Thursday, September 30, 2010


Walking through the door after an emergency room visit, or in this week's case, a 2 night stay at the hospital, gives me a huge sense of relief.  I bring Luca through the door, look into our home, breathe in the familiar air, and exhale letting my shoulder droop.

But the relief I feel of leaving the hospital and arriving home is always short lived.  It's not like when I've been in the hospital and when I leave, all better!  Her sickness doesn't just go away when she's ready to be discharged.  It's always there - lurking.  Her body just waits for some change in her system, and then that pesky intruder, ammonia, creeps up and reappears.  A change as simple as a cold, not getting every calorie needed per day, or getting too many calories. 

While I feel relief, I then jump into mommy mode and watch her every move.  Is she too fussy?  Was that more than just spit up?  Did she move her arm funny (which would indicate a seizure)?  Has she been awake too long?  Has she been sleeping too much?  Being too sleepy or too awake, or too fussy - hmmm, sounds like a baby to me. It's incredibly frustrating to have to question every single thing she does.

And I have to stay healthy.  So far, my gut instincts have been right on.  And I need to stay tuned into that instinct because her life depends on us being able to recognize when something is off.

Living our life as normal as possible is difficult.  We're focusing on raising her as normal as possible (well, with a tube sticking out of her belly and all, normal is kind of different to us).  We're choosing to pretend like she does not have a life-threatening disorder.  But yet, that instinct is always in tune and never forgets.

More pictures coming up...

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