Welcome to all you parents seeking tips on how to wean your child off of an NG tube or G tube! My heart goes out to you, and I commend your research efforts that somehow landed you here. I want to say, “Keep going!” But I know you will.
It’s hard because the isolation and desperation can be all-encompassing, since no one else seems to understand how stressful and heartbreaking tube feeding can be when there is so little weaning support available to you. That’s why I’d like to share Stella’s tube weaning experience, some rare and compelling tube weaning research and let you know that there are many amazing tube weaning success stories out there involving children and babies, some who’d never, ever eaten before their weans! For years! Please be sure to visit the Tube Weaning Stories page for some inspiring examples.
To help you find some key weaning information on this site, I’m listing the top references and resources here. This is the best of what I can offer you based on my personal experience. I’m not a medical expert, just a mom who’s been through it. I hope this helps you along your path toward the unique discoveries, people, and information you need to reach a tube-free destination. Your child deserves to enjoy food, and you deserve to find some peace.
A table of contents for the info below:
- Research and guidelines for weaning, including a MUST-SEE lecture by a world-renowned weaning expert from Germany
- Online tube weaning support group
- Tube weaning clinics and experts (pros and cons of Graz, and endorsements for Spectrum Pediatrics, Seattle Children’s Hospital, and Markus Wilken)
- Occupational therapy
- Feeding strategies that worked for Stella
- Be brave, and kind to yourself
1. Research and guidelines for weaning
An ABSOLUTE MUST-SEE: Markus Wilken’s lecture about basic principles of tube weaning and self-regulation, delivered at Seattle Children’s Hospital in May 2010. Markus is a child psychologist who worked at Graz and now does tube weaning and management at a hospital in Germany. He’s successfully weaned over 400 children. He has performed home-based weans during his trips to Seattle, freeing kids in our community from their tubes! If the above link doesn’t work, try copying and pasting it from below (you may need to remove the mms for it to work): mms://seattlechildrens.wm.internapcdn.net/seattlechildrens_vitalstream_com/Rehab_5-27-10.wmv
Prevention and treatment of tube dependency in infancy and early childhood, published in ICAN: Infant, Child, & Adolescent Nutrition, Vol. 1, No. 2, 73-82 (2009).
Standardized tube weaning in children with long-term feeding-tube dependency: Retrospective analysis of 221 patients, for publication in Infant Mental Health Journal.
I would like to call out one of many GREAT points in this research, which came from the renowned tube weaning clinic in Graz, Austria. Tubes should never be put in without a PLAN to take them out! Get your child’s medical plan to agree on a tube weaning approach. Demand it and don’t take no for an answer.Show them this research–most medical professionals have very little specific expertise on tube weaning. This research is precious and rare and we need to spread the word.
The Crunchy and the Smooth is a blog, written by an incredibly brave and intelligent mother, that documents the successful wean of her young toddler, Heath, who was 100% tube-fed until Markus Wilken arrived to help oversee an intensive and incredibly transformative wean. Simply amazing. Check out her rich, eye-opening resources page, too. She’s done a ton of extremely valuable research on the topic of tube weaning and the associated trauma.
Research on the risks of long-term NG tube use. NG-tube-fed babies and kids face many risks, please read this post if your child has recently been given an NG tube or if they’ve been fed through an NG tube for any extended period of time. No one really tells you about the drawbacks and problems of tubes, especially NG’s! Please know that NG tubes are meant for very short-term use only, and can worsen or trigger feeding aversions. Here’s why.
2. Online tube weaning support group
Please visit Tube Fed Children Deserve to Eat, it’s a social network on Ning, that is aimed at “Connecting Parents of Children with Tube Feeding Issues.” To me, it felt chaotic at times, because weaning is hard and reading about others’ panic when you are going through it yourself can be counterproductive. That said, you can also find great information, invaluable camaraderie, and wonderful support. Tube feeding and weaning can be so lonely. It’s nice to connect with those who “get it.” To be clear, the focus of group conversation is definitely on weaning.
3. Tube weaning clinics and experts
You may have heard of the Graz model of tube weaning. It’s known for it’s underpinning of hunger as the motivator for eating (as opposed to artificial rewards, etc.) and that the child must be in total control of their own intake and not pressured to eat. The Graz clinic reports a high success rate with weaning babies and children of all ages–the ones who are not able to be weaned often have many serious health issues that make eating impossible, not “just” a feeding aversion or tube dependency. The clinic’s URL is notube. at.
The cost of flying to Austria and receiving treatment there is high. Thankfully, as you’ll read below, it’s not necessary for everyone to fly all the way to Austria as there are alternatives. Recently there have been some negative experiences reported there–with feeding and therapy practices similar to those more forceful methods seen in clinics with behavioral approaches wherein natural hunger and child autonomy are not central to the process. While all children are different and no one approach fits all, I believe those two elements are crucial to tube weaning. I don’t have a clear picture of what the Graz experience is like these days, so your own research will be crucial in evaluating it, of course!
The Graz clinic launched an arm of operation for “netcoaching,” internet-based weaning support, which was helpful to me and Stella. However, the program has expanded greatly and changed drastically since we participated. The cost has skyrocketed, and there is debate about whether the value provided matches the price tag. Netcoaching is probably best for those babies or kids who are already eating some on their own–perhaps not for babies or kids who are not eating at all and whose parents really need real hands-on support. Stella was taking about 40% of her formula orally when we started our wean and the most valuable thing I got from netcoaching was simple but powerful confidence that Stella could wean successfully. Weaning is usually scary and very stressful–even when it’s going well. It’s a leap of faith. Netcoaching is basically email-based (via an online ticket system), and it can take up to 48 hours for them to respond to your questions and concerns. Two days feels like a decade when you’re in the midst of a wean and need answers “NOW.” More direct help is definitely preferable, though sadly not always possible, depending on where you live. In that vein, I’m happy to present these wonderful options:
Seattle Children’s Hospital now has a tube weaning program! Caloric reduction and respect for the child are pillars of this program. The waiting list is long, but they have plans to expand. I’m truly thrilled that this program exists in my city, and not surprised, given the quality of therapists we met there during our tube-feeding time.
Spectrum Pediatrics in Virginia has a feeding tube weaning program! I recommend this program highly, because of their philosophy. From their feeding therapy page: “We never bribe children or force them to eat when they are signaling that this is not what they want.”
Markus Wilken is referred to above, with a link to one of his lectures. In my eyes, he is a weaning superhero. He helped our dear friend Heath with his resoundingly successful and impressive wean (Heath went from 0% oral intake to 100%) and this is just one of hundreds of stories. Markus is based in Germany but works with Spectrum Pediatrics and helps with home-based weans around the world. He is a world-renowned tube weaning expert, child psychologist, and champion for tube-fed children. You can find Markus online at his website (and you can use Google to translate it):
A description of Markus’ work, taken directly from this Facebook page:
“In the last 10 years home-based feeding tube weaning became an established treatment in Germany by Martina Jotzo and Markus Wilken. Research on this method has shown, that 90 % of the children that we have treated can be successfully weaned. Inpatient tube weaning, as well as outpatient Speech and Language Therapy, Occupational Therapy and Physiotherapy are central elements in the care of children with feeding tube dependency. We think home-based weaning should be established as a further treatment for children with feeding tube dependency not just in one country, but in all countries. We would like to find out more about the treatment approaches in different countries and how to integrate home-based tube weaning.”
