Thursday, September 4, 2014

Home is Where the Heart Is

After 7 days of home being the NICU, 19 days of home being the CVICU, and 7 days of home being the Step Down Unit, we have finally made it to our true home... with puppies abound, ferrets resting, an empty refrigerator, and the power to make Sawyer a bottle whenever she wants one!  As I sit on my OWN couch, snuggled up to my sweet puppies, watching Sawyer swing away in her very own Mamaroo, I can't help but feel a sense of normalcy.  This is the first feeling of normalcy I've felt since we found out about Sawyer's heart defect many months ago.  Mind you, normal for us involves multiple medications, pulse ox checks, and charting her intake/output for the day... but it still feels so normal.  We wake up in the middle of the night with our girl like any other parents would.  We console her when she's crying (or at least try our darnedest).  We finally get to put some clothes on this little nugget.  It's nice.  Normal. 

But I also know that beneath the cloak of normalcy, we still have a sick kid.  Our journey with HLHS is not complete, nor will it ever be.  Something could go wrong at a moment's notice, sending us rushing to the Riley Emergency Department. We have to watch her every single cue -- we have to know our child like nobody else in the world could, because tiny, minute changes could mean serious problems.  The time between her first and second surgeries is so crucial.  These kids are super susceptible to illness.  Even a small cold could land her in the hospital, a trip her little heart can not afford to take.  Her body is in a constant balancing act and it's scary.  It's scary to be home.  It's scary that right at this very moment, it's just me, the pups, and the kid.  No nurses, no doctors, no cardios.  It's scary that I rely now on her physical cues to know if she's okay, rather than the constant reassuring beep of monitors.  It's scary that there's no "quick fixes" here like there were at the hospital.  Being home is such a paradox.  On one hand, I wouldn't trade it.  On the other hand, I wish Nurse John was here with us! 

I wish I had something profound to say about being home, but the truth is... it's all just really, strangely normal and I don't know what to make of it yet.  Plus, I have a crying baby and there are no nurses to tend to her... so, with that.... gotta go! :)