Thursday, December 4, 2008

Just when things settle down

Our last hospital stay was in August. We spent seven days with JB in the Cardiac Intensive Care Unit. We'd only been home from our previous stay for a month, but it was just enough time for the adrenaline receptors to settle down and give our heads the message, alarm-off.

We settled into a new week and by Thursday, I was confident that normalcy was upon us. As I packed the diaper bag to go to the mall, I became overjoyed at the prospect of having an afternoon outing in his stroller, just like I'd imagined when I was pregnant.

I laughed just thinking about how I spent the first 38 years of my life avoiding the mall and now it was An Event. And An Exciting Event.

We were having a lovely stroll, he was facing me and we were smiling back and forth. I acutely remember having the thought, "this is great, our first normal day, just me and JB doing what all new moms and babies do."

Ten minutes later, I looked at my beautiful son and he was dripping sweat, shaking, clearly frightened. The rest is a bit blurry but I called the doctor, made it to the car and drove around the corner to her office. His 'episode' had passed (always does by the time you get to the MD) and he appeared stable and happy, but on her suggestion we decided to make the 90 mile journey back to the hospital where he had his surgery.

My husband and I were quiet most of the ride. Without even discussing it, we pulled over at a scenic spot just before the hospital. JB was sleeping in his carseat and we got out to take in the view.

We were not the naive couple any longer. We knew in a few minutes our peacefully sleeping baby would be startled awake, poked and prodded. He would endure it all gracefully, not knowing that all babies don't go through this. He would look to us for reassurance and we would do our best to comply, while dying inside. We would pray and pace, answer all the questions and doubt our answers. We would make the calls to family and friends and try to sound confident for their sake.

The cold night air brought our thoughts back to our mission. We drove to the same parking spot that had been 'ours' for three weeks in June. We breathed deeply on our brief walk to the entrance. Paused before the double doors to gain our courage and walked over the threshold from the stillness of evening to the frenzy of fluorescent-lit families just like us.

That evening turned to morning and another and another. Seven mornings later, we were discharged with a folder of scans, bloodwork, new medications, a list of more rules and 7 electrodes attached to JB, ready to report any abnormal arythmias.

We had assurances that all would be well from Dr.'s who don't know what else to say when they just don't know. We had sympathetic glances from the other parents who know the joy of going home is not always joyful when you don't have the security of cardiothoracic surgeons right down the hall.

We adapted, adjusted and settled in again. We've had almost four months of relative calm.

This Monday brought high blood pressure.
Tuesday, more high blood pressure.
Wednesday and Thursday, phone calls and appointments made.
Tomorrow, we will know.
One sentence from the cardiologist and we will either be going back to our scenic place or we will come home to settle down again.
Tonight, only God knows and for this mother's heart that is enough.

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