See the Distance: February 2012

Tuesday, February 28, 2012

Easton's Eye - Part 3

Ok so where were we
ahhh yes, drama
drama drama
and more drama.

I wish I could say
after his surgery
we were out of the woods
but that was not the case.

November 1, 2010
Easton's first "office" eye exam.
Our PO has two offices
luckily we were able to
go to the closer one
her satellite office
which is 20 min. away
on a good day
we would be headed there
during morning rush hour.

So we were now
leaving the house
for the first time
with our newborn son
to make his 8 am eye apt.
and at 4 am
I'm asking myself
what time do I wake
what time do I feed
what time do I pump
what time do I dress
what time do I leave
wait...
what should I put
in the diaper bag?!

It was at this appointment
we finally learned
Easton's diagnosis
Persistent Fetal Vasculature
and
we learned
there were still
a lot of unknowns.
She didn't know
if his eye was going
to stay small.
She didn't know
if his eye would
develop vision.
And she still didn't know
if his optic nerve
was healthy.

But she did know
his eye was
healing well
and she did know
his eye had
already developed
glaucoma.
Yup, that's right
his eye pressure
was up.

So now as I am
still trying to digest
the PFV diagnosis
she is telling us about
all the risk factors
of glaucoma.
I know all of it
went in one of my ears
but then I don't know
where it landed
I know it didn't
go out the other ear
because even though
I still didn't fully
understand
all of it
I felt it
I felt the hurt
I felt the pain
I felt the fear
I felt the confusion
and mostly
I felt for my son.

She referred us to
her colleague, the expert
in Pediatric Glaucoma.
We scheduled an apt.
to see him in a month
but she still wanted
to see us weekly
every Monday
same time same office.

She also changed
the eye drop schedule
we lost the brown
healing med
and added a blue
glaucoma med.
still keep using
the pink and red
drops too!

So we packed ourselves
back into the car
and even though
we went there
and left with
the same stuff
I felt like
we left with
so much more.

Nov. 2 - yes, the next day.
Azalea was still not home.
The idea of staying in
to take care of
my newborn son
was not an option
considering
my newborn daughter
needed me too.

This day started
like any other day
pumping feeding
cuddling with Easton
once Daddy or Grandma
got home from work
I would take off
frozen breast milk in hand
headed to the NICU
to repeat it all
with Azalea.

When I got there
the nurse told me
the Dr. wanted
to speak with me
ummmm ok
immediately worried
and alone.

I already knew
of the two holes
in her heart
typical for preemies
like her
luckily we just
need to monitor them
so of course
given how far
she has had to come
I'm wondering
what now...

That night
I learned she had
bi-inguinal hernias
and she would need them
to be surgically repaired
as soon as she was
strong enough
for the procedure.

As the Dr. reassured me
this too was typical
and the procedure
was common
again, I was alone
and I safely went
to numb
auto-pilot
survival mode.

So what does this
have to do with
Easton's Eye timeline
well... I got in the car
and I finally broke
somewhere between
driving home
in the dark
alone
calling my husband
calling my mom
driving
alone
I cried
I cried hysterically
I cried softly
I cried till my body
and my heart
had nothing left
and the tears
still continued
to fall.

I cried because
I needed to
and to be honest
it felt good
it finally felt
real
and from there
I could
move
forward.

I know I know
this timeline is moving
oh so slowly
but that is how
for me, it unfolded
slowly in phases
of what I could handle
in each moment
and in this moment
I need another
break...

Sunday, February 26, 2012

The Circus

No, I'm not

going to talk about how

Easton's Eye

and our life

could be compared

to that of a

Circus!

Ha, although

I probably could.

Please excuse me

while I interrupt

your regularly scheduled

program

the timeline of

Easton's Eye

with a little

lighthearted

FUN!

Yesterday

we went to

the Circus!

Thankfully

we are all

feeling better.

We tried to

sit in the stands

and watch some

of the show

but we knew

it wouldn't be long

before we would have to

call it quits

and head for the

Clown Headquarters

otherwise known as

behind the curtains.

