Hellobee

When I learned that D was going to get a feeding tube, I assumed that I would learn all I needed to know from the nurses at the NICU. After all, he would have recovery from the feeding tube insertion surgery at the hospital – I should just continue what they were doing at home, right? Wrong!

Hospital life is very different from home life (which is so blatantly obvious in hindsight). The hospital seemed to have endless disposable supplies, while at home, our insurance limits the supplies we get. In the NICU, the babies are too little to be moving around and causing chaos, so once D became mobile that was the beginning of a new chapter for us! As of next month, D will have been completely home for a year (woo hoo!) and I wanted to share my feeding tube accessories and gear preferences. Us “tubie” parents may be few and far between here on HB, but I wish I had found a guide like this when I was desperately googling in the early days!

1. Cloth button covers – These are little washable cloth circles that go around the G tube site. They replace the little cut-out gauze (or expensive pre-cut specialty square gauze) that the hospitals use. These absorb little leakages around the tube so that your tubie’s skin stays dry and infection-free. I like the ones from this shop and this shop in particular – but if you’re crafty you could make them! When we switched to these, I stopped having to give his tube site any extra attention, whereas before I had to clean it thoroughly and put special lotion. I just pop a clean one on every day, and I recommend getting several sets so you never run out.

2. Cloth line covers – I’ve only found one shop on etsy that makes these little oval snap things, and they’re great! These ensure that the line stays plugged in and the med port stays closed – saving you from accidentally feeding the bed (or the carseat, etc). We lost ours and temporarily resorted to using pressure tape, but that was a big pain to wrap and unwrap at night since we string the line through the crib slats, and have to detatch it temporarily to change his diaper. So I just bought some replacements. Again, if you’re crafty, you could make it yourself. The older your LO gets, the more likely they are to try to pull the port apart – trust me on this one!

3. Medical tape – We tape the extension down on D’s tummy. This helps prevent the line getting pulled out, or at least forces whatever is doing the pulling to have to exert enough force to pull the tape off first! They never did this in the hospital because again, he wasn’t mobile, so it didn’t occur to me until much later (after all of us had pulled D’s tube out!). We get hy-tape from our insurance, but I had to request it specifically. You may have to experiment to find a type that doesn’t irritate your LO’s skin – we also alternate sides to give his tummy a break.

4. Feeding tube backpack – If your tubie is not mobile, get one that you can wear (our insurance gave us one). Once they’re mobile, get (or make!) one small enough that they can wear. There are lots of options on etsy, but most are geared towards older kids. Goodbye IV pole (although we still use it at night)!

5. Heavy duty bed covers. Oh how I wish I just stole (ahem, borrowed!) these from the hospital when I was still admitted. They’re not too expensive on Amazon at least! I don’t think the typical baby ones could handle a full bottle being dumped on them (which has happened to us before, when a port opened and D didn’t wake up until hours later, soaking wet!). These ones are too short, so I use two to completely cover the crib mattress.

6. Bottles with caps attached – I divy the formula up into bottles in the fridge. D gets the bulk of his formula overnight, and it’s more convenient to bring a bottle upstairs and then just wash the empty one out, instead of running a pitcher back down. These are also great for throwing in the diaper bag (for his daytime oral rehydration solution). I used to use my old medela bottles, but since I never needed the nipple part, the nalgenes are more convenient with the attached caps!

7. Formula mixing pitcher – Chances are, your tubie takes formula. Even if they’re on breastmilk, this is great for mixing in medications or vitamins. Formula is good for 24 hours, so I just make a big batch once a day – saves so much time!

8. Ice packs – I keep an ice pack in his bag overnight so the formula stays fresh longer, and I don’t have to continuously top it off. D doesn’t care about the temperature! Unzipping his backpack to take the ice pack out to play with it has become his favorite morning activity.

9. Carabiner clips – These are great for clipping the backpack in places where your LO can’t wear it, but it needs to stay upright, like in the car, in the stroller, in the highchair, taking a nap when you don’t have your IV pole, etc. I sewed one on D’s backpack and keep a couple in the diaper bag just in case. I’ve even clipped it to my belt loop before, when running around for appointments!

10. Alcohol wipes – In the hospital, if the end of the bag (or the extension or something) fell on the floor, they would throw it away and use a new one. Unfortunately, I don’t have that luxury – we aren’t sent any spares. I keep handfuls of the little alcohol wipes everywhere (and in his backpack) so I can quickly sanitize whatever I need. If D has a poop-splosion which goes up to his g tube (it’s happened many times!), I use alcohol to clean around his tube site as well, to be more thorough than baby wipes.

11. Onesies – Even with the tape, I feel that a regular shirt provides too much access to the tube, for it to get pulled or snagged on something. I always stick D in a onesie (now that he’s older, as an undershirt). He’s already in 24m size; I hope I can find some bigger ones when he grows out of these!

12. 2 piece pjs – I had so many hand me down one piece zip pjs from K which I loved, but I sold them all! The zipper forces the tube line to come out by the neck, which I think is more of a strangulation hazard. If I don’t stick a onesie underneath, I just use a LOT of tape to secure the extension firmly to his body!

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Tubie moms and dads (or nurses/docs) – what have I missed? Any tips to share? Especially those of you with NG tubes, there are probably some substitutions for this list!