Scripps NICU cares for fragile, precious patients

The second floor of Scripps Memorial Hospital La Jolla houses 14 tiny cribs where infants that arrive into the world with some kind of challenge receive sophisticated care.

The unit is known as the NICU: the Neonatal Intensive Care Unit. Each tiny crib is fully equipped to provide life-saving care.

From the perspectives of both care provider and patient the NICU offers challenges and benefits.

For caregivers, the operational side can be unpredictable. One minute the unit may have three infants; another they get hit with admissions from the Labor and Delivery unit or other area hospitals.

It can also be challenging to convince parents that their baby will be O.K.

“We have the most important thing in their lives in our hands, and we have to make it O.K.,” said nurse Wanda Jordan.

“I would say most of our patients are either the near-term baby who has moderate respiratory distress … or we have the pre-term infants who strictly have pre-term lungs,” said Jane O’Donnell, M.D., medical director.

Some of the other conditions commonly seen in the NICU include congenital defects, jaundice, dehydration, pre-term delivery and multiple births such as twins and triplets. Treatment may range from medication and respiratory aid to specialized nutrition and other interventions.

Classified as a level two NICU, the Scripps unit is a joint venture with Rady Children’s Hospital. A third joint NICU is housed at Scripps Memorial Hospital Encinitas.

The upside, said staff members, is the privilege of caring for precious infants. It isn’t uncommon for nurses and physicians to get very attached to their tiny patients.

“You take this little baby that could not survive without us and send home a healthy baby,” Jordan said. “It’s the best job in the world.”

On a recent Friday morning, one couple, who asked not to be identified, visited their 12-day-old son in the NICU. The boy, delivered full term, was born with immature lungs, requiring an extended stay in the unit. They experienced the same scenario with their other son, now 22 months old.

It was an experience the parents never expected to repeat.

“It’s hard being here and it’s hard being away,” said the father, noting it is a 35-minute commute each way from their home in North County. “There’s definitely some feelings of guilt for not spending as much time with our older child.”

His wife echoed the sentiment, but she said her guilt arises from wondering if she could have done something differently to avoid their son’s hospitalization.

“I think my brain knows there’s nothing I could have done, but I can’t tell you that there’s not a part of me that feels guilty,” she said.

Guilt is a common reaction for many parents whose babies are admitted to the NICU, but in truth, parents face a melange of emotions: depression, self-recrimination, anger, jealousy, sadness, fear and worry.

For the boy’s mother, the disappointment that he was unable to accompany them home was crushing.

Her husband said he experienced a sense of “why us” whenever he saw parents and infants leaving the hospital together.

The couple relied on their parents to help out with their son at home and to serve as a communication conduit with friends and family. It provided them with a protective cocoon as they dealt with the baby’s health issues and their own needs, they said.

Recognizing the need to care for babies and parents, the NICU standard of care is family-based.

“They need someone to talk to them, to explain what’s going on and what to expect,” said Mary Coates, R.N. and unit manager. “I think it’s really hard when you’re expecting to bring home a perfect little package and you have to leave him behind.”

“I always tell my parents, especially the moms, it’s nothing you did and it’s nothing you didn’t do; sometimes these things just happen,” said O’Donnell.

Because some infants cannot be touched or held, bonding can also be a problem for parents. NICU providers have developed strategies to overcome this such as kangaroo care (skin-to-skin contact) and therapeutic touch.

Parent education is a significant part of the job for all NICU professionals. To empower parents, they teach them how to take vital signs and how to read different pieces of equipment.

Coates said this one-on-one teaching is one of the benefits of having a child treated in the NICU. Because many parents are first-time moms and dads or university students without a family close by, they really value this knowledge.

“Our goal is to send them home with the most knowledge possible to take care of that baby,” Jordan said.

Supporting parents emotionally is another element of patient care. Helping them cope with guilt and develop realistic expectations is just as important as the infant’s wellness.

NICU parents struggle with fatigue, stress, and for the mothers, hormonal shifts and a physical recovery of their own.

“Sometimes I don’t think they realize how hard it is,” Jordan said, adding that many parents need “permission” to go home and take care of themselves.

For families and hospital staff, the unit’s high rate of recovery and survival is the best thing about Scripps NICU. O’Donnell, who previously worked at Rady, said she sought out the job after losing seven infants in six days. Many of the nurses have experienced similar experiences.

“They want to send them home instead of sending them to heaven,” O’Donnell explained.” The reason we do what we do is so we’re here when things don’t go well … because there’s nothing easy about being born.”