Born this way

Look at them.
How different could two twins be?!
Boy Girl
Big Little
Blonde Brunette
Brown Blue
But no matter what they are still
Brother Sister
As Lady GaGa puts it
oh ah la la la
Baby they were born this way!

Look at her!
Would you ever know
she was born with
two inguinal hernias
two holes in her heart
a pinched aortic valve
and SMALL.
She was born exceptionally small.
She still to this day remains small.

But look at her!
She's amazing.
She's a survivor.
She's a fighter.
She's sassy and sweet.
And she loves her brother.

This kid!
Look at him.
He's on a mission.
He just went Giraffe Sighting.
He was born with
the eye.

Here it is!
How beautiful is that!!!
Look carefully...
You can see the contact.
The edges of it are just beyond the outer edge of his iris.
You can see his scars.
Two little white dots, at 12 o'clock and 6 o'clock.
You can see the remaining lens.
The white penisula thing pointing down and into his pupil.
You can see his pupil is not perfectly circular.
You can see his iris isn't either.


I get lost looking into his eye.
I fall more and more in love with it and him every time.

He's amazing too!
He's determined.
He's focused.
He's confident and cuddly.
And he absolutely loves his sister.

It just amazes me.
How he and she were
born this way.

10 Months ago today

Really?!  10 Months!
Why does that feel so old?
I was cool with 9 months, but 10!
That's double digits!!
That's a full term pregnancy.

It brings me back to the beginning.
I can't believe how far we've come.
It was a Tuesday, bi-weekly appointment.
Take the B elevators to the Fetal Testing Unit.
I had my bags packed and in the car.
They had been packed for weeks earlier actually.
I wasn't thinking it would be the day.
I didn't want it to be the day.
I was ready but NOT ready.
It was still September, due date Nov. 9.
My goal was to make it to October.
I thought for sure the Dr. would want me to keep going.

Baby B, my precious petunia was running out of fluids.
She failed her fetal movement test too.
The Dr. had her eye on her at the last apt.
She didn't improve and if anything she got worse.
It was time.
We went as far as we could go.
We wanted to give Baby A, my big bubba as much time as we could.
But she needed to come out and he was coming with her.
Ready or not.

Right after the appointment they scheduled a tour of the NICU for us.
I knew this all was going to happen, the NICU.
But now it was real.
Now I was staring at little babies in enclosed cribs.
Some of them were awake and alone.
I started to cry.
I thought I was just nervous.
But really I knew.
I knew that my babies were eventually going to be them.
I knew eventually they would be awake and alone.

Easton John, 5 lbs. 13 oz  He had the most amazingly, soft and beautiful skin!

Azalea Jayne, 2 lbs. 12 oz. Her entire arm was the size of her Daddy's finger!

Now today they may be awake and without me.
But they are NOT awake and alone.
They stand on the sides of their cribs facing each other and the games begin.
Sometimes it's laughing and giggling that I hear.
Sometimes it's conversation noises.
Sometimes it's banging on the rails back and forth.
And then my favorite 2 little monkeys jumping on their beds.

I suppose they are making up for lost time.
Six weeks worth of  post-delivery separation.
That was the hardest.
Knowing that they had just spent 34 weeks together.
To only go through the trauma of birth and then not be near one another.
No touching.
No snuggling.

No nothing.

First snuggly photo shot together... 6 weeks later.

10 months later, they do everything together but snuggle!

The days of trying to fill in the car seat for safety.

Those days are long gone.

Last night Azalea wasn't feeling good.
I went in and changed her diaper.
She would have gone back to sleep on her own.
She does that.
She is extremely independent.
I think it comes from her days in the NICU.
Easton we could hold.
He loves being held to this day.
She was only allowed 1 hour a day, kangaroo style (skin to skin).
I call it incubator-itis.
Well last night I picked her up and rocked her.
She let me.
She snuggled right in and fell asleep before I even got comfortable.
We rocked longer than normal.
I wanted to savor the last of 9 months and 29 days.
I took a mental picture.
I smelled her hair.
I made my body like a statue and tried to remember the shape.
How she felt, how little she still was.

Sometimes when you look back at the distance you've traveled,
it makes seeing today sweeter
and seeing the distance of tomorrow more exciting.
There are so many challenges still ahead
but I can't believe how many challenges we've already come through.

About a week later

Having a little fun with patch time

Well this was my idea in the first place.
I was on a high, all excited about getting the contact in while awake.
And worried about the future when he won't be taking am naps.
The idea started out with good intention, truly.
Yet this has been the hardest week of all and I don't see how it will get better.
He now wakes up if I try to do anything to him while sleeping.
So those days are apparently over.
Every morning it is a battle, some are quick and easy, others not so.
If it doesn't go in in the early morn, we try again before the am nap.
Let's not forget that it usually falls out at least once a day as well.
I now try not to feel anything, no excitement, no disappointment.
Because I have learned neither last very long and only add to the roller coaster feelings.

Nothing takes your mind off things more than babies in water!

However, I must say this has made me confront everything head on.
Confronting him while awake.
Confronting all my emotions over his condition.
I don't think I ever really let myself grieve? over an eyeball?
That sounds so silly but I have been on autopilot since the twins were born.
When they told me about the cataract, I was just like ok what do we do.
When they told me about the surgery my 3 week old baby would be having,
I was just like ok how do I take care of him.
When they told me about the Persistant Fetal Vasculature,
I was just like ok so how do we treat it.
When they told me to put a contact in his eye when he was sleeping, I did.
When they told me to put a patch over his good eye, I did.
Sure at the time it was all painful but I didn't have time to feel.

