Tube Feeding Your Child
My daughter, Darah was tube fed for the first two years of her life.
Most people had absolutely no idea what her feeding tube was and I got a lot of stares or quick “look aways” and a lot of questions about what those tubes were for. Darah was born with a very serious heart defect. This heart defect made her incredibly tired. In addition to her heart defect, she also has low muscle tone, because she had Down syndrome. The combination of low muscle tone and her exhaustion from her heart defect made her suck/swallow/breathe coordination impossible. From day one, we had to sustain her life by using a feeding tube.
The first feeding tube we used was an Oral Gastric (OG) tube and after about a month, Darah graduated to a Naso Gastric (NG) tube. The OG tube is a feeding tube that is inserted in the mouth, down the esophagus, into the stomach. The NG tube is inserted through the nostril, down the esophagus, and into the stomach. With a syringe (or pump), we were able to pour my breastmilk or formula into Darah’s stomach. Darah’s open heart surgery was not until she was three months old, so she received all of her nourishment through her feeding tube. The NG Tube made her very sensitive to anything coming near her face or mouth.
This oral aversion led to a surgically placed feeding tube when she was five months old. This G-tube allowed us to give Darah her necessary calories and fluids and attempt to work on feeding. She started off with a Peg Tube, which is a feeding tube in the tummy that has a permanent extension tube attached to it. After that healed, 6 weeks later, we switched that out for a Mic-key button. The best way to describe this is it’s just like a beach ball plug. It snaps shut when you’re not using it, and when you’re ready to access it you can unplug it and attach a tube extension to it.
Fast forward to Darah at 16 months old. She had made very minimal progr
ess with oral feedings and we decided to attend a six-week inpatient, intensive feeding program in Dallas, Texas. This program (Our Children’s House at Baylor) was the best thing we ever did. When we completed our 6 week stay, Darah was taking all of her caloric needs orally. She still struggled with drinking, however she was taking all of her fluids orally by her second birthday. Her feeding tube was removed a few days before her second birthday! She now loves to eat and drink! (I never thought I’d be able to say that!)
If you are dealing with a feeding tube, or severe feeding issues, I strongly encourage you to do a few things:
- Find support from other moms who have been there/done that! I found this great yahoo group that was always there for my questions and concerns.
- Don’t go it alone! Ask close friends or family to learn how to feed your child. By training a few people, you can get those much needed breaks from the whole feeding process. Most people will be happy to learn and to help.
- Ask questions! If you aren’t comfortable with your doctor’s advice, get a second opinion. G-tube surgeries are done a lot, however it is still major surgery. So, ask questions! Remember that this is YOUR baby! It’s so easy to forget that when you have a child with multiple health issues.
- Get lots of “extras!” Every time you’re in the hospital or doctor’s office, make sure you pick up a spare g-tube, extensions, and syringes!
- Find an EXCELLENT Speech Pathologist and Occupational Therapist. Don’t be afraid to “shop around.” Find a therapist who is a researcher and not afraid to think outside the box.
- Don’t be easily offended. A lot of people stared at Darah’s tube because they just didn’t know what it was. If anyone asked me about it, I happily educated them on it. People don’t mean to offend when they stare (or quickly look away), they just don’t know what it is and don’t know how to respond.
I love answering questions about feeding tubes and would love for anyone to take the opportunity to share their tube-feeding story, experience, or question!
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Great post, Mckenna. I really enjoy reading your writings.
I just loved seeing those pictures of Darah. What an adorable baby!!!
Those pictures of Darah are so precious! I wish I had known her when she was a little baby
Kara, she still IS a little baby! I’m in total denial about her growing up! LOL She was a super sweet, super cute baby, if I do say so myself (and I do!)
My little one, Talitha, is now 2 1/2 and has been fully tube fed up until two months ago. She also has Down Syndrome and heart issues and the combination of low muscle tone and heart problems meant that she was too weak to feed normally. She had a NGT (Naso Gastric Tube) from birth until she was 9 months old. By then she had developed severe oral aversions due to the irritation from the NGT which were aggravated by the fact that she pulled it out several times a day/night no matter how well I taped it to her. I could practically put that tube down in my sleep. She also had severe reflux which the NGT made worse.
