NICU experience: Hope for the smallest patients

NICU experience: Hope for the smallest patients

“The birth of your children should be the most exciting time of your life,” says Veronica Blevins of Frisco, Texas. “Mine could easily have been the most stressful.”

The Angie's List member was admitted to highly rated Texas Health Presbyterian Hospital Plano 28 weeks into her pregnancy, and stayed there for about six weeks until she gave birth to twins, Samantha and Kathryn. Samantha weighed just 4 pounds, 15 ounces; Kathryn was 5 pounds, 13 ounces. Four days later, Blevins was discharged, but her daughters remained in the hospital another three weeks. “I went home when they were 4 days old. It was the hardest day of the whole ordeal,” she says. Those difficult days paid off. Now 18 months later, she can look back with confidence. “Samantha and Kathryn are doing really well — pretty much caught up for their age,” she says.

About half a million babies — 10 to 15 percent of all those born in the U.S. — end up in the NICU each year, according to the CDC. The March of Dimes reports that babies are most commonly admitted because of premature birth, breathing problems, infections and birth defects. Michelle Kelly, nurse manager of the NICU at Texas Health, says most of their patients are premature. “These babies can have setbacks ranging from infections, intestinal surgeries, lung disease and feeding difficulties,” she says. NICU teams help them by providing critical services during the stay, including medical monitoring, respiratory support, intravenous nutrition, oxygen therapy, antibiotics and phototherapy — a form of light therapy used to combat jaundice.

For those members on Angie’s List who report having to leave their newborns in NICU, that 
stay can last as little as one day, 
or as much as three months.
“The length of stay depends on the gestational age and any physical defect present at the time of birth,” says Dr. Antonio Santiago, an internal medicine physician on the NICU team at Texas Health. He says the average stay may be two weeks, but can extend up to six months or longer.

Member Andrea Buckley of Sioux City, Iowa, says her daughter, Maeby, was in the NICU for six days at highly rated St. Lukes Regional Medical Center. Maeby, who was delivered in March 2012, was fine at birth but suddenly stopped breathing 20 minutes 
later, Buckley says. The breathing incident, and concerns Maeby contracted an infection, led doctors to admit her. “They put her on antibiotics just to be safe,” Buckley says, adding that her daughter is now 17 months and thriving thanks to the excellent care from St. Lukes’ staff. “I knew the whole time what was happening.”

Diane Buss, director of highly 
rated St. Mary’s Hospital NICU in Madison, Wis., says no matter how long a baby is in the NICU, it’s always traumatic for families. “It’s emotionally challenging.” To help them through these times, most facilities offer a wide range of support services. “[We] make available case managers, pastoral care, child life specialists, lactation consultants, along with occupational and physical therapists 
to help [all] possible needs,” 
Buss says.

A social worker is also assigned to every family. “The social worker is trained to help parents cope with the emotional aspects of NICU and help parents obtain the information they need from their baby’s care team, and deal with the financial difficulties and stresses associated with a NICU stay,” says Dawn Schramm, a social and care worker at St. Mary’s.

Those financial stresses can 
be extensive. Joy Davis, a spokeswoman with highly rated Riley Hospital for Children in Indianapolis, says parents can expect to pay between $1,000 to $10,000 each day depending on services received. 
An average stay can easily hit $200,000. However, good insurance plans typically cover costs after meeting a deductible between $500 and $7,000.

Blevins’ bill was approximately $250,000 for the three weeks that her daughters stayed in the NICU. “Our insurance covered most of it,” she says. “[We paid] $6,400, which is our out-of-pocket maximum on our policy.” Buckley says Maeby’s six-day stay was $30,000, which her insurance covered entirely because the family had met their $5,000 deductible.

When the time comes for newborns to go home, the NICU team helps to make the transition easy for families. “The social worker will help parents make any special arrangements their baby may need at discharge, including follow-up care,” Schramm says.

That sometimes means introducing families to a new external care team, who will continue to help the newborn progress. Pediatrician Dr. Jeffrey Bobrowitz at highly rated Children’s Medical Group of Greenwich, Conn., 
says parents play a vital role 
in their newborn’s healthy development. “All kids require some after care,” he says. “The best advice 
is to pay attention to what’s going 
on. Be prepared to be part of the health care team. Your primary 
care doc is just meeting your newborn, and the more info you have, the better.”

Looking back on her experience, Blevins says that’s good advice. “My advice for NICU parents is 
to try to relax. The medical staff 
is highly trained to take care of your baby. He or she needs you to be the one thing the staff can’t be: their biggest cheerleader, advocate and parent. Focus on giving your child the love he needs to get stronger and
go home.”

— Additional reporting by Brittany Paris and Cynthia Wilson

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