Luckily

we had a backstage pass

special thanks to

Grandpa JimJim

it wasn't long before

some familiar faces

welcomed us

to come in...

I love being a parent

simply because

I love the new perspective

of giving

the experience.

Seeing life

through the eyes of

my children

is so very

rewarding.

It must have been

a magical experience

even for my

one and a half year old

toddler twins

considering even I

was enchanted

when we saw

vintage suitcases

filled with
the making of
a clown

a circus

a creative expression

of childhood wonder.

We saw the popcorn preparation

and the production equipment

from the big

and complex

to the little

and playful.

There was something

for everyone

to share and enjoy!

I think I can

officially say

My kids

are not afraid

of clowns.

Next year

we just might have to

dress it up more

for the occasion!

Friday, February 24, 2012

Easton's Eye - Part 2

Before I go
on
I feel
I need
to say...

I understand
bad things happen
to good people
everyday
and
I am very aware
I have two
beautiful
healthy
children
I have so much
to be grateful for
and
yes, it could be
there is
worse.

This timeline
is simply
my experience
with
Easton's Eye.

October 2010
my newborn twins
are barely
2 weeks old
they are in the NICU
I am home
pumping
waking every 4 hours
pumping
why
because
it is the only thing
that makes me feel
like their mother.

Everyday
I traveled
30 minuets
to go see them
sometimes
even twice
in one day.

What does this
have to do with
Easton's Eye
I was in
zombie mom mode
and they weren't
even home yet.
I still had yet
to fully allow
myself
to feel
the reality of
his Eye.

Oct. 20
Easton was transferred
to a different NICU
in a different hospital
for his eye surgery.

For the next week
I would travel
to two different hospitals
to visit both
of my newborn babies
in the same day
pumping
anywhere
and everywhere.

Oct. 21
Easton is 3 weeks old
had the cataract
in his left eye
surgically removed.

This to me
was the real
beginning
because
everyday
thereafter
starts and ends
with
the Eye.

I do remember
after the surgery
our PO came to us
asked us to follow her
into the little room.

Looking back
I now know
this is not normal
normal is a nurse
telling you
you can go see
your baby
in recovery
now.

The little room
was tiny
table and four chairs
four walls
and a door
maybe a box of tissue
it didn't matter
I was numb
zombie mom mode.

I remember thinking
wow how nice
she is going to give us
a report on the surgery.

Prior to the surgery
the cataract was so
big
cloudy
severe
she could not
get a good look
at the rest of
his eye.

Now she's had
a look
she tells us
how well things went
removal
recovery
but then
she tells us
more
his lens was attached
to his iris
she had to remove
parts of his iris

and she could see
other structures
including the eye itself
were abnormal
and smaller
than normal

she tells us
he still has a lot
of blood
covering
the back of his eye
once he heals more
she will get
a better look at
his optic nerve
she will know
more
then.

Oh boy
my baby boy
what does this mean
again
I have no idea
but I know
its not good
I can tell
her voice
that voice
is back
again
this is very
very
serious.

Oct. 25
PO exam of
Easton's Eye
crib side in the NICU
a couple of questions
were answered
but still a couple of
concerns
were lingering
continue with the
round the clock
regimen of
three separate eye drops
multiple times
per day.

Also on this day
Azalea
spent her first day
in an open air crib
she could now
officially
regulate her own
body temperture
at almost
a month old
progress!
girlfriend just needs
time. ;)

Oct. 27
Easton is 1 month old
he comes home!
His eye is healing
the big heavy white
bandage is gone
we leave with
a clear shield
taped to his face
to protect his eye

and an eye drop
schedule
so crazy
we would log it
in our baby notebook
daily
to keep track of
drops and times
they were noted
as either
pink
red
or brown
for the color cap
of each different
medicine.

the first
the easiest
example of how
from then on
each day
starts and ends
with
Easton's Eye.

Easton's Eye - Part 1

I've recently become
inspired
to look back
and create
a timeline of
Easton's Eye.

I quickly realized
why
I have yet
to do this...
it's painful.

In some of
my past posts
I've touched
on certain
days
times
moments.

