Have Preemie, Will Travel (Eventually)

July 11, 2012

Little world traveler, 3 years old, in Brazil

Travel is not something you worry about while your preemie is in the NICU (unless, of course, NICU is far from home and you have to travel back at discharge). Bringing a preemie home, you get educated on germ prevention, hand washing and sanitizing, and keeping the baby away from crowds or even larger gatherings. You hear about Synagis shots, and how RSV may land your baby with fragile lungs back in the hospital. They tell you to limit exposure whenever possible. You get the picture, it’s best to keep the baby in a cocoon.

We were lucky to bring Daphne home in the summer. Her luggage included a portable oxygen tank, pulse-oximeter, and many, many medications. In the early weeks, we took walks outside and went to specialist appointments. We had the luxury of child care, so we never took the baby with us on non-essential errands. We hand-washed, we removed shoes when entering the house, we made it clear to family and friends that if they felt a hint of a sniffle, they were not welcome at our home.

Fall set in, and we stayed close to home. We took Daphne to visit family nearby for Thanksgiving, all her therapies were held at home. It wasn’t until her second summer that we first took her to a restaurant, a beach side seafood joint, where we chose to sit outside. Eventually, though, we did fly the nest. When she was almost 2 years old, we went to Brazil to visit my family. Daphne had been getting her monthly Synagis shots, and we got an all clear from her doctors before we traveled.  It was scary, but successful. Just recently, we returned from our second international trip with her.

Travelling with children with medical needs takes a lot of planning.  Weeks before the trip, I start a shared list with my husband where we include everything, from the essentials to the bring-if-there’s-room items. First, the gear: even though Daphne is three years old, we still rely on infant formula because of her kidney disease. When going somewhere where her formula is not easily accessible, we bring a few cans. Then, medication: she is on daily Human Growth Hormone shots, which need to be refrigerated and cannot pass through the airport  x-ray machine. Last, the “what if” factor: what if she gets a cold/ear ache/fever? We bring all her over-the-counter medications in the carry-on bag, and travel with emergency contact information for her doctors. Our amazing pediatrician and specialists make themselves available by phone and email whenever we are away.

Some of the preemie cleanliness habits come in handy while on trips. We carry little bottles of gel sanitizer, and make sure the children wash their hands often. I try to wipe surfaces and keep Daphne well hydrated. I hope I am not making it sound easy, because it is not. I get incredibly nervous in an airplane full of people sharing their germs, and I am terrified to forget something or to lose her medications.  Travel is a joyful part of our lives, and one day Daphne will look back at these family trips as part of a normal, happy childhood.