You guys are great, I’m so psyched to answer your questions. In fact, there were enough of them that I’m going to split this into (at least) two posts. And neither of them is going to be short… sorry.
I suppose not everyone reacts the same way I do, but for me, it’s important to be open about Ellie and the way she is fed. There’s nothing shameful about it, nothing gross or messy. Sure, I aim to be somewhat discreet when I feed her out in public, but it is never something that I hide from anyone. I figure, the more people know, the less of a strange, scary thing it will be. So I never mind when people ask me questions. On the contrary, you’ll probably get WAY more explanation than you ever wanted… And so, here begins this post.
First, let me start with the setup and the lingo.
[Disclaimer the first: if you’re on the squeamish side, this does include (totally not graphic at all!) photos of the hardware on Ellie’s belly. It gave me the heebie-jeebies at first, too, but I got used to it. So can you.
Disclaimer the second: this is not, by any means, a comprehensive tutorial on babies with feeding tubes. It’s the setup we’ve got, but there are a ton of variations in hardware, usage, and everything else. So if you meet another tubie baby, they might have something rather different.]
Ellie has what is called a Mic-Key button. That’s the piece that is actually on/in her belly at all times. It goes through a hole (called the stoma, which is not unlike a healed pierced ear at this point, except bigger) in her abdomen, which is on the left side of her belly, between the bottom of her ribcage and her belly button. It’s made of plastic and silicone, probably 1/2-3/4″ in diameter, and sticks up about 3/8″ from her belly. It has a short tube that goes from the surface portion into her belly, and is held in place by a little silicone balloon filled with about a teaspoon of water. You can read more about it here, if you are so inclined. Here’s what it looks like on a delightfully pudgy toddler:
It’s a lot less permanent-seeming as I imagined it. It can spin around freely, and is really just held in place with the tension of that little filled balloon. The button itself needs to be replaced a few times a year – the balloon can spring a small leak, or the valve that keeps the formula from coming back out of the tube can get a little leaky. That’s something I do at home, and while it FREAKED ME OUT at first, it’s conceptually very simple. You just deflate the balloon in the old one, pull it out. Put the new one in, inflate the balloon. Takes no time, but there’s still the heebie-jeebie factor of the hole in the stomach. Oh well, we got over it.
We typically tape it down with some gauze every day. It’s not the prettiest setup, but we like it. For one thing, because it’s not a completely sealed system, it can leak just a tad, so this keeps clothes clean. But more to the point for us, we like that it keeps the button a little more stable, and a little more subtle a protrusion on her belly and therefore less likely to be yanked, either by small curious hands or some accidental brush on something. Nearly every tubie family has a story of a kid yanking their own tube out – thankfully we don’t… yet.
Anyways, when it’s time to feed Ellie, we first attach a length of tube called the extension to her button. It’s about a 12″ piece of tubing that has a little jack on one end that connects to her button, a white plastic clamp in the middle for when you need it to be closed/clamped-off, and two ports on the other end. The larger port is the one that gets used for feeding, and the little one is for smaller plastic syringes that you might use for medicine (like the ones that come with infant ibuprofen – good for tubie babies, too!). Sometimes the stopper on the little port gets accidentally kicked open, and we end up feeding the floor or the bed instead of the baby. I think every tubie mama has done it from time to time, and it’s just as awesome as you imagine it would be. Alas. The extension can be easily rinsed out with tap water, and is typically used for a week or two before it gets a little gunky and you throw it out and get a new one.
Her formula goes into a plastic bag with a long piece tubing attached, which they call a feeding set. You have to prime the feeding set and the extension, filling the tubing up with formula or water before you start feeding her. Otherwise you pump air into her belly, and nobody likes that. The red piece at the end of the tubing is what gets plugged into the extension. We use a new feeding set every day.
Then there’s the pump. We have the Enteralite Infinity pump, though there are others on the market. The tubing from the feeding set gets put through the mechanics of the pump, and then you can set the rate and dose on the pump. It works quite well – it was easy to gradually ramp-up the speed of her feeds, but not make such a dramatic change that it might bother her tummy. But you don’t have to do the math on how long it should take to feed a particular amount of formula, because you just set the “dose” and it stops automatically when that amount has been dispensed. Easy peasy!
While we do have a collapsible IV pole that all of this can attach and hang on to, we also have a small backpack that makes the whole thing quite portable, and that’s what we use most of the time these days. Older kids might carry the backpack themselves, but M put a piece of velcro tape on ours, which means I can hang it from practically anything. Stroller, carseat, chairs, cribs, whatever.
All of this stuff came to us from a medical supply company, and I have to place a refill order every month. They send us extensions, feeding sets, formula, and miscellaneous stuff like extra plastic syringes for flushing the extension with water, or the tape that we use for the gauze on her belly.
Alright, that’s the basic setup, as best as I can explain it. Did this put any more questions into your head? Ask away and I’ll try to answer in the next post!