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, 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 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 racked my brain 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.
Third, 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.
Fingers are crossed for weight gain next week! Its amazing that Charlie is wanting to eat lots of solid foods now and even the food you are eating. It must have been so disappointing to see that she lost weight even though she was eating so well. I hope that the numbers are better this time. I know what you mean about losing the joy of eating because of the feeding disorder. I felt the same, especially around holiday meals, with Hunter's feeding struggles.
Let us know how it goes next week.
I am so sorry that you're dealing with this. It's so frustrating when you think you're doing everything right and that one little thing, the scale in this case, comes along and derails you.
You are an amazing mom and Charlie's best cheerleader, advocate, therapist, nurse, her best everything. I know you will figure this out because I know you won't rest until you do.
I hope you can start to love food again too as Charlie begins to do so.
Thinking of you,
Thinking good thoughts for you and Charlie for the next weight check.
I will be holding my breath right along with you until her next weight check, hoping that it was just a flaw in the scale. Sending you lots of positive thoughts.
I am so sorry for your struggle. That feeling of not getting head way is frustrating. But yay for Charlie on solid food and LIKING it! You need to feel some accomplishment in all of this. Some kids never come of the "liquid" diet so I have heard and she is eating soilds and EATING THEM WELL! THAT IS SO AWESOME!
You are such a strong women for your resilence in all of the hardships and taking them with such heart. I pray for you all everyday and look for the updates on you and wonderful Charlie!
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