Tuesday, September 11, 2012

Our Normal

Most days go by without me thinking about Bean's heart defect.    It's just a descriptor; like Bean has blue eyes, brown hair and a wonky heart.  I don't want this flaw to define her, make her feel different or more importantly, I don't want others to treat her like a Fabrige egg.

But there are moments, when my reality creeps in.  When I catch her more winded on the playground or when I see that she's more out of breath than usual after walking upstairs.  When she was born, she was blue, especially in her extremities.  Most new parents check constantly to see if their sleeping baby is breathing;  I always checked that too, plus I held a piece of printer paper next to her feet and hands to check her color.  Once I was in tears because her legs turned blue and I was on the verge of taking her to the hospital only to discover that the blue dye from her baby jeggings had colored her legs blue.  Since then, I've learned to check her color in natural light (and not in a room painted blue).

Recently, I've noticed Bean's color changing.  First, her nail beds seemed more purple than usual, than her lips were less pink and slightly more like a purple passion lip gloss that I had in grade school.  Only I know, Bean didn't put Bonnie Belle Purple passion lip color on her lips.  Her blood oxygen levels are probably just lower than usual.  A color change doesn't necessarily indicate that she's getting open heart surgery.  It just reminds us that Bean is a cardiac kid.  I can pretend that we are through this, that her birth and subsequent cardiac catheterizations are done but, they're not and we're not.

And so I dragged out the dreaded pulse ox machine and attached the tape to Bean's hand and immediately my heart went into palpitations, listening to the BEEP, BEEP, BEEP on the machine.  Bean was unfazed, pointing at the numbers and counting and saying "Look, Mamma!  Alarm!"  To her, this machine is just an iPad that attaches directly to her.  To me, it's an albatross; reminding me of all those days spent in CICU staring at numbers on screens and trying to make sense out of BEEPS and BUZZES.  And then number flashed 82 to 84.  Good numbers, not great and definitely lower than previously.

I spoke to her cardiologist today, and she told me the same line that she's told me from the moment Bean was born, "Her heart is going to let us know when we need to do more."  She said that nothing is "emergent."  She always uses that word "emergent," like its supposed to make me feel better that I don't need to take her to a hospital for an emergency procedure.  It doesn't.  Bean will never be fixed completely.  Her heart defect is so rare that there isn't a huge case history on what to do with kids in her position.  Instead, they say things like "When her heart declares itself" or "if we see this, then we'll do that."  It's infuriating, and yet I'm grateful because I don't have a timeline of surgeries ahead of us.  I just have the ever present "And then we'll do surgery if necessary," which is how every appointment at CHOP ends.

This is our normal.  Bean spent two hours today running up and down the playground, making snow angels in the mulch, and climbing the monkey bars.  She's been up in her crib for the past hour singing, and by singing, I mean shouting "Singing in the Rain" over and over again.  She certainly doesn't act like a kid with a heart defect and that, more than anything else tells me that she's going to be all right.

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