station and drove her home. She wanted to see Ambrogi’s baby pictures and show off the 2-year-old triplets.
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Tiffany Wallace and her husband, Aaron Schetter, both cancer researchers, had a simple wish for their daughter: They wanted her to spend her first Christmas at home.
The couple was 20 weeks pregnant with twins—a boy and a girl—when they learned that their daughter’s umbilical cord hadn’t attached properly to the placenta. If they continued the pregnancy to full term, their son would likely thrive, but their daughter would be stillborn. If the twins were delivered this early, they’d lose both. Their obstetrician charted a middle course calling for frequent sonograms to determine when their daughter required immediate delivery. Seven weeks later, in August 2012, Tiffany Wallace gave birth at Shady Grove. The twins went straight to the NICU.
Alexis weighed 1 pound, 6 ounces. Her brother, Dylan, weighed nearly twice that. He went home relatively quickly; she struggled. Unable to breathe, Alexis was intubated: A tube forced air into her underdeveloped lungs. She was so frail, her mom says, that “if you touched her or talked to her through the incubator, her stats would plummet. She couldn’t have any stimulation.”
“We tried not to feel the enormity of it,” says Wallace, a program director at NIH in Bethesda. “You want to protect yourself because we didn’t know if she would survive.”
At first, the twins’ parents were so numb as they sat by the twins’ side-by-side incubators that they barely noticed the nurses and doctors who moved around them. “They are so supportive,” Wallace says. “But they are strangers then. I didn’t feel like openly crying in front of people we barely knew. But every now and then it all flooded out. You don’t know what will happen in 10 minutes. You never know.
Infants in the NICU often have difficulty adjusting to light, noise and even the touch of someone’s hand.
“The nurses are so prepared for this. They know when you need space. They know when you need information. They kept me together. I didn’t even realize it at first. Someone would come and just give me a tissue box. Or they would be so optimistic, pointing out all the things my daughter was doing great.”
Gradually, Ambrogi encouraged Wallace to hold Alexis, assuring her that she could do it without hurting the baby. “You got this!” Ambrogi told her over and over.
“She forced me to hold her for the first time. I didn’t want to hold her. I didn’t want to be the one holding her when she had some kind of event,” Wallace says. “There are really no words for that kind of support, for someone who gives you the confidence to hold your own child.”
As Christmas approached, the couple had enough confidence to want to take their daughter home, but she still needed an arsenal of machinery to help her breathe and eat. Ambrogi volunteered to teach the baby’s scientist parents how to operate the equipment Alexis needed to survive. They learned one machine each day, and Ambrogi showed them how to administer the nine medications Alexis was taking through her feeding tube. “Cathy coached us like we were Rocky,” Wallace says.
Relationships like that don’t just happen. They are fostered by NICU doctors and nurses who recognize that love is good medicine. Katie Craine, a fifth-grade teacher, and her husband, Paul, a Montgomery County Police detective, were resting fitfully in their Gaithersburg townhouse in late 2014 when Katie’s text alert went off. The couple had spent another long day trading places; one watching over their newborn daughter in the NICU at Shady Grove while the other cared for their older daughter at home. Craine reached for her phone, looked at the message and smiled. It was a photo of her daughter Amelia—and not just any photo. The baby was dressed like a tiny ballerina. Leeann Giuseppetti, one of the NICU night nurses watching over Amelia, liked to dress her up for fun photographs. She’d text the photos to reassure mom that Amelia wasn’t just surviving, she was looking good.
NICU nurses and doctors help parents cope with the stress of having a very ill infant by emphasizing all the things that are normal about their child’s life and celebrating what they can: babies whose weight reaches 1,000 grams (about 2.2 pounds), babies who, against the odds, survive 100 days, babies who look beautiful in snapshots. “I can’t tell you how many times in the middle of the night, when she knew I would be awake, I would get a text with a picture,” Craine, 33, recalls. Amelia was born at nearly 26 weeks, weighing 1 pound, 9 ounces. “Leeann had taken a ribbon and made a hair bow for Amelia. Or she had made a tutu and put it on her. She made all kinds of caps for Amelia. She crocheted caps for her. It made me realize that this person loves her like she is her own.”
The bond that formed between Amelia’s nurse and her parents has lasted. Amelia is a spirited toddler now. The Craines recently bought a home in Frederick, in part to be closer to Giuseppetti. They visit each other regularly. Last September, the two families came together for a Labor Day cookout. “Leeann has seen both me and my husband at our best and at our worst,” Craine says. “I would say that Leeann feels more like a sister to me, or another mom.”
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Tripp Keefer’s NICU caretakers didn’t just save his life time and again. They also sat with his parents, listened and sometimes cried with them as they tried to understand the incomprehensible: Why?
Tripp was the Keefers’ first child, but third pregnancy. Jen’s first pregnancy ended in a miscarriage. Twenty-three weeks into her second pregnancy, she and her husband learned that their baby girl had a congenital deformity. If she survived birth, she’d likely know a very short life of suffering. The Keefers didn’t want that for her—they didn’t want to bring a child into the world who wouldn’t know joy. They made the agonizing decision to terminate that pregnancy.
Then they had Tripp. “I don’t know how much I believe in fate or destiny,” Tripp’s mom says. “I have thought many times: Was this just my destiny? If you don’t die when you are supposed to, does death just keep coming for you? If you don’t have the sick baby, are you still going to get the sick baby?”
During Tripp’s first months at home, he caught a virus and was rushed via helicopter from an emergency room in Hagerstown to Children’s National Medical Center in D.C. The first person Keefer called for advice was Cathy Ambrogi. Throughout the night, other nurses and doctors from the NICU texted encouragement. One doctor asked if he could pray for them. Ambrogi spent her next day off visiting Tripp and his parents at Children’s.
