Wednesday, February 8, 2012

Tube Weaning

When I think back on our time at Seattle Children’s Hospital, I have really fond memories.  We couldn’t have asked for a better experience.

In fact, I loved it so much, that I often refer to it as our “Seattle Vacation”. The majority of these good feelings, if I am to further inspect, are probably from the basic fact that Jack went into it being 100% tube fed, to leaving 90% orally fed. Talk about a success rate!

Tube weaning is pretty simple. For the Seattle program, about a week before we left, we started to decrease the amount of formula we were putting through the tube. We replaced it with water. Gradually over the week, we narrowed Jack’s calories down to where he was only receiving 10% of what he normally did. The theory was that hunger would be the best catalyst to encourage eating (duh!). But it’s never easy for a parent to willingly stop giving food to their little one in the hopes that extreme hunger and deprivation will motivate eating.

We had our doubts. In fact, Jack had been on a few self-imposed hunger strikes before our Seattle trip and those didn’t produce much more than lost weight. Still, we had heard wonderful success stories and hoped that Jack could join the ranks of being an eater.

When we got to Children’s we immediately met our team – a feeding therapist, a dietician, and a doctor who would be looking at Jack’s general health and making sure he wasn’t dehydrated. I immediately felt at ease. We had never had such comprehensive care. A team working together in such a way was kind of unheard of in our rural state.

And we jumped right into Jack’s feeding intensive. Jack was sat in a high chair and offered food the very first session, the very first day. Immediately, he started taking licks of whatever we put before him. He actually ate a few bites of soft foods that day as well. He wasn’t drinking much. After each mealtime, we would give him water through his tube to keep him hydrated, but never formula. This was his two week chance to learn how to eat in total hunger.

Gradually, through each and every meal session with the therapist, Jack got a little more adventurous. He started to eat whole containers of yogurt. He started to take bites of veggie straws. He started to sip out of a cup. It was amazing to watch. Our little guy, who just weeks before wasn’t opening his mouth for food, was willingly letting us feed him. We were on top of the world.

We learned so much from the feeding therapist. One of the main lessons that she gave us was to just let Jack be in charge. Follow his cues. Don’t force or push. If Jack is going to become a life-long eater, he would have to make the decision himself. Talk about a hard lesson for us! But, at the same time, it was very freeing. Both Jon and I came to the place where we just had to let Jack BE, eater or not.

We were in Seattle for two weeks and we left with an eater. It was the most progress we had seen ever in Jack. The feeding therapist said that it often takes a few weans for kids to become full-fledged eaters, and some never will, but Jack was ready.

Today, Jack gets all of his calories orally, meaning he eats enough to grow like a champ! We only use his feeding tube for water and meds.  He is still learning how to chew, eat food with texture, and to drink. Those will come, but it will take lots of time.

And I sit here, with a smile on my face. 

we stayed on the Ronald McDonald House

in a feeding session

we started to put Jack's drink in a Starbucks cup because it's the only thing he wanted! 

giving Jack water through his tube after his meal

Jack with the super fabulous Karen, feeding therapist at Children's

If any of you are interested... I blogged extensively while we were at the feeding clinic. You can read it all here.

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Arianne said...

He has such a beautiful face! It really lights up the room.

The Kimmels said...

He is so cute. Isn't Children's wonderful!? We are going there on Thursday to see Cohen's pulmonologist and cardiologist :)

Julia said...

Loved reading about your weaning experience!!! I am so happy for you!! Sounds like Jack has made amazing strides to become a functional eater!!! I have a few questions, so I hope you don't mind!! 1) how old was Jack when you entered him into the program, how old do they want them to be? 2) how did you settle on the Seattle feeding program vs Hopkins? 3) if you don't mind ne asking how much does this cost and does the insurance cover any of it?

thepenafamilyblog said...

Thanks for sharing! Did Jack have any issues with gagging and vomiting? That is where we are with solids with our Jack. We are seeing a feeding team and working on weaning and eventually increasing solids. The ONLY thing he eats is yogurt.

Jessi said...


-I don't mind questions at all!
1) Jack had just turned 2 (May of last year) when we entered the program. You don't have to be a certain age. They say the younger, the easier. Another little girl, who was 4, was also there during our time. They keep the program very small, with only 2 kids every 2 weeks.
2) I am not as familiar with Hopkins, but the reason we chose Seattle was it was in the West (close to Montana), a very good success rate, and it is hunger based, as opposed to behavioral based.
3) Our insurance covered it and most of the time, they told us that insurance will cover. They bill it as an Occupational therapy visit, 4 times per day, 5 days a week over the 2 week period.

For more info I blogged in detail about the experience... just forgot to link it this morning

Jessi said...

@thepennafamilyblog - YES! Jack has always been a puker and will gag still if he doesn't like a certain texture in his mouth. He did puke a whole lot more when he was tube fed though. That just goes along with the territory. There's just something about a tube that makes for a lot of puking. Probably once a day and then once we didn't give formula through the tube anymore, Jack pretty much stopped puking as much... just when he gags and gets something caught in his mouth/throat.

Nicole said...

We love Karen and had a great experience there too! Glad to see Jack doing so well now.

Jenn Porteous said...

How do i get in contact with this clinic in Seattle? Thank you for sharing your story, very inspiring!

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