Next week is feeding tube awareness week! I'm putting together a blog post but wanted to crowd source to see if there are any burning questions or lingering curiosity the hive may have about D, his feeding tube, and the mysterious life I live 
If any tubie parents have cropped up since I last asked, please introduce yourselves! 
blogger / pineapple / 12381 posts
You could talk about dressing a child with a g-tube-- especially challenging for little guys on continuous feeds.
blogger / pomegranate / 3044 posts
@Mrs. Jacks: hmmm.. is it challenging? I would think to just throw on a onesie underneath regular clothes or pjs and a feeding backpack would cover it. Maybe I'm too used to it to examine it objectively haha
pomegranate / 3275 posts
I think I met a mom who has a little girl who has a feeding tube, the little girl is 16 months old, and everyone kept commenting on how small the LOS was. Like, every 5 minutes someone different said "she's so tiny," and I began to think that the mom must hear that all the time. So what are some things that might be insensitive to say/ask. Maybe, what are some things you are sick explaining over and over again.
Ps, I totally knew what the mom was talking about with the feeding tube because of your blog posts!
honeydew / 7916 posts
I'm curious whether the feeding tube is forever?
The time we spent sharing a hospital room with a tubie the same age as J made me a bit curious about what was going on over on the other side of the room. Like I couldn't picture what was happening when she pulled out her tube, and I got confused about her timed feedings - the nurses teased her about how she was very serious about her food. (She weighed more than J!) And what is a bolus?
blogger / pineapple / 12381 posts
@Mrs. Tiger: there are lots of questions about that in the hospital, so I thought it would be a question that a new tube feeding parent would have. I believe there are some WAHMs that make tubie onesies?
blogger / pomegranate / 3044 posts
@MamaBehr: yes I imagine that's tough to hear constantly, presumably she got a feeding tube because she wasn't getting enough nutrition! Glad my posts were socially helpful
@spaniellove: totally depends! There are sooo many reasons a little one could need a feeding tube. If she was pulling hers out I guess it was an NG right?
honeydew / 7916 posts
@Mrs. Tiger: I thought she had a g-tube since she was born needing surgery to remove part of her bowel and at a couple months old she'd never been out of the hospital yet. There was so much confusion while I was there about transitioning some aspect of her care because she was about to hit some magic weight number that I really didn't know what was going on!
blogger / pomegranate / 3044 posts
@Mrs. Jacks: I've seen/heard of special broviac clothes, but not tubie ones. I'll look into it!
pear / 1696 posts
@Mrs. Tiger: Coming from the nurse perspective, I'd love to know more about what the experience is like for families to learn how to place/replace NG tubes and mic-key gtubes. Also did they feel they we're appropriately educated on complications that can happen from feeding tubes and/or trouble shooting before their child got the tube? for example dealing with granulation tissue.
cantaloupe / 6730 posts
I think talking about clothing is good idea. You say it's easy, but to someone clueless, they may be picturing something really complicated. Along that same vein, what things are done "normally"? Can babies with tubes have baths? Have tummy time? What things are we thinking are super complicated, but actually aren't?
blogger / pomegranate / 3044 posts
@lady grey: good ideas!
@Grace: I'll go in depth on how I get D dressed (which I think will point out how similar it is to other babies!) long story short baths & tummy time are no different (apart from just after the surgery)... swimming in gross or sandy water depends
clementine / 918 posts
Just want to put it out there for NG tube kids, it's so much easier to have snap up clothes (carters creepers were best for L). I know intestine transplant kids often kept their N_ tubes over G-tubes because that surgery to place it was dangerous for the new intestines.
Bolous feeds are when you feed them a whole meal over a short time, like how you and I eat, instead of a lower rate all day.
I dont remember when D got his feeding tube initially but I've seen that NICU babies often get their tubes placed in their mouth, is that correct? Is it just because their noses are too small?
blogger / pomegranate / 3044 posts
@Ms.Badger: why the snaps? Did you string his NG back through his clothes? I do avoid things that zip up to the neck...
I have no idea why they put it in the mouth first... D had it in his mouth for less than a week. Maybe @lady grey: or @Mrs. Jacks: knows...
clementine / 918 posts
@Mrs. Tiger: because anything that goes over the head pulls the NG down and then come out the bottom and I didn't want the tube by his diaper, with snaps I had control of where the tube went, either just off his face, or out the snap holes in the front. If he wasn't hooked up then you could put things over his head, but L would blow out when he was hooked up again and then you had poopy clothes around a feeding tube. NGs are more similar to broviacs. I'm sure if you're on bolous feeds a few times a day it doesn't matter.
blogger / pomegranate / 3044 posts
@Ms.Badger: Ohh gotcha. I always just put the onesies on feet first to avoid going over the head. Good points!
blogger / pineapple / 12381 posts
@Ms.Badger: @Mrs. Tiger: neonates often get OG tubes (oro-gastric) because they have nasal prongs, cpap or other things going on in their tiny nares
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