Baby, Please Come Home 16

Premature newborn Eliora’s birth and survival defied the odds.

Born on June 27, 2017, to Joel and Robin Schneider, Eliora became one of the Northland’s newest residents. While a full-term pregnancy usually falls between 38 and 42 weeks, Eliora was born at 21 weeks, six days. She is the youngest baby to be born and survive at St. Luke’s Hospital.

Eliora, or Ellie for short, weighed 14 ounces at birth.

Grab a can of soda at the next opportunity. Cradle it lightly in one hand. Ellie weighed two ounces less than that beverage. Now picture your thumb wrapped around that can.

“Ellie’s hand at birth was the size of my thumbnail,” Joel says.

Ellie’s premature birth – the labor only took five minutes – was a complete surprise to the doctors and the Schneiders. After all, Joel and Robin’s energetic two-year-old, Elijah, was born after his due date.

Not only was Ellie incredibly small and lightweight, her body and organs were not fully developed.

“She had not even developed fat yet,” Robin says.

Eliora’s spiritually-inspired name – a Hebrew word meaning “God is my light” – suits her.

A miracle is considered an extraordinary, surprising event in human affairs thought to be divine intervention. Joel and Robin are bound to each other and God by profound faith that has been deeply, repeatedly tested with Ellie’s birth. Her life nearly ceased several times during her first months. The Schneiders literally thanked God throughout Ellie’s enduring journey.

Specialized health care in St. Luke’s neonatal intensive care unit (NICU) also played a vital role to beat the odds in Ellie’s case.

A premature birth happens between 29 to 34 weeks of gestation. A micro-premature birth occurs at 28 weeks or less. The survival rate of micro-premature babies is slim. The 3B Level NICU at St. Luke’s Hospital on the Plaza provides care for premature babies at 22 weeks and older – a timeframe considered the minimum for a viable birth.

“At 21 weeks, there’s a one-percent chance of survival,” Joel says. “Ellie was only expected to live for minutes. She’s a miracle.”

Ellie’s early debut came with health complications.

“She has no major complications that would lead to cerebral palsy, autism, or life-threatening brain bleeds,” Joel says.

However, hyperinsulinemia prevents her from properly processing food. Ellie’s pancreas does not regulate her blood sugar level, resulting in excess insulin in the blood that affects her metabolism.

Her immature lungs also required intubation to ensure steady breathing. Ellie’s lungs are scarred from reliance on breathing tubes over a two-month period.

“She has less elasticity in her lungs than other newborns and she could be asthmatic,” Robin says. “It’s like she has smoker’s lungs without ever smoking.”

When Ellie weighed only one-and-a-half pounds at one point, she moved slightly and dislodged her ventilation tube. She stopped breathing and turned blue.

Robin and Joel were not able to hold their daughter for the first five weeks of life.

“Her skin was not ready to be touched,” Joel says. “The friction would rip her skin open.”

Post-birth, Ellie’s undeveloped immune system required her to be isolated for protection against a virus or bacteria that could lead to illness or death.

“She’s at high risk until she reaches two years of age,” Robin says.

Rituals that typically follow a birth – cradling a newborn, nursing, feeling the warmth of skin-to-skin contact – were delayed. Reaching those moments when it was safe became a milestone.

“Holding her for the first time after five weeks was terrifying and exciting,” Robin says. “I was crying. It’s scary because she’s so fragile.’

“During this preemie journey, you’re a parent but not feeling like one. You’re not able to hold her at first,” Joel says.  

By early November, Ellie had reached seven pounds. She continues to grow in weight and size. While this growth is promising, she has yet to leave St. Luke’s since birth.

“We have no projected date for her release,” Joel says. “We hope to have her home by Christmas.”

Ellie needs to maintain sugar levels. Then she can learn how to feed. She also needs to stabilize her breathing without oxygen support in a hospital setting, in order to ensure she can breathe while sleeping.

Because Ellie requires ongoing medical attention in the hospital, Robin won’t start her maternity leave until her daughter can come home. She went back to work as an administrative assistant for the Gladstone chief of police only a week after giving birth.

“I have no idea when I will be able to take maternity leave,” Robin says.

Vigilance continues as Ellie grows stronger. Meanwhile, the Schneiders have received immense support from family, friends, co-workers, and others.

“We’ve had support from our church with funding and cooked meals,” Joel says. “They help us stay strong and positive on this long NICU journey. Our faith has played a large role. With faith in God, anything is possible. We’ve had lots of opportunities to be discouraged.”

“It’s a sucker punch for a doctor to say that your baby is not going to make it,” Robin says.

She and Joel have heard this prediction more than once. Yet, Ellie’s triumph has made her a celebrity among the ranks of doctors and healthcare professionals at St. Luke’s. The bond with fellow parents of premature babies in the NICU is even more tight-knit.

“This whole experience has put us in a different group of people,” Robin says. “We’ve gotten involved with NICU groups and talk to other parents to give them hope. The NICU family is a tribe unto its own.”

Once Ellie leaves the hospital, the Schneiders face new challenges. Ellie will require high-level care. Her parents must also raise a son, maintain relationships with family and others, shop for groceries, and complete daily tasks with Ellie by their side.

“We are learning to live life after having a micro-preemie,” Joel says.

Ellie’s premature birth also created psychological and emotional impact. Robin suffered from post-traumatic stress disorder after the birth.

Seeing health care professionals in scrubs at the hospital, or hearing alarms and beeps at a restaurant that sounded similar to monitoring devices, triggered feelings of concern. Joel and Robin had to reassure each other when in settings away from the NICU.

Self-doubt also sets in.

“With preemie moms, or with those who have lost a baby, you blame yourself,” Robin says. “It’s no one’s fault. Not your husband or partner. It’s not because the mom was eating the wrong food or didn’t exercise. It’s not preventable.”

Robin credits Joel. “We’ve had to pull together as a team,” she says. “It’s not his fault. It’s not just about the mother. It’s hard on him, too. He’s not ‘just a dad.’”

Being able to hold Ellie for the first time, change her diaper, and check her temperature held special significance.

“When I heard her cry for the first time, it brought us to tears,” Robin says. “It helped us feel like parents.”

Joel says, “As parents, you want to do something for your baby girl.”

Together, Joel and Robin draw on faith, their circle of support, and the care provided by St. Luke’s. The Schneiders look forward to the day that they can finally bring Eliora home.