Cathy Ambrogi holds a diaper sized for the smallest of the newborns in the NICU.
Tripp is 2 now, beautiful and healthy. He has some minor fine-motor delays. His parents keep Ambrogi and Tripp’s other NICU caretakers updated on his progress. Tripp’s mom and dad invited his former doctors and nurses to both of his birthday parties. They came.
Keefer was recently watching her son play with a friend’s child. The toddler was laughing uproariously. His mom realized that her greatest wish for Tripp had already come true: “He finds so much joy in life.”
Some parents don’t get that. Chrisoula and John Evans had just six days in 2014 to gather a lifetime of memories. Their daughter, Marietta, was one of 4,890 babies born at Shady Grove that year—and one of 12 newborns who died. More than two years later, Ambrogi still chokes up when she talks about Marietta and her family. She considers her time with them to be one of the most meaningful experiences of her long nursing career. Even in the bleakest circumstances, she found a way to help.
Marietta was born with a chromosomal abnormality known as Edwards syndrome. Among her deformities, her esophagus, which was supposed to be connected to her stomach, was attached to her lungs. If they fed her, she would drown. Rather than put Marietta through a series of surgeries and risk losing her on the operating table, her parents, who live in New Market, Maryland, chose to move into a hospital room with their daughter and get to know her while they could. Nurses from the NICU and from labor and delivery helped the family around the clock. The couple slept with Marietta at night and held her every day.
Ambrogi and the others encouraged Marietta’s mother to bathe her and dress her up in pretty outfits for baby pictures. The nurses organized a playdate with Marietta’s then 4-year-old brother. They surprised the family by making side-by-side ink-stamp footprints of brother and sister. They made plaster molds of Marietta’s hands and feet, and put them in a memory box decorated with hearts.
Marietta was born on a Tuesday. That Sunday, her mother was holding her when she realized the baby was slipping away. She called the NICU and asked for Ambrogi to come be with them. “I’m glad it was Cathy with us,” Chrisoula Evans, now 37, says. “I remember her face—it was so compassionate. That’s just how she is. …In times of need, she steps in. Whether you even know that you need her, she steps in.”
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The baby boy was born gray and limp. He was big, almost full term and perfectly formed, but he wasn’t breathing. His heart wasn’t beating. In the delivery room, Rost led a neonatal team as it forced air into the newborn’s lungs through a tiny tube and did chest compressions with their thumbs. For eight minutes, Sean Downey lay still.
“We resuscitated him for a very long time,” Ambrogi recalls. “He was not alive. Then, all of a sudden, I am looking at him and his little belly looked a little pinker. I was thinking, oh my gosh, my eyes are playing tricks on me. But he got pinker and pinker. I felt like it was completely and totally a miracle. In fact, all of us in that room started to cry. Because it was like, oh my goodness, we just did not believe that we would bring a baby who was alive out of that room.”
Nobody knew how long Sean had been deprived of oxygen before he was delivered by emergency C-section at 34 weeks in 2010. “They don’t know if he had sat on the umbilical cord, or [if] it was twisted or kinked…maybe for days,” his mom, Jaime Yarussi, deputy inspector general for business management at the D.C. Office of Inspector General, recalls. “It wasn’t anything we could determine.”
A scan showed that Sean had suffered damage in all four quadrants of his brain. Adults with brain damage that severe might never speak, walk or feed themselves. Babies are more resilient. In the NICU, the team wrapped Sean in a cooling blanket that lowered his body temperature, sending him into a kind of hibernation or dive reflex and slowing the flow of blood in his brain. Research has shown that this can substantially reduce seizures and brain damage in infants who are deprived of oxygen.
Still, even after the team had removed Sean from the blanket, he had trouble breathing and needed to be on a ventilator. He had trouble swallowing. “We couldn’t get a gag reflex,” Ambrogi says. “So we thought it was going to be a very poor outcome.”
Dr. James Rost, medical director of the NICU at Shady Grove, sets the tone for the unit, which he describes as “high-tech and high-touch.”
Sean spent 24 days in the NICU. “It was so hard for me to be able to leave him every night,” Yarussi says. “Cathy would say, ‘It’s OK. We’ve got this.’ Cathy was my lifeline. She seemed to know, at any given minute, what I needed.”
Each day on rounds, one of the doctors checked to see if Sean had developed a gag reflex. One day he did. “That was the moment when I said, ‘I’m done here. I love you all, but I really, really need to take my kid home,’ ” his mom recalls.
Sean is 6 now. He does not have brain damage, his mother says. He wears hearing aids and needs speech therapy. This past fall he started first grade in Fairfax, Virginia, where his parents recently moved. He likes to run around wildly while dressed in a Spider-Man costume. “There are weeks and weeks when we don’t even once think of what he went through,” Yarussi says.
Sean has a sister now, born at Shady Grove 14 months after his ordeal. “I called Cathy and said, ‘I’m having a baby,’ ” Yarussi says. “She said, ‘I’ll be there for that one.’ ” Rost was in the delivery room, too. They didn’t expect trouble—Sean’s parents just felt better being surrounded by their NICU family.
“I think we were all holding our breath,” Yarussi recalls. “After Sean, I didn’t know what to expect. Nobody spoke a word. …Once my daughter was born, the entire room was silent until she cried. She screamed at the top of her lungs. The next thing I heard was Cathy’s voice.”
“There she is!” Yarussi remembers Ambrogi saying, her voice filled with joy. “We got her.”
April Witt (firstname.lastname@example.org) is a former Washington Post writer.