At 9 months we got a mic-key put in. In that operation they do keyhole surgery to take the stomach and attach part of it to the abdominal wall and then they cut a hole in her belly which goes straight through to the stomach and put a feeding tube into it. It is kind of a valve which you open and attach a long tube to in order to feed. We also got a feeding pump because Talitha couldn’t tolerate all of her nutrition through the day. That way we could feed her constantly overnight. From this time on she thrived and grew.
Since then we have been down a long road of trying lots of ways for her to firstly tolerate having food in her mouth and then to swallow. She has been eating small amounts of things like ice cream and chocolate yoghurt erratically over the last 8 months or so but about 2 months ago she it was like something clicked and she started chewing and swallowing. Since then we have reduced her tube feeds to one a day and hope to totally come off tube feeds shortly and then remove her feeding tube once we are confident she can maintain her weight and take enough fluids in to keep her healthy.
We had a wonderful experience the other day. Something many people take for granted. I took my kids to McDonalds for breakfast. We all sat around and for the first time in her life Talitha sat there and ate a hash brown just like the other kids. It was a beautiful moment and one I will treasure. Sometimes it is the little things in life that bring us great joy.
Your daughter is so precious, I can relate to the g tube my son has had one for 10 months he was born with esophageal atresia and down syndrome. I think you have a great web site and a precious little girl.God bless you and your family.
Hi, I came across your page when I was researching some questions about g-tubes. My daughter was born with a heart defect and is still g-tube dependent at 16 months of age. I have never heard of this inpatient feeding program. If you don’t mind, would you tell me a little bit about what they did etc? I would love for Macy Jane to be eating soon, but so far she will taste things and depending on the taste and texture, she would swallow some or spit it out and shake her head no. Did your daughter ever do that? It is very difficult to make any progress!!!! Any advice or info you have would be greatly appreciated. Thank yoU!
hi, first and for most i would like to thank u for making this website, and informing me about the process. i have a four year old son who has downs and does not eat (at all, only drinks milk from a bottle, thank god to the person that made pediasure!!!!), and whenever he gets sick he does not drink milk. he is currently 33 pounds and i am starting to worry that i am cheating him by not getting the GT tube put in. please give me suggestions.
Hi, Thanks for the great site!
I have a question about the inpatient feeding program. My daughter is g-tube fed but can drink water (she has cleared all her swallow studies) but had severe GERD and will not touch food, the other problem is that I think she doesn’t want to eat as she isn’t hungry, I was wondering how the program at Baylor treats this issue.
thanks so much. C
@Bethany, yes, my daughter did the same thing! I think it’s great that your daughter is tasting!! That is the first step to eating!! The inpatient program was a comprehensive approach with a behavioral psychologist, social worker, dietician, OT, SLP, and they consult with gastroenterologists when necessary. The OT works primarily on sensory issues, while the SLP works on the oral motor components. The main player is the behavioral psychologist though who uses a behavior modification approach. I really think it was the best thing we could have ever done for our daughter and our family!!
@Naseeb- Darah is now 4 and is only 27 lbs. Make sure you are looking at the Down syndrome growth chart and not the growth chart for typical developing kids. He doesn’t sound like he’s too small to me. Darah is in the 25% for weight on the Down syndrome growth chart, which to me is GREAT!
@Corinne – Hi Corinne, I explained a lot of that above with my reply to Bethany. Let me know if that answers your question!! I think they are big on treating any and all medical issues first. They do have different programs now. The nice thing about the program is when weaning off the g-tube, Darah was being monitored by a dietician. She did lose some weight in the beginning, but with the close monitoring Baylor provided, she was safe. That is the hardest part about having a child with a g-tube…they don’t get hungry, but you want to make sure they are adequately nourished. It’s a tough balancing act. The GI wants you to put as many calories as possible in your child and the SLP is wanting your child to learn what hungry feels like and you can’t find that balance without a good team approach. At Baylor, not all of the programs they offer are inpatient or 6 weeks long now. They have mini day programs now. I strongly suggest consulting with them.
