C is getting approximately one illness every 4-6 weeks right now. It is exhausting and frustrating. Almost every time he gets an illness, he gets diarrhea. This is also frustrating and exhausting, not to mention gross! The worst part for me is that when his GI Tract is upset he doesn't eat.
We spent the first two weeks of C's life in the NICU where he was tube fed and they'd extract and inspect his stomach contents before each feeding. They measured every milliliter he ate and recorded the weight on every diaper we changed. This practice continued through every hospital stay.
We spent the first three months of his life weighing him 1-2 times a week. When he came home from the hospital and I was allowed to start nursing over night, I had a scale I'd weigh him on before and after he nursed to find out how many ounces he drank. Even after we had the all clear to stop fortifying the majority of his feeds, we still talked about his weight at every doctor's visit.
And now, he won't eat. It is absolutely insanity inducing. Thank goodness I'm still nursing or he'd be taking in 0 nutrition right now. I can't imagine how much weight he'll have lost next month when we go in for Synagis.
Honestly, I think I've been permanently traumatized by the focus on weight.
ETA: I know I should blog more, I'll work on it :)
I can totally sympathize with the weight issues being traumatizing. We are down to every other week weigh-ins and it is exhausting. Knowing that a maintain or loss means the scrutiny of Hope's cardiologist, nephrologist, and dietitian makes it stressful. I will pray for a very short-lived bug and not too much weight loss.
ReplyDeleteYou are going through a lot. I can relate to the eating stress. You'd think it would end!!
ReplyDeleteHave you considered probiotics and other supplements? I would question whether or not it is a true bug or a reaction to something...I pray for some answers!
Charlie's got VUR so he's on a half dose prophylactic antibiotic. We give him a probiotic every morning and the antibiotic at night. My theory is that he is always on the edge of having loose bowels and anytime his system gets even slightly out of whack with a bug it tips over the edge. It seems to last 7 days each time. It is exhausting.
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