Saturday, March 31, 2012

Tube Weaning

Tube weaning Juliana has reminded of potty training. You slowly work towards it, you try it out here and there, it's messy, it might not happen the first few times, you think it will never happen... and then one day everything clicks.

Of course there are also some major differences. Namely, tube weaning is one of the most exhausting and terrifying things that I have ever done. We have been working towards this for a year. Theoretically we have support from our GI doctor, our feeding therapist and our nutritionist, but ultimately I call the shots. They can all give me ideas (and they have) but none of them are here with me to evaluate what Juliana has eaten each day and whether or not she needs more. No one else deals with the fear that I am starving my baby while I wait for her hunger to kick in. No one else understands the raw emotion when she doesn't eat what I think she should or the elation when she exceeds my expectations. Most - but not all - of the professionals we've worked with do understand the emotional implications of having a tube-fed child. Those who have taken the time to understand her issues have been impressed by her progress.

I've said it before and I'll say it again: I truly believe that GAPS is the reason why Juliana now eats so well. I can't imagine what it would be like to try to stumble around in the dark to find safe foods for her to eat. Our path has been rocky at times but it's still getting us there. She feels good, and so she eats.

All of this to say... we now have an oral eater. It's now been about two weeks that I have not used the feeding tube at all. Juliana has maintained her weight during this time. The next step is to get her to gain weight - that is what will need to happen before we can pull the tube. And of course, I hope and pray for no regressions in her eating (that is something that we have experienced - temporarily - before).

Kids have feeding tubes for different a variety of different reasons. I am not an expert on anyone else's medical issues. That said, when the issues are related to the GI tract, then I think that GAPS is the answer for maximum healing. I try to be careful about making unequivocal statements like that, but everything that I have learned and experienced has pushed me in that direction. As parents of tube-fed kids we have a huge advantage - it doesn't matter if our kid doesn't want to eat a diet consisting of broth and liver! In this way I have always been thankful for the tube (and maybe once or twice I've wished that the rest of us had one, too...).

I would share the mechanics of our wean but I really didn't have a firm plan. Many people follow fancy schedules where they reduce tube feedings by a certain percentage for a certain number of days. I didn't do anything like that. I just started slowly dropping feedings until the next thing I knew, she was getting 3 oz in the morning and 3 oz in the evening. Believe it or not, even with giving her only 6 oz a day, it took some willpower to stop altogether and let her manage her hunger all on her own.

A few of my favorite resources during this season of tube weaning:
The Crunchy and the Smooth - Heath's wean was an inspiration to me very early on in our journey.
I was also inspired by Stella's story. (Her story is evidence that feeding tubes can happen to anyone - not just to kids with complex health issues).
On Stella's site I found a link to a lecture by Markus Wilken. Markus is a child psychologist who worked at Graz and has helped free hundreds of kids from their tubes.
Also check out the inspiring story from an excellent GAPS blogger on her formerly tube-fed son
Last but not least I have been very encouraged and helped by other posters on the forum Tube Fed Kids Deserve to Eat.


  1. ahhh what an accomplishment! way to go! so excited for Juliana's progress. God is good. SOO very good! :)

  2. Thanks for sharing Juliana's progress and these great resources, I will tuck away for a later use. ;)