The miracle ward

Scary, anxious time for parents of premature infants

By ANDREA GARCIA
Fairfield Daily Republic ©

FAIRFIELD - The day her child was born, Regina Rapier thought she would lose him.

Rapier was barely six months pregnant when she went into labor on March 3 and delivered a 1 pound, 10 ounce baby boy, measuring a quarter-inch shy of a foot.

She recalls he fit comfortably on the palm of her hand.

He was immediately taken to the neonatal intensive care unit, where his first breath of life flowed through a large ventilator tube taped to his small mouth. It would remain there for six weeks.

"Three days after Sean was born, this is what he looked like," she says with obvious pain, holding a picture of her newborn with a taped tube on his gentle face. "It's hard. It's really hard."

Sean, born at Sutter Solano Medical Center, spent seven weeks in the neonatal intensive care unit at Alta Bates Medical Summit Center in Oakland, where he developed chronic lung disease and underwent heart surgery.

"He was not doing well the first month," Regina, who lives in Vallejo, recalls in a quiet voice. "One nurse even told me that Sean almost met his maker because he had stopped breathing. That scared me. You don't know what's going on unless you're there."

She stops for a moment and gazes at her son.

"But I'm sure they don't want to scare you every day. They don't want to over stress you," Regina says of the nurses. "I just thought I was going to lose him."

Almost two months passed before Sean was able to transfer safely to the neonatal intensive care unit at NorthBay Medical Center. It is a community level 3 neonatal care unit - it accepts babies more than 27 weeks and does not perform surgeries.

"I'm glad he made it to this point," she says of Sean, who is now closer to Vallejo. "There was a time I just didn't know what would happen."

The neonatal intensive care unit

It's early Wednesday morning and the unit's dim lights form a soft glow throughout the room. The nurses go about their daily routines in silence while the sporadic beeps from heart monitors attached to the few premature neonates slice the quietude.

"Sean was sick, very ill and he was a mess," says Chris Samayoa, lead nurse at the unit. She gives Sean a gentle tug to stimulate his breathing.

"He doesn't know how to breathe. He still thinks he's in the uterus," Samayoa says of Sean, who now receives oxygen through a nasal cannala. "When they're premature, that part of their brain still hasn't developed to say you have to keep breathing."

The heart monitor begins to sound off again, Sean's breathing is down and Samayoa turns her attention to the machine. A few more tucks and tugs and his heart rate returns to normal.

In this unit, where infantile handprints are no larger than a half-dollar coin, nurses endear themselves to the young lives that reside within incubators.

Day by day, in 12-hour shifts, the nurses check monitors, give feedings, change diapers and care for the babies as if they were their own.

"We have a very high success rate for getting babies home earlier than most institutions," Samayoa says of the neonatal unit.

She stands, a ball of uncontrollable energy, and marvels at the room.

"We do a lot more developmental care than a lot of places," Samayoa says. "We assess when they're ready to nipple feed by the cues they give us. We don't push them."

They also involve the parents and basically allow them to take over the care.

"It's a pretty good setup. We're a smaller unit and we're able to give more personal care in a more personal level," she says in an upbeat tone. "We take the time to get to know the families and the babies."

A nine-month pregnancy

Rapier wakes up every morning and expects to be pregnant. The nursery, stocked with baby furniture and supplies, remains empty.

"I just felt like I didn't get through my pregnancy. I felt like I should be pregnant and when he wasn't there I'd think 'What's going on?' " Rapier says, a few tears forming in the corner of her dark brown eyes. "Everything changed and I wasn't ready."

Rapier, whose due date was June 16, never experienced her third trimester or felt her body change. She often wonders what it would have felt like to feel her son move inside her, and she doesn't know if she'll ever find out. She fears having a second child.

For a long time, Rapier, who is 28 but feels like she's 70, refused to accept phone calls because people kept asking about details and postpartum depression, she says.

"I didn't get to that point. I don't know what it's like to come home with a baby and have depression," she tearfully says. "And I just couldn't keep repeating the story over and over again."

