Tube weaning stories

These tube weaning journeys are just a few of many! There are many inspiring weaning stories out there, encompassing a diverse set of babies and children. I add to the list whenever possible (check the bottom of the page for new additions). The weans shared below were, largely but not strictly, centered on principles of the Graz model, with hunger (reduction of feeds over the course of a up to a couple weeks, depending on the child) and autonomy as core principles, with a maximum of 10% weight loss allowed during weaning, and supplemental feeds/hydration provided as needed, based on each child’s individual needs, temperaments, and responses to the new sensation of hunger.

Stella: Tube-fed from two months to four months of age due to reflux, cow’s milk protein intolerance or allergy to my breastmilk, eating refusal, lack of growth. She progressed to taking in 40-50% of her formula orally before the tube was removed for successful weaning. Compared to other stories shared below, Stella was tube fed for a very short period of time: two months. The thing is, there are lots of babies like Stella out there and I hope that her story can inspire some earlier weans–in cases where initial problems like allergies and intolerances and reflux have been addressed but eating refusal remains. To check out Stella’s road to Tube-Free Land, click here.

Zander:  100% tube-fed for 14 months due to “worst case of frank aspiration Seattle Children’s Hospital has ever seen” (according to a doctor there). Then progressed slowly from 0% to 50% oral intake over the next few months, then tube feeds were ceased and he embraced eating . Went from an NG, to a J-G, to a G tube. His mother is a dear friend of mine, so I couldn’t resist writing up a congratulatory overview of  Zander’s tube feeding and weaning journey here on this blog.

Heath:  100% tube-fed until 15 months of age due to injury sustained during a tumultuous birth: “cord wrapped tight around his neck, Apgars of 0, ambulance transport from a country mouse hospital to a city mouse NICU, diagnosis: hypoxic brain injury.” Get his full tube weaning success story at The Crunchy and the Smooth, a wonderful blog written by his mother.

Frankie:  100% tube-fed until 2 years of age due to severe GERD, cow’s milk protein intolerance, eating refusal, Failure To Thrive diagnosis (FTT). She is now a happy eater who participates in swimming, soccer and gymnastics, and she is cognitively advanced for her age! The moving story of Francesca’s triumphant tube wean is documented at Frankly Frankie, a must-read!

Diego:  Tube fed from birth (close to 100% before weaning). Born prematurely at 28 5/7 weeks gestation, and was in the hospital for three months. He was weaned a couple months later. Having been in email contact with his devoted mother, Rocio, I wrote up a synopsis of Diego’s successful weaning experience.

Layla:  Born at 24 weeks gestation and weighing just 590 grams, Layla spent nine months in the hospital and was 100% tube fed for almost three years (via NG tube for her first 18 months, then through a G-tube). At the tube weaning clinic in Graz, Austria, Layla began to eat normally just four days after tube feedings were ceased. Read her truly inspiring story, “Layla’s New Hunger for Life,” as covered by community newspaper Whitehorse Leader.

Logan:  Born at 31 weeks gestation with many rough weeks following his birth, was tube fed until he was three years and seven months old. Though his parents had been told to plan for how he’d be tube-fed when he attended school (weaning never mentioned or considered by the medical experts responsible for his care), his parents proactively sought weaning help from Graz and also found a supportive local doctor. Logan’s wean went amazingly well despite illnesses along the way and a weight plateau. After four months, he was steadily gaining weight and often ate more at dinner than his brother. Logan is now five, loves to eat, and recently asked his parents if he could work at McDonald’s when he grows up. Click here to read Logan’s tube weaning success story in full, as shared by his mother in the “Tube Fed Kids Deserve to Eat” online support network.

Tova: Here’s the summary from the blog that shares a thorough account of Tova’s tube weaning journey: “Born at 24 weeks. Tova spent her first 5 and a half months in hospital. Of those, 4 and a half were spent in intensive care and one month in special care. Because of all the tubes and trauma of being in ICU, Tova developed an oral aversion and refused to eat. She was fed by a NasoGastric tube for the first year or so of her life, followed by a PEG tube inserted directly into her stomach. Tova had never eaten with her mouth until we visited a weaning program in Graz, Austria during January 2010! After 4 weeks in their program we gained a 100% oral feeding baby!”

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16 Responses to Tube weaning stories

  1. Ashly Ebeling says:

    I am researching weaning stories in prep for weaning my 17 month primarily ng-fed son with heart issues. I haven’t been able to find anyone with another heart baby to tell me about how their wean went–do you have any stories like this? I just want to make sure it is possible to do this with kids with cardiac issues. Thanks. And, you are wonderful for putting together this site!

