But part of Remy's legacy also will be passed on to children and families who never met him or his parents, Tim and Laura Arling. These babies, many in NICUs across the country, will get some of the 3,000 ounces of breast milk that Laura pumped for Remy, saved in freezers, and donated to the Mothers' Milk Bank in Austin after he died.
Newborn babies, on average, consume between 14 and 22 ounces of breast milk a day. Even at eight months, a child would only need 24 ounces of breast milk a day. Laura had easily more than a hundred times that much to give away.
"I did it for Remy," she said. "Breast-feeding was one of the only parenting things I could do for him."
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Laura Arling had a lot of time to think about her son coming into this world. Her water unexpectedly broke when she was 30 weeks along, and she spent the four weeks between Thanksgiving and Christmas last year on bed rest at Holy Cross Hospital in Silver Spring, Maryland. Because of the high risk of infection, she wasn't allowed any visitors besides her husband. The doctors wanted her to make it to 34 weeks, and planned to induce her Dec. 27.
But on Dec. 25, Remy made a surprising and relatively fast
entrance into the world. "Remy had his own way of doing things," Laura said.
Remy spent 10 days in the NICU before going home. He was feeding well, and at his two-week appointment, he was a pound over his birth weight, a good sign for a growing baby. But just shy of his one month birthday, Laura and Tim sensed something was wrong. Remy was having trouble feeding. His airways were closing; while taking a bottle, he turned blue and passed out.
The Arlings went back to the hospital, thinking it would be a brief stay. They hoped the visit would be a quick and quiet blip in an otherwise long and healthy life.
Remy never came home again.
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Remy was diagnosed with a "left pulmonary artery sling," meaning his left pulmonary valve wrapped around his heart, something Laura, a pediatrician, had only seen on medical school test questions, never in real life. The cardiologist at the NICU said this was the first LPA sling he had diagnosed. Remy also had a hole in his heart, which had been discovered in utero, though Laura and Tim thought they wouldn't need interventions until he was at least a year old, if at all.
At one month and one day, a cardiac surgeon at Children's National Medical Center in Washington opened Remy's chest to repair the hole and open the narrow valve pumping blood to his heart and lungs. The valve swelled shut, so Remy remained on the heart and lung bypass machine for three weeks. Blood and oxygen had trouble reaching his extremities, and Laura and Tim faced the reality that their son would lose parts of all four of his limbs.
"We kept calling it Remy's luck," Laura said. At one point, the bypass machine stopped working, and a team of specialists frantically did CPR while a new machine was hooked up.
Through it all, Laura kept pumping breast milk. Remy received a tracheotomy to breathe and a G-tube in his stomach for nutrition. With the machines connected to him, Remy wasn't able to breast-feed, but the nurses included some of Laura's breast milk in the formula and IV nutrition he received.
"Formula does a great job of growing kids, but they haven't figured out how to give a mother's immune system to a baby," Laura said. "Remy managed to not catch an infection the whole time on breast milk. He didn't catch a sniffle, he didn't get pneumonia. He never had a wound infection. I took pride in that."
She added, "You have a super immune system as a pediatrician."
Laura pumped eight times a day, around the clock. She kept a pump in Remy's hospital room so she could sit with him.
Kimberly Seals Allers, author of "The Big Letdown," believes Linda's instinct was spot on. Breast milk can be life saving for NICU babies.
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Remy continued to grow. He started to eat solid foods and tried to sit up. But in August 2017, as the Arlings prepared to take him home for the second time, he went into cardiac arrest, followed by a seizure. The brain damage was extensive. The Arlings knew then their son wasn't going to come home, ever.
Laura stopped pumping then, so she could spend as much time as possible with Remy. Family and friends, who had been discouraged from visiting the hospital because of Remy's weakened immune system, were welcomed, each taking turns snuggling him. He was held nearly every moment. A photographer came to capture the family together and the doctors and nurses all stopped by to say tearful goodbyes.
The month after Remy was gone was a haze. There was the funeral with the pews filled, some with people Laura and Tim had never met. There was a private burial in the same plot as Remy's grandfather, James, after whom he is named.
Julie Price, Remy's godmother, approached Laura with the idea of donating her breast milk. Laura didn't realize how much milk she'd accumulated. "I thought, most babies need breast milk, through a year. I figured with Remy's medical problems, he would need it longer than that." Laura had a freezer full of milk at home, in addition to milk in her sister and brother in-law's freezer, in Tim's father's freezer, and in the hospital fridge.
With Price's help, Laura and Tim selected the nonprofit Mothers' Milk Bank because it services NICUs, based on need. The Breastfeeding Center for Greater Washington, a short drive from their home, served as a drop-off point. On the one-month anniversary of Remy's death, after Laura passed the medical tests to be cleared as a donor, she packed the milk in coolers - their car filled so tightly that she had to squeeze in the back seat - while Tim drove downtown.
Tim volunteered to take the donation himself, but Laura wanted to see it through. "I thought I was doing it for Remy, and for other babies like Remy." As she stared at an empty freezer, the full force of what it meant to be giving this milk away hit her.
"I knew this was ending," she said. "Breast-feeding definitely helped me feel like a mom, in a situation where there were a lot of things taking that away from me. When you can't take your child home with you, you start to lose your identity as a mother.
"At the time, I never liked it," she added. "It's not fun or comfortable. It hurt for me."
But she's glad she did it: For Remy, and for the children who still may get the milk. Allers says donations like these allow all NICU babies to access human milk. Six states cover breast milk purchased from milk banks under Medicaid, but many do not, even for the NICU babies who need it most.
"With more donors like Arling, human milk can be an accessible option for more women who can't breast-feed, thus broadening affordable options beyond a mother's own milk or formula," Allers said. In times of crisis, from natural disasters in Texas to man-made disasters in Flint, Michigan, such milk donations can be lifesaving, even for non-NICU infants.
"In my saddest points in the first little bit [after he died,] I wondered, should I have pumped less?" Laura said. "I could have spent more time with him then."
But she doesn't allow herself too much time to dwell on what could have been. She acknowledges what parents everywhere wonder about their actions and their children.
"Knowing what I knew at the time, I was only trying to do the best I could for him."
(This story has not been edited by NDTV staff and is auto-generated from a syndicated feed.)
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