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Friday, May 25, 2012

A better day.

Yesterday was a struggle.  Today not as much.  That's just how it goes with these kids.  That's what they keep telling us.  That's what we will have to become accustomed to.  Today was definitely an up day for Adeline though as she reached a couple of milestones in her journey.  She had the rest of her drains removed and most importantly, her breathing tube taken out.  The breathing tube was a big thing.  She still has an oxygen cannula (the little tubes that go into your nostrils) but is doing the breathing part on her own.  She fought hard to stay off the ventilator and not have to be re-intubated.  She won that battle.  Going on 36 hours since her last SVT.  Another battle she is winning.

This is the view from my current "office."

At random times during the day, it hits me.  Camille and I have been basically living in this hospital for going on 10 days.  Ellie hasn't seen her baby sister since day one of her life and won't for several more weeks if all goes well.  We have leaped, not stepped, from our normal world into one where normalcy is measured in cc's/hr, artieral pressures and blood gases.  Adeline's room is a space shared by us along with so many others with the common goal of getting Addie and us out of it quickly and safely as possible.  In the meantime we live in this alternate world.  All this while trying to maintain our normal one with so much help from so many great friends and family.  One day these worlds will unite and our family can feel more like a "normal" one. 

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