Special Needs Sunday: Clothing kids with g-tubes

Photo by phrenologist

I’ve gotten several requests for information about what kind of clothes we dress Jenna in to accommodate a g-tube.  For the most part, we dress her like any other kids, but there were plenty of times, especially after she first got her g-tube, that I came home from shopping with some beautiful things that I quickly realized were not ideally suited for easy g-tube use (one piece knit outfits, for instance).  We have made a few, occasional clothing modifications and have learned a few things from trial and error, so I’ll share those with you.

I already mentioned that we use zipper pajamas and simply cut a hole for her tube to come out.  We haven’t had any problem with the fabric fraying or tearing in the length of time she wears them before outgrowing.  When she was an infant, we looked for snap pajamas and had the tube come out between the snaps.  We briefly tried two piece pajamas with tops and bottoms, but the pants fell right off our little skinnykins.  Two piece pajamas with snaps at the waist were wonderful (pants stayed on!), but unfortunately relatively hard to find.

Tee shirts or blouses with jeans or knit pants are an obviously easy choice, because you can sneak the tube under the shirt without having to modify anything.  Our problem has always been that pants do not stay up well on Jenna.  Because she wasn’t even on the weight charts, you can imagine her stick-likeness.  No hips or butt equals nothing to hold pants up (oh, to have such a problem myself!).  I have a crafty aunt and mom who did a lot of altering for us to help pants fit, and, in the summer, we found that infant sized pants had smaller waists that worked as capris or shorts.  We went through a “phase” where the waistband of separate pants rubbed and irritated her g-tube, so we dressed her primarily in coveralls and dresses.

With coveralls (yes – they make “girly” ones, but we also used plain, “boy” ones), the tube can easily sneak out the side at the waist.  Dresses work too, but sometimes need modifying because when you run the tube out from under the dress, part of it is pulled up in a not-very-“lady-like” fashion.  If the dress has buttons or snaps in the back, you can sneak the tube out there.  If there are no buttons or snaps, you can modify the dress like we do pajamas – with a small slit in the waist, side or back. 

When Jenna was an infant, we quickly decided that depsite their popularity with humanity in general, onsies were not ideal for us.  It was too big of a hassle to thread the tube out through the onesie leg.  When we DID put her in onesies, we learned to leave the crotch snaps undone whenever possible so we could get to her tube more easily.

We haven’t ever modified swimming suits, because we just don’t hook her up to her feeding pump when she’s in it, and the suit goes over her “button” just fine.  If you needed to, I would guess that you could easily cut a slit in the swimsuit to accomodate the g-tube because it would most likely be made from a fabric that wouldn’t fray or tear.  Same for dance leotards or other similar, stretchy bodysuits.

Finally, a couple additional clothing “tricks” I have learned would be to fold the waistband of her diapers down so they don’t rub against the g-tube site and irritate it, and to unsnap and/or roll down the waistband of separate pants (especially denim jeans with heavier fabric) down when she is sitting for a long time like on long car trips, again, to help limit any irritation.

I don’t feel like any of this is any kind of profound advice, but maybe there’s a tidbit of useful information in there that will help someone.  What we’ve struggled with the most has been how to keep her untangled from the feeding tube during overnight feeds when she’s tossing and turning in her sleep.  I don’t know how many times we have been awakened in the night to either an alarming pump that has become disconnected or a screaming baby who is soaking wet because the tube came disconnected or because she is hopelessly tangled.  Ugh.  Maybe that’s a post for another time….