Living with hope

The day Torry and I left St. Elizabeth’s hospital,

we drove home to pack and grab what we knew off hand what we’d need for living

away from our home for an extended amount of time.  There was no pre-thought to anything.

Just get in, search, find any bag and throw the stuff in. I don’t think we were home for more than 5 minutes total.

Now, all that stood between us and our baby boy was

the two hour trip to Milwaukee.  We drove in nearly absolute silence.  The radio off and both

of us just spent the whole time absorbing what had happened and what still laid ahead.

We found the Children’s hospital very easily.  Bonus to our arrival was the sign that read:

“Free Valet Parking 6:30am-8pm M-F”  That was a nice load off our shoulders.  We could just get out and

head right in.

It being a children’s hospital, we had to check in at the front desk to verify we were

Brecken’s parents.  We were given directions to the NICU location and made our way up.  The

walk was a little long and it was uncomfortable for me given that I had just birthed my baby 2 days prior.

We gained access to the NICU and before being able to go see your baby you have to

hang up your coat and wash your hands.  I remember going through all of these motions mindlessly.

I was still trying to comprehend the fact that I’m a parent of a baby in the NICU.  It still didn’t seem real.

I remember walking down the hall to pod B.  Brecken’s room was the first on the left. I don’t exactly

remember what was said and done next, all I remember was getting in there and getting right

next to Brecken’s side.  We were told we could touch him and hold his hands and

pretty much do whatever we wanted minus the fact that we couldn’t hold him because he was now

on the cooling blanket.

I had a mix of emotions.  I was so incredibly sad to see him like that-all hooked up to monitors,

wires, the EEG, etc.  But another part of me loved seeing him moving his arms and legs and

sort of opening and moving his eyes around.  Brecken was no longer on a ventilator and could

breathe fine on his own.  He just had the oxygen as an added precaution should he maybe forget to breathe.

Although he made progress with breathing and he was now moving a little more on his own, he still

didn’t have a gag-reflex nor was his movement of that of a normal baby.  His movements were more loose

and partially provoked from him being cold from the cooling blanket.

We stayed for hours just holding his hand, talking to him, singing to him.

After spending lots of time with him, we made our way over to the Ronald McDonald house.  We

were so exhausted and had tons to lug up to our room. Everything was just thrown on the ground.  I don’t

even remember if I showered that night or not.

And so our routine began.

Each morning we got up, dressed, ate a little something for breakfast and then made our way

over to the hospital.  Each day we spent hours with Brecken just being by his side.

I rarely ate during our time spent there.  The only time I was ever away from him was when I had to

pump every 2 hours.  On average, Torry and I were at the hospital from around 9-10am until around 7-8pm.  Each

morning we’d ask the nurse on duty taking care of him

if there had been any positive changes.  Nearly every day it was the same: that there wasn’t.

The main nurse who took care of Brecken, Alayna, did her best to allow me

as much motherly duties possible under his circumstances.  She showed me how to change

his diaper in the midst of all the wires and such.  For the first time in my life I was afraid of

changing a diaper.  I was afraid of pulling a wire out or something.  But I got used to it and it did feel great to

be his mother the best that I could even under the conditions.  I got to change his diaper,

when they started feeding him my breast milk she taught me how to do that, and we were eventually taught how to

suction him.

By spending so much time in the NICU, I got to sort of learn of other babies in Brecken’s pod.  I noticed

there was a lesbian couple in the cubby next to Brecken’s.  As with all the babies in there, I didn’t know what was

wrong with their daughter.  After a few days they happily got to bring her home.  Adorned with happy family

members, balloons and so much excitement.  I was so happy for them, but I was

dying on the inside still not knowing what was going to become of my own baby.  A few cubbies down,

there was an Indian couple.  I know cultures have their own beliefs and ways of life, but  I still found it odd

that the mother was always completely covered except for her eyes.  They also stayed in the

Ronald McDonald house.  They pretty much kept the same schedule Torry and I did, often all leaving around the same

time in the morning and returning close to the same time in the evening.

Then there was the baby girl

located across from Brecken.  She was a complete mystery.  Not once did I ever see a parent there.  This

little girl was all alone day in and out.  She had a name, and there was parent contact information on her

white board, but never any physical friend or relative there to be with her.  She was always having things

done to her.  I felt terrible because I felt horrible myself not being at Brecken’s side 24/7…even though

I had 24/7 access to him.

Brecken stayed on the cooling blanket for 3 days.  Then he had to spend part of a day

warming back up.  Finally, on the morning of Saturday January 12th, 2013, we got to hold our baby boy

for the first time since he had bee born.  I cannot tell you enough the feelings that surged

through my body knowing that my very own baby boy was going to be in my arms.  It took the help of 2 nurses to

get everything situated with all of his wires and the EEG that was still attached to his head.  But then finally, finally

Brecken was placed in my arms, where he belonged.  Where he was supposed to be 4 days earlier.

I don’t think I’ve ever been more happy in my life then that very moment.  I absorbed the weight of him

in my  arms, the heat from his cheeks as I kissed them, and the sounds he made as he breathed.  I remember Torry

looking at me as I held him and asked me “Happy Mamma?”  The way he’d always ask that

question during my pregnancy when I was satisfied with something.  But nothing was more

satisfying then holding my son for the very first time, so naturally and eagerly I shook my head “Yes”.

In the process of taking turns holding him and me pumping, Brecken had to still get an MRI

done before we could be given any answers about his condition.  That was scheduled for Monday and we would

 have to wait another couple of days after that to finally sit down with the team of Dr’s to

learn his prognosis.  But until then, we soaked in our son, hoping, wishing, and still dreaming about

our future with him.

We still had so much hope. I still believed that the hell we had

gone through was all we would have to endure. We believed

that Brecken was going to pull through this and

surprise us all.

We had no idea the nightmare we were going to be entering.

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