Instead of a welcome celebration, she faced the risk of losing her son to an early birth and later, to heart surgery.

"I just about fell apart when I found out he had to have heart surgery," she quietly says. "Because he was so sick and his lungs weren't healing, the little valve in his heart that closes after they're born remained open. He needed the surgery. I knew then he was in God's hands."

The odds of losing her son were unknown because, Rapier says, this type of surgery rarely happens.

"The surgeon told me that if Sean bled, there was nothing they could do to stop it. What are the odds?" Rapier recalls. She then looks down at her son and smiles, a smile that seems to bring a ray of hope between them. And for some reason, at that moment, Sean opens his eyes, locks them with hers and smiles back. But just for a brief moment.

Rapier knows this is a sad place to exist. But she also knows she cannot go on this way forever.

"I just knew I couldn't break down. I can't do it for his sake. I had to go on for him," she says, with her son, now 3 pounds 2 ounces, in her arms. "I'm strong and I can handle it. But I thank God for my mom because without her I couldn't be this strong."

The twins

The neonatal unit at NorthBay seems to buzz on this particular Monday, when Stephen and Susan Cahoon are taking their twin daughters home after an 18-day stay with the unit.

From left to right, in this small pocket of the world, nurses are filled with smiles and celebration as two of their neonates are ready to experience their new life.

"Bri, your hat is all messed up," Susan says lovingly to her 18-day-old daughter. "Are you hungry? Are you nice and snug?"

Both girls, nestled comfortably in separate car seats and covered with blankets, give out a small yawn.

"We're ready to take them home," says Susan, who visited them each day, with a grand smile. "Yup, we're ready."

"Don't forget the reunion," one nurse says to the family as the couple leaves, each parent holding one daughter. The neonatal ward holds an annual reunion, where former residents of the unit and their families meet in a relaxed atmosphere of games, food and conversation.

It was 18 days ago when Susan delivered her twin daughters during her 33rd week of pregnancy. Alyssa weighed 4 pounds, 15 ounces while Brianna, or Twin B, weighed 5 pounds, 5 ounces.

Only one was born with fully developed lungs.

"I was given two shots of steroids to make their lungs mature, but Alyssa got all the steroids because she was under more stress, being Twin A," Cahoon says. "Brianna didn't get the medicine."

On Brianna's third day of life, she was intubated. A tube was immediately put down her throat and two doses of Servanta were given to help mature the lungs. Two days later, the tubes were removed.

For the remaining days, while Alyssa quietly laid in a separate crib, Brianna survived life with the help of nasal C-pap, tubes that forced air into her lungs. But it wasn't until the girls met three prerequisites that they were allowed to leave.

"They kept their temperature warm on their own, were breathing on their own and they each took their feedings," Stephen says of the girls. "They were stabilized. They accomplished their goals."

The Rapiers

It's Sunday and the weather outside is warm and sunny. Inside the neonatal unit, however, a quiet storm engulfs the Rapiers as they patiently wait for Sean's recovery.

"This is just all overwhelming," Daniel Rapier says of his son. "It hasn't sunk in yet."

He takes a breath as he watches his son in Regina's arms. Sean, seeming a little restless, frees his hands from under the blanket and places them behind his head. It's a habit inherited from his dad, Regina believes.

"As soon as he gets home, it'll all sink in, with me changing his diaper and waking up in the middle of the night," he says. "I just didn't get this experience that everyone else does when they have a kid. They get to take them home right away."

Again, another breath, a pause, a moment to think.

"I'm just thankful he's doing well," he adds.

On this day, Sean weighs 3 pounds, 5 ounces. But he still isn't ready to see his new home.

"Doctors tell me most babies go home three weeks before their due date, which puts him in the last week of May. But I'm not going to put money on it," Regina says. Her eyes completely gazed at her son. "Whenever he's ready, I'm going to take him home."

"It's been a long journey and I know it won't be over any time soon," she says, and softly closes her eyes.