Insights and advice from NICU parents and professionals

by Katie Atherton

The armband identifying you to your baby's healthcare team, the empty cradle at home, the mess of tubes and wires surrounding your baby's incubator—all devastating reminders, "this isn't how it was supposed to be."

For parents facing the realities of a baby in the Neonatal Intensive Care Unit, every moment can hold new challenges. No class has prepared you, and no conversation can really make you ready. Survival becomes the main goal for both your baby and you.

Yet, looking back, veteran parents of the NICU often mention a new-found pride in themselves and their families. Take if from these parents and the NICU professionals: you can learn to survive and thrive in this trying time.

Understand Your New World

Before Madison Lopez was born, her mother, Amy Griffin, thought her baby's arrival at Good Samaritan in San Jose would be typical. But, weighing only 3 pounds when she was prematurely born at 33 weeks, Madison was sent to the NICU immediately.

Amy's plans radically changed that day. "I had the normal books you buy while pregnant, like 'What to Expect When You're Expecting,' but I quickly had to toss those aside," Amy says. Instead, she took a trip to the hospital gift shop, where she found books specifically written for parents of premature babies, and educated herself.

To keep it together, she devoted herself to the most important task in her new world—her baby's progress. "We decided to focus on small goals every day, like, how many ounces did she gain today?" she explains.

The minute you become a NICU parent, you also become part of the professional team that handles your baby's treatment. The more you educate yourself, the better you'll be able to work and communicate with that team—and the better you'll be at helping your baby.

"You are your child's advocate, so dedicate yourself to learning terminology, and dive in," says Roseville mom Haley Samblin. Her son, Hudson, was born with Spina Bifida, a birth defect in which the bones of the spine do not form properly around the spinal cord.

"The hard thing is that you're trying to deal with the emotional part of it, and you're stressed," she says. "That's when you need to slow down, and say to the doctors, 'We need you to say that again. I didn't get that, and I need to understand.' It's important for managing your own anxiety."

Participate in Care

"I saw my baby naked on the machines, and I just cried all day," remembers Jeannine Barrett. At 43 years old, she had placentia previa, and gave birth to her eighth baby by emergency C-section. "One of the nurses put her hand on my hand, and didn't say anything. That touch was all I needed.

"Nurses are nurses for a reason—they're all trained and competent to provide the best care. So, my advice to other parents would be: embrace [the NICU experience], because that's where the baby needs to be."

One of the best ways to things you can do, according to Rikki Nunn Bezzant, a NICU nurse at Santa Clara Valley Medical Center, is participating in rounds. "This is when the nurses, social workers, and the baby's doctor discuss the plan for care for the patient," she explains. "Try to be there, and ask questions when the team comes to the bedside."

Establishing a direct bond with your baby is equally important. Kathy Foley, an occupational therapist and neonatal developmental specialist at Mercy San Juan Hospital's Infant Developmental Clinic, suggests skin-to-skin holding, called kangaroo care.

She says this allows parents to read baby's stress and comfort signals. Additionally, the many benefits can include helping your baby gain weight, stabilizing your baby's heart rate, and it may help increase a mother's milk supply.

Kangaroo care, breast feeding, pumping, holding, nurturing and bonding can all be performed around the tubes and wires. And, nurses are happy to help you along the way.

"If all you can do is change a diaper, change the baby's diaper," suggests Emily Henton, a NICU nurse in Roseville. "If you don't feel comfortable doing something, ask for help! We love to teach you how to care for your baby."

Commonly referred to as family-centered care, most hospitals are making an effort to build confidence, comfort and knowledge in parents, who are now viewed as an equal part of the health team.

Embrace the Love

"Though the baby is the patient, the family is the real unit that needs assistance ... We're here to help them through these difficult times, so that they can be strong for their babies," says Dr. Robert Kahle, the founder of Mercy San Juan's NICU, which had 408 admissions in 2010. He notes that the vast majority of those babies not only survived the NICU, but did well in follow-up too.

Veteran parents agree: courage, strength and hopefulness will help both you and your baby survive and thrive. They assure that happiness is a realistic and attainable goal, because after the exhaustion and the exhilaration, they all have come to smile and laugh once again, as their children grow stronger day by day.

You, too, will eventually smile when something makes you happy and laugh again when something is funny. Take a deep breath, and give yourself permission to be human—a positive perspective can help alleviate your own stress, and a family's love can be a powerful recovery tool for your baby.

"Do not fear the invasive nature of the care, but embrace the loving environment that surrounds you and your baby," Kahle suggests. "All the dedicated professionals would not be doing this very difficult work if it were not for the love they have for the babies."

He adds, "Love your baby, have faith and hope."

Enduring the emotional stress of a baby in the NICU is difficult--muchless having to worry about transportationcosts or where to sleep at night. Friends of NICU helps families spend more time with their babies, providing support to parents through donations from the community.

916-276-0373 | FriendsOfNICU.org

The March of Dimes Foundation seeks to improve the health of babies by preventing birth defects, premature birth and infant mortality. Join the nonprofit's online community of NICU families at ShareYourStory.org.

415-788-2202 | MarchOfDimes.com

Click here to read our exclusive interview with Dr. Rober Kahle!