Now they pull up and stand in this thing, we had to lower the floor!

Now they have personalities.
Now they have a routine.
Now I have SOME time.
Now I have to confront this.
In one week...
I have been angry, to the point of screaming.
I have been frustrated, beyond the definition of the word.
I have been sad, so sad the tears just don't stop.
I have come to see the distance.
I have come to see that this is bigger than contacts and patches.
I have come to see that this is going to be a daily, hourly struggle.
One that I have to just accept.
One that I have to just roll with.
One that the more I roll with it, the more he will learn to roll with it.
He is never going to just let me put a contact in his eye.
But maybe some day he will understand why.
And I just pray that in the meantime,
all the tears, his and mine
all the stress
all the time
makes us stronger, even more loving and grateful.

My sister's twins with my twins, you gotta love it!

Warning... Side effects

I've had enough... the contact is in it's case.
I actually got it in this morning on the first try!
He was awake.
It went in.
The world is good.
Not so fast
an hour later, where is the contact?!
Oh wait found it.
Good.
AM nap here we come.
Nope...
Let's just say it wasn't good anymore.
Easton and Mommy need a break.
This roller coaster ride is getting old.
It just doesn't end.
It is the never ending roller coaster.
It is a nightmare.
It consumes me.
How does a tiny, clear disk have so much power.
I feel like it has literally wedged it's self right between
Me and my beautiful, happy, easy going, loving son.
I don't want this role anymore.
I just want to be Mommy.
Nice Mommy, hugging Mommy.
The one with hearts and rainbows and sweet kisses.
Not hold me down, contact shoving, patch Mom.
We are feeling the side effects of Contact Hell
and I want out!

Let me OUT!!!

See the Distance?!

What's out there, what's to come?

Ok so it's official... Easton is not seeing the distance, literally.
Today after much drama the contact finally went in.
We went on about our day, no big deal.
During lunch I got a good glimpse of his eye...
What no contact, where is your contact buddy, is it in there?!
Nope.
Huh?  Ok remove the patch.
Huh?  Ok, is it in your high chair, on the floor, your crib?!
Found it!
In the crib, where he was ohhhhhhhh only an hour and a half ago!!!
Ok breathe you found it.
Easton, why do you not care?
Why did you just play and reach for toys?
Why did you just eat and feed yourself tiny bits of veggies?
Why?
Can you see?
What are you seeing?
Your good eye was patched.
Can you see out of your bad eye?
Momma called the Dr. and the Dr. said...
No more monkeys jumping on the bed.
Ha, I wish!!!
She is not concerned.
She believes his prescription is correct.
She thinks it's due to his developmental age.
He just needs to see more with it on.
Really?... ok?!
She went on to explain he can see 20/20 only about a meter in front of him.
So without the contact he may be seeing shapes, just not definition.
Patching without the contact is not bad but with the contact it better.
Well sure!
The contact has to get in his eye and stay there though to accomplish that.
So now the contact is back in but yes he is currently in bed.
Another day of patching after 3pm, great!

Well we know he can see this distance... oh wait no patch, does that count?!

Who knew she'd get baby blues, both of us have brown!

Giraffes

Giraffes have always been a favorite animal of mine.
Little did I know their God given ability to "see the distance" would end up being my motto in life.
Both figuratively and literally!
Today was difficult to see the distance.
I really am trying to put it all into perspective.
But when you are on your hands and knees for the umteenth time looking for a tiny, clear disk
that you know is only inches away from your finger tips... it's difficult.

I've been trying to put the contact in Easton's eye while he is awake.
Trying is the key word here.
And bless his little heart, I know he is trying too.
We have a routine now... in the morning as soon as he gets up, still groggy and all.
I swaddle him, kiss his forehead and say let's see how we do today buddy.
He knows what I am doing and he is only 9 months old.
He tolerates my fingers prying his eye lids open for only so long.
Then I take this foreign object and attempt to shove it in his eye in the .3 seconds that he gives me.
If we are lucky it goes in... if we win the lottery it goes on.
Today I got it in 3 times, but never got it on.
Eventually both of us have had enough, hello good morning it's 6:45 am!
Then he decides to go into marathon mode and never took a morning nap, aka contact time.
I tried again while awake mid morning anyway.
In once, but not on.
Ok so now I'm frustrated, I'm worried about patch time and the kids are eating lunch already.
Where is the day going...
Finally he falls asleep, finally the contact is in.
He wakes at 3 and we are just beginning to clock hours of patch time.
Some are better than none, I suppose.
See the distance!

Never mind all the toys that were in the bucket mom, just give me the bucket!

Azalea crawled over and parked herself right next to her brother, she probably would have gotten in if there was room.

Where do I begin

Just getting our feet wet.

Ok so here I am... officially blogged in.
My blog felt so naked so I had to post something, anything.
I have to confess, I had a million things to say, to write about and now I am intimidated.
Ideas, goals, intentions.
And now I'm overwhelmed.
Baby steps I suppose, that has been my life for the past few months.
Baby steps as a new mom, baby steps as a new blogger.