I’m happy to answer any question I can!
Hello, My daughter cannot have the g tube or anything else put in her stomach area due to extensive scarring in that area ( she was born with her liver and intestines outside of her body) so she has had the NG tube in all her 23 months of her life.
she is just starting to bite at certain foods but still gets all her nutrition through the tube. I keep on telling myself slow and steady will win the race for her but it does get me down at . especially that she suffers bad reflux and has to be fed continuously at night so none of us still get a good nights sleep!
do you or anyone reading this know of any support for children long term nasal gastric feed. We live in australia but the net of course opens the world to us.
I adore my daugther but suffer for her that she has to have this tube in 24/7 any tips or pointers to websites would be greatly appreciated.
i have found the New Visions one quite inspiring.
My heart goes out to all of us mums whose children cannot do the things that so many parents take for granted. ( but we know that are children are extra special as well!)
Helen x
Hi, And thank you for sharing your beautiful girl with us, I have an almost 9 year old beautiful daughter named Daisy that needs to have an feeding tube put on, I’ve been putting it off and trying to do it myself but it’s a lost struggle, she’s about 36 lbs she has spina bifida and really weak she does not like meat, fruit or vegetables almost nothing, she’ll eat maybe 2 times a week and it’s a struggle the rest of the week and forcing her to drink her pediasure which she hates now. I just don’t know what else to do and I’m really scared to have this done. I know this is the right thing to do. but it doesn’t mean my worries are not there, I just hope this works for her. I read all of this family stories and gives me hope and strength. Thank you again for the reassurance with seeing the progress your daughter has had I hope that happens with mine.
Sandra
Hi I have an almost 2 month old beautiful baby girl who has a Mic-key. She’s had the Mic-Key since 2/18/09. First she was tube fed through the mouth and then she was tube fed with and NG tube. All this was for a whole month. I thought at first that at childrens they didn’t want to show my daughter how to feed through the bottle because once they started to see her cry they just wouldn’t try and just feed her through the tube. Well now she’s on the g-tube with a kangaroo pump which I can only use it till august of 2009. I really do not know what to do or who to look into. Sometimes she’ll take some from the bottle and sometimes she just doesn’t want to see the bottle. She would cry as if it were the worse thing in the world and she’s so little and already knows. Please I don’t know what else to do to get my baby to get the bottle. She’s healthy. She doesn’t have heart problems and she was a term baby weighing at 10lbs and 11ounces. An ocupational therapist at childrens hospital here in California worked with her maybe 2 times a week for a month and she just wouldn’t take anything from the bottle. I try to bottle feed her in every feeding except at night. Can anyone give me any suggestions on what to do? Please I just don’t know what to do.
Hi, My daughter is 8 months old, she’s always been tube fed. She doedn’t drink or eat anything. Sometimes she puts toys in her mouth but if I give her finger food she doesn’t take it anywhere near her mouth! She’s got reflux. She is very healthy. She was a term baby weighing at 9lbs and 39ounces. Can anyone give me some tips on how to encourage her to feed oraly please?.
Hello I came acroos your web site out of a random search on g tube. You have no clue how much hope ypu have given me. I am a single mom of a new born down syndrom little blessing who has currenly gone through the first of three surgerys. How did you manage the strength for every thing? I fell so scared and Have so many question and no one to answer me ? please help! he is due for his second surg and the dr thinks we need to drop the ng tube and give him a G tube. How did that affect your daughter and did the G tube help at all? I read your lil bio a your little girl seems to have gone through what I am going through. Please email me ! I am so lost. Is she walking yet?
