Fixated in Wonder...

I remember rocking Patrick in the hospital nursery.   He was alert with dark eyes fixated on mine - maintaining eye contact with me for what seemed like hours....  I'm convinced he was thinking - checking out this new world that he was now tethered  to.  The beeping monitors and sighs of the oxygen pumps were to be expected...however I was caught off guard as he reminded me more of a character in a circus act- as he sported a medicine cup taped upside-down on his head protecting the vulnerable IV entry point.

Somewhere there was an agreement for surgery.  Yes - a blockage in his penis - the pressure stressing his malfunctioning kidneys.  Sure... a vesicostomy makes sense - an opening the size of a button below his umbilical scab.  A small incision in the bladder - through the abdomen - the bladder would drain into his diaper.  It all makes sense - did I need to sign anything? This was expected - he will be fine.  It won't take an hour - you can wait out here...those are the doors to Recovery...

I would have the art of 'waiting' for Patrick down almost immediately.  This earliest procedure would take him from me but most of Patrick's pokes and prods were executed in my arms or lap.The  surgery was a snap mom - he sailed through it...you can go see him through those double doors.  He's in the warming blankets but you can pick him up - it's ok - he won't break...

 Just like new mothers learning the nuances of their normal and healthy babies - I would be embracing my normal with Patrick.  I found pride in charting input/output and would encourage accuracy in measurement and recording.  We celebrated how well Patrick healed and how strong he was.   Diapers needed to have a high-lip in the front to ensure covering his vesicostomy and keeping him dry.  His sagging skin on his stomach where muscles should pull it taught was a reminder for core exercises and support while learning to sit.  There was no baby manual that guided me through the process - but instinctively I followed his lead and discovered what being Patrick's mom  required.

It is funny how a baby is just a baby.  I never longed for the babies in the nursery down the hall or never wished that my baby was different.  Patrick was Patrick from the day he was conceived and no one else.  He would never be a day without oral medications and could ingest several at a time.  His neighbors in the neonatal unit would all be navigating their own journeys - with their own tragedies and triumphs.  But they became acquaintances - Brad sharing the same semi-private room with Patrick while the three girls - in the next area just beyond the alley kitchen - bellowed almost on cue from morning til night.  Mom's joked together and shared recently purchased outfits while dads protectively hovered and monitored their families.

I would bring him home to a small duplex.  It would be in those first hours that my reality would be revealed. Wrapping Megan tightly in the blanket cocoon she had gotten accustomed to sleeping in - I gave her musical mobile one more crank as she nestled down to sleep.  Walking from her newly decorated bedroom across the hall to Patrick's nursery I was overwhelmed by the complexity.  Where there would be knick-knacks for Megan were cases of medication vials for Patrick.  A timer would be set each night to ensure the integrity of his maintenance medications.  His blankets would be looser to allow and promote movement to strengthen his neck and limbs.  '

The instantaneous rush of adrenaline receded as quickly as it had flooded my world.  I settled in to Megan and Patrick's differences as simply as if they were only that of hair color or disposition.  Megan had her own feeding schedule - preferring finger foods with texture and flavor over the blandness of todler food.  Patrick would like his bottles on the warm side and would curl his lips up into a smile - with the nipple still in his mouth - to playfully signal he was done.  I longed for them both to sleep simultaneously so that I could collapse into the sofa or chair.

And so it went... Our world would always be filled with the sounds of pumps and monitors.  There would always be alarms for medications and appts. scheduled on the calendar.  But there would also be jobs and careers, first words and first steps, babysitters for date nights and laundry piles that littered the basement floor... and would find I was the one that would be fixated in wonder - checking out this new world I was tethered to...