4. Occupational Therapy
Stella’s occupational therapist, Robin Glass, was central to her recovery. We were blessed to find an absolute rock star in the field. She is a real expert on infant feeding issues and very wise and experienced. Robin gave me confidence, even when our pediatrician had doubts! She knew Stella because she’d worked with us in person. Robin told me from the start that Stella could do this and that she would leave the tube behind. We met with her weekly, and it was huge for us. Find your own Robin, someone who truly understands the dynamics of feeding and weaning, and work with them to come up with a plan for weaning. Then, if you can, get everyone else on board–pediatricians, GI, etc.
5. Feeding Strategies that Worked for Stella
Here, we’d like to share with you the specific feeding strategies that have worked for us. Please note that Stella was weaned from the tube when she was just four months old. Age plays a big role in how to appropriately approach weaning and feeding, of course!They may or may not work for your child and we are not doctors, but we know how stressful it is to deal with feeding difficulties and would be thrilled if these tips and tricks make life a little easier for just one other family.
Best of luck. And if you have any feeding tips to share, please let me know and I’ll add them to the list!
HANDS-ON TACTICS USED DURING STELLA’S AVERSION (INFANT-CENTERED)
We used to do the following, when Stella’s feeding aversion was in full effect. I think each feeding was a form of therapy. The main thing we did, however, was to not force the bottle in any fashion. We let her tell us if she was hungry, we let her decide how much she wanted to take from the bottle, even if it was zero mls sometimes. Ending the battle is step #1. Otherwise, no feeding strategy is going to work.
Stella is a very squirmy, active baby. She never stops moving and has been like this from the beginning. It’s very fun, but can get in the way of eating. When her aversion reached its peak, she would push away the bottle or block her mouth with her flailing arms and hands. So as we worked on overcoming her feeding aversion, we would very lightly and loosely swaddle her when we fed her. Please note that we did not force-feed her. We would bring the bottle to her lips and it was up to her to accept or reject it. Her arms could still move a bit, and sometimes her hands would poke out and I’d let her hold one of my fingers while I fed her. But she stayed much more calm this way, and focused on eating rather than grabbing at or playing with the bottle, my shirt, etc. It was a big day when we were first able to feed her without swaddling her, but for a while, it was a huge key to successful feeding.
Standing, Squatting and Shushing
Back when Stella still had the aversion and as we worked with her to over come it, we’d stand up to feed her, holding her in a cradle position while keeping her body straight and at an angle so that her head was higher than the rest of her body. We were careful to not let her head tilt to far back, to prevent any gagging or choking, as she had some swallowing difficulties. When she needed some extra calming, we’d even do squats while feeding her. The up-and-down motion helped Stella mellow out. Sometimes, I’d also shush her in the rhythm of my squatting.
Yes, standing (with a 15-pounder in one arm) while squatting and shushing is a lot of work and I’d often get out of breath! But I knew it wouldn’t be like that forever, and it was worth it if it helped her eat comfortably on days when she needs a little extra support in order to get in the eating groove.
The jury is still out on this, but I suppose it’s worth a shot if you suspect that your little one simply dislikes the nasty taste of formula–especially hypoallergenic formula. Stella’s Elecare smelled like feet and tasted like a ground-up multivitamin. One evening, back in our tube weaning time, I was desperate because we’d tried EVERYTHING and Stella wasn’t making as much progress as we’d hoped. We added a bit of baby food to the bottle, just enough to add a more appetizing flavor. I used organic Gerber bananas, because they are incredibly smooth and highly caloric (believe me, I compared all the brands to figure out which would be most suitable). Lo and behold, she started eating more.
It could’ve been coincidence. But breast milk is supposedly flavored by whatever mom eats. So even if flavor wasn’t one of the reasons she came around to liking the bottle, I like the idea of giving Stella a more interesting and tasty experience.
Removal of the Tube!
I wanted to note that Stella was really bothered by the NG tube. It affected her swallowing, exacerbated her reflux, and prevented her from ever feeling very hungry, since we were pumping food into her at night and whenever she didn’t take a full feeding during the day. We had to push to get support from her doctor to take it out. As soon as we did, her eating improved dramatically! It took about three weeks for her to start gaining weight again, as her intake ramped up, but she never lost weight.
I don’t know if it happens this way for every baby, but Stella’s recovery was SPECTACULAR. After she’d been given those three weeks without the tube, a switch in Stella’s brain was flipped. Something clicked, and she started to enjoy eating. It was like magic. Where once she would scream and cry at the sight of the bottle, she started to lunge at it and cry when it was taken away! In our case, faith and patience paid off. As Marguerite as the Graz tube weaning clinic explained, it takes time for the baby to adjust to feeling hunger and getting in touch with what that means and how to address it (by eating). For Stella, it took three weeks. I think many parents are tempted to put that tube right back in after a few days of their newly tube-free baby not eating “enough.” But if the child has energy and generally seems okay, and you have support from a doctor or some sort of medical professional who is aware of your weaning efforts, I say hang in there!
So to sum it up, at first, the tube was helpful in allowing us to get some calories into Stella’s belly without having to fight with her over every feeding. We could simply stop when she wanted to stop. Our occupational therapist put it brilliantly. She said we had to let Stella say “no,” and have her feel that she was really being heard, to enable her to later be comfortable enough to say “yes.” But after a while, the tube caused more problems than it solved. Therefore, I am very concerned about longterm use of NG tubes. Here is an article about preventing tube dependency and guidelines for weaning.
My feeling is that babies and children without major health issues, who may not eat much at a time but have shown that they have the physical ability to eat, and whose pain or source of aversion has been identified and addressed (i.e. reflux medication given), should be given a month to show that they can thrive without the tube! If this is your situation, make a case for it and get the support you need to wean your child off the tube. The tube weaning clinic in Graz, Austria has a very high success rate with weaning, and it’s all based on the idea that most children will eat if freed from tubes, allowed to feel hunger, and able to determine when and how much they want to eat. Once the core issue is treated, we have to trust our little ones to know what is best for them, which I know is hard to do after the trials and tribulations of a feeding aversion.
In the time immediately following the resolution of Stella’s feeding aversion, a few weeks after the tube’s removal, we didn’t have to go to great lengths to ensure a good feeding. However, we still had to take a couple of extra steps to make sure swallowing was easier and she didn’t get too distracted.
Update: FDA has reported very serious side effects for some infants whose feedings are thickened with Simply Thick. The product should not be given to premature babies in particular.
We started out with a ratio of one packet of Simply Thick (nectar consistency) per six ounces of formula and using a Dr. Brown’s number 2 nipple. This was too slow for Stella. She was bored and uninterested. So we changed the ratio to one packet of Simply Thick to eight ounces of formula and saw improvement. But we thought she still seemed a little bored (there were too many sucks per swallow), so we switched to a number three nipple. Even better, but we noticed some difficulty swallowing, so we adjusted the ratio once again to one packet of Simply Thick per seven ounces of formula, using the number three nipple. It took us a while to get there, but once we did, it made a huge difference!
This ratio lasted a while and got us through the tube weaning period successfully, but as Stella improved, we adjusted. It wasn’t long before we used a number 4 Dr. Brown’s nipple. Then, Stella evolved to the point where we were using one packet of Simply Thick with 12 ounces of formula (with the number 4 nipple). Then, we weaned her off of Simply Thick altogether (but went down to a number 3 nipple as unthickened with a number 4 was too fast for her, and really too fast for most babies).
