Thirteen days ago I started reducing my 19-month-old daughter’s calories via her gastrostomy feeding tube (g-tube) with a team of medical professionals at Seattle Children’s Hospital. Thirteen days ago I was very nervous about starting this intensive two-week g-tube weaning program. I was uneasy about leaving my first-born, almost 5 year-old, to take her little sister to Seattle, scared of Gia becoming sick and canceling our third wean attempt, and downright anxious about Gia’s eating abilities.
And here we are on the thirteenth day and my mind is more at ease.
A few days ago Gia developed a cold and I thought we would have to cancel the g-tube wean. But the therapist was convinced that Gia would ride it out and sure enough she did. Slowly, but surely, her interest in food has increased. She only has one tube feeding a day (in the evening) and is only receiving 80% of her necessary caloric intake through her g-tube. During the day I am giving her water through her tube if she does not drink the required 3 ounces of fluids needed for hydration. She has been drinking a few ounces of smoothies, juices or purees recently, so I’ve been subtracting the difference from her necessary fluid intake. It has been least 2 ounces of water after each meal.
But not today.
Day thirteen was different.
You know its a good day when Gia, without hesitation, shovels seven tiny spoonfuls of food in her mouth for breakfast, happily plays with more food at the high-chair, excitedly feeds us, and then finishes up by effortlessly drinking 1.5 ounces of a high-calorie, coconut milk and avocado smoothie.
She was very excited as I carried her down the long hallway to our 11:30 appointment at the hospital, but I don’t think anyone expected what followed.
She ended up drinking 4 ounces of pear puree independently in about 5 minutes. She did not gag, choke, or vomit and she hardly spilled any of it. With a tummy full of 4 ounces, she still ate a few spoonfuls of guacamole, took a small bit of cracker, nibbled a little on a graham cracker and drank an ounce of her avocado smoothie.
For the first time since her birth, I was told not to give her a tube feeding of water. She drank enough ON HER OWN to skip the 3 ounces of water she needed for proper hydration. Granted, her calorie count wasn’t high, but at this point in the program, that isn’t the issue.
And with that simple act of not tube feeding the water, I feel we’ve made it over the hump. It is the first time that I 100% truly believe she is going to do this. She is learning how to eat. She wants to be an eater.
Of course I always believed, deep down, she would eventually be an oral eater. But after two unsuccessful tries I had my share of nagging doubts. Perhaps because I didn’t want to feel the same disappointment I’ve felt before and I was trying to protect myself from the failure, hopelessness and the depression that seemed to follow a failed wean.
So today, for the first time ever, I can let it go; Gia IS an eater. We are not out of the woods yet and she still has many eating skills to learn. She needs to be able to sustain and gain weight without the use of the g-tube. She needs to stay on path when she is sick. The road is long and bumpy, but we are on it and so happy to have come this far on this journey.
In these thirteen days a door has unlocked that Gia had not previously been given a key. And through it we will take baby steps into a whole new world full of flavor.
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