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Helping families navigate the NICU

Packard preemieEarly this morning, the baby girl that’s been growing inside me for 33 weeks decided to have a dance party in my belly. Not great timing, but it’s always a nice reminder to know she’s getting stronger every day and will soon be more than a pre-dawn percussionist in our lives. One of my biggest fears - as it is for many expecting parents - has been what might happen if I went into early labor or if something unexpected turns up when she's born and she has to stay in the Neonatal Intensive Care Unit.

Those days, waiting for a baby to be well enough to come home from the NICU can be exhausting and confusing. And there's often a lot to learn about the health issues many preemies suffer. So a new program at Stanford’s Lucile Packard Children’s Hospital, which admits 1,500 babies each year, aims to make that time a little less overwhelming.

The NICU Family Support Program was started last year and represents a new partnership between the hospital and the March of Dimes. The program is available at several hospitals nationwide and helps 90,000 families every year. Families gain access to print and online versions of educational materials to help them understand their babies’ health issues and treatments. A recent feature story describes the program’s holistic approach:

“We work very hard to take care of the whole family and not just the baby,” [hospital president Christopher] Dawes said in announcing the new partnership with the March of Dimes. “This program increases parents’ confidence and gives NICU staff the tools they need to support families and babies.”

. . .

“When you have a premature baby, you have to learn a whole new language. You are so inundated with terms, it’s easy to get mixed up,” said [mother of twin preemies Heather] Keller. “The March of Dimes website and written materials are a great reference that families can use throughout their journey. It’s accurate and written in a language that’s easy for families to understand, but is not complicated or condescending.”

In addition to the materials, the program offers iPads to NICU families, providing them with easy access to the March of Dimes materials and website without having to leave their babies’ bedsides.

The NICU Family Support Program is designed to help families become more involved in the care their young children receive. It’s an approach that can alleviate some of the burden parents of NICU patients feel at what is otherwise a harrowing time in their lives.

Previously: The year in the life of a preemie – and his parents, NICU trauma intervention shown to benefit mothers of preemies, Using the iPad to connect ill newborns, parents, Special care to protect newborns’ fragile brains and The emotional struggles of parents of preemies
Photo, of a Packard Children's patient and his mom, by Doug Peck

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