  2. amberhj says:

    Yes, I do know of stories like this! I’ll be in touch. Thank you for your comment! I wish you the best with weaning. It definitely is possible, when the children are stable and healthy!

    • Sarah Gillespie says:

      Hi, I would also love any information with success of weaning with babies that have heart issues. I’m putting together some information to share with my son’s doctors to get their consent on trying a program.

      • amberhj says:

        Hi Sarah, have you tried the ning group, Tube Fed Kids Deserve to Eat? It can be chaotic over there, but there are so many helpful and knowledgeable moms who’ve been through it all, including moms of babies with heart issues. Good luck!

  3. olga says:

    ashley — i don’t know whether you’ve checked out the tubefedkids.com site (which is for people who have gone through or a thinking about weaning via calorie reduction and “self-regulation”), but there are a number of cardiac-baby families on there. i know heart kids have special issues that need to be considered, incl meds. best to you!

    • amberhj says:

      Yes, thanks Olga! Definitely special considerations. Just wanted to say that it’s possible. Most of the relevant weaning stories I know of come from that site, and there is also one I know of that’s shared on a blog but not there. I’ll try to find the link.

  4. Elizabeth says:

    Thanks for your site. My youngest (FTT) was NG fed from five months old until 11 months old. She had open heart surgery for Tetrology Of Fallot at 8 months old and is also very allergic to cows milk. She has been g-tube fed since she was 11 months old and is still g-tube fed at 18 months old. The program in Austria sounds amazing. I am going to use your site for reference. Thanks so much!

    • amberhj says:

      Please let me know how it goes, if you get the chance. Thank you for stopping by our blog. Children are so resilient as I’m sure you’ve already seen! When her heart is ready, I bet she’ll come around to eating and all will be amazed. Graz is a great source of support and expertise and confidence for weaning all sorts of kids and babies. But Markus Wilken, who is a child psychologist who spent some time at Graz during his career, is also a major expert in weaning: http://www.ippec.org/english/biography/wilken.html And you can interact with Markus on the “Tube Fed Kids Deserve to Eat” online support group at http://tubefedkids.ning.com/

      I wish you and your little one the very best!

  5. Emily says:

    Hello just wanted to thank you for creating this inspiring blog!!
    My daughter was born with a congenital diaphragmatic hernia intubated at birth and has been ng fed since she got off IV feeds.
    We have made one attempt to get her off the tube at 2 months but she wasn’t ready and needed to grow stronger. Well it’s time to replace her tube again and we are going to try again. Our situation reminds me of yours. Willa will be 4 months and although she is hungry and knows that food comes from the bottle and is into drinking she will rarely take more then 40 percent by bottle. I feel it’s the tube and I fear that she just won’t take more by mouth.
    When you began the weaning with the tube still in what was her response to reducing the amount ng. Did it make her eat more or did she wait until the tube came out to start eating?
    Just curious about the early stages of her wean. If you are willing to share.

    • amberhj says:

      Gosh, you’ve been through a lot. 40 percent by bottle is HUGE! Stella was only taking about 50 percent by bottle when we took out the tube! Her wean was very successful and relatively smooth (though weans are always stressful so be prepared)….

      What we did was to drop a feeding or two and in general just try to leave as much time between feedings as possible to allow her to be hungry. It helped a little, but not a ton. At least it kept her eating, even if not “enough.” We took the tube out, put her in control (basically feeding on demand), and basically she took off. The tube slows down swallowing, even after it’s removed swallowing can be a bit slow due to the effect of the tube over time, so we thickened her formula which helped her be more comfortable with feeding. There is a ton of info about Stella’s wean here and I hope something will be helpful! Here is a link:
      https://lifeandtimesofstella.com/tube-weaning-resources-and-tips/tube-weaning-stories/stellas-tube-wean/

      I wish you the best with weaning and please let me know if I can provide any morale support or answer questions about Stella’s wean. Let me know how things go!

      P.S. Another great weaning story can be found here on The Crunch and the Smooth, about the wean of a boy named Heath:

      Background:
      http://shawntain.typepad.com/my_weblog/our-story.html

      Lessons learned:
      http://www.thecrunchyandthesmooth.com/heaths-wean-lessons-learned.html

  6. Kamola says:

    Hi Amber!I really enjoyed when i realdyour weaning story,It is really amazing and of course I cry it,b/c I have NG tube baby,he got his Ng tube 83 days ago(he was almost 3 month ) and day by day his getting dependent to his tube,I am never think about to weaning his tube,b/c I never heard stories like yours,your story gives me some LIGHT,My little boy is really healthy he does not have any medical problems except the MILK PROTEIN INTOLERANCE and Acid Reflux.Right know we offering his bottle first then we using syringe feed after that we using NG tube,his PO taking is (bottle+syringe)aroun 30%-55% daily,his bottle taking is 15%-25%.From your experience waat you think,should I have think about tube weaning or the % is really low,his doctors keep telling us about G-tube and I am ignoring them b/c he is a healthy boy,If he has some medical issues I will say Maybe OK.If I want to start tube weaning process with whom I have to be same boat?IF YOU HAVE SOME RECOMMENDATIONS PLEASE FEEL FREE TO TELL ME…..

