Wednesday, March 23, 2011

just venting

Maybe I'll even get some answers. Today I had a "talk" with the nutritionist on our feeding team who proceeded to tell me Ellie is malnourished (although she said not from lack of trying on my part). Ellie has been 24" long for months now, with no linear growth and she's about 2 pounds away from her goal weight. The nutritionist also said it was time to add back in solids. I don't know why because (1) they detract from her heavier caloried food and (2) she can eat solids, they aren't the problem. She has mastered that developmental milestone. In fact, today she crawled a bit, maybe an inch or so. If they want her to fatten up why are we cutting out the fattening food? I'm also upset that she asked if the pediatrician mentioned anything and I said, no he was perfectly content with her growth. Which means someone's wrong. Either pedi has no idea what he's talking about or the feeding team is really over-shooting her goals. I did the math and to me it seems her weight is fine, for her. In either event, they want me to make a follow up appointment with the GI Dr. I call him the feeding tube doctor. I can't imagine they'd want to stick a feeding tube in her at this point, post-op, but who knows anymore. Clearly not I. And it gets so much better- the nutritionist said if it wasn't malnourishment that was causing her stunted growth (yep, she used those words) than it was likely to be something else and we would need to see an endochrine doctor. Fantastic. Just what I need- another doctor in the Ellie soup. It just breaks my heart. Like she doesn't have enough problems, we have to keep adding to them. And of course my stupid behind thought surely post-op everything would be fine! She'd gain weight! She'd grow! I guess I just put too much hope on one operation. I feel like its too much. I dont want to play the "I have a special needs baby" game anymore. She's such a happy baby with no idea what's going on and that almost makes it worse for me.

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