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Passive Parenting

One of the (many) things I find especially frustrating about having Eleanor in the hospital is how passive it makes me feel as a parent.  While we wait to figure out what her condition may or may not...

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We’ll take whatever we can get

This isn’t normally my style, but I have decided that every little bit is worth a shot. If you’re the praying/meditating/energy-focusing type and have some spiritual energy to spare, we’d love every...

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Wearing down

First of all, to say thank you for all of your wonderful comments and wishes and good thoughts for Eleanor seems woefully inadequate. I am overwhelmed by your support. Thank you, a hundred times over....

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The Power of Positive Thinking

At Eleanor’s last swallow study, two weeks ago, she aspirated both thin and thick liquids, which took her off of all oral feeds until the study could be repeated.  That was, as they say, NOT GOOD....

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Mystery boobs

Oh, pumping. You have such an amazing way of messing with my head. Why yes. I’m still exclusively pumping. It’s been over a month, and here I sit. Half an hour at a time, eight times a day (down from...

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The Doldrums

I’ve been wanting to post an update, but there has been so little to say. “How’s Eleanor?” “Fine. The same. Great, actually. Except for that whole not-eating thing.” The last 10 days have been the...

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The Magical Mystery Patient

When people ask me what’s wrong with Eleanor, why she’s in the hospital, I stumble a little bit. I say “um” and “well” a lot, before finally coming up with “she doesn’t eat.” That is simultaneously...

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Best Mother’s Day Present, EVER

Ten weeks, two days. The hospital always moves painfully slowly, but even more so on the weekend. The doctors who are on duty are wary to make big changes or decisions, in addition to their standard...

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The First Week

Ellie has been home for a week, and I think we’re adjusting alright. The big kids were excited to have her home, then a little clingy and nudgy, but generally really good.  They actually seemed to...

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The Green-Eyed Monster

The first week or two that Ellie was home, I felt like I was sinking. A big part of it was anxiety over bringing home a baby with special medical needs. She was still recovering from surgery, little...

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