Scarlett has had her g-tube for nearly a month now. We have all adjusted to it pretty easily, though it has posed some new challenges for both her and us. Here's a run-down of g-tube life for Scarlett.
What it is: The gastronomy (g) tube is a feeding tube that is placed in the abdomen for direct access to the stomach. It looks like this:
The top part sits right on her stomach. The balloon is in her stomach, and is inflated with water from the little side port on the right. The top just pops closed, very similar to an inflatable pool toy. Her abdominal wall and stomach are in the process of healing into a tract (or stoma) that will stay open for a while even if the tube is removed - much like a piercing. When she no longer needs the tube, it can be removed, and the stoma will heal itself.
A lot of people ask us if it leaks. It doesn't really; yes, some drips of stomach fluid ooze out through the stoma, but we use gauze around it to absorb anything. It's not messy at all.
To use it, we attach an extension tube into the top, which attaches to a syringe of formula. The formula goes straight into her stomach, followed by a little water, and then we close the top.
|Scarlett's belly buttons
Better: Scarlett had an NG tube for a long, long time. It went down her nose and into her stomach, but did the same job as the g-tube. The g-tube is a big advantage to her. It eliminates the awful tape on her cheeks that held the NG in place; it only needs to be changed every 3 months, rather than every month, and it doesn't hurt to change; and, it is hidden under her clothes, so she can't really pull at it. She can still bathe, swim and roll around on her stomach. Since the NG came out, we have seen improvement in her perpetually runny nose, rashy cheeks and, most importantly but just slightly, her swallowing. We like that there is no more yellow tube to be pulled out in the middle of the night, or to leak all over our couch/cars/clothes/dog/bed/carpets, or to get caught on something when we pick her up. The extension tubes are detachable, so we just have to make sure we have one anytime we want to feed her (which means we have tubes in every bag, car, lunchbox and at Grandma's house, just in case.)
Not so great: Having the g-tube has made Scarlett even less fond of tummy time. She pretty much just lays her head down and whimpers. We're working on it in therapy, but she's just not quite able to hold herself off her stomach yet. They tell us it doesn't hurt (and it doesn't seem to) but she is very easily deterred from doing anything she finds unpleasant.
Another challenge has been dressing her. The tube it just above the waistline of most of her pants, but thick waistbands, like on jeans, rub against it when she sits up. We need easy access at least 4 times a day, so one-piece outfits are a hassle. However, since she is still spending most of her time on the floor or being carried, onesies are still the most practical. So, in my crafty-momma way, I found some solutions. For those onesies that had cute pictures on them, I cut the snaps off and hemmed them to make t-shirts. Since I usually dress her in layers, all the plain onesies are getting a different treatment: I am in the processes of adding welt pockets to anything that snaps or zips (using a pattern I found at Adapting Creatively). It works particularly well on BabyGap's Bodydoubles that have an attached t-shirt so that it is covered. This has been the neatest-looking, most accessible solution so far. We tried a few Tummy Tunnels, iron-on patches with holes in the center for g-tube access, but they aren't working as well for us.
The hardest part is really the most obvious: it's still a tube. It's still a really abnormal way to feed a baby, and it feels very strange to hook a tube up her whether she wants to or not (she still doesn't really indicate hunger, so we just have a set schedule). With chemo over, I am anxious to see the normal life begin, and this is the most abnormal thing we have. I see my friends battle their toddlers to eat, and I will admit there is a little part of me that likes to be able to feed her on a schedule, knowing she is getting all the nutrients, minerals, calories and water she needs...I just wish it wasn't by tube.