Jack went through an intensive feeding program at Seattle Children’s Hospital at the age of two-and-a-half to transition him off of his G-tube and to oral feeding. The program was run by Karen Quinn-Shea, an occupational therapist at Children’s Hospital in Seattle. We dubbed the program “Fun with Food” to help two year old Jack understand what we were doing.
The intensive feeding program at Seattle Children’s Hospital is two weeks long and conducted at the facility. Each day during the first week (Monday – Friday), Jack and I would have breakfast, morning snack and lunch at the hospital with the therapist. He was still napping so we would come home after lunch and I would work at home on afternoon snack and dinner. Older kids stay through afternoon snack. In between each meal/session we would play at the hospital or go to a nearby mall to have a break. Below is a schedule I sent out to friends and family to illustrate our day.
7:00 am – leave house
7:45 am – arrive at Children’s Hospital and say hello to all of the fish
8:00 – get weighed and head to the cafeteria to pick out our breakfast
8:15 – sit down to breakfast
8:45 – breakfast finished, time for tube feeding and head out
9:00 – get to UVillage Starbucks for a latte
9:20 – play on the UVillage play structure
10:10 – head back to Children’s
10:30 – meet Karen for snack time
10:50 – snack finished, time for tube feeding
11:10 – check in at Children’s playroom
12:20 – meet Daddy at waiting area
12:30 – go to cafeteria to pick out lunch
12:40 – sit down for lunch
1:10 – lunch finished, time for tube feeding
1:30 – leave Children’s for the day
1:38 – Jack asleep
2:15 – arrive at home, transfer Jack and unpack car
3:00 – Mommy finally sits down
4:00 – get Jack up from nap
4:15 – have snack
4:35 – snack finished, send Jack outside to play
5:30 – Daddy home
6:30 – sit down for dinner
7:00 – dinner finished, time for tube feeding
7:10 – Jack and Daddy play
7:40 – bath time
8:00 – bedtime stories
8:10 – Jack nigh-night
8:15 – Mommy and Daddy collapse on sofa
As part of the program, we cut Jack’s tube formula feedings back from 35oz to 18oz at the beginning of the program. Throughout the program we cut back his formula to only one nighttime formula feeding and the rest water. We used the G-tube to help with his fluid intake and keep him hydrated until he was able drink enough on his own.
The middle weekend of the program gave us our first taste of what life would be like after the program when we were on our own. During the second week of the program we started with the same schedule and gradually tapered down to just having lunch at Children’s on the last Friday. After that we would have weekly weight checks at our pediatrician’s office and communicated with the team via email.
During the early meals/sessions, Jack would be rewarded for taking bites of food with a small toy being activated (like a windup toy) or a movie turning on. In order to keep the toy going or movie on he would have to continue to take bites. Since he was old enough to understand cause and effect he quickly figured out that he could get rewarded for taking bites. By the end of the program he didn’t need the stimulus as much and would just sit and eat with us. This is also when and how Jack learned to do cheers with a cup. What better way to incent someone to drink, right?
At the beginning of the program Jack ate only 12% of his calories by mouth. By the end of the program he was taking 71% of his calories by mouth. He came through the program very well, preferring to try a variety of different foods initially before increasing the volume of particular foods.
The timing of the program was perfect for Jack, because he wasn’t fully aware of what his G-tube was for. We sat him at the table with us for each meal and would give him finger foods and a cup to practice his eating skills. At two and a half he was willing to follow our directions and understand the concept of cause and effect.
Over the next three months we gradually tapered off all his G-tube supplements, formula first then water. Six months after that when Jack was just over three years old we removed his G-tube for good. And he symbolically and uneventfully threw it in the garbage and never looked back.
We are forever thankful for this program and the staff at Seattle Children’s that worked with us through it. Jack’s transition to eating couldn’t have been any smoother.