Today I made a mistake that led to a shocking discovery.
I clean out your pump bag each morning by changing the rate from your usual 78ish ml/hr to 400 ml/hr, and letting hot water run through the tubing while I do other things. Then I change it back for your 8am feed. Today you stayed home from school--you are recovering for some tummy bug or an Audrey episode--and slept till nearly noon. When I woke you up, I noticed the settings were still at 400 mls/hr.
Ugh. Immediately I kicked myself. This is no small mistake. The consequences could be...then it dawned on me. Why weren't you vomiting? On a good day I would have expected you to send it all back up at once, but even sick you had kept everything down.
I have been told by a few other SLOS moms that their kids do better if given their feeds quickly all at once rather than slowly over time. It seems counter-intuitive to fill you up since you have such slow motility, but it seems as if a longer break does the tummy good. I have always wanted to try feeding you faster, but had visions of popping your small stomach with too much volume. So I inched it up and then backed it down whenever you got sick. Up and down, again and again. When Luke was born priorities shifted until I forgot all about increasing your rate.
But this morning shows me I can make more aggressive changes and can possible expect better results. My plan for now is to increase each feed by 10 mls/hr until you start showing signs of discomfort. It will be amazing if we can significantly decrease the amount of time you eat each day, giving you more freedom from the pump. Ultimately my hope is that fast feeds mean quicker digestion which might allow me to feed you more frequently. And that may result in your first weight gain in over two years! You, my tiny (but mighty) Shnook, need to bulk up.