Hello again. I was on here in March looking for someone who might know what I can do or try differently. My baby girl is now 5 months and 2 weeks. She is growing and gaining the proper weight. I have introduced her to baby food and she loves fruits. She especially loves the rice cereal with apple. I know were supposed to try the veggies but if she loves fruits and can eat a small portion of it I’m happy. Also I was having problems with her drinking from the bottle. If I give her water through the bottle she’ll drink the whole thing. If I give it to her with the dropper she open her mouth so I can give her some and if I give it to her in a cup she’ll almost want to drink it in an instant and gets frustrated because she would love to just pour it over herself. I love that, but she still won’t really drink out of the bottle if my husband or I am giving her formula. She barely even smells it and just arches her head, screams, cries and hits the bottle as hard as she can. She will also close her mouth tight so that we can’t even try and put the nipple in her mouth. Our daughter has been to Genetic doctors and they say that they can find anything wrong with her. They simply cannot find an answer to why she won’t eat through the bottle. We try giving the bottle to her in every feeding and she’ll maybe take an ounce in a half to two ounces but other times she just doesn’t want to see the bottle. Once she sees the bib and the bottle she just starts crying and I know she’s not hurting because once the bottle is out of sight them she’s happy and giggly. I’m just really worried because in August I might not be able to stay with the kangaroo pump. They want me to feed her bolous feedings but it’s impossible because she has reflux and because she cries a lot and moves a lot and it will take forever for her to finsh eating. I just wish, hope and pray that maybe someday she will start taking the bottle or that she can just start eating solids. Please if someone knows someone, has passed through this or knows what I can do please do let me know. I am desperate.
My little brother has a G-Tube and a J-tube. He has down syndrome and asperated as a baby, so he wasn’t able to eat. Currently he will be starting a feeding clinic so they can teach him how to chew and swallow. He’s on a Kangroo Joey Pump on Continuious feeds for the J-Tube. After awhile he got used to it, but his poor skin is so raw from the tape we have to put on the gauze.
It does get old when people stare at him, especially when he’s in his wheel chair, he’s 4 and cant walk yet, due to low muscle tone. but he’s getting therapy for all of it. My mom will say to people -Hi there, his name is Chris- When they stare. So, that usually gets them to blush and walk off.
i have a question for u..my son has a peg tube at the moment now i wopuld prefer him to get the button because im afraid he will pull it out..did ur daughter have to go thru surgery to get the button or they replaced it just like that?
My son was on a feeding tube for 4 years. At birth he was diagnosed with down syndrome he had failure to thrive and asparation he a g j tube put in this allows the food to by pass the stomach as he also had gerd about a month after birth they found he had blockage of the duodenum he had surgery he also had heart surgery. at about the age of 1 we changed from a g j tn a g tube i noticed he was not sleeping a lot maybe 3 hours a night and became worried the prob was he was hungry he was on a drip and never felt full i did a bullus feed and he was a happy baby. I live in Fl i know that All childrens in st petersburg fl has an intensive feeding therapy and they also have a web site that has some good tips. Conner my son has a dietician and she said a lot of times down syndrome peoples taste buds are not like ours they like stronger tastes. I find conner likes very sweet or tangy. when he was not gaining weight the dietician had us add a tsp of veg oil to his pediasure per meal 1 tsp is 120 cal best of luck
Hi, I found your site searching for hospital feeding programs.I was just wondering if they let you stay in the hospital w/ your child,my son is 2 and still has his g-tube and is completely dependent on it.His thereapist said she wants him to do a hospital feeding program but we are not allowed to be w/ him,which I do not like,so was just wondering how they handled it at the hospital you went to.
I have a 6 month old daughter who has had an ng tube most of her life. We are starting to mee with surgeons for a g-tube. Do you think the feeding program your daughter thrived at in Texas would be helpful for an infant? Or was it more helpful (I think you said the psychologist was the most helpful) because your daughter was a little older?
Thanks so much.
Hello, i found your site when i did a google search on “gastric tube”. I hope your daughter is growing and doing well. My baby had a serious congenital heart problem that they were pretty sure would lead to death after birth. But she had the first of many open heart surgeries at 3 days of age. She has been tube fed since birth. She is 4 months old now and has been vomiting all her feeds so im in hospital as we write this. We will be going home with a kangaroo feeding pump and are seriously considering gastrostomy to get the g tube put in as she will probably need feeding assistance for a while to come. Your information was very useful so thank you. My daughter is due for her next open heart procedure in 3-6 months time. So we want the g tube put in before that. Thanks again.