Observations

Blue light, white sheets
the white bear, the tan bear
a yellow duck, and white lamb
and one small loved one

Crackle, crackle
put, put, put, put, put, put
beeeeeeeeep, beep, beep, beep
silence, noises adjusted to

Sticky skin, clings to line
vaseline like coating to keep moist
hard form, bone and skull
warm air and material

A place devoid of normal smells
soap and alcohol, fresh washed
blankets and invisible oxygen
clean and devoid of normal smells

Dry mouth, sour with worry
bitter with anger and dread
joyful and sweet with the name of my child
no taste to compare to

More than just a sight of a baby in
a box of plastic
The NICU is expereinced in all ways
only if you pay attention

Is today the day?

Is today the day I will
lose you, I hope not
Is today, the day I will
gain you, keep you, hope so

The staccato crackling of the vent
surrounds you as you let it breathe
for you, keeping you here this
minute.

Tell Me...

Tell me honestly
let me know
the plan, the
expectation

Tell me your
heart, what do
you believe?
Tell me please.

But don't crush
my hopes for the sake
of your numbers
and statistics

Babies die, of course
my child is real sick
naturally. Is she
dying? Only God
knows that.

You have the power to
help me cope and
accept, and you have
the ability to encourage
me to give up

Stop it, believe my
child will live, have
faith and hope for today
is a day

Baby Steps

Each hour we make almost invisible steps
the smallest bit of advance
baby steps, but measures on a premature foot
not even the foot, but the toe, the littlest toe

You have to watch to see the progress
you have to attend to know the advance
blink and you will miss it
so you sit and watch and worry

Progress, decline, stabilize, and repeat
day in and day out, constant
it is the constant of this world
the constancy of change, a paradox

Remain too long with no change and they worry
change too much and they fret
there is a rhythm to the worry and relief
like the rize and fall of the waves
crashing on the shore with regularity
the constancy of change

So today I will expect that things will
be different, new, unexpected
I will remember that it is like that
just for today for tomorrow
this too will change

Heartbeat

There is a renewed sense of the need to record life. I used to be more active at recording life, but had stopped. When Sara was still in utero, I started a simple record of events and things related to her. I recorded the details of conversations I had with the doctor, and what readings I saw in the morning and at night. Details. You forget things, and writing can save them for you.

I found the journal again recently. As I reread it, I saw things with clearer eyes. One of the things was the classification system of bleeds in the brain. IHV classes. Starting at one which would be watched, to Class 4 which is not survivable. This was told to me by the doctor the first day in the NICU. I have always remembered that Sara had a class 4 bleed. I always knew it was bad. I had forgotten "NOT SURVIVABLE" Sara did not have a chance. Some of my guilt lifted this last week after all these years.

Another passage brought me to a stop. I had written about the end and the decision to withdraw the artificial respiration. I wrote that I had placed my hand on her chest and could feel her heartbeat. I moved my had to feel her feet, which were cold, and when I placed my hand back on her chest, I could no longer feel her heartbeat. Grief took that memory. I did not recall that independent of the book. Had I not written, I would have lost that memory forever. I am comforted now knowing that I felt her heartbeat. I will choose that memory to hold now.