Getting a grip

Earlier tonight I was sitting on the couch, head in hands, crying in exhausted frustration as my daughter wailed through the monitor from her bedroom. Her dad was putting her down, as she was just as tired and miserable as we were, and even though she goes to sleep easier if I hold her, at the moment I just could.not.deal.

The poor kid's been sick all day. I've been trying to introduce new foods to her, so I can transition her to a blenderized diet of foods more appropriate to an almost-two-year-old than infant formula. I think I can put "banana" in the not so good category. She threw up five times between noon and two o'clock; spitting out thick mucus while her stomach contracted so hard I could hear it. She's got to have some kind of allergy, but no matter what formula we give her, there's always something that isn't right. Everything we've tried - soy, lactose-free, elemental, metabolic, organic, yadda yadda - gives her some degree of indigestion that presents itself with gas, mucus, constipation, or projectile vomiting.

We've been at a pretty good equilibrium for the past six months, having found completely by accident that she does much better on liquid than powdered formula. Still, we have had to vent gas from her stomach though her g-tube on a nearly hourly basis around the clock. The last time I slept an entire night was when I went on vacation in April. On a day by day basis, it's not so bad. I can nap with the baby during the day, and at night I go back to sleep easily after getting up about every two hours. Over months though, I'm wearing down. And I'm starting to feel that this is just ridiculous. This can't be normal can it? Even for a kid with reflux and a g-tube?

Everything is a trade-off. We could get more sleep if we didn't feed her at night, using a pump to deliver formula through the g-tube, but she gets most of her calories during that time. It's been such a struggle to get any weight onto her I can't imagine giving that up. Maybe just for tonight.