How did I know to adjust the amount of thickener? How could I tell that Stella had improved? It’s hard to explain, but mostly, I gauged her overall comfort level during feeding. For instance, early on, a bit of formula used to dribble out of her mouth during feedings. When that stopped, I knew her feeding and swallowing skills had improved. But in general, I knew I could gradually reduce thickening as she got more practice.
We encountered an issue with Simply Thick in that it can clog the nipple if it is not completely emulsified. We had simply been shaking it up in a large bottle, and clogging became a common problem. I called Simply Thick customer service and they recommended whisking. So, based on that, we mixed the formula powder, water and Simply Thick in Dr. Brown’s Formula Mixing Pitcher, then I used a small metal whisk to mix it up even more, and then I shook it in the bottle before feeding. It sound like a lot of work, but it’s not too bad, and we completely solved the clogging issue!
You probably already know this, and I allude to this above, but you can figure out if you’ve found the right combination of thickener and nipple flow by watching and listening. There should be two or three sucks before each swallow. Breathing should sound pretty smooth and steady. With Stella, any gasping and panting meant the milk was flowing to fast and she would quickly pull away from the bottle, sometimes gagging or choking a bit, or crying.
Quiet, Dimly Lit Setting
Stella still takes a bottle most comfortably and calmly in a quiet, dim room. Eating was her most immature skill, so it was very easily thrown off by distractions. Taking her to a quiet place helped her relax and remain focused on eating. I enjoyed feeding her in this setting as well. Very peaceful.
For a while, after swaddling during eating was not necessary, we put Stella in a sleep sack when we fed her. I put a question mark next to this one because I’m not really sure how much of a difference it made. But I think it served as a good cue and calming influence. Stella is very active and likes to flail her legs, whichgot her more riled up and distracted her from feeding. With the sleep sack, she may’ve felt a bit more contained and secure.
Dr. Brown’s Bottles
We use Dr. Brown’s bottles and really like them. The excellent occupational therapists at Seatttle Children’s Hospital use them. In fact, they gave us our first couple of bottles during our hospital stay, and we’ve stuck with Dr. Brown’s ever since. Stella isn’t too gassy or gaggy, and she’s never had an ear infection, which may be partly attributable to the bottles. The bottles are BPA-free, of course. Their wide-neck bottles recently became available in BPA-free as well. I heard from a salesperson at Babies R Us that many moms believe that the wide-neck bottles reduce gagging and that they more closely mimic breastfeeding.
Formula Mixing Pitcher
Dr. Brown’s Formula Mixing Pitcher was very helpful in that we could easily whip up a large batch of thickened formula. The propeller, which spins when you pump the handle, ensures there are no lumps of unmixed formula or thickener. Just make sure you don’t let the propeller go above the surface of the formula as you are mixing, or it could create air bubbles. Honestly, I don’t know how we got by without this pitcher.
Side note: I recently read a study, on the Dr. Brown’s website, about nutrient loss in formula and breast milk–during feedings and whenever exposed to air. It happens pretty quickly. So it’s best to store it in bottles that are as full as can be, with as little air above the prepared formula as possible. I do think that this is somewhat alarmist news, and I don’t really give it much thought. But it’s good to be aware of.
6. Be fierce! And kind to yourself.
Health care is letting down most tube-fed children. You really have to take matters into your own hands, and make it happen. The technology that enables tube feeding is outpacing our understanding of it’s impact on babies and children. The vast majority of doctors just don’t have a handle on how to manage tube feeding, and they don’t have a clue about weaning. (Hence the importance of having an experienced OT or feeding expert on your team–just don’t be afraid to push them for answers and planning when it comes to weaning.)
I can’t tell you how many times I cried and pleaded to doctors and therapists. I got hysterical. I pushed and pushed and pushed. I think you have to be really proactive to get the support you need, because health care is not stepping up to help tube-fed children in most countries. It’s an outrage. Do not take no for an answer. If your child has the ability to eat but not the willingness, there is a high likelihood that they can learn to enjoy food. Unfortunately, you have to be a warrior to make it happen. You can do it. Stella and I know you can! Listen to that little voice in your head that says your baby deserves better and can eat if given a chance.
Feeding tubes save lives. If your child simply does not have the ability to eat, you live with deep gratitude for this technology. On the other hand, sometimes the initial issues preventing eating are resolved and tube feeding continues, without end in sight. So many parents in such situations feel desperate to wean their children but have no support–sometimes, weaning is never mentioned to them and everyone seems to be waiting for the child (who feels no hunger and has no relationship or experience with eating) to magically start eating and THEN the tube will go away. Feeding aversions and tubes are pretty much a nightmare. I am not alone when I say I almost lost my mind. For months, from before the tube when Stella wouldn’t eat through the weeks when tube-feeding started to prevent her from eating, I didn’t sleep much, didn’t eat much, and didn’t take care of myself. I was falling apart. But I did hire a postpartum doula to give myself a break a few times. I did go get my hair cut. I did manage to get three hours of sleep at a time now and then–which is necessary for a full cycle of sleep. If you’re on a feeding schedule that is driving you insane with exhaustion or chaining you to the feeding tube, talk to the doctors about room for flexibility or changing the schedule. I know you won’t be okay until your child is okay, but do your best to take care of yourself, so you can be strong for your little one.
I wish you the very best. We got through it and so can you.
I’ve been scouring the net for the type of information you’re providing concerning tube weaning. My own little one is now 3 and half months old, having survived open heart surgery at 10 days old and cataract surgery just yesterday. Soon as she get some vision, I’m wanting to take on the tube weaning project and have been desperate for some backup. I’ll definately be arming myself with some of the data you’ve found. I know Grace can eat. She’s literally never been given a chance, but I have to believe she can do it. It’s just another hurdle and she’s my little track star.
Gina, how are things going? I’d love to hear how Grace is doing, but I know how little time you have to spare! Anyway, I hope she is eating and thriving.
Thank you for all the information. Health professionals have been very reluctant to wean our baby after six months! It is awful.
I feel like I can relate to you in so many ways. Thanks for your candidness and willingness to help others who are in the same position that you were in with your baby.
I am currently in the phase where I only get 3 hours of uninterrupted sleep. My baby is 3 months old and has been on the NG tube for one week and 4 days. She is slowly starting to take more milk from the tube than she will nurse so I am concerned about the future.
All the info is so overwhelming. It will take me a while to get through it all since I have such limited personal time.
But again, thanks!
Just wanted to reply to your post with a couple of comments. Our daughter is also 3 months old, she has been on an NG tube since she was discharged from the hospital at 2 weeks old after stomach surgery. In the mean time, she has decreased from taking about half her food by mouth to taking only somewhere between nothing and about 4 ounces by mouth each day. We are now working with a speech therapist to try to improve things (won’t really be able to start weaning her until after her heart surgery next month though). I wish someone had told to us to stay more aggressive about trying to get her to take the bottle – not pushing her it on her if she clearly doesn’t want it, of course, but if she is just not too interested to try harder.
Also, in the interest of getting more sleep, we decided pretty quickly that she was only going to be fed 7 times a day not eight, with a longer stretch at night (we just took the total quantity of food per day and divided it by 7 not eight). Now she goes about 5 hours at night between feeding, plus there is another hour available for times during the day when we get behind (we have three other kids, so it is really hard to stay on schedule). I go to bed around 10, my husband stay up & feeds her at midnight, and then I get up at 5 am to feed her again. You may want to check with your doctor, of course, and be sure she can tolerated the larger volume at each feeding, but this has worked well for us because one just cannot function for very long when one never gets to sleep more then 2 hours at a stretch!
