Any Experience with a G-tube or Feeding Tube?

Hello T.,
My name is R., and my miracle baby is Tommy. Tommy was diagnosed during my pregnancy with a heart defect, then he was also born premature. When he was a week old, we tried to feed him in the NICU and he couldn't swallow. A swallow study showed poor muscle tone in the pharyngeal muscles in his esophagus. (cricopharyngeal dysfunction) He also aspirated, which was double dangerous because he was waiting for heart surgery and we needed healthy lungs.

He has had a G tube since he was about 2 weeks old. He is fed by a pump, every 3 hours, and at night, we do a continuous feed. So far, the only problem I had was on his first tube, one of his ports leaked when he was being fed, and got his bedding wet. Easy fix, it takes all of 5 minutes for a doc to put in a new tube and send him on his way.

I clean the skin around the tube with half strength hydrogen peroxide and then rinse and dry the skin. When he is finished eating, I just unhook the pump, flush his tube with a little water, and he is done. Because your daughter is older, and will probably eat less often, she will probably get a button. It's the same principle, but she wont have a long feeding tube (4 inches) like my son does. I wanted a button, but I am told he has to be older.

It is a fairly simple procedure, and my son didnt even require pain meds after the first few hours. They start with pedialite to make sure everything is working properly, then she will get regular "food". I am guessing at 5 she will get a pediasure type of liquid for her feedings. She should gain weight, and possibly with speech therapy she can learn to swallow properly. I am waiting for my son's first speech therapy appointment. It should be by the end of next month, hopefully!

Good luck and email me if you have any more questions, at ____@____.com

Hello my name is R. I have been working with children for over 4years now besides my own who is 6. I worked with a little girl for almost a year with a feeding tube, Ilearned how to care for her and feed and burp her through her feeding tube she was 2years old at the time and had a disability that made her mouth sensitive to touch so literally you could not touch her mouth which meant no food or drink. She was losing weight terriably till her parenets got her feeding tube inserted. She began to gain weight back and her nutrition was again becoming normal. Besides when it was time to eat she was your average 2yr old happy and playing. I know its going to be hard on your heart( because it was hard when i first had to work with the little girl) but if you want your child to have some comfort getting her the feeding tube and learn how to properly feed and burp her and im sure she will begin to gain weight slowly but surely. its not always the most fun thing to feed or clean a feeding tube but wouldn't you rather your child be able to eat without worring about food and liquid in her lungs. I know its a hard decision. So i will say pray about it and God Bless You.

Hi T.,

You sound like an amazing and very caring mother! Everyone else had such good advice, I don't know what else to add, but I will share about my son. David was born with Hypoplastic Left Heart Syndrome(heart defect). He had open heart surgery at 2 weeks and was in the hospital for 4 months...during this time, he had trouble eating. He would not suck from a bottle, he didn't know how to suck. They had a tube going in his nose to feed him, but decided when it was time for him to come home, to put a g-tube in him. We had no other choice, cause he would not eat at all and he was so tiny. So, he's had a g-tube since he was 4 months old, he is now 20 months old.

It took a little time to get used to it at first, but now I think it is so good that he has it. He has to take lots of meds, so putting the meds through it gives me relief that he's getting the full dose and not spitting it out. David is even used to it, he thinks he was born with a "toy" attatched to his stomach, LOL!

He still has trouble eating & it's hard for him to gain weight, although he does now take a bottle during the day,and at night has a continuous feed. They were able to increase the amount of formula he takes at night, and now he has gained so much weight because of it. Like I said, it was a little hard at first, but you quickly get used to it and it's a godsend when your child has trouble eating. And it is very easy to use & clean. I hope I have been of some help to you. God bless you and your family!

Hi T., God Bless You to start. I have alot of experience with g-tubes. It sounds like this will be the best for your daughter as she is unable to consume enough food and drink to sustain herself. The tube will give her the much needed nutrition she is lacking by not eating. She also woun't aspirate on the nutrition going in. It's almost like drinking a ensure everyday when you aren't eating enough. It's like a supplement she will have down the tube. The surgery to place the tube is non evasive and she will have little to no discomfort. At her age after a while she will treat it as part of her body. Good Luck...T. T.

