Tube weaning story

[Note to any blog readers who stumble upon this post:  this was written for a different website and posted here for convenience.  But you are welcome to read it!]

My son Josh was born with Pierre Robin Sequence (PRS) and a rare chromosome disorder called 4Q deletion syndrome.  Children born with PRS have a recessed jaw and a cleft palate, which causes trouble with both breathing and eating.  Children with 4Q deletions often have feeding and swallowing difficulties as well.  Josh started using an NG tube on the day he was born, and he had a Mic-Key G-button placed at 4 months.  Although he was able to start tasting food as an infant, he was almost exclusively tube fed for his first 18 months, while he underwent a series of craniofacial surgeries that made it safer and easier for him to eat.

After he finished the surgeries and passed a swallow study, his pediatrician recommended that we immediately start an aggressive tube weaning program (cutting the number and volume of daily tube feeds he received by a third), which she hoped would kick-start his oral eating by making him feel hungry.  We tried that for a month, but his oral eating did not take off as hoped, and instead he just lost weight.  At that point, we realized that he still had some weakness with chewing and swallowing, as well as a significant oral aversion to almost all foods.  We started him in feeding therapy with an occupational therapist, we increased his tube feeds back up to previous levels, and we let him work on oral eating at a pace that was comfortable for him.  Every 3 months, we made a list of everything he ate orally for a week, and then we would check in with a nutritionist to see how he was doing with calories and nutrition and decide whether we could decrease the volume of tube feeds.  (Just to be clear, we were not waiting for him to get to the point where he ate a perfectly balanced diet of all the most nutritious table foods - his diet was and still is extremely limited, mostly pureed / smooth / easy foods, and was never the table food I prepared for the rest of the family.  His nutritionist understood the limitations and was not looking for perfection, but she helped us make sure that he wasn't experiencing any serious nutritional deficiencies from his limited diet.)

He made progress very slowly, and sometimes (often?) it felt like we would never get to the point of tube weaning.  There were many days where I felt discouraged about the slowness of the process - even though I know each child goes at their own pace, it sometimes felt like we were stuck in a permanent rut.  But we were so grateful to have the feeding tube, so that he could stay healthy and continue growing and developing while we found the oral eating approach that would work for him.

Josh's stoma2 months after we took out the G-button.

The tube weaning process took a few years, but eventually Josh increased his daily calorie intake enough that we were able to stop using his G-button, and we found the combination of foods that he was able to eat, willing to tolerate, and that would provide him a good nutritional balance.  We still use supplements, high-calorie nutritional drinks, and multi-vitamins to round out his limited diet.  The doctors decided to keep Josh's G-button in for a full year after he stopped using it to make sure that he would continue to gain weight, take his medicines, and continue to orally eat as we made some big changes (our family moved across the country during this process).

Our GI doctor gave permission for us to take out the G-button around Joshua's 5th birthday.  We took the button out at home, and we celebrated with cupcakes with green frosting and sprinkles (Josh's request).  We covered his stoma with gauze and medical tape for the first week, but it stopped leaking after the first few hours.  Josh did great with the button removal!  We thought that it might be really hard for him to see it go, since he had it in place for his whole life and we all treated it like a part of his body, like a second belly button.  But I think it helped that he had some control in the process (he helped us take the button out for the final time) and that we had a celebration (so he understood that it was a positive change).  We had an appointment with our pediatric surgeon a month later, and the surgeon said that he didn't need it surgically closed since the stoma stopped leaking on its own.

To any of you who are weaning your super tubie, please don't be discouraged if it takes a long time, and especially don't be discouraged if it takes longer than your doctors think it should.  Our doctors seemed to be mystified that Josh couldn't eat 100% orally the minute he passed his swallow study.  But in connecting with other tubie families, I've learned that every child really is different in how they wean - they all have different medical and developmental needs, not to mention different personalities!  You know your kid best, and for many kids, letting them take their time with the tube weaning process is the best (and only) thing you can do.