Wow, there are quite a few tube feeding kiddo's now aren't there ? How are all of your little ones doing with thier feedings ? Noah's doing okay but, his silly granuloma is acting up again not too bad though just a little area about the size of a pencil eraser, we use silver nitrate on it.

Thanks for checking up on everyone, Katy. We are lucky. Other than some crustiness the first few weeks, Daniel's G-tube site has been perfect. Once he switched to his button, he's never leaked. (I think the long tube pulled, and he'd leak and get sore.)

Our big issue continues to be D's refusal to swallow anything. But whereas before he'd zone out during meals, fuss, and refuse to even look at food, now he tries a variety of things. He'll finger feed or allow us to give him bites of our dinner on a fork. He actually tries lots of things -- I really wouldn't consider him a picky eater. He chews, but none of it goes down. It's pretty frustrating. :???:

Sam has been sick a lot--on and off since Thanksgiving (tis the season). Not doing well with oral feeds. I am trying to stimulate him orally with tooth brush, pizza crust and things of that nature. He was doing Ok with a few spoonfuls of baby food and then he got sick and has not done well since. I even stopped tring because I was afraid he was going to aspirate.

quick question: what are your older kids getting thru the tube? We meet with the GI next week and are going to transition Sam off Alimentium--not sure what we will go with yet.

D gets Nutrem Junior with fiber. It's 1 cal/ml. We give him 1,000 calories a day. He started on that when he got his tube at about 18 months old.

Jaxon is on Nutren Junior w/ fiber as of today but he was originally on Peptamin Junior (1.0cal/mL for both). He may be going to a higher cal formula due to not maintaining his weight but they will give him alittle longer just to be sure... He is also on 1,000 cals per day... Doing very well tube feed otherwise.. We have tried to oral feed but he still has no interest, looks away and sticks his thumb in his mouth and won't look at you till the food is not around...

Not doing well with oral feeds. I am trying to stimulate him orally with tooth brush, pizza crust and things of that nature.
Have you tried the Nuk brush? It's a small rubbery thing for infants that we used with Evan once he was older for oral stimulation. We also used an electric tooth brush...starting on the arms, hands, and eventually his cheeks before progressing to his mouth.

Noah get the Peptamin Junior HIGH CAL, formula. Plus fiber added to his bags.
Becky, at least he's putting them in his mouth and at least creating lot's of saliva that he has to swallow. So, with the tune feeds and the oral stimulation he's giving his gi system a great workout !!!!
Hopefully once Sam is feeling better he will give some more things a try. This time of year seems to be pretty hard on a lot of the GERD kids I know form October-Feb is always hard on Noah. Great idea with the Nuk brush Janette :)
How old is Jaxon ?? At least he has no aversion to his thumb :) any type of oral stimulation is better then none and as with Daniel there is also more saliva being produced when Jaxon puts his thumb in his mouth and he gets some swallowing practice.

Janette, I looked for the nuk brush in Target a few weeks ago and could not find it. I am going to have to keep my eye out for it--my OT suggested it as well. I did find one by Gerber with these little "nubbies" and he seems to like it OK

Katy, thank you for being so kind and checking in on all of us. Justin is still on neocate one plus when on feeds. His site has been better now than it ever has over the past five years. He has a mckey gj button placed over 6months ago and since this was in he has had no leakage or site infections.

I do hope everyone else is doing good and having no problems.


Melanie

Hi everyone,

It's a relief to hear that there is someone else out there with the same challenges I've had. I have been pretty lucky the past 2 months my little Gabby has done a complete turn around with her eating. (I am sorry to write this and I do not want anyone to be upset or feel like if I am rubbing things in)She is now eating up to 8 ounces at each meal. She is also putting everything in her mouth and testing everything. But keep in mind that for a very long time it has not been like this. We have many horrible days with feeding. I have had days were I was ready to throw in the towel and put her in front of someone's door. She simply has started to feel better and eating food doesn't hurt any more. She still gets tube feeds 2x a day because she still refuses to drink from a cup no matter what I put in it. Gabby is 14 months today so 12 out of 14 months of her life we suffered with her not eating.

I just always remember what a nurse in the recovery room told me, "I have never seen a teenager with a button". This was when Gabby first got her button put in.