    • amberhj says:

      Hello Kamola! It’s wonderful that he does eat!

      So he’s on hypoallergenic formula, I assume, so the intolerance has been addressed? His weight is okay? His reflux is successfully treated and no longer causing pain? All of these things are important. If all of those things are set, I would work on getting support from his doctors and therapists for a wean. (Hopefully you work with a speech or occupational therapist and if not, demand to be referred to one to help you support your son’s journey to happy, normal eating.) Ask your medical team to come up with a plan to attempt a wean before a G tube is considered. They will need for you to inform them about the merits of your position, so present the papers presented here to your doctors to help them see that hunger and autonomy–monitored and done safely with regard to hydration and with respect to the child’s individual needs–may just be what’s needed to help your baby eat all on his own: https://lifeandtimesofstella.com/2009/05/21/behold-tube-weaning-research-and-guidelines/

      If you need other support for planning the wean and getting your medical team on board, contact Graz netcoaching (https://www.notube.at/) or Markus Wilken, child psychologist who has weaned hundreds of kids. Markus is part of the online community Tube Fed Kids Deserve to Eat so you can correspond with him there: http://tubefedkids.ning.com/

      Press the issue with your doctors. Make the case. Stand up to them but respectfully, and get their support–with the help of the voices mentioned above if need be. If you do a wean, keep in mind that it is going to take a few weeks (likely) to see the shift to higher oral intake and love of eating.

      It seems negligent to jump to a surgically inserted G tube if this child is capable of eating, his source of pain has been addressed, and he’s just not allowed to be hungry. Unfortunately, doctors know very little about the impact of tube feeding and don’t recognize the condition of tube dependency. Because of this, it’s up to you. You have to do all the educating and convincing in order to make this wean happen.

      Please keep me posted! Best of luck!

  7. Dear Amber,
    I have been inspired by your blog. And so grateful! My Hailey was born at 30 weeks. she ended up having a severe ecoli infection in her lungs and blood , that was resistant to many of the popular antibiotics, making her stay on the ventilator for over three weeks and having 20 blood transfusions. The doctors really didn’t think she would make it. But through God’s grace she made a great full recovery. However, when it came time to start trying the bottle she had a hard time. Our NICU was against sending parents home with babies on NG tubes. I tried so hard to not do the surgery. We were pushed into the Gtube and fundo/Nissen when she was 3 months (1 month corrected.) Even though she was taking 80% of her bottles, it wasn’t enough for them. Since the surgery she will take the same 30-50ml every bottle feed during the day. We have never found a reason why she won’t eat medically. she will suck on pacifier and putt EVERYTHING else in her mouth. The thing is, she if fed continuously 70% of her “goal” feed at night over 9 hours.
    Because of your blog and a few others you listed, and my contacts with other moms through babycenter message board; we have decided to do a hunger based wean through the netcoaching with Graz, Austria medical team. I wanted to thank you for your blog because it helped us convince our pediatrician, and other family members, that this is the right thing to do for Hailey Francis. Our pediatrician is on board and thinks it is a good idea!!! I presented your blog as well as other resources from my many months of researching. I was so surprised when he said he would support us, because we come from an area that isn’t well developed in this type of medical breakthrough, and really doesn’t care how Hailey gets her nutrician as long as she gets it.
    I started a blog when we were in the NICU, and plan to share our tube and weaning story for others as well. I was hoping to referrence to your site on there if it is ok with you?
    http://www.haileyfrancis.wordpress.com
    Thank you,
    Chanci

  8. alisha says:

    Hi, my son is 1 month old and 3 days. He has pyridoxine dependent epilepsy. He has been on a ng tube since birth. My son gets fed ng every 3 hours in the hospital. He gets too tired of sucking when we try to give him a bottle. He is auppose to get 80mls but he only takes 15-30 mls and it can take a while to get him to drink it. does anyone have a child with pde who possibly went through this as well.

  9. Samira Nakhuda says:

    im looking for stories with children with serious oral aversion like my son. Hes had an ng since 5 months currently 11 months. Need to know im not theonly parent out there. No medical history whatsoever and developed oral aversion at 4 months due to oral thrush

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