Tube feeding and traveling with a baby

August 10, 2015

Having a barfy baby in public will quickly make you understand who nearby is a parent themselves. Being parents of a child who eats by tube feeding (which aggravates reflux), we have had this experience often.

One memorable moment was two years ago when we stepped out of our rental car and walked in to a truck stop carrying our son, whose shirt and pants were covered in prune-colored vomit. As soon as the clerk saw us, she grabbed three towels, escorted us to the shower room and unlocked the door and told us there would not be a charge for it.

Traveling with an infant or toddler is stressful. A baby with preemie issues compounds that stress with his or her complicated needs and additional supplies. At home, we had quit feeling bad when some barf hit the carpet, saying “whatever, we’ll rent a Rug Doctor later.” And when we did, we felt great joy in clean carpets — for a day or two. On the road with a tube-fed baby, messes and supplies are much more difficult to deal with. Over time, we came up with a checklist of things we had to have to come. I’ll get to that in a minute, but first a little explanation about why tube feeding is necessary:

Babies begin to suck amniotic fluid and suck their thumbs in the womb around the 30th week of gestation. If they’re preemies, this is interrupted, especially if they have a ventilator or CPAP mask in the way of a pacifier or bottle. Gabriel did show interest in feeding by sucking (rather than the tube down his throat), but he never got close to 100 percent. A month after his term day, he went to surgery to receive a gastric tube. This was frustrating to us as we were sick of seeing tubes attached to our child, but it allowed us to go home.

Our first winter, we did not go out much with our son as we were terrified of respiratory syncytial virus (RSV), but once he was a year old, we did make trips to other states to see grandparents and great-grandparents. Here is the checklist we have developed:

1. Bucket bib. The idea behind this thing is to help catch spills while a child is drinking. We used it as a barf-catcher and recycler. That is, when he would barf while a feed was in progress, it would go in to the bib, we would pour it back in to the feed bag on the pump and try again. Were you able to read that without getting grossed out? If so, you might be a tubie parent.

2. Breastmilk bags. We found these to be great for traveling with pureed food because we could freeze them and then stack them on each other in a cooler more easily than cups. We also found we could cut out a corner from the bottom of the bags and then squeeze the puree directly in to the feed bags. (They’re also good for breastmilk, but he was on blenderized food when we made our first trip.)

3. Full supply of pump bags. The feeding pump came with sets of bags that could be used for 24 hours before having to be replaced. These were shipped to us from the medical-supply company monthly, so we had to call to ask for more to make sure we would have enough of them on the day we left. Also, we asked them if they could ship supplies to a location other than our home in case luggage got lost.

4. Paper clip. We used it to dig out stuck particles of food that could clog a particular spot in the feeding tube as the feeding pump yanked on it.

5. Figure out cooler time. If you’ve got 14 hours to the next freezer, that might be a problem. We sometimes had to stop to reload with ice.

6. Make extra time for airport security. The Transportation Safety Administration also has a Web site and help line called TSA Cares, that helps people with disabilities and medical conditions get ready to fly. The number is 1-888-787-2225.

7. Call host to ask about their blender. Of course they’ll let you use the blender. “Is it noisy?” we would ask. “Not too bad,” they would say. “Oh, that won’t work, then,” we would say. Noisy blenders capable of obliterating strawberry seeds are a necessary part of tubie life. If someone had a Vitamix or a Blendtec or similar blender, that could greatly reduce the amount of food to pack in advance.

8. Make a list of special ingredients and find out if the local grocery stores have them. For our son, Trader Joe’s full-fat Greek yogurt was a magical food in that it stayed down ok and was very high in calories. If we were traveling somewhere without a Trader Joe’s, we had to pack a separate cooler just for yogurt.

Finally, be glad that you and your child are getting to have some new experiences. One of the best parts of going on family trips with our son was his cousin, who is a month younger than he is (but born at term). She’s more advanced developmentally, so Gabriel would watch her eat with a spoon, and… (thank God) imitate her!

Dad and baby resting in motel room

Daddy’s not ready to get up in the motel room, but Gabriel is planning his next vacation day.