Wednesday, September 2

The Wall

Where to start? I know it's been awhile but each day since Friday
I've wanted to write and just lost the lust. Every day has started
one way and seemed to end another.

Saturday it was decided that Bryce would be extubated again to try
CPAP. We waited all day but it never happened. Another baby on the
unit was "desperately sick" as Dr. Hodges said and they wanted to wait
until they could give Bryce more attention to extubate. So we went
home on Saturday night. We weren't there long as we wanted to be back
early for the extubation on Sunday but we had a great night. Lauren,
Jeremy and Danae came by for a couple rounds of Farkle and loads of
much needed laughs.

Early Sunday morning I called my mom, who was sitting with Bryce all
night Saturday and from very early Sunday morning, to check in. She
unfortunately had some bad news that she and our nurse decided she
should tell me before I walked into it. The other baby who had been
desperately sick the day before had passed away over night. I hung up
the phone and just cried.

I can't think of a single thing more unjust than a sweet, innocent
little baby going through everything they have to endure in the NICU,
fighting for their lives every single day, to lose that battle. It
breaks my heart.

That poor baby and that poor family. I prayed for them when I prayed
for Bryce but it never actually occurred to me that this could
happen. Each time I enter the unit now, I stand at the scrub sink
trying my hardest to wash away the dirt, grime and germs of the
outside world while staring at the empty room at the end of the hall
where so many times I saw him crying in his bouncy chair or being
paraded about by his nurse.

Babies come and go pretty steadily around here but when they go, when
they leave their empty rooms behind, they are supposed to be home
playing, learning, laughing and growing.

And so it was with a heavy heart and a dampened spirit that we
returned to Bryce on Sunday morning for his third CPAP trial. He
lasted about six hours but he struggled most of that time, gasping for
air and dropping his heart rate. He tried his best but just couldn't
do it. We were all so relieved when they finally decided to
reintubate him that evening, especially Bryce. He looked up, wide-
eyed, at his tubes as if they were his old friends back at last.

It's hard for a mother to watch her child struggle, to helplessly
stand by as they work so very hard just to breathe. I hope and pray
every single day that someday we won't have to endure such things,
that Bryce will be blessed with better days. Days of uninhibited
laughter and play.

Monday morning I awoke a little bleary eyed from a long couple of days
and little rest. I pumped as I do first thing every morning and
walked to the freezer down the hall at the Ronald McDonald house to
put my milk away. I opened the freezer to two bottles of milk with
the name of a baby that would never have that milk. I broke down. I
couldn't help but think that his poor mom had walked my same steps
only to go home without her precious boy. I returned to our room and
to our bed, where I stayed until late in the day. Finding it hard to
muster the motivation to rise again, to dress or shower or return once
again to the NICU, I just lay there. Hour after hour I went over and
over in my head how and why this could all be happening. How is it
that this has always gone on and will continue to go on with so few
knowing. I didn't know. Before Bryce, I had no idea.

Eventually I did get up and I did return to the NICU. I walked in to
knowing and understanding faces in my new friends, our nurses and
RTs. Without explanation they knew, they've seen it too many times
before. Jennifer said it best, she said, "you hit a wall."

And then she said they all talk about how amazing I am because I
hadn't hit it sooner.

It's a nice thought but I think I've hit that wall so many times I've
become accustomed to it. I'm just usually much better at picking
myself up, dusting myself off and pretending like everything is honky

That evening I held Bryce for several hours. I stared at his face and
kissed his hand, I cried with him and sang to him and felt a sense of
renewal merely from his being.