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In the season of faith, family’s wish comes true

Stricken infant goes home from hospital at last

Raymundo Pena-Rodriguez smiled as he gazed at his mother, Lizmarie Rodriguez, who was grateful to have her baby in her arms, and home. Raymundo Pena-Rodriguez smiled as he gazed at his mother, Lizmarie Rodriguez, who was grateful to have her baby in her arms, and home. (Joanne Rathe/Globe Staff)
By Sarah Schweitzer
Globe Staff / December 25, 2009

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The walls of Ray Ray’s home nursery were decorated, his dresser drawers filled with footed pajamas. But there was no crib, because five months into his young and uncommonly vulnerable life, his battery of doctors at Children’s Hospital Boston had been unable to tell his parents when he could go home.

They spent nights in Room 820 in a periwinkle chair that folded into a hard bed, watching nurses hook Ray Ray up to a continuous drip of high-calorie formula, patting his back to calm a cough that sounded like a kitten’s mewl, watching the labored rise and fall of his chest, dusky blue from a blood stream with too little oxygen. News from doctors was rarely good, a steady flow of new problems and a dwindling number of solutions for his ailing heart.

So his parents, Lizmarie Rodriguez and Raymundo Pena, were steeled for disappointment, ready to hear no. But they would ask his doctors anyway - could Ray Ray come home for Christmas?

“We weren’t expecting it to come out perfectly fine,’’ Rodriguez said. “Because nothing comes out perfectly fine on that floor.’’

Guarantees are a hard thing to come by in the crucible of the cardiac unit of Children’s Hospital. Setbacks can bring despair. So can false expectations. But if Christmas is the season of faith, nowhere is it more evident than a place like this, where the hardest cases create a unique brand of faith, born of resiliency and realism and a belief that it’s important to keep on, because every day with a child is a good day.

Nurses and doctors say they don’t see it every day. Even the hardiest souls stumble in the setting, a place devoid of privacy where hospital staff come to know parents’ habits and ways, their sleeping positions, their coffee preferences, the smell of their shampoo. For the parents, there are the signs of trouble around every corner: nurses and doctors rushing down hallways, crowding into rooms, machines beeping, babies crying.

Rodriguez and Pena have occasionally, inevitably, slipped from fatalism to pessimism.

“Doctors would say he could go home in a week, and then it was, ‘Sorry.’ And then they’d say he could go home in a month, and it was, ‘Sorry,’ ’’ said his father. “After a while, I just stopped asking.’’

“I remember times when his mom would say, ‘I don’t think I can handle this,’ ’’ said Marcy Lamonica, Ray Ray’s chief nurse. “But then, when he was connected to all these machines in the ICU, she was still there talking to him, holding his hands. And I remember her saying, ‘You know Marcy, I don’t know how long we will have with Ray, but I am going to enjoy every moment.’ ’’

Rodriguez, a massage therapist, and Pena, an auto mechanic, are 2008 graduates of Hyde Park High School and were teenagers when a routine ultrasound revealed that the pulmonary valve in Ray Ray’s heart had not formed. A rare and potentially fatal condition called pulmonary atresia, it meant no blood could go from his heart to his lungs to provide him with oxygen.

“A lot of people were saying that he would never make it, and that if he does, he would have a lot of problems, and they wanted us to make decisions,’’ Rodriguez said. “I talked to my dad. And he said, ‘It’s up to God. God wanted him in the world, if he wants him back, he can take him back.’ ’’

On July 21, Raymundo Pena-Rodriguez was born at Brigham and Women’s Hospital, 7 pounds 3 ounces, with his mom’s cleft chin and his dad’s light brown eyes. Immediately, doctors whisked him to Children’s for placement on a ventilator, and a week later, he underwent surgery that placed a shunt between his aorta and pulmonary artery to permit blood to flow to his lungs.

But complications arose. His heart pumped too much blood to his lungs, requiring an additional surgery to insert a clip on the shunt. Then his heart pumped too feebly, so that parts of his body did not receive adequate blood supply. His breathing remained labored. And at times, even predictable frustrations, the banal irritants of an infant, would cause a crisis.

“He’d lose his binky, and he would work himself up,’’ Rodriguez said. “He’d turn purple and his heart rate would go up and he’d have trouble breathing.’’

For four months, Ray Ray bounced in and out of the intensive care unit, one or both of his parents constantly at his side. Then, as some signs of stability emerged - steadier breathing, weight gain - doctors discovered high blood pressure in Ray Ray’s lungs. They determined that some of his pulmonary veins had narrowed, a finding that meant additional needed surgeries might not be possible.

“I realize we might not have forever with Ray Ray,’’ Rodriguez told Lamonica.

Which was when they decided to push to have doctors permit Ray Ray to come home for the holidays. Doctors were reluctant. Ray Ray required 24-hour care, with medicines administered every two hours and feedings every three; his feeding tube was a complicated apparatus that required an emergency room visit if it became dislodged. But his parents pressed on.

Last Friday, they got permission from the person who could give it.

“I caved because if Lizmarie really wanted to do this and take on so much responsibility, then I feel fine with it,’’ said Rebecca Beroukhim, Ray Ray’s primary cardiologist.

On Monday night, as the malls were packed with frantic 11th-hour shoppers, the young parents drove to the Braintree Babies ’R Us and picked out a cherry wood crib that converts to a toddler bed.

“So he can grow into it,’’ Rodriguez said.

The following day, at 6 p.m., after his hourlong feeding through a tube had concluded, after nurses had read off a multipage discharge report explaining his cocktail of medications and his string of follow-up visits, after a bag of syringes and a prescription for Methadone, to aid his withdrawal from sedation, had been shoved into the bottom of Ray Ray’s never-used stroller, and after five months’ worth of belongings packed into blue garbage bags had been placed on a cart, Ray Ray was unhooked from the heart monitor.

“Freedom,’’ his father said.

Pena threaded an oxygen tube through the neck of a red-and-white onesie and tugged the oversize fabric over his son’s scarred chest. Nurses cooed over the Santa faces on the boy’s toes, and Ray Ray looked out at the faces, his eyes taking in the scene from between the brim of a red Santa hat and a round green pacifier.

“He has these eyes,’’ Lamonica said. “It’s like they speak to you, like he’s telling you a story.’’

Then it was time to go.

“Put his coat on, and we are leaving,’’ Rodriguez said.

Ray Ray was bundled up. As the entourage made its way down the hallway, tinsel-colored balloons bobbed from the cart, bumping the elevator ceiling and blowing in the wind outside the hospital as Ray Ray was loaded into the backseat of a Ford Explorer. Slowly, the SUV rounded the hospital driveway and pulled onto Longwood Avenue, headed home, a place Ray Ray had never been.