Hi Linnets Mom,
Has your little one had her surgery yet? How is she doing with her tube feeding?
I also have 4 children. It has been very difficult to meet everyone’s needs with our youngest having such difficulities. I am sure you can relate.
Hope you are doing well.
Linnet had her heart surgery in late Septenber & is doing really well – she’s like a whole different baby now. Smiles & plays, when she used to just lie there.
We started weaning her off the tube in November, and she zoomed right up to about 9 oz. per day within about 3 weeks (she is very small for her age plus the formula is fortified, so that’s about 50% of her daily total). However, now she has been stuck there ever since, so we’ll need to get more aggressive about weaning her again soon. I’ve just gone back to work (part time) though, so we want to let her get more settled at the babysitter’s before we start that.
Thanks for asking!
Jennifer, how are you doing? I would love to get an update–but I know how hard it can be to find time. I hope you’re now getting more rest and my best to you and your daughter!
I have not been on this site in a while and searching for tube weaning info brought me back here. And it was such a nice surprise that you had asked about Abbey. Thanks!!
Abbey has been on the NG tube since July 23 (almost 3 months). She did indeed become completey dependent on it as I was fearing might happen in my earlier comments. She does nurse a few minutes from time to time on occasion because I always offer the breast before each tube feeding. And she began “tasting” solids this week. She moves them around in her mouth and spits them out.
Just as a little history… she was placed on the tube because she had developed an oral aversion and FTT due to severe reflux. Her surgeon placed her on the tube so she could gain weight and thrive in preparation for removal of a congenital lung mass. The lung mass supposedly has had nothing to do with the reflux or feeding problems. She had her surgery 3 weeks ago. She is currently thriving now taking in 34 ounces of breastmilk through the tube each day (4 oz gravity bolus feeds 4-5 times a day and 15 oz through the pump at night). She is starting to develop fat rolls and it looks great!! Once we started the pump at night (around the beginning of August) she started sleeping throught the night from 9:30 pm until I wake her up at 7:30 am. That part has been awseome!! So, I have a love/hate relationship with the tube.
However, I am in the pit of depression because it is time to wean her and there are several issues a foot. One is that I am unsure if her reflux is truly under control yet. Second is that I don’t feel like I can trust many of the health care professionals in my life. I know when things are BS because I am an Occuaptional therapist myself. Thirdly, the only way that she will occasionally take anything by mouth is through nursing. Bottles make her gag and vomit. It could be a sensory issue but it probably has more to do with her strong preference towards only taking the breast as many breastfed babies develop. She swats and turns her head if I try to cup feed her.
So, I spent this afternoon crying after an unproductive visit with her GI doc this afternoon. He says I should consider taking her off breastmilk and use formula (concentrated for more calories) and get her to eat baby food (like I am not trying ). And he wants to take her off her Prevacid in 2 months (even though I have told him her reflux is worse than ever and she vomits at least one entire feeding per day).
I am seriously thinking about taking out the NG tube (because it makes her swallowing uncomfortable) and just nursing her for a few days and offering solids and just seeing what she does. I know that her surgeon would be very supportive of us doing that since it was his idea to do it that way. I on the other hand tend to over analyze everything and over think things till I make myself crazy. Each way we could go seems to have a web of what ifs- if that makes any sense. Like you said, tube parents do start to go crazy. She had open chest surgery and was in the PICU… and still the feeding issues are so much more overwhelming at times.
I am also looking into the info on the Graz method also. Thank you so much for posting it.
Hi, I’m skimming your webiste very quickly inbetween a hospital visit to my son. We are waiting are in the process of phased discharge home after he has spent 12 months (since birth) in hospital (SCBU/NICU/PICU and now a Children’s Unit). He spent his first night at home aged 365 days on home leave from hospital. Luke has been tube fed since birth (NG) and we are being pushed towards a PEG. he currently has 6 feeds a day through a pump; 10, 14, 18, 22, 02, 06.
I found your webiste from recomendation on a UK website for premature babies- Bliss. I am looking forward to getting lots of tips as I am desperate for Luke to feed orally.
this is our story about feeding nightmares.
Luke has had his NG tube since his birth 12 months ago. he has either been ventilated or on CPAP and more recently a tracheostomy on Long Term Ventilation.
He did have a dummy from about 4 weeks old and loved it. he would suck really hard and found it very comforting, but refused it after a very bad period requiring ventilation at 9 months, which also coincided with his teeth coming through. I wondered if his gums were too sensitive, but he won’t have it anymore and he now has 6 full sized teeth which he loves to bite with, rather than suck – ouch!
We have had Speech And Language Therapy input from early on. Initially they said he needed to get his respiratory problems sorted out before any oral feeds because the risk of aspiration was too great and would compromise his breathing and infection. Once he had his trachy done and was a bit more stable they suggested baby rice via a spoon. It was his first oral feed and he was over 6 months old. Luke was belwildered by it all and didn’t know what to do. He became unwell again and was sedated and feeding got put to the back of the list. I should add that I was continuing to express throughout all this in the hope that Luke would be able to feed from me. I painfully came to the decision that I would stop expressing after Luke having my EBM for 6 months and he was started on formula.
There was a period when he was about 7 months old and still interested in his dummy that we tried a bottle with a long teat Medela Special Needs Feeder. Luke could suck but didn’t quite get the hang of feeding and was vomiting. SALT said that he could be aspirating and advised against doing too many feeds. In the end he became quite ill again and was sedated and paralysed and lost interest in the dummy and sucking.
So now we are 12 months on and the advice is to try purees and thickened milk. Luke won’t have a spoon in his mouth, although he will put his fingers/toys/chew his wires/bite our fingers. If you try to put your finger near his mouth with a bit of puree on he clamps his mouth shut, but will gladly pull your fingers to his mouth if he wants a chew, all on his terms?
i’ve tried the distraction technique ie make him laugh and pop a bit in when he’s not looking but its not very successful for large amounts and he seems to have vision like a fly and wacks my hand out of the way! The bottle is out of the question now so I tried a beaker, but he won’t have the spout anywhere near his mouth, which confuses me as it’s plastic like a toy and he will chew on those. I tried thinkening his milk to double cream consitency and using it open to his lips which sometimes he likes to ‘hoover’ it in, but it is very hit and miss. Mostly miss, all over him and me!
SALT want me to help desensitive his face and mouth area by giving him as many opportunites and tastes as possible. I’d like to try finger food but he can’t deal with ‘bits’ in his mouth and tends to inhale them, this happened when I gave him rusk to suck on and he managed to bite a small piece off and vomitted straight away. I feel confused as he sucks in his sleep when he is dreaming (quite cute) and loves to hold my face in his hands and suck kisses all over me. SALt though it was like rooting and said I smell of ‘mummy’ so it’s comforting. That actually makes me a little sad as we didn’t even get to have skin to boob contact to try to BF all the time I was expressing.
the reason for this long post is that PEGs are going to be discussed at our next MDT and although it seems likely that Luke will continue to need his nutrition from a tube a PEG is an operation and would mean a transfer to our specialist childrens hospital and as we have only just reached the point where home discharged is being planned and I don’t want to finally get home and then have an appointment sent through. Also PEGs seem a bit more pernament and don’t want to seem like I’ve given up on Luke having oral feeds and we’ve tried everything possible. I don’t to replace one tube with another; I want to get rid of it! I feel sad that I went from hoping that he could breast feed to just wanting him to eat something.
