My favorite Day

I remember the NICU: Sweet baby Dominic lying in his little bed, limp and void of the color of health, monitors beeping, his little body off limits to all of me but my hands, my hands numb from leaving them draped over the plastic sides for too long.  Then the time came where we could hold him with nothing but two wires, still we were tethered, 5 feet was all we had.  Then the surgery and failed extubation, our right to hold him snatched away again.  Finally, a brave nurse let us once again cradle our little saint.  Tearfully joyful but frozen with fear of pulling his breathing tube out.  Finally, he was extubated, recovering, but still hooked to wires, leashed. 

After 5 weeks of not being free to walk our baby around, the time came when we got to bring him home.  I vividly remember how I walked with him during that week, cradling his little body in one arm like an experienced mother, having freedom to bring him wherever I wanted.  It didn't last long.  Before we knew it, we were back in the hospital, again he was held to the infant warmer by wires, then more wires for all the tests, and finally the tubes that breathed life into him.  Always, minus that one week at home, we have not been free to walk around with our boy, he has been anchored to the things I hate and love: glad they exist to keep him alive, but hate that he needs them.

Today was the day.  We held our boy, tether-free, for the first time since he was 6 weeks old.  He's almost a year.  He came off the vent for his trial.  He breathed.  I always expect him to stop, but he doesn't, he just keeps breathing.  I broke a little rule and took him off the monitors (with the understanding nod of the nurse) and walked.  And walked.  And walked.  We walked circles around our little ICU room, me telling him how momentous this moment was in the history of his life.  I tried to figure out how to carry him, he objected to some of the ways but we soon agreed and I held him close.  And walked.  Never in my life would I have imagined how good it is to walk with our baby.  How free I feel without the constant nagging fear of pulling his trach out if I take a step too far.  How light he is without pulling the vent, and oxygen, and back up oxygen, and suction machine, and emergency supplies.  Free.  If only he understood the goodness of this day.  Actually, maybe he did.  Once we found our way, he was quiet and looked, getting used to the faster pace I could keep with our new found freedom.  It didn't last for long, but that's okay, at least it happened, and for that single reason today is my favorite day.

In Them,
Chasity

Mike walking with him for the second first time.  This is one happy Daddy.

This little cap on the end of his trach is called a HME, it replaces the blue tube in the last pictures by providing humidity.  And freedom.

About to take the pulse ox off for my second first time

Of course, his BFF had to have a turn too :)

There is so much I can say about this picture, but I don't think I need to.