Not going to be blogging about it this year but you all get free passes to ask about feeding tubes if you'd like! As long as it's not on this bingo card 
D has had his g tube since he was 6w old, now 29m! The hardest part is when he pulls it apart while he's getting fed overnight and we wake up to a soaked, hungry boy. Its such a wonderful piece of technology and I am thankful every day that he can use it safely.
Any other tubie parents hanging around?
persimmon / 1328 posts
I am around (ish) 
I still wish C had a G-tube, but now that his NG is bridled, life is so much easier!
Edited to add: My son (now 14 months) has had an NG tube down his nose for feeds since he was about 1 week old. He cannot have a G-tube like Mrs.Tiger's son due to having an ileostomy and being on peritoneal dialysis (basically he has no room on his belly). He used to pull it out multiple times a day, but now we have it tied to his nasal septum so it can't go anywhere.
cantaloupe / 6146 posts
Thank you for opening this for questions. I'm going to feel like a dummy no matter what I ask but I am very curious.
How do you decide what to use for food, or is it set by age or by something else?
How long did it take to get used to it (for you and for baby)?
Does it alter how often you can get a babysitter and go out on a date? (do you need to train your babysitters a lot?)
That would make me so sad if my kid pulled out his nutrition! How easy are they to pull out?
ETA: super cute pic!
pomegranate / 3845 posts
@Mrs. Tiger: just popping in to so oh my goodness, D is growing up so quickly!! He is soo cute!
That's really awesome that there is an awareness week for feeding tubes! Do you feel like the questions have dwindled as D has gotten older?
We got so many questions about LO's stuff (not a feeding tube) when he was really little, but now that he's older, the questions seem to be fewer and further between. Maybe it's less noticeable now that LO is older or maybe it bothers me less, but it's a relief to be able to buy produce without answering a million questions about LO, his medical history, and if I did anything to cause it (ugh, I hate that question!)
blogger / pomegranate / 3044 posts
@MrsScallop: love him! I actually hadn't heard of the bridle before but obviously had seen it in,his pics. Thanks for explaining!
@pastemoo: don't feel like a dummy! I started out with zero knowledge and have worked my way up for D, he sees a GI doc due to his short gut syndrome, and she has a nutrtionist. He gets Elecare, which is an elemental formula (easy to digest). Other tubie kids could get different infant formula, or something like pediasure. Some families do a blended diet, so blending up regular food and giving it via the tube.
It took a while to get used to it. At first it was hard just seeing his tummy with the tube on it. Now that doesn't bother me at all! Understanding how to use his pump, deal with his backpack, find a system and schedule for giving meds via the tube, and dealing with nighttime entanglements and such - I feel like I am still learning! Sorry if that isn't a satisfying answer, haha. I do think it got much easier to get used to it all once I accepted he would have it for the long haul - I originally thought her be done with it before 2, haha. Now I think mid-elementary school at best.
It absolutely affect babysitters. I don't have any outside of my MIL who can deal with his tube. For daycare we were able to modify his tube schedule so he doesn't need any tube feeding during daycare hours. I tried looking for sitters on care.com but any with tube experience wanted $40+
G tubes aren't easy to pull out of the body, but are easy to disconnect! NG tubes are often just held in place with tape (or in C' s case above with the bridle!)
@Applesandbananas: Thank you! I think it's a combination of fewer questions and me having a thicker skin! When we're out and about it just looks like he's wearing his backpack and the bigger he gets the more reasonable it is for him to have a backpack, haha. Occasionally people have asked me if he dropped a pacifier down his shirt because they see the bump from the tube! I still get plenty of the bingo questions of when will it come out/but he looks so healthy, etc. No one has ever asked me if I caused it, I think I would flip!
pomegranate / 3845 posts
@Mrs. Tiger: yeah, I hate that question with a passion. There are environmental causes for it though, as well as medications that are administered in the NICU, so it's not a completely unfair question, just a poorly phrased question. And the answer is technically yes, in a way, since it was caused by a gene variant that I also have, so I passed it onto LO.
blogger / pomegranate / 3044 posts
@Applesandbananas: I don't even know what to say. I wouldn't count your "technically" personally!
@pastemoo: pics to show the g tube on his tummy (with no food/tubing hooked up) and how he looks when we're out and about - don't mind the ridiculous outfit!
persimmon / 1328 posts
@pastemoo: I thought I would answer your questions too, since have a different situation, if that is alright.
C is fed a mix of formula (Neocate), amino acid powder, flax seed oil, and salt solution that is determined by his dialysis/kidney team. They change things depending on how he grows and what his blood labs look like each month.
It didn't take too long to get used to the NG really. Putting it down his nose was terrible and took a week or so for me to get comfortable with it, but now that it is tied in, he doesn't mind it much at all and I barely have to do anything with it. He takes his food by gravity, so we don't have too much in the way of feeding supplies.
Anyone watching C has to be pretty well trained, but that is due to many things other than his NG. With it bridled, I think it could be handled by just about anyone with a little training.
persimmon / 1196 posts
Random question: have your kids had a stomach bug yet? How does that affect/is that affected by the tube?
cantaloupe / 6146 posts
@Mrs. Tiger: @MrsScallop: Thank you for your responses!
Cute pictures!
persimmon / 1328 posts
@lady baltimore: C has had a pretty minor bug, but no vomiting. He rarely spits up and the tube has actually been nice in some instances (like if he is gagging) because we can open it up and have stuff come up his tube instead of out his mouth.
blogger / pomegranate / 3044 posts
@junebugsmama: and we love peds nurses!
@lady baltimore: actually D got something called a Nissen done when he got his g tube put in, which kind of crimps the top of the esophagus, making it harder to vomit. Its common to get them both because g tubes can make reflux worse. So he hasn't had vomiting issues, although with his short gut syndrome he often has very loose poop, which is no fun. Sorry, TMI!
@blackbird: @LAZB: @snowjewelz: Thank you!
persimmon / 1196 posts
@MrsScallop: @Mrs. Tiger: Thanks for your replies!
Is the Nissen something that he will have reversed if/when he no longer uses the tube, or is that a permanent procedure?
Sorry, I have limited experience with a family member who was tube fed temporarily during cancer treatment, so I am interested in the different accommodations made for long-term use.
blogger / pomegranate / 3044 posts
@lady baltimore: the docs told me that it would grow and stretch with him as he grew. He is able to burp (which they said he wouldn't be able to) so I think his is already pretty stretched out
Don't apologize, it's nice that people are interested! I do know that a lot of pediatric cancer patients get tubes to deal with the huge amounts of disgusting meds they have to take.
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