Luke born at 31+5 emer c-sect HELLP syndrome, 14.09.08. CHD: repaired Coarctation (narrowing) of the aorta, complex respiratory problems; tracheobronchomalacia, vocal cord palsy, Left hemi-diaphragm, tracheostomy for long term ventilation. 1st night home 365 days
Just wanted to give you a huge thank you for making all of your tube-weaning experiences available for all of us who are desperately trying to survive a nightmare! You have given us hope that our little Amelia (and us) will be able to have some sort of a normal life. We started weaning yesterday and pray that we will soon be able to move on! Thank you, thank you, thank you! Stella is a beautiful girl. You are really bleassed.
Thankyou, you’re daughters story matched mine almost exactly.
Thickening and rocking/knee bends(hard work!) was how we weaned her off the tube, all of which I tried after reading your blog.
So I have nothing else to say but thankyou for taking the time to write.
Wow, Rachel. Your comment made my week! I am so thrilled for you and your daughter! Thank you for taking the time to stop by and let us know about your success. Such a great feeling. I hope you’re enjoying the tube-free life to the fullest! Stay in touch. Hugs to your family from me and Stella.
I think I cried throughout your whole website, I have been searching and searching for some kind of answer to help us with this wean. My son has had a ND tube from 3 1/2 weeks till 6 1/2months and at 6 months the tube was placed NG. We were given the okay to start feeding at about 5 months and at 10 months we still struggle with his dependancy of his tube, and it weighs so heavy on all of our shoulders. We go to therapy 3x weekly plus feedings all day long, at times I think the tube consumes our son and I hate it. Thank you for giving me hope. I know our miracle will come, I have been researching the Graz center and from the first time I read about it I felt like we were finally onto something!
Glad you found the blog! Thanks for stopping by! Do you mind if I ask the reason your son needed a tube initially? Was it similar to Stella’s story or did he have a more complex medical history? Sounds like a tough road since he required an ND tube at first. You’ve been on quite a ride, I’m sure. Hang in there. I’m so happy you found some hope here. Stay in touch! I’d love to hear more when you have time!
Thank you so much for writing back, at 3 1/2 weeks he started to get a cough and we felt like something was wrong. We took him to his doctor and were sent to the hospital for x-rays, to our suprise we were admitted and about a day later we found out our son had a VSD and they wanted him to be tested for aspiration. Unfortunately he was aspirating and I had to stop breastfeeding and he got the tube hours later, that is the reason for an ND tube so he could not aspirate at all. Then at 3 months his airway started closing and we were medivaced 5 hours away where we stayed for about 5 weeks and he underwent a surgery to open his airway. The last day before we got discharged from the hospital they tested him for aspiration and he passed! We were thrilled, so right away we started feeding and I was able to get him to eat ounces of formula at one time. When we got back home one of our doctors wanted the test to be redone at our local hospital, and he failed. I felt very strongly that the test was wrong and that they weren’t even trying. Although I felt that they were wrong, I still stopped feeding himjust in case. We scheduled an appointment with the other hospital hours away during one of our other check-ups, I just felt they strived for sucess and they wanted him to pass trying different things ie thickener. Of course he passed, and since that day we started our feeding journey once again. Although this time it has been way harder, his dependancy for the tube is awful and his swallowing is very delayed he gags and wretches daily, and throws up a lot. I was wondering though, did Stella keep her tube in for long periods? How often did the tube get changed? Thanks for the hope. Love to all!
Hello again! Wow, what a roller coaster you’ve been on. Immediately upon reading your story, I thought of a very similar one! In our Seattle tube-feeding community, I know of a girl named Caroline who is having amazing weaning progress! She had a VSD, which was thought to be small but turned out to be very large. She had surgery, of course, then developed RSV which turned into a big, traumatic struggle for her as well. She completely refused to eat after a bit of progress. Though, she had feeding difficulties from the very beginning. Caroline had an NG tube at first–my understanding is that early on, when they didn’t realize how big the hole in her heart was, they didn’t really understand why feeding was so very difficult. That is what I recall. Maybe you can find even more directly applicable help and hope in her story. You can get Caroline’s full story at the blog her mom keeps:
Thickening was very helpful to Stella because she also had swallowing trouble. She didn’t throw up *too* often, but it wasn’t infrequent. There are still stains in our house from those days. Stella was always active (I guess you could also call it “unsettled”) and did not keep her tube in for very long. At first, she’d go a few days–MAYBE a week at a time. I’d take her to the ER for tube replacement. But it got to the point where it was coming out every other day, and I started to insert new tubes myself. What an awful experience for all involved. I think that the NG tube was helpful at first, because (and I know this will sound weird coming from me) it helped her get back in touch with hunger and fullness, which she no longer seemed to feel after two months of eating so little. But the tube overstayed its welcome and over time really slowed her swallowing, and caused increased reflux and gagging. There was blood in her nose and I *think* it was causing irritation all the way down.
Love to you, too, and stay in touch!
I am so glad to have found this site. I feel we are living on an NG tube island. My son, Wes, born 4/20/2010 with congenital heart defects had surgery at one week and is is now solely NG tube fed. He has never taken food orally at 5 mos and I am angry and frustrated. We are hate the tube. He pulls it out many times daily and we struggle to replace it. We are finally working with a feeding specialist after the go ahead from the last Barium Swallow Study but he does not know how to suck/ swallow as he was never given the chance. We want the tube out!
Hi Dara, I totally understand how you feel about the tube. Maybe you can get Wes to take solids first, as that’s easier/slower to swallow, and work from there? I’m glad you are working with a feeding specialist. Push them to come up with a concrete plan for tube feeding and tube weaning. Get it on paper. Have them list specific goals and milestones that will be met before weaning, and try to get a timeline. Also keep in mind that hunger is needed to drive improvement. It’s very unfair of docs to expect changes and progress without hunger. Hang in there and keep me posted if you can. My best wishes to you and your son.
I have 2 boys with a congenital heart defect, one of whom is 15 months old and has been ng fed since 3 months old. He has had 4 cardiac surgeries and will need several more, but he has started to show a lot of interest in food finally. He puts things in his mouth, swallows some pieces, and drinks about 6 oz. of juice a day from a straw cup. I really want to wean him off the tube, but am so nervous because he needs to be in good health for future surgeries. We considered just doing a g-tube but I feel like that would be giving up on him because he definitely wants to eat. I don’t have the money to put into netcoaching via Graz, although I’d love to. Do you think I can wean him on my own maybe with the help of a nutritionist and using the principles from these articles?
Ashly, wow, you and he have been through so much. It’s absolutely fabulous that he has shown the ABILITY to eat and drink! You can build on that, with some support. It does seem to make sense to give him a fair shot at eating/weaning before you resort to the G-tube, assuming it’s safe to do so, which seems likely since he can and does eat. I’d try to find some more hands-on help if you can–an occupational or other similar therapist. Is that possible? You can do it alone if it’s safe, but even when it goes well it’s scary and extremely stressful–just a warning. Letting go and putting them in control does feel like a huge leap of faith. At the very least you’d probably need your pediatrician monitoring him, I’d say. Please keep me updated on how things go if you can! I’d love to provide moral support, at least.
