Those were the good times. We knew it then, but we really know it now.
Starting on April 17 last year, Miles' five weeks off the ventilator started. It wasn't all good (there were plenty of daily--hourly really--struggles with his health), but those were the good weeks with Miles.
We were able to hear Miles. We could finally hear his hiccups and hear his cries. We were able to scoop him up--yes, he still had the nasal canula and his broviac of medications--but without the breathing tube, we didn't have to be so careful. We could slide our arms under him and sway him, rocking him in our arms. It took no time to figure out this was what he LOVED...
And Miles didn't need as many sedation medications without the breathing tube.
So he was more awake, more alert, more Miles.
And I could no longer leave the hospital at night. Leaving the hospital at night, forcing myself to get in the elevator to go home and sleep, was practically impossible each time; it was nothing short of against nature to have to do that. It still makes me sick to my stomach.
So I stopped leaving. I moved in to 2C18 with Miles. I slept in the ridiculous sleep-chair in the back of Miles' room, learned to use Miles' boppy as a neck pillow, jumped up as soon as I heard Miles cry. I would stand by his bed, rock him on my arm for hours, then hold him while he slept--silently debating the should-I-just-keep-holding-him-so-he'll-keep-sleeping or should-I-possibly-risk-waking-him-up-by-putting-him-down?
Those are the times that I think of now when I think of us in the hospital. I think of us rocking him on our forearms until they felt like they would fall of and absolutely loving it. I think of me in Miles' dark room at night, standing by his bed in my sweatpants and socks, rocking Miles on my arm and singing to him--because that was what made him (and me) happy.
We knew those were good weeks at the time (though always believing that the really good days were still ahead, still just waiting to unfold at home). And now, well, we know those were the best times we had with Miles. Those days in the hospital were so stressful, torturous really, but they were the good times.