I have to say it. I hate feeding. Or rather, I hate feeding disorders. For two and a half years, we’ve been desperate to avoid the g-tube and have managed to do so, so far.
As far as feeding goes, it is a see saw ride between hope and discouragement. I find that Charlie’s feeding disorder affects my relationship with food.
Before all this, I relished mealtime. Now, eating feels more like a mundane chore. I’m no longer excited or enticed by dishes or deserts.
I’ve lost the ability to derive pleasure from eating. It has become a routine like brushing one’s teeth… something we do to stay healthy and alive.
I blame the change on our struggle with Charlie’s feeding disorder.
Our most recent set back happened at her last weight check. The use of erythromycin has helped significantly with Charlie’s gastroparesis (delayed gastric emptying). Charlie indicated that she was ready to attempt a slow transition to solids.
Not only did she tolerate solids (soft solids), she ate well. We continued to offer her the usual formula but we introduced more solids. At first, it was mostly for practice. But she enthusiastically gobbled the offerings and also wanted to try the food on our plates. We happily indulged her desires.
It seemed like between the formula, what she ate off our plates, and the food we offered her that she was always eating.
When it was time for her weight check, I was excited. I couldn’t wait to see how much she gained. I dared to hope that it was the beginning of the end of her feeding issues.
The nurse placed her on the scale and announced her weight. I gasped. How could she have possibly lost weight?
I tried to figure out the inconsistencies. Was it the same scale? Was it a naked weight? Was the scale zeroed properly?
I couldn’t figure out the missing weight. That day, I called the feeding clinic and let them know that there may be a problem. I wanted to be proactive before it turned into a bigger problem.
The feeding clinic’s dietitian requested that I keep a food log for Charlie. I diligently and meticulously (I have chemistry experience) documented every morsel of food that Charlie ate.
However, I discovered a problem. Charlie eats very slowly and pauses frequently because she is tired. This is why she eats all day.
The dietitian wanted me to break it up into breakfast, lunch, and dinner. But, Charlie ate continuously through out the day and there were no defined meals. I documented everything by day. The dietitian could figure out breakfast, lunch, and dinner.
The results? Charlie consumes 130% of her caloric needs. She also consumes more protein, vitamins, and nutrients than required. As of right now, we are unsure why she lost/is losing weight.
But, there are a few theories.
First, Charlie is extraordinarily active for a two year old. Maybe she is burning more calories than she is taking in.
Second, maybe there is an issue with poor digestion or malabsorption. When she was 100% formula fed, she didn’t have weight loss issues as long as she ate the amount of formula recommended. But, the formula is fully hydrolyzed (broken down) which makes it easier to digest.
It could be none of these things.
Maybe the weight loss was just a random fluctuation or there was an error during the weight check. And, her next weight check will be better.
Her next weight check is in a week. I hope it goes well. I have my fingers crossed that this is just another scare. If not, her follow up with the feeding clinic is the following week.
A sneak peek of Charlie’s Halloween costume which she wore this week to Chuck E Cheese.