Ashleen is almost 10 months old and has had an ng tube from 5 weeks, at birth she was bottle fed but struggled with this and failed to gain weight. She has some type of feeding aversion but we are unsure why, although she has a rare chromosome condition-triple x, much research does not link the feeding difficulty to the syndrome.
However Ashleen is now weaned on pureed food with no swallowing difficulties and is drinking very small amounts orally from an Aveda cup(nowhere near enough to remove the tube). my problem is no-one is in charge of the tube and noone including myself is brave enough to risk removing the tube. I am not aware of any guidelines on tube weaning or working towards removal of the tube and feel very much isolated without a definite plan for Ashleen.
I had not heard of the graz centre(before this) but feel I should not have to go to such extremes to get the appropiate care and information I currently need for myself and my baby. I am seeing a dietican next week and plan to ask her to plan the weaning process with me, should i insist removal of the tube and see what Ashleen is cabable of, or do play safe ????
Hi Dawn, you are asking great questions. And I could not agree more that the idea of having to go to Graz to get adequate care for your child is outrageous and wrong. With the dietician, insist on a weaning plan… at least. It does seem like Ashleen has the skills, and perhaps with hunger and no NG tube interfering, she’ll take off if given an adequate shot at it. It’s great that she is drinking small quantities, and she won’t drink more until she’s hungry/thirsty and in control of her own intake. There is more detailed info at http://www.thecrunchyandthesmooth.com where a very smart and diligent mom detailed her son’s wean (with charts and graphs and research and everything)… maybe you can find some details to show the dietician, to inspire a proactive weaning approach. Good luck and let me know how it goes!
It has been a couple months since I last wrote, and I just wanted to say how grateful I am to everything you have written about tube weaning. I found so much support from everything you wrote. We have been involved in the Graz program for 6 weeks now and Cason is doing absolutely amazing. I am so thrilled and when I look at him eat and put just about everything in his mouth I can not believe just 6 weeks ago how LOST I was! You gave me hope, thank you!!
I am so grateful for everything you have posted here. My son will be 1 this week and he gas been on an ng tube his whole life. Ge was on a vent for 80 days, CPAP for a week and O2 cannula for about 6 weeks. By some miracle he does not have oral aversion, but takes such a tiny any of food by mouth it’s so upsetting. He gets therapy twice a week for feeding and he’s much improved but but still not taking anywhere near what he needs.
Yesterday morning he pulled out his ng tube (a favorite activity for him these days!) and my husband I decided not to put one back in just yet. We are hoping his internal drive kicks in, but God its nerve-wracking.
I tried to find dr markus wilken’s lecture but the link isn’t working. If you have a new source for it will you share it please?
Well on March 3, CJ will be 3 months tube free!! We did the Graz program for 8 weeks and 2 days and it clicked he took the bottle and hasn’t stopped. 🙂 It is amazing, we have been celebrating on the 3rd of every month and at times I feel like it is bigger than a birthday. I am just overwhelmed with joy everyday as I watch him eat new things. I have had a lady ask me why I carry special treats like chocolate for him, I said because he deserves CHOCOLATE :). I want you to know that although we have never met, I think of you often and the hope you gave me. You made me feel like I had someone, a friend that actually knew what we were going through. By the end of this year I am hoping to have a fund set up for children that have feeding issues, so they can and will be able to get the help that we were able to receive. It is hard enough having to deal with watching a child go through something, and not having the funds to be able to help is even worse. I hope to one day be able to take a little stress off of a family by them knowing they will be able to get the help they need.
Thank you again.
My daughter has been on NG tube feedings since 2days old then she was on the vent for 5 dad and oral surgery. Her case is a little different she has Pierre Robin Sequence and has a small jaw, cleft palate, and her tongue had to be sewn to her lip due to her suffocating onit. But She can nipple uses a special bottle, whenever she wants, it is just harder for her to breathe and suck, and wlswallowing is very hard but she can do ll and we top of with NG what she doesnt eat and do allNg at night. She is taking 95 ml every 3 hr but we honestly hate the tube more than anything!!! We want it out so bad I have tried once when she pulled it out for a few hrs and Se really did eat anything.. I need strength and course to help us get her off of it belts they decide to put in a G Tube due to her not gaining… She is 3 months an only weighs 9.8 lbs..
Hi Adri’s Mommy:
My Daughter is 5 1/2 month’s old and has PRS. She also had the TLA procedure done. We came home on a NG tube. Please tell me it gets better. We are pulled out the tube a few days ago hoping she would drink more but so far it has been a nightmare. We are seeing our pediatrician for our weekly weight check ( I’m sure you are familiar) in a few days and i know she is going to be upset because we did not tell her we were pulling the tube. sometimes my daughter can take the whole bottle ( 150 mls) no problem but most of the time she is not interested. She is having the TLA takedown in a month, so I’m hoping bottle feeding approves after. Cleft Plate repair at 12 months.
Any advice or suggestions would be appreciated. Thank you.
Thanks so much for all this info. I’m determined to get rid of my son’s tube before he turns a year (he’s 11 mos now).
An update for anyone reading this: Sharla successfully weaned her son not long after her online research into the subject! Hooray!
Thank you for sharing you story. I am trying everything I can to get my 5 month old off her tube with no medical support it is very frustrating!!!!
Well done to you and your lovely Stella hope she continues to do really well xo
Best of luck to you, Wendy! Stella has been a happy “normal” eater for almost 3 years now. She’s a big tall strong girl who enjoys eating a wide variety of food. I still appreciate her eating so much! Keep me posted about your daughter if you can. Best wishes!
So everyone at the hospital keeps telling me my daughter is not being affected by the NG TUBE and it is not the reason why she can’t eat. She has been in the hospital since birth, for about 3 months, and having big troubles eating with the tube. I feel so stuck because she can eat 45ml without the tube and it is not enough for her to live, but with the tube only 0-10ml and she eats it like she has a horrible sore throat. she had complications after her heart surgery, complications after her diaphragm plication surgery, and im afraid of gtube surgery and i dont want her to have it, but the hospital seems to be pushing it. im stuckkkk!!! i am Glad I found this article, maybe i can keep fighting.
Hi Melissa! It’s stories like these that make my heart beat fast and turn my face red. It’s completely unfair and ridiculous for your medical team to assume she can only eat that much with the tube out. How long was the tube left out for this trial? An hour? A day? The tube might need to be out for many days for the inflammation to go away, for the delay of the swallowing mechanism to be corrected, for her to realize eating feels different. A G tube makes for an easier wean, and is more humane for long-term tube feeding, but the question is, does your daughter really need it? It’s possible she does–she’s been through so much. I’m not saying that a G tube is a bad idea, I’m just frustrated to hear the gavel come down when she really hasn’t been given a chance to feel hunger, and to be free of NG tube related irritation for very long. Know what I mean? The NG tube could be causing the problem, yes. Perhaps you can bring them some research, like the following, and push back on them for more satisfying answers to your very valid questions: https://lifeandtimesofstella.com/2010/08/26/more-on-the-risks-of-ng-tubes/
Just wanted to say thank you very much for your postings. Our daughter was extreme prem (25 3/7) and has been on OG and NG tube since birth, and she is now 6 months. Once she finally came off CPAP we started oral feeds and now I have read so much up on it, see that much of what was done during her time in hospital was counter productive. I basically took things into my own hadns and we started to wean her 6 days ago….she can eat just is not taking very much so we are hopeful each day she takes more. Thanks so much
I am so encouraged by the response I’m hearing about tube weaning! I wish I had read all of this before I had my daughter, Gabriella’s, G-button put in. She had a hypoxic injury, had a tracheostomy (which is now out!), and has epilepsy. But she’s had a swallow study and doesn’t mind finger foods; we’d better not come near her with a spoon or she’s going to gag (totally behavioral!) and not act interested at all. She just turned 2 and has had the button for a year and 3 months, is it too late to wean? I’ve already contacted her speech therapist and dietician to let them know I want to do this, I just hope it’s not too late!
