“love your crazy, unbelievable, challenging, side-splitting, spontaneous, improbable, unpredictable, exasperating, big-hearted, absurd, delicious, abundant, inspiring, joyous, daring, jaw-dropping, beautiful life.” -Unknown
That string of adjectives perfectly describes our last few days. As it turns out, the last tube feeding (the one that I was carefully emotionally preparing for) never actually happened. On Monday night, right before bed, Francesca ate just enough Kix cereal and drank just enough water that we decided not to take the risk of over-feeding her and causing her to vomit, which would have been a negative experience for us all. Both Alfie and I have felt an incredible shift in the somewhat more sudden than expected disappearance of the responsibility of tube feeding. Francesca has been 100% tube-free and in charge of her own caloric intake since midnight on Sunday.
This step has been both liberating and terrifying. We are all still in a fog of disbelief that Francesca actually eats, even if it is typically just bites and nibbles. I look forward to that moment when the doubt and awe have completely dissipated and I whole-heartedly believe that our child really does eat. For now, there is a part of me that still feels nervous that eating could be a fad, just something she does for a day or two before changing her mind. During those long periods when Francesca has no interest in food, all of the old doubts and worries start to resurface and I feel the panic that she just might never eat. And then, she does.
We had a doctor appointment and weight-check yesterday. Francesca looks medically stable. The ear infection has cleared up completely without antibiotics, which is a huge relief. Her mouth looked a little dry, but not enough to pronounce her dehydrated. She weighed 9.51 kg (20.9 lbs), which is down from her pre-tube weaning weight of 10.42 kg (22.9 lbs), meaning that she has lost 9% of her overall body weight in just over two weeks. She has 200 grams to go before reaching the maximum weight loss that the Graz program will allow. As difficult as it is to watch her pants get too big, each bite she takes gives us the invaluable reassurance that it is so worth it.
During a trip to the grocery store, the extent of her hunger became hearteningly and embarrasingly obvious. She grabbed apples, took a couple of bites, and threw them. She sat in the cart and asked to open every bag and box. She spit out half-chewed food on the ground. She tried apples, bananas, marshmallows, frosted animal cookies, cheese, carrots, Kix cereal, Cherrios, strawberry fruit leather, apple juice, colored sprinkles, and gummy bears. As we loaded our half-eaten, destroyed, and enjoyed groceries on the conveyor belt, all I could say to the checker was, “I guess we owe you for another half of a banana.” It was a perfect reminder to never judge the parents in the grocery store with the completely out of control child. They just might have a kid who feels as though she hadn’t eaten in two years and be following a child-led therapeutic approach of “waiting, watching, and wondering.”
Francesca has found several comfort foods (in addition to ice): Kix cereal, Cherrios, pretzels, and gummy bears. She has a bowl of one (or a combination of all) in close proximity around the clock. Although I wish they were more calorically dense or nutritionally valuable, I am really just overwhelmed with joy that she is in fact eating. Some people put their children to bed with warm milk, I put mine to bed with gummy bears. She holds them in her hands and in her cheek, like a little chipmunk. She talks about eating their toes. For me, these things trump any advice from a pediatric dentist, at least for now.
It is incredible to wash Francesca’s sheets every day because they have sticky gummy bear imprints on them or half-chewed pretzels smeared all over, rather than to wash them because they are soaked in vomited formula. Yesterday, a pair of Francesca’s pants actually came out of the dryer with butter stains on them. For most parents, that is a moment to dread and for me it was a moment to cherish because it was a permanent reminder that Francesca likes to butter both sides of her toast. And even though she is not quite ready to eat it, I know that it will be delicious when she finally decides to take that first bite.
Francesca has added the improbable, inspiring, joyous, daring, jaw-dropping, beautiful words of “I eat” to her vocabulary. Words we thought we would never hear.