It's exhausting.
What I really want to know is how many calories am I burning each day just trying to calculate her calories at every meal?? (I joke... But, seriously...)
Having a complex medical kid requires a level of calorie calculations that is not even on the radar for parents of normal kids. For the first four months of Brooke's life she was on continuous feeds, meaning that 24 hours a day, food was being pumped in to her feeding tube. The machine for her feeding tube is set at a specific speed and dose amount (like medicine), and you simply hit run, and viola, you're tube kid is being fed. And for four months that machine ran non-stop.
It's strange. And even though using the machine sounds horribly convenient and efficient... Trust me on this one, it's not. Though, when it comes to tube feeding, the pump system is by far the easiest, I some respects.
When Brooke started to struggle with retching after every meal, around 7 months old, we started to experiment with syringe feeding, and then settled for a long while on gravity tube feeding.
Gravity tube feeding = not efficient. However, at the time it seemed to help her feel more comfortable at meal times, so we stuck with it. So glad we've abandoned gravity feeding for the pump system and syringe feeding again.
Anyway, tube feeding requires a crazy amount of calorie obsession for us. Since Brooke is not able to get calories by eating by mouth (it comes out of her spit fistula, on the side of her neck), and because she never really learned how to tell hunger and full feelings from being on continuous feeds, and then strictly scheduled feeds, coupled with NOT eating by mouth, we have to count every calorie, every ounce, every drop to make sure she's getting enough.
Throw in the mix that Brooke struggled with weight gain for about five months as a result of complications from long term tube feeding (the post-meal retching mentioned earlier), her entire medical team is constantly grilling us on how much we are feeding her.
(Didn't you hate test day? Like right before a big final? The stress, the late night studying, the checking and rechecking that you memorized each test item and topic covered that semester? Yeah... That's how I feel before every single doctor appointment for Brooke. And afterwards? I feel like I failed miserably and forgot to answer all the questions, and left important pieces of information out of the essay question.)
So, we've kind of hit a snag in the growth department again. Just over a month ago, I switched Brooke from formula to a blenderized diet (meaning I take regular food that normal people eat and purée it so it will easily pass through her feeding tube). The blenderized diet (BD) has done AMAZING things for her- all of the retching that medicine and formulas couldn't fix went completely away (woohoo!!), her intolerance of volumes of food greater than 4 or 5 ounces went completely away also, and now that her tummy feels better she has really taken off on learning to eat by mouth. BD makes me want to do the happy dance over and over again!
But, in my learning curve to calculating calories and ounces for BD... She lost some weight. At least a pound. She has since gained that pound back, but it puts her back up to the same weight she was two months ago when we last met with her GI doctor. Which means when we saw him last week, he was very upset with me changing her diet (without telling him... But I had Brooke's pediatrician on board and got her nutritionist involved to help monitor the calories).
Sigh. This is the life of a complex medical kid. Every victory is overshadowed by some other complication. So, now I'm obsessing about calories even more than I had been. And weighing her every other day.... And in the past week her weight has not changed. My anxiety level has climbed to a 20 out of 10, and I just can't figure out why when I measure her calories so carefully she's not gaining faster!
Her GI doc seems to think we should be able to gain 3 pounds in the next few weeks.... Because she did it once before, so it's totally normal, right?!?!?
Ok, I exaggerate... Maybe. But, still, if I could get at least an ounce or two ticked up on the scale, then I might be able to sleep at night.
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