My son Jack was put on an NG tube at 3 weeks of age. He was sent by his regular pediatrician to the local children’s hospital because he was not taking large amounts of breast milk at each feeding (between 1-2 oz) during those first 3 weeks. At the hospital he was diagnosed as FTT and a video swallow study showed silent aspiration on breast milk. They immediately put him on an NG tube and said nothing by mouth for 1 month. During that month, we discovered that he also had silent reflux and he is now medicated for this as well. The NG tube helped him gain weight but I think the tube aggravates his reflux. At the end of the 2nd month, a repeat video swallow study showed that he can swallow thickened liquids safely (via an eyedropper at first and now the bottle), . He is now 3 mos old and is taking 2 of his 3 oz of fortified formula by mouth at 5 out of 7 feedings a day. Sometimes it takes him about 30 minutes to do it though and he sometimes sounds a bit wheezy. I am considering bringing up tube weaning to our care team (developmental pediatrician, speech therapist and regular pediatrician) because he has shown he can take the bottle and I think the NG tube aggravates his reflux and in general makes him more uncomfortable. I would love to hear your thoughts though.
Thank you for this post. It is very encouraging and inspirational. I feel i’m the only one out there feeding my baby via NG Tube. My daughter, Baby K (6 months), has been hospitalized for 2.5 months and on NG Tube feedings for ~6 months. We introduced solids last month (5 months old), and things are looking bright. However, the doctors set a date for a gastrostomy in exactly a month (she would be 7 months). To tell you the truth, that’s not the path i wanted to go down… Thank you for the tips! Hopefully in a couple of weeks, we’ll prove the docs wrong, and she wont need the gastrostomy. Cheers! *J
Beautiful! I couldn’t have said so much of this better myself. I am trying to wean my 10-month-old from being 100% tube-fed through a g-tube. You are so right, no one has any idea how hard and “all-encompassing” it is. It’s my whole life pretty much. And I have a healthy 2 year old on my hands, too! I completely agree, there isn’t much support from doctors or family even. People don’t realize you have to teach your child to eat. And doctors are basically like, if the tube is working, why fix it? A million times thank you. So inspiring and exactly what I needed to read! Hope you and Stella are thriving 🙂
How much was Stella taking from the bottle when her tube was removed.
She was taking 40-50% of her feedings orally.
Thanks very much for this information. I started researching about tweaning to help a friend’s kid. The details here was of grey help. We have now secured the services of dr Markus who will be traveling over to Australia.
Did you get her to drink Elecare by adding the bananas to her bottle or was it just bananas in her bottle and no Elecare? I wasn’t clear on that – my daughter is on Elecare and it tastes terrible – trying to get her to take a bottle.
I have been forwarded your comments about “NetCoaching” in your blog and I would personally like to answer you and correct on several points you have mentioned.
1. The program has neither changed not expanded drastically since you and Stella participated. The clinical and theoretical concept on which the weaning by NetCoaching is based on is absolutely the same, but must be tailored in detail to the specific medical and developmental needs of every single child individually. It is as “hands on” as any telemedical intervention can be, follows every child daily and the individual learning speed specifically and tries very hard to match all accompanying parental needs and concerns by offering both medical and psychological support at all times during the transition.
2. The majority of children joining our program are severely handicapped and most of them have no prior oral skills at all. Stella was one of the very well prepared children, both in her general developmental performance, lack of complex medical issues and her excellent specific existing oral skills.
3. The costs have also not skyrocketed, we just have needed to raise them due to the increased number of trained professionals working full time for NoTube now. Actually the costs are shamefully low in comparison to any program in the US or elsewhere with far lower success rates and without the luxury of not needing to visit a clinical setting for the weaning period but being able to stay at home without the trauma of re-hospitalisation or risk of hospital acquired infections is acknowledged greatly by all our clients parents!
4. We have not been able to check why you might have had a episode of needing to wait 48 hours for our response (maybe this was due to a technical problem at that time) but have been able now to expand our team sufficiently to offer 3-4 rounds of Q&A in every 24 hours cycle 365 days /year! This is absolutely unique and no clinical environment worldwide can offer a similar Verfügbarkeit. This has all changed in the past 4 years and definitely to the better for the specific needs of each child and each family.
5. We discuss our policy and any issues which parents or colleagues inform us about regularly and thouroughly (?) and are constantly adapting and developing the website and our services further to match the needs and expectations of this very sensitive clientele. In addition to this, we now can also offer home visits on demand and also Skype sessions or telephone contacts with parents and their medical team if necessary.
6. We are more than happy that Seattle Children’s hospital is now also offering a weaning program for their patients and can only wish them all the very best for their team development, the ongoing work and the dealing with unexpectedly complex and tricky cases.
7. As we are more than grateful to any professional team in any place of the world who can offer specific skills and expertise for the very diverse group of medically fragile young children with tube dependence, we kindly ask you to feel free to promote any informations on the Seattle program but to refrain from using false accusations and spreading wrong informations about our program.
Your’s Marguerite Dunitz-Scheer
Hello! I just wanted to say THANK YOU! I found your blog and the resources within so helpful and it provided me with the additional support we needed to move into a full Gtube wean with our 8 month (6 months adjusted) preemie. If we all can band together and share resources like you have done here, so many kiddos can find the joys of eating and self regulation. I know if it weren’t for my own research, persistence and belief in my baby and the knowledge sharing of people like you we would still be waiting for that ‘magic’ day our medical team spoke about when Ava would just eat on her own. THANK YOU a million times.
We are starting this week to wean my 9 month old of tube feeds. We just tried dr. Browns bottle and he loves the bottle, just a not the milk! Boo. He wants to chew on it. I can’t wait to get this going full-speed.
We’ve been trying to ween our daughter off the nasal gastric tube for 2 1/2 weeks and being a twin and also having a 3 1/2 yo, it makes it so hard and to have no support also. She fed perfect before her ohs in May but now refuses, she is another Stella, so finding you advice is great to know we’re not alone.
My son had a NG tube for 5 months and due to open heart surgery at 4 days old he has a paralized left vocal cord. In NICU they wanted us to start giving him a bottle because he was aspirating we needed to thicken the breastmilk. We were not ok with the options so we started researching and found a product called Gel-mix it is a bean based thickener made for breastmilk. Just wanted to share this amazing product with other parents who may need different options. He is now eating fantastic.
I have a 5 month old grandson with congenital heart problems. He now has a feeding aversion due to the ng tube. The drs want to do a g tube. Please help us avoid this. Where do we start? We live in lansing michigan.
You are a Diamond Woman, Mummy of Stella.
Your story has made me feel hope. I live in Australia and there is no support or clinics available anywhere! My daughter was tube fed when she was in hospital every 4 hours regardless of if she was hungry or not. She has an orogastric tube as she has nasal stenosis. How would you like feeding with a tube in your mouth, I ask the doctors? She vomits the tube out every single day.
