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Preemie Problems

Learn What to Expect and
How to Cope

By Katherine Bontrager

Smith agrees it's vitally important for parents to "parent" their baby in the NICU. "Because the baby may be extremely small, sick and connected to a lot wires and tubes, it's easy to assume the role of a bystander or visitor and leave the care of the baby to the nurses and physicians," she says. "But a parent's tender touch, gentle voice and participation in the baby's care are essential – both for them and the infant."

As part of this hands-on approach, Massaro says to speak up if you sense something is wrong. "Don't feel afraid to ask questions and get involved," she says.

It's advice that Rubinstein agrees with wholeheartedly. "You're the parent," she says. "You're your child's best and most appropriate advocate, so don't ever let a medical or educational professional talk down to you, dismiss you or brush over you. Push for all the services you can get: in the hospital, in early intervention at home, in preschool and school-aged education services. Articulate loud and clear what your child needs and deserves. Don't let them mollify you with 'This should be good enough.' It's up to you to demand as much as you can." She says to ask for information – as much as you need – and tell them if you need more or less than what they're offering you. "You know what you can handle," she adds.

And part of that process is learning to share the load with family and friends. "Share information, hopes and dreams with your families," says Rubinstein. "But don't let them exhaust you."

Rubinstein found that an effective way ofsharing news without spending hours on the phone explaining details was to empower her family with information. She found a book about premature babies that proved helpful for herself and her family. "I purchased one copy for me and one for my mom," she says. "As doctors would give me new diagnoses or order new tests, I'd find them in the handbook, call my mom and refer her to the text in the book. Then after I'd had the opportunity to assimilate the information, I'd be able to call her back and talk about it, and she had the background from the book."

Massaro acknowledges how daunting it can be to digest all the information thrown at new parents of preemies. "It's like learning a new language and the earlier you start to learn, the better," she says.

Want to see more?

• The Kangaroo Care Method: Safe, Gentle Bonding Benefits Preemies
• Breastfeeding a Preemie: A New Mom's Experience
• Decoding Your Preemie's Signals
• Talk about it!

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