Love you through this

The first time I heard this song, I cried.  It (obviously) isn’t about FPIES, it’s actually about breast cancer but it made me think so much of what it takes to be an FPIES parent.  I am by no means comparing cancer to FPIES, but I find any illness can identify with the lyrics of a beautiful song.   Many times, there isn’t anything else but love to get us through.    Get us through the dark and lonely nights, holding your baby who is in pain that you can’t take away; get you through the multiple appointments trying to figure out the complexity of your little man’s FPIES, hospitalizations, procedures and tests, food trials and reactions, hunts for safe foods, pulling them through and out of failure to thrive…

I write this as I am sitting with Little man while he takes his bottle, which I do multiple times a day.  My day is planned around it actually.  Much like when nursing an infant, I would nurse and then know I had 1-2hrs. before I would need to be in a place where I could nurse them again- a private, quiet place- not shopping or out running errands, or driving; but able to meet their needs.   To this day, we still make plans knowing how far we can go between bottles. He will eat while out now, just less- so we don’t have all day or hours on hours to be away from home or he is set back.   He eats better if I am sitting with him.  Maybe it goes back to our nursing days bond, maybe it’s just simply that I’m mom.  Maybe he’s just very routine orientated.  But it is what it is, it is what he needs, it is love, and I will love you through this. 

Even with TPN supplying ~800calories in his overnight feeds, he still needs to eat every 1-2hrs. through the day.  Recently we have discovered some hypoglycemia (more about that in a future post, if I can ever get caught up here); so it makes even more sense that he thrives better on these small frequent meals. 

My 3^rd little mudpie, who is 4yrs.old, eats non-stop throughout the day (ok, maybe not non-stop but it sure seems like it some days!).   I had a realization recently that this habit (that is currently an inconvenience because of there being constant exposures to food, reminders of food that little man can’t have, while he watches his big brother eat) will someday (hopefully soon) likely come as our blessing- that to get Little man to eat enough throughout the day (when he has more safe foods and post TPN),also to meet his hypoglycemia needs and his disaccharide deficiency, he will need small frequent meals throughout the day.  Likely, the bulk of these calories will still come from his formula and now the addition of his “juices”.   Currently he only nibbles even his safe foods- either he is just being cautious or he simply does not know that he is supposed to fill his belly; or he is self limiting so that he doesn’t go over what his body can break down in one setting (being that he lacks every digestive enzyme to break down sugars/starches).   But one day, nibbles will turn in to servings, and servings will turn into snacks and snacks will turn into meals.   One step at a time, one day at a time, I will love you through this.