But when I started
my blog
I needed
an outlet
a release
a place to put
the drama
the abnormality
the pain
of the present
at the time
I didn't want
to go
back.

Best of all
in blog land
there were others
who had been through
and who are
doing
feeling
living
like me.

So now
here I am
a little more
confident
a little less
confused
and perhaps
a bit
stronger
to face
the pain of
the past
the beginning...

Sep. 28, 2010
Easton John and Azalea Jayne
were born
6 weeks premature
directly from my abdomen
and straight to the NICU.

Oct. 2
I was discharged
my newborn twins
were not.

Oct. 4 (Mon.)
I was told
a nurse noticed
something in
my son's eye.

that hurts
that someone else
noticed my son's
eyes
before me.

The Ped. Ophthalmologist
checks eyes on Thursdays.
So we waited.
At this point
we were slightly
concerned
but figured
whatever it is
we will
they will
just fix it.

I think the NICU staff
knew more
than they wanted to
let us know.
It wasn't till after
when they started
saying things like
"I haven't seen anything
like his in the 25 years
I've worked in the NICU"
geee so glad you can now
check that off your list!

Oct. 7 (Thurs.)
Easton was 9 days old.

I made sure
I visited the NICU
between the hours
of the PO's rounds.
My husband tried
to time his visit
with his work schedule
but when the PO came
I was alone.

she walked in
she had all this crazy head gear
she is still our same PO

she looked
while I sat
she looked up
with all the crazy head gear
still on
and told me

yes, your son has a
severely cloudy cataract.
I had no idea
what that meant
but I knew
from the tone
of her voice
that it was serious.

At that point
I was completely
numb
she went on
and on
lots of information
I was still
alone.

She left
the nurse looked at me
I could tell
even she was sad
I was numb
I immediately
went to my baby notebook
and regurgitated
everything
I re-wrote almost
the entire conversation
but still
I was numb
I was in shock.
I was in disbelief.

Baby A
my big boy
my "healthy" baby
huh?!
surgery
immediately
as soon as possible
when he is strong enough
huh?!
he's a premature newborn
baby
my baby

the baby
I have yet to hold at 2 am
in my arms in my home
alone
the baby I have yet
to examine naked
with no tubes no wires
you must have
the wrong baby
not my
baby

It wasn't long
after writing
that my husband
walked in
I remember
telling him
that his Eye
was bad
really bad
the worst

I remember
the nurse tried to
correct me
tell me
tell him
we had options
surgery
vision restoration
contacts glasses
patching
etc.

I remember
my husband
immediately
sat down
immediately
started to cry
I hugged him
I teared up
but

I remember
I didn't cry
I couldn't cry
because I still
truly
didn't believe it.

In my head
I was dreaming
I was going to
wake up
and this was all
going to go
away.

On the inside
I was praying
with all my heart
wishing
with every fiber of my body
willing
with every inch of my soul
for all of it
to just go
away.

I truly felt
that if I just
went to bed
the next morning
everything
would be
different
the nurse
was going to call
and tell me
they made a mistake
Easton's Eye
was just fine.

Boy
oh boy
was I wrong.
Certainly we
I still had
a long way
to go...

More to come
I need a break.

Tuesday, February 21, 2012

Sick

As I sit
to write
I'm listening
to naptime
in the monitor
I can hear
the strong sound
of a snore
because
we are ALL
sick.

I've been waiting
and waiting

for our family
cough
congestion
cold
to just go away
and it won't
it has been
relentless.

I'm trying
to rise above

the exhaustion
the whinnig
the snot
but as it lingers
and lingers
I'm finding it
more and more
difficult
to create ways

to distract

and entertain

them.

I reach points
when I love
the neediness
the snuggles
the heavy embrace
of them
sick
knowing they
just want
their Mommy.

Rocking
them
together
brings me back
to the beginning
when I would sit
in their nursery
pregnant
waiting
wondering
when
just rocking
me carrying
them.

And now I know
now I know
the good
the bad
the ugly
and
the snotty.

Then I reach
a point
when I just
want it
to stop
enough already
grow up
entertain
take care of
yourself!

Don't get me wrong
I still love it