Sunday, May 25, 2014

Chapter 13: A Timely Gift

There is something incredibly magical about a small babies' smile.  Especially their first few smiles.  After weeks of fatigue, fear over doing the wrong things and the steepest learning curve of your life, one smile and suddenly motherhood feels rewarding, manageable and fun.  With one smile, you are reassured that they do feel loved and safe and that you are doing something right.  A baby's first smile is one of the most wonderful gifts of parenthood.  And Addie's was delivered to me in my moment of greatest need.  Her smile would sustain me through difficult days like we had not yet known.

After our isolation drama and monumental decision that we would move forward with the big surgery to take out a kidney and put in a dialysis catheter, we had a few weeks of calm before the lurking next storm.  April brought warmer weather, bigger babies, increased stability and a comforting routine to our hospital days.  I had gone back to work from maternity leave and decided early on that I would not miss a day of being with them at the hospital so my days belonged to my school and my evenings to my babies.  It was exhausting but perhaps the great blessing of fatigue is the lack of energy to worry, brood or contemplate.  It was a stage of putting one foot in front of the other and seeing the days fly by in a blur of activity.  The weekend before their surgery was Easter Weekend so it was easy to allow ourselves to become consumed in smocked bunny clothing, brand new Easter baskets, extra visitors and a copious supply of egg shaped chocolates.  In fact, those few days before the surgery were among the happiest of our days in the NICU.

Between the exhaustion and the bunny festivities, I managed to prevent myself from thinking terribly much about the surgery looming on the horizon.  It wasn't until late in the evening of Easter Sunday when the bunny clothes were exchanged for hospital gowns, the food was all packed away and the babies had been NPO, meaning no fluid allowed, for the next morning's surgery that I was jolted with the reality of what the next day, or days would be bringing.

I've often debated with myself which I have found more emotional and difficult to face: an emergency surgery on a sick baby or a planned surgery on a seemingly healthy baby.  I have always found there to be something somewhat unbearable about handing over a stable content child knowing that things were inevitably going to get worse before they could even potentially get better.  In those moments, my arms want to cling onto my child and my eyes swell up with tears as they stroll them away.  It is scary and sad to send a sick baby off to the OR but for me, to send my well child away just would break my heart and defy all my logic.  Therefore I faced that morning with a particularly high level of dread and angst.  Although I knew in my head all the reasons why this was the pathway we needed to take and that removing the kidney and placing a large plastic tube in their bellies was the best decision, it felt very wrong when the time came to do it.

There have been only two days when both babies have gone to surgery on the same day and this was the first one.  For lots of practical reasons, piggy back surgeries were the best way to approach this- it suited the surgeon and for me who was back at work and needing to take time off for their recoveries, it definitely made more sense.  The fact that it would prove to be absolute torture for my poor mommy heart simply wasn't our number one concern.  So early in the morning on Monday April 25 2011, they took Max back for his surgery.  He was gone probably 5 hours and we sat around with my parents all taking turns holding Addie, praying and just trying to pass the time.  My heart was heavy with my baby boy in the Operating room and knowing that any relief from his return would be overshadowed by the sadness of Addie taking his place.  As I sat there during those hours with Addie in my arms worrying, she did something for the first time- she looked right at me and smiled.  And smiled and smiled and smiled.  She passed the hours looking into my eyes and smiling at me.  We had caught random smiles from both of them at different times and they were both starting to flash occassional but still random grins, but these were our first social interactive back to back full fledged smiles.

And with those precious smiles, our hearts could not help but be filled with joy, despite the circumstances.  The beauty of her precious smiles became stronger than the sadness of what that day entailed and our heavy hearts lifted at the priceless gift God had planned for us that morning.  No doubt it was a gift that was reserved for our hour of greatest need- a joy we needed in that moment more than any time before.

I'd love to say that after those smiles that the rest of the day was a piece of cake.  But while the smiles sustained and blessed us, they also made the terrible job of then handing Addie over to the surgeon that much more difficult.  The few moments between Max's return and Addie being wheeled away were among the most painful I can recall.  They bring Max in on a ventilator, completely out of it and his naked body covered in 6 incisions and with a seemingly giant new white tube protruding from his belly.   He looked nothing like the little boy in his blue smocked bunny jon-jon the day before.  He looked sick, he looked sad.  And it was just heart-wrenching to see.  As they carefully placed his sore body still hooked up to machines on an open bed, they simultaneously started preparing Addie to be wheeled away.  My smiling little baby girl was being loaded up and right before my eyes was an exact image of how she would return to me.

By this time I was 4 months into this crazy new normal and I had nearly perfected my stoic demeanor during difficult times.  While I had once stared at the nurses with what one called 'sad puppy dog eyes' during heel pricks, I could now calmly offer to hold a leg down if needed.  I had begun to pride myself on my toughness. But as I stood there but a helpless witness to this scene, this poignant before and after display I was witnessing, all of my defenses crumbled down and I lost it and the sobbing began.  I have never had the gift of pretty elegant crying.  I go straight from stone faced to full blown ugly cry in a matter of seconds.  So in the midst of this chaotic moment with nurses and transport team and everyone gathering, I stood there wearing my heart on my sleeve, the tears unable to be stopped.

By the time Addie would return hours later, the tears would have stopped and the brave face would have returned, but the drama would not have settled down.  Given Max was awake and distressed by the breathing tube, they went ahead and pulled the breathing tube out.  They then placed him in Al's arms for comfort which did seem like a great idea until he got distressed and completely stopped breathing and they had to whisk him out of Al's arms to start bagging him.  As if we were taking turns having our breakdowns, Al now runs out of the room in tears.  And really for a number of days, this pattern would persist whereby Max would get upset from the pain and collapse his airway and then subdued from the anesthetic and pain meds, he would lack the drive to open it again.  It would make for a frightening and very long week before he finally seemed to be back to himself.

Addie's return was thankfully less chaotic and she seemed content to sleep off her surgery pain for a couple of days.  I would watch them both during those long days and still see Addie's perfect smiles in my head and I would pray for them to come back to me quickly.  Those smiley images would keep me company and give me a vision of what I was anxiously awaiting to see return.  And when they did finally return 3 days after surgery, those post surgery smiles were an even sweeter gift.  A promise that no matter what they would endure, they would always come back smiling and never lose their innocent joy.  A promise that, to this day, they have both kept.

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