Another UCD mama found this article awhile ago and I'm so glad she shared it. Here is the link:
What it is like to have a child with a feeding tube
To read about why Luca needed a g-tube in the beginning, you can read this post.
When her geneticist talked to us about her possibly getting a feeding tube, we were apprehensive. Some UCD parents opt to use an NG tube (a mini tube that goes up the nose, into the gut). He explained that often they do this to avoid having to get a g-tube - but he also explained that ultimately, the majority of them end up coming back months later to have the g-tube inserted. We went over the pros and cons, but ultimately decided to go with the g-tube because Luca, at just 2 weeks old, was already yanking the NG tube out of her nose (and giving her nurses more work by having to insert it over and over again).
We were nervous about it. A hole in our baby's stomach? Ew. And freaky! But when she came out from the procedure and we saw her belly, it looked so neat and clean on her cute little belly. Here it is (a pre-transplant photo):
Then, we had to get used to it. The first time it yanked out, I'll admit that I freaked out a little bit. And the first time we had to change the button (which basically means just take the gtube out, and insert a new one), I was TOTALLY freaked out.
And I'm sure you're wondering what that's like. So here is the analogy her GI doctors used: it's like an ear piercing. Except for an ear piercing, there is a little backing to keep it in place, for Luca, there's a little balloon with water that acts as the backing. So you take the water out of the balloon using a syringe, then you take the earring out, put a new earing through the hole, and fill the balloon back up. Easy peasy.
And in hindsight, getting that gtube was the best decision. Luca is still not interested in eating by mouth. Why? Well, we know she gets hungry now (we can hear her belly growling sometimes) so we know she should be sensing hunger. But imagine that you never wanted to eat, and then all the sudden sense hunger. Oh, and add in that it's been a long time since you've filled that hunger by eating. She is confused? As if that isn't enough, she's been ventilated, had her mouth, lungs and throat suctioned, been given medicines by mouth, etc. She's had a lot of bad experiences with things being in her mouth - it's no wonder she reacts negatively when we try to feed her. Besides the fact that Luca is still not interested in eating by mouth, the medications are a breeze to give to her. And she takes a LOT of medication. It also has its perks: she does not wake up at night to feed because we pump food throughout the night. We do not have to wake her to take meds.
She can take baths with it, she can even swim with it as she gets older.
These are her current medications. This is majorly reduced from when we first came home post-transplant. One by one, we're eliminating a medication. But it's a very slow process. Keep in mind, this excludes the one IV med we give her every 8 hours, and these are the meds from 8am to 8pm (we also have more meds to give at 10pm and midnight).
I think it is the hope of every parent (of a child with a g-tube or feeding tube dependent) that one day, your child won't need the device anymore. And that is our hope for Luca. We hope that one day, feeding will just click for her. But for the time being, we are so grateful she has something that makes us easy to deliver nutrition and medications.
Do you have any questions about feedings tubes?