For being inanimate, the scale is an emotional object. There are people who check their weight methodically, people who vehemently refuse to step on a scale, people who insist that the scale is too high or even too low, people who feign indifference, and people who weigh a couple times a year just to be surprised by the result. For us, the scale has been a focal part of our lives since the day Francesca was born.
Unlike normal newborn situations, where the older the child gets, the less frequent doctor appointments and weight checks become, we have had the exact opposite experience. Over the past two years, Francesca has been weighed regularly, frequently, and faithfully. We have known her weight to two decimal places at almost any given time. She used to scream and cry, but has now found her bravery and become accustomed to the tradition.
Last years’ weight checks were largely a reflection of our actions as parents: how many tube feeds we were able to successfully administer, how many times we woke in the night to feed her, or, conversely, how many times we slept through the alarm and missed a feed (skipping just two night feeds in a week resulted in no growth). Before every weight check, we hoped for the best, but also prepared for possible disappointment and guilt.
Yesterday was filled with a different kind of nervous anticipation. It was the first time in over a year that the scale was to reflect Francesca’s autonomous eating. She had been tube free for nine days and had taken such phenomenal bites. We were poised with the camera hoping to capture the number on the scale reporting that she had been able to maintain her weight. That wasn’t the number we saw and we didn’t take the photograph.
I know we will soon capture and celebrate that moment. We are just not quite there yet. Even though I was initially disappointed and even a little scared that she has continued to lose weight, I have considered and re-considered both the experiential and medical facts and determined that I need to look inside myself for more patience. Francesca is enjoying eating and our job is to patiently wait for her to start enjoying eating “enough.”
Francesca weighed 9.31 kg (20.48 pounds), which is down 11% from her pre-tube weaning weight. However, she has also started to lose weight half as quickly as she was previously. An intermediate accomplishment to celebrate! She lost 200 grams last week, compared to her previous weight loss of 400 grams (during which she was still receiving one or two tube feeds each day). It simply takes time to compensate for such a large caloric deficit.
To help Francesca reach the threshold of “enough,” we have stocked up on plenty of ice cream, a variety of whole milk cheese, heavy whipping cream, and almost every snack imaginable. She needs 1,100 calories a day. We have started to add two tablespoons of heavy whipping cream for every five ounces of soy milk (careful not to exceed 30 calories an ounce for the safety of her kidneys). We add butter to everything. We grocery shop, cook, clean, and hope.
In spite of having yet another miserable cold, Francesca is doing amazingly well. A head full of snot is a discouraging appetite suppressant, but it is also temporary. There have been longer intervals of disinterest in food, more temper tantrums, and plenty of whining. There have also been moments of success, exploration, and sheer happiness. She has turned to her comfort foods and we glow with pride to report that ice cream has replaced ice cubes.