Print Friendly and PDF
logo
divider
Written by:  Karen Lewis Taylor
Date: September 12, 2011

When Jennifer Mumford of Raleigh was hospitalized with complications in her second pregnancy, she worried about spending the remaining months on bed rest and how her daughter, then 2½, would handle her absence. What she and her husband didn't expect was that their baby girl would be born 10 weeks early, weighing only 2 pounds, 5 ounces, and spend the next two months in the neonatal intensive care unit, or NICU, at Rex Hospital.

"It was a shock," Mumford remembers. "I didn't ever think I'd have a premature baby."

An unexpected stay

For many parents of babies who spend time in special care nurseries, "shock" is indeed their first reaction, and such feelings of disbelief — and a wrenching fear — stay with them throughout their baby's hospitalization.

Newborns may be transferred to a NICU for a number of reasons. Premature births account for many admissions; other conditions include metabolic disorders, heart defects, chromosomal abnormalities, problems resulting from trauma during birth and complications requiring surgery. Respiratory difficulties are common. Some babies stay only a few days, while others are there for months. Some babies do not survive.

The Mumfords' daughter, Catherine, battled infection and was on a ventilator for several days during her NICU stay. "There were a lot of ups and downs," Mumford says. "It was really a roller coaster."

A source of support

Fortunately, NICU families are not alone during this difficult time. In addition to medical staff and hospital employees such as social workers, many Triangle-area families are assisted by coordinators from the Family Support Network, a statewide system of affiliated local programs that serve families of children with special needs.

Karen Hogan, FSN of Wake County program coordinator for the NICU at Rex, explains that parents of babies in special care nurseries face a range of stressors — from emotional to logistical to financial — during their baby's hospitalization.

Many parents worry about finding child care for their older children, about having to return to work, about how they'll pay for a prolonged hospitalization. Worst of all, Hogan says, "it's in the back of everybody's mind: 'What if I lose my baby?'"

Resources and community

Program coordinators such as Hogan offer parents a source of support, checking in to see how they're doing and what they need. They may provide parents with information about how the NICU functions, suggest resources for more information about their baby's needs, and make referrals to programs that will assist the family after their baby's release. Duke and UNC hospitals also have FSN program coordinators.

Hogan says she also works to help families remember that regardless of the difficult circumstances, these days with their baby are days to treasure. She often takes photos of "baby firsts," such as holding and feeding, and has the families gather in the lounge to make scrapbooks.

The FSN program at Rex also includes holiday celebrations, pizza nights and play sessions for siblings. A cart of baby-friendly books allows parents to read to their infants even if they can't yet snuggle with them.

"Having a baby is a special event, no matter what," Hogan emphasizes.

Continuing care

For many families, a stay in the special care nursery is the first part of a long — in some cases, lifelong — partnership with doctors and specialists as they care for their child. FSN works to provide information, support and community for these families even after they leave the hospital.

Affiliate websites include resources for families of children with special needs. FSN offers many programs as well, including "sibshops" for siblings of children with special needs. Families who have spent time with a baby in the NICU may also share their experiences of life during and after hospitalization through an online group created by FSN of Wake County, http://groups.google.com/group/nicu-families-of-the-triangle.

Mumford has stayed in contact with Hogan, hoping to use her experiences to enhance programming for other NICU families. Of particular interest to her is the parent mentoring program, where a new NICU family is matched to a "graduate" who can share experiences and offer advice.

"The support we received from family and friends is what got us through our experience, and I can only imagine what it would be like for [parents] without that kind of support," Mumford explains.  

Karen Lewis Taylor is an Apex-based writer and editor and the mother of two daughters.

This article was updated Sept. 26, 2011.



For More Information

The statewide Family Support Network (FSN) offers information, resources and community to families of children with special needs through its network of local affiliates. Find the FSN affiliate near you on the website www.fsnnc.org.

FSN recommends the following organizations to parents of NICU graduates who need continuing support:

*    March of Dimes  •  www.marchofdimes.com

*    First in Families  •  www.fifnc.org

For support and advocacy groups specific to particular conditions, see the resource list beginning on p. 25 of our Special Kids guide.

For support and advocacy groups specific to particular conditions, see the resource list beginning on p. 25 of our Special Kids guide.





print





Add your comment:



WIN GREAT PRIZES!



Check out our monthly prizes! Join in the fun. Your child could be a winner today!

TIP OF THE WEEK

Searching for family-friendly companies?

Learn who made the list of 2014 NC Family-Friendly 50 companies.