Monday, September 10, 2012

Lucky Number Nine

"It is only with the heart that one can see rightly; 
what is essential is invisible to the eye." 
-- Antoine de Saint Exupery (The Little Prince)

Patrick with his heart cake today, 9.9.12

Thirteen years ago God graced us with a baby...a tiny baby boy with a broken heart and an extra chromosome.  The doctors who know better checked his heart immediately and found that indeed Patrick had one large chamber when he should have four.  We were introduced to fancy terms and potential surgical procedures and a whole host of predictions that just don't seem to fit into your brain when you are holding a tiny piece of perfection.  Predictions that included "heart failure" and "open heart surgery" in a matter of weeks.  I remember watching him breathe effortlessly still sleepy from entering this crazy world and wondering how any of it could be true.  Like a small child, I leaned down  close to his chest and tried to hear anything that might indicate the dire predictions...I always wonder what I expected to hear (an ambulance siren? a tornado warning?) but all I heard were the sweet sounds of a baby slumbering, perfectly at peace.

My world was the opposite.  I grappled with a newborn facing massive surgery at any moment -- the date depended on the best guess of a pediatric cardiologist who acted casual and perfectly normal as he described cracking my newborn's chest open, cutting through the electric field within the heart, creating chambers with Dacron patches and reconfiguring life sustaining heart valves.  Sure.  No problem.  It's all fine, really...NOT.

On 9.9.99 at 9am at 9 weeks old and 9 pounds 9 ounces,  I handed my sweet baby over and prayed like crazy for the next few hours.  Anything goes with heart surgery. All sorts of really bad things can go down.  We all know it but nobody talks about it...until it happens.  

Believe it or not, this was a time before the internet and incredible connectivity was really possible.  I knew next to nothing of what to expect.  I saw no pictures of babies who might have gone through something similar.  I didn't know what would happen afterward or how nursing would go or if I would ever get my baby back.

Patrick came out of surgery at around 2pm and I remember feeling the most afraid I'd ever felt.  Seeing him wasn't scary, waiting for the other shoe to drop was what made me crazy.  We brought our favorite music so that we could envelope Patrick in our blanket of love and hope, our way.  We held our breath and watched and waited...for what we didn't know.  He had tubes and wires coming out of his body and I remember unease, nausea and fear creating 
tentacles that gripped me.  I got good at finding my way to random isolated corners of the hospital and crying and crying and if that would help.

Patrick for the first 18 hours was really out of it but then the pain came crashing down.  They tried the heavy narcotics that relieve almost anyone else, increasing the morphine regularly but it didn't work. An entire day later, they tried Fentanyl and my baby finally stopped fussing.  To this day, that drug is emblazoned on my memory and should Patrick ever be in severe pain again I know what to say and how quickly to act.  It doesn't help that now I know that he has an incredibly high pain threshold and that when he is suffering, he really is suffering, in an excruciating way.

For five days, Patrick recovered.  But those words mask the terror and the fear.  We watched a young boy who was Jack's age at the time -- a darling six year old -- die right in front of our eyes with every amazing surgeon and doctor and nurse laying it all out there to save his life.  It wasn't supposed to go that way.  It wasn't expected. And it's moments of complete futility and heartbreaking effort that underscore what we all know but never acknowledge: all the important stuff is out of your hands and out of your power.  All you get to do is wait, hope, pray and acknowledge the gift if it goes your way.

So...every September 9th we pause and acknowledge the gift.  It went our way.  Those Dacron patches worked.  Those valves continue to do their job day in and day out.  Thirteen years later, I have a teenager with a scar on his chest -- his badge of courage we call it -- and that is it.  No heart issues at all.  We had talented surgeons, truly terrific nurses and nothing but good fortune on 9.9.99.
We are forever grateful.

It seems the least we can do is make a heart cake, dig out the red plate and celebrate Patrick's lucky number nine.

My boy with the biggest heart I know can indeed see rightly.  He knows what is essential.  Thanks to him, I do too.

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