There is hope ladies we just have to keep the faith.

Have a great day.

Ada

Ada,
Thank you for the inspiration !!! I am thrilled gabby is doing so very well for you and that there is light at the end of the tunnel !!! :)

Your welcome. We need to know that there is a light at the end of the tunnel because there have been many days when all I saw was darkness.

Good luck.

Hello Rosie here I have been searching threw everything and I think this is where I am supposed to be, could someone help me? My son is 4 and when he was 2 he got the fundo. and g-tube surgery and its been a long road, and still struggling. I just need to chat with other moms. Rosie

Eight ounces??? That is great news!

Does your son still have the g-tube rosie?

Since I found a spot with others that have feeding tubes I have a ??? Is anyones child of moving age and do you need a pump on all the time? Emily is on a 24 hrs a day and she is crawling and getting around and she seems to try to drag the pump everywhere and gets it caught on corners and then it pulls out and then we loose all the food out of the sight and I get so upset because all I can see it as is all of the calories I just lost and I cant get them back or make them up because of her issues. If any ideas that would be great. Emilys big thing is she cant take more than 38mls per hour. She does not have delay gastric empt. but she just cant tolerate it. 38mls an hour is a miracle for her allready. any ideas or other ways you guys have done things like this

Hi there, my son Max has a J tube and is pretty much on the pump continuously. He is now 20 months old. He is developmentally delayed and is only just now starting to walk but he has been mobile for a while. It is not easy with him being on the pump all the time. My day basically consists of following him around. We have an Enteralite portable pump that I carry in a backpack. So literally, I follow him as he scoots around and plays. I am so lucky that he is my only child otherwise I don't know how I would manage. I also am lucky to have lots of family support so I can have my Mom watch him while I shower/eat/clean/rest. There is ALWAYS someone watching him, actually literally attached to him with the tube.

The thing that really helps a lot is that his playroom is quite small so I can plop the pump in one spot and he can pretty much cruise around the whole room without dragging the pump. Of course now that he is getting more mobile he is more interested in cruising around the house. We are hoping he starts walking better and gets strong enough so that he is able to carry the backpack himself.

That is how we manage right now. I'm hoping some of the other moms might have more suggestions.

I haven't been on the boards all that often, so I'm not sure of your story. How old is your little one? What kind of tube does she have? What kind of pump?

- Vicky

Hello Rosie here yes Gaeb has a g-tube and we are feeding him nutren with fiber he has been on several because he doesnt really tolerate his feeds well. He does alot of gagging and trying to vomit. We have to give it to him superslow with the gravity bag. He hates it and crys when I hook him up he says it makes him sick. There is no way I can get aflush in him cause he freaks. We cant get into him in a day what they want him to be having. So right now its about 800 mls a day, 200 at a time, but now he has figured out how to turn the feeding bag off (little turkey).He does eat friut and dill pickles. He bites his cheek or tongue just about everytime he eats does anyone else go through this?, and then thats it he wont try for awhile Rosie ( he is 4)

Larissa is eating a bit more these days orally, but not enough to survive on by any means. I love to see her sneak in and steal a bit of cheese off the countertop. When she thinks she has got away with it, I put another piece there.
When I started to put blenderized food into her tube, we noticed a change in her desire to eat orally too. Was it a coincidence or not I don't know. But I like what I see. She is less constipated, seems hungrier (that might just be me though) and when she does have oral food, she seems to like it. Chewing is never considered by her...she holds it in her mouth until it mushes to something she can swallow or it is ejected. We used a nuk brush (but beware of them as their teeth come in as they come apart), battery toothbrush (she loves the stim), and lots of toys to eat off of. We also put food on her hands, on her lips and get her to feed us, smear on us. Since we started doing this and making food play, she has eaten substantially more.
Do any of you do blenderized food or just formula in their tubes?
Thanks for asking.

pamela

We have put all kinds of things down Noah's tube the best we ever did was day old avacoados from the grocer. I would go into the market on Tuesdays and the produce manager would give me all the over ripe avacado's as the older they are the higher the "good fat" they have in them. Noah gained many a pounds form them :)

I never even thought of putting "food" in the tube--I will have to bring it up at his GI appt next week.