The tube has been out for 4 days now and she has lost weight. Only take 40% feeds. Sometimes only 5ml. Still not showing strong hunger signs.
I hope the doctor doesn’t make us put the tube back in.
It’s not the answer.
Thank you for sharing. It’s a great inspiration.
Thank you for the words of encouragement. My son is almost 5 months and has been tube fed for 2. He is able to feed himself and even enjoys the bottle but won’t take the volumes right now. You’ve helped me believe that he will get there and won’t starve himself forever!
Hi , I am so glad I found your blog, my daughter has just came home from hospital a month ago and I started weaning her asap. She is 3 months old about to be 4 months. It has been hard because they were not giving her any bottle feeds in nicu after her gtube was placed, which took 2 months to heal . As I sat in NICU I read this and it was life changing! ! All I have to say is you were God sent and thank you, my daughter has had unimaginable progress and has not used the gtube for almost 2 weeks. My private duty nurses are so impressed they can’t believe it. I started helping my daughter with oral aversion in the nicu everyday, when I brought her home it was just a lick or taste of milk, now she wants to chugg the whole 2 ounces! ! Thank you for giving me hope. And for providing all the information necessary to feel confident in helping my daughter. God bless you.
Im currently trying to wean my nearly 9 month old lb. We have good days and bad days. He hates formula and refuses all bottles and ive tried everyone i have bags and bags of them and teats. We pulled the tube out a few weeks ago and me and tesdie both found it awful. Every meal ended up with him and me in tears and just became a battle so i placed the tube back in. Now having bad feelings about that now that its not teddie but me who cant do it. Im currently only giving him dinner atm and hes dropped the tube on that feed most nights but i know that can change at anytime. Hes not intrested in breakfast at all or lunch. I find it hard to eat his food when mixed with formula as he hates the taste. I am still hopeful we will get there as he has come so far already. Just nice to read another artical about what im going through and know im not the only one.
I would love to chat! We have an 18 month old with an NG feeding tube. He has had it now since he was 9 months old. We have no support in our area. We have a speech therapist but “feeding issues” are not her specialty. She has been working with him for at least 6-7 of these last months with him, with extremely minimal progress. Our son loves to taste food, gets excited about the food we are eating and insists on trying it, but he will not swallow! He gets all of his nutrition from his tube. We are SO lost. Our GI told us to take the tube out and try it for a few days after we told him we felt like the tube is what is causing his swallowing issues. We have tried and made it through about a day and a half. He was puny and lethargic. He just wasn’t taking ANYthing in. He will drink water from his straw sippy. He will take a few bites of applesauce or yogurt. But anything with structure he will not swallow. I would love a little guidance. Is an intensive feeding clinic the answer? We literally have no guidance in our area, and the dr’s act like my son is an anomaly and have no answers. The next step will be a G-tube! I just know he can eat, but at this point it is becoming a behavioral thing (or habit?…idk). We have had swallow studies and emptying studies. I’m just at a loss. He also has a genetic disorder, but is doing well otherwise.
I wanted to thank you for this post, and the life-changing guidance it provided me! Per your recommendation, I looked into Spectrum Pediatrics and enrolled our daughter into the program. In less than five days, she was tube-free! I blogged about the experience and hope it helps others: https://tubeweaningprogramreview.wordpress.com/
I could not have been happier to read your comment. Thank you for taking the time to leave it! I love that you have also shared your story to help others. HIGH FIVE, friend!
Back at you! 🙂
I’ve just read you post and like to tank you ….
We have little NG tube baby 💖
Hi there! Hope you’re getting the support you need. Thank you for your kind comment.
My daughter is 4 months old , and it was determined in her swallow study that she has nasal regurgitation and was not able to coordinate her suck swallow and breath. I was 40 weeks and 5 days when I gave birth to her . While in the NICU with a NG tube they tried bottle feeding her every 3 hrs and then what should couldn’t drink in 30 mins ( because the nurses and speech stated if she goes past the 30 mins she is burning up energy and not gaining weight)
Once we got home she was 3 weeks and not gaining any weight as we were informed when our doctor saw her at 6 weeks so we strictly tube fed, (speech said no bottles because of silent aspiration ) My little one loves her NUK pacifier , it’s really helped with her sucking since she does have a high pallet. My LO was taking full bottles at one time with pacing! Now she is not interested .. does not care for it. She is teething and will grab the bottle just to chew on the nipple or always gags when she puts it in her mouth. Speech has told me that it could be because of her condition ( hemifacial microsomia) the left side is affected. We are scheduled for a consult for a g tube at a Children’s Hospital. Emilia also has larangylmalacia and bronchmalacia. She is tube dependant. I would really like some help to help my little one!
I don’t want to take the NG Tube out until I know she can atleast have some success with a bottle ! I’m So lost but you’re post about Stella made me feel so hopeful!
I have been telling my team all along that lack of hunger has to be a main reason why my son’s oral intake went down to zero… So frustrating! (It is my MISSION to address this after his upcoming 2nd heart surgery… He definitely has the skills to eat…).
We are also on Elecare and I think taste has to be addressed. I’ve heard of using alcohol free vanilla, and your baby food idea is great. Would you be able to say how much baby food you added to what amount of formula?
Thank you all for doing this! I’m really hoping we can find some help here!! Our son had 3 heart surgeries not long after birth and spent the first 6 months of his life in hospitalization hanging on by a thread. Now 8.5 months later he is home and doing very well. But he has been on a PEG for many months. His first 2.5 months on the hospital he had a breathing tube down his throat which got really hard on his gag reflex so now when we are ready to wean him off his tube we can’t hardly get anything I his mouth and he gags. We have gotten him to take little sips of water and sometimes gags but anything with flavor sets him off! Has any one felt with this? Anyone know where to find help? Thank you all
i have a 3yr old disabled son. i had a gtube put in around 1.5 yrs ago. at the 1yr mark i had talked to his dr.s that placed the tube. we talked about how good he was eating from the mouth and if we could take it out. and deceided for we could leave him off the tube the more he ate from the mouth.well just recently he was admitted to a hospital thats unfamiler with childrens feeding tubes.when he was released they told my wife she needed to feed him with the tube for 20 hrs then off 4hrs. he got sick 2 more times and was admitted both times. 2 of the 3 times he had gone back he had lost 1-3 pounds. now we r about ready to be released the 3rd time. and dcfs shows up with a warrant to take both of my boys. they said its because of medical neglect because i aint following there feeding regiment and he had lost weight . i am going with what me and his reg. dr.s has talked about,not what these dr.s that r only dealing with him on emergancy bases.
what would u do
Wow, Bill. I’m so sorry you have been put in this unfair and upsetting situation with being charged with neglect. Where are you located? I would recommend contacting Markus Wilken, a man who has weaned children all over the world and who can probably help you navigate this: https://www.linkedin.com/in/markus-wilken-6166092a/ or Olga Owens (a lawyer and a parent who has helped coach parents through many tube weanings for their young children) of Growing Independent Eaters: https://www.gieaters.com/. You have a strong case, are clearly a caring parent doing what’s best for your child and I think you just need the right support. You are dealing with so much already, having this battle on top of it all–it must be so stressful. Please keep me posted. I wish you the very best. You will get through this!
I found this blog helpful in weaning tube.