HEY T., MY NAME IS T. AND PRONOUNCED T.!LOL!FIRST LET ME SAY I ALWAYS TYPE IN UPPER CASE, I HAVE NERVE DAMAGE AND IT MAKES IT EASIER FOR ME,I'M NOT YELLING.WITH THAT SAID.I AM A CERTIFIED NURSING ASSISTANT II AND A CERTIFIED MED. TECH. AND I KNOW AS A MOTHER THIS MUST BE ONE OF THE HARDEST THINGS THAT YOU'VE EVER HAD TO DO BUT ON THE UP SIDE OF IT YOUR DAUGHTER WILL BE GETTING THE NUTRUTION THAT SHE REALLY NEEDS TO LIVE.AND SHE WON'T ASPIRATE WHICH IN TURN DECREASES HER CHANCES OF PHENMONIA.I KNOW THAT YOU CERTAINLY SOUND LIKE A MOTHER THAT HAS THE BEST INTEREST OF HER CHILD IN MIND AND HEART.I WISH YOU AND YOUR FAMILY THE BEST OF EVERYTHING IN LIFE!ON A SLIGHTLY DIFFERENT NOTE...ONE OF MY GREATEST FRIENDS IN THE WORLD HAS A DAUGHTER THAT HAS DOWN SYNDROYM(I THINK I SPELLED THAT WRONG,SORRY:)AND SOMEONE ONCE TOLD HER THAT GOD ONLY GIVES SPECIAL NEEDS CHILDREN TO PEOPLE WHO ARE SO EXTRODANARY THAT REGULAR PARENTHOOD WOULDN'T BE OF ANY CHALLENGE TO THEM SO HE GIVES TO THEM HIS MOST PRECIOUS AND WONDERFUL ANGELS FROM HEAVEN TO BORROW FOR A PERIOD OF TIME TO TEACH AND LOVE THEM BECAUSE IT IS NOT A CHALLENGE FOR THE AVERAGE PERSON WITH THE AVERAGE HEART. I DON'T KNOW IF YOU EVEN LIKE THE THOUGHTS OF THAT BUT IT HAS HELPED HER ALOT AND I THOUGHT THAT IT MIGHT YOU,BUT I CERTAINLY HOPE THAT IT DOES NOT OFFEND YOU,BECAUSE I MOST CERTAINLY WOULDN'T WANT TO DO THAT.MAY GOD RICHLY BLESS YOU AND YOURS EVERY MINUTE OF EVERYDAY,THROUGHOUT LIFE!SINCERELY,T. B.

I have a daughter that will be 14 on Feb. 22. She has cerebral palsy and if g-tube fed. She has had her g-tube since she was a year old. One of the funny things is I now have a 1 year old and I am realizing how easy it has been with her tube because now I actually have to think about what I need to feed him. I tell my friends that I am really like a first time mom with him because I never had really feed her.

When they first told us that we had to do the g-tube I was terrified. She aspirated and had many visits to the hospital with pneumonia. She was not gaining weight either.

Children's hospital has a feeding program that can help you with making your decisions as far as what you want to feed your child. There is a blended diet but I honestly found that to be too much work with all the other things I had to deal with. She was on Pediasure up until a certain age. They moved her up to one for adults. They can also help with tube care and I think they even have a support group there.

Does your daughter receive SSI? I think with her having a g-tube will help with her eligability. If your insurance doesn't cover the food then it can get expensive.

There are many different kinds of g-tubes. The one that I was most comfortable with at first was a Bard Button. It is a tube that doesn't have to be changed as often but is painful when it needs changing. It is a solid ball in the stomach that keeps it from falling out. Usually the doctor has to change that one. We also had a button called the MicKey. That has a softer ball (balloon) that you fill with water to keep in the stomach. I was nervous at first about having that one because I was used to the Bard, but when she was in between sizes and we had to use that one, I ended up liking it better.

Ask your doctor about the different buttons and tubes. I have found that the g-tube she has now works so much better- a MIC g-tube. It is a tube instead of a button. The tube will stick out and I tuck it in her pants during the day. A button is flat to the stomach but needs the extension tube to work. I don't have to get the extension tubes to hook up her feeding bags. Nothing like finding out at the last minute you don't have an important part that you need to feed your child. Been there, done that. Also find out what your insurance will cover.

I have a lot more info if you would like to e-mail me. ____@____.com

After you get it into your routine it is actually very easy. One of the best benefits - you can give them any yucky meds without a fight.

Take care,
P.

My experience with g tubes is as a teacher in a school setting so I hope you don't mind me responding. The students I've worked with that have g-tubes do not seem to show any bad effects from it and as far as I can tell do not seem to miss eating. I think it is the rest of us that worry about the social aspects:( Doing the actual tube feedings is actually one of the easiest parts of the day and with some students I've actually had one of their skills be to learn how to mix what they are eating so it is still a learning experience.

Big hugs are being sent your way. I'm sure it is a very hard decision to make for your child even if you know it is what is best.

the g tube is a great way to solve your problem. My son cant eat orally so the tube was our only option. he recieved the surgery shortly after birth and it was terrifiying to think about. But we had a wonderful dr.
(John LaNoue) now my son is growing and happy. i am so thankful. about 6 weeks after the surgery we had to go back for the button. to change it out only took a few seconds its a little shocking but definetly worth the switch.

Hi T.! I am currently taking care of a two year old through a home health agency who has a g-tube. First off, I can only imagine how hard this must be for you. Also the worry regarding your daughter's health is completely normal.

When a g-tube is placed, it is fast and relatively painless. As far as care for the tube, the biggest thing is keeping the site clean. This is a very simple technique involving half hydrogen peroxide, half water and q-tips. The delivery of food is simple as well.

She can also remain mobile! She can play, enjoy life and interact with other children! The g-tube is a great way to restore her weight and provide her with adequet nutrition without limiting her too much. I'll be thinking about you and good luck!

I have a friend who has a daughter who just got her g-tube removed (she is 4) -- she has lots of experience. With your permission, I will pass along your email address to her...send me the email address you would like her to write to, if you are interested.