'Beyond the NICU' helps babies, families thrive despite challenges

Sept. 17--With the help of a registered nurse who visits her home and is available day and night by phone, Tracy Williams was able to adjust the concentration of formula her baby received so the infant continued to gain weight.

"I don't have all the answers," said Williams, 28, mother of Triniti Walker, who was born 3 1/2 months' prematurely last summer at HSHS St. John's Children's Hospital.

That's where Katie Stauffer, a veteran nurse from the Springfield hospital's neonatal intensive-care unit, comes in.

"She's always my go-to person," Williams said.

A mother of four, the last three of whom were born prematurely at St. John's, Williams said she has peace of mind receiving services from Stauffer as part of a year-old program called, "Beyond the NICU."

The voluntary St. John's program provides home visits every few weeks or months at no charge to Sangamon and Macon county families with babies born prematurely who were cared for in the hospital's NICU.

About 50 families are being served by the program, which continues until children are 18 months old.

In the program, two experienced NICU nurses are paid to conduct the home visits and be available to babies' parents in between visits by phone, text and email.

The registered nurses, who are expert at caring for premature babies, track the youngsters' weight and development so feedings can be adjusted after the nurses consult specialists known as neonatologists at St. John's.

They also keep an eye out for signs of abuse or neglect and link babies with therapy services and provide quick advice for parents to avoid preventable visits to doctors' offices and hospital emergency departments.

"We wanted to extend our support beyond the walls of the hospital," said Dr. Beau Batton, chief of neonatology at Southern Illinois University School of Medicine and director of newborn services at HSHS St. John's Children's Hospital. "It's hard for me to understate the positive benefit this has had on families."

Modeled after similar programs in Arkansas and Texas, Beyond the NICU already has been shown to avoid health-care visits and potentially save money for the publicly funded Medicaid program that covers most births and post-birth care for children, Batton said.

But there are more positive aspects of the program, he said.

In addition to helping these families navigate the often-complicated medical system, Batton said the program's nurses work with parents to troubleshoot basic quality-of-life issues tied to economics and safety.

Most families in the program are headed by a single mother, and most of them are at or near the poverty level, Batton said.

A "big part" of the nurses' work involves "helping them get basic resources," he said.

Batton said he has been surprised at the level of economic desperation that families deal with. The program has been able to tend to some of those needs, he said.

Drawing upon the program's funding and donations from St. John's employees, businesses and organizations in the area, the nurses have made Christmas and Easter happier times of the year for the babies' families.

They have helped families avoid utilities being shut off and provided disposable diapers -- a huge expense for families that isn't covered by traditional assistance programs.

Older siblings of eight or nine babies in the program were found to be sleeping on the floor of their homes. The program arranged for free mattresses to be provided to those families, Batton said.

The nurses helped some mothers get counseling for post-partum depression. Others were assisted in getting themselves and their children out of "domestic violence" situations, Batton said.

By reducing emotional and economic stress on mothers, they can bond better with their newborn children. Studies are clear on the positive benefits, Batton said.

"If a mother bonds well with her baby ... that has tremendous developmental benefits for the baby and tremendous health benefits for the mother," he said.

Early attention to health care for premature babies, combined with a more stable and nurturing home life, can promote better brain development for these children, Batton said.

"The first two years can change the trajectory of a child's life," he said.

Batton spearheaded the program with $332,000 in initial three-year funding from HSHS St. John's Hospital Foundation, St. John's Hospital and Decatur'sHSHS St. Mary's Hospital.

Improvements in medical technology over the past 15 to 20 years have vastly improved the odds of premature babies surviving in the hospital so they can go home with the parents, he said.

Premature babies, however, remain more likely than other children to face physical and cognitive challenges as they grow.

To increase the odds of these kids reaching their developmental potential, health-care providers need to do more to help them outside the hospital, Batton said.

Beyond the NICU is offered to parents of babies served in the St. John's NICU who were born at least two months premature. Sangamon and Macon are the counties served because that's where 80 percent of NICU patients' families reside, he said.

Batton said he is looking for long-term funding for the program so it can be sustained and potentially expanded to a broader range of premature babies and a bigger swath of the NICU's service territory in downstate Illinois. Medicaid wouldn't reimburse St. John's for much of what the program provides families, he added.

Stauffer, 44, is Beyond the NICU's head nurse. A 12-year veteran of the NICU, she said her new job is rewarding because of the way she can intervene in children's lives and develop close relationships with parents at a stressful time.

"I'm there to help them. I'm not there to judge," she said. "Some of these babies that go home are very high-need."

Williams' daughter, Triniti, weighed only 1 pound, 4 ounces at birth and stayed in the NICU for 4 1/2 months. Triniti went home with a feeding tube and a tracheostomy tube that is a short-term remnant of the respirator that helped her breathe as a preemie.

Now 14 months old, Triniti probably will be weaned off the feeding tube and trach tube in the next year or two, said Williams, property manager for an apartment complex who is engaged to the father of her two youngest children.

For now, Triniti, who is covered by Medicaid, receives full-time nursing care at home, Williams said.

Triniti is a happy baby and loves to smile and clap, her mother said.

Williams' older children, also covered by Medicaid, are 8, 7 and 4. The 7- and 4-year-olds were born prematurely at St. John's and spent time in the NICU there.

Williams said she could have avoided several visits to the doctor or ER if the family had access to a home-visiting nurse for her two former preemies.

Williams, who never has been married, said she and her fiancé both have jobs -- he is a maintenance worker at the housing complex she manages -- but she said she has a house payment and car payment to make every month, among other bills.

The household, which includes her fiance's two children, ages 11 and 15, isn't what she considers middle class.

"I'm still drowning in debt," Williams said.

Even though she is experienced in caring for premature babies, Williams said she appreciates that Stauffer is available, whether it's for a problem dealing with health care or life in general.

"If I do need help, I can call her," Williams said.

Contact Dean Olsen: dean.olsen@sj-r.com, 788-1543, twitter.com/DeanOlsenSJR.

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