Without resources, but not will, the mother-daughter Buddhists split hospital shifts, skipped meals, and shared a SEPTA pass so their "miracle baby" would not feel fearful or lonely as he fought for his life.
"Sometimes, the hospital secretaries would ask me, ‘How come you and Princess don't ever come here at the same time?' " Leah, 52, recalls in a singsong voice at their kitchen table in Tacony last week, beaming as her 23-year-old daughter cuddles Preston to sleep.
"I told them, ‘We can't.'?"
From bad to worse
Preston was born on Halloween at Einstein Medical Center at 28 weeks, weighing 2 pounds, 10 ounces. He was struck by abdominal agony 11 days later.
Doctors at St. Christopher's Hospital for Children diagnosed the newborn with necrotizing enterocolitis, a disease in which infection ravages preemies' intestines. Infants with a mild form recover when feedings are tapered. Others die within hours.
"It's almost medieval," says pediatric surgeon Grier Arthur, "like the bubonic plague."
Arthur was on call the day bacteria began wreaking havoc inside Preston's stomach, at the time about "the size of a coffee mug." An operation revealed so much inflammation that Arthur couldn't locate the intestines.
"Preston's belly was among the worst I've ever seen [in babies] that survived," the surgeon shares. "I told his mom he was probably at that time the sickest patient in the hospital, if not the city."
A month later, Preston endured a second operation to repair a hole in his intestines, only to have part of his colon removed. Arthur gave the baby a few more months "to grow and get stronger" before a final surgery "to put him back together again."
Two other NEC babies died during a hospital stay in which Preston suffered a collapsed lung and three bouts of pneumonia. But in a sign of his spirit, the infant whom nurses nicknamed "The Beast" removed his own breathing tube. Happily, he didn't need it any longer.
"Sometimes," says neonatologist Jane McGowan, "babies are smarter than doctors."
Food and a future
Princess and Leah joke that with such a mature name, Preston is already poised for professional greatness. Before he leaves for the Ivy League, the baby who until recently had never seen sunlight or smelled fresh air, has some eating to do.
In his first week out of the hospital, the novice chomper still attached to a feeding tube and IV (and under the care of a home nurse, the doting Summer Weeks) gamely tried peaches, bananas, rice cereal, and strawberry yogurt. The boy who came into the world the size of a butternut squash gained more than a pound in six days.
It could take months to safely transition from IV and tube feedings to taking food by mouth, McGowan says, "but in the long run, I believe Preston will live a normal life."
Mindful of a gas-shutoff notice and unable to afford an Internet connection, Leah resumed her fervent job search. Princess — inspired by the men and women who saved her son — hopes to enroll in a respiratory-therapy program.
Until then, she will baby her baby, taking Preston on long walks, comforting his cries with Bach.
"There's nothing more traumatizing than the possibility your baby won't live, that you gave him life but can't do anything to save that life," she explains. "I really couldn't be a mom in the hospital. Now, I can."
Contact Monica Yant Kinney at 215-854-4670, firstname.lastname@example.org, or follow @myantkinney on Twitter. Read her blog at philly.com/blinq.