525 days a memoir

 

525 days, a memoir of the beginning Carli's life.

 

525 days ago was the day Carli graced the world with her presence.

She was beautiful, tiny, whole.

She slept a lot. And she ate.

Mother's Day came 19 days later.

I sat in a cold dark room at 3am as my sweet baby got her first MRI

Why is she blue? Why does she stop breathing?

The answers, nobody knew.

Guesses were our answers: she's so young and she has a cold..

"New babies are lazy and just stop breathing when they have a snotty nose."

3 days later we had her home again.

Who knew then that it was all just about to begin?

A watchful eye I certainly did keep.

I'd stare at that baby while she'd sleep.

Her pretty pink tone then turned to blue.

I called my husband who was on duty.

He came right home, to the hospital we rushed.

More spinal taps, scans and needle pokes.

She stopped breathing while they gave her an iv.

Still no answers...just wait and see.

Pulmonologists, neurologists, general peds we would meet.

No answers, just educated guesses.

I watched my sweet baby turn blue one last time...

The monitor showed her blood oxygen level dropped to 29.

I couldn't wake her, she wouldn't respond.

Fear became a feeling that was suddenly quite fond.

A few days went by...

We left the hospital trained in CPR with Carli's new apnea monitor on.

4 weeks went by and she got a fever.

Oh no.. Not again, not another spinal tap needle.

Against recommendations I refused to take her in again.

Lets wait and see...maybe she'll be fine.

A whole day went by and then it spiked high.

To the ER we went...in hopes it wasn't much.

Refusal of spinal tap, all others had been clear.

I couldn't let them poke her again, I'd developed spinal tap fears.

All other tests were clear...they highly recommended it.

Craig and I agreed, then we watched her scream

As they held her down again and poked her back with that long needle.

Curled up in a ball with the needle standing tall..her fluid dripped into a vial.

This time around she had meningitis.

3 more days in the hospital...this place now seems like a 2nd home.

Oh but there are things to be thankful for...just look around.

Here comes a clown..

Who just left the room of a kid who has cancer.

Those thoughts, at one point, got me by.

Then I started reading the Bible and found a spiritual high.

Thank you Jesus for this sweet baby girl.

Who just came into our lives and mixed up our world.

I know it could be worse. And how much You must think of me.

You gave us this baby to take care of with special needs.

6 months came up and she couldn't sit up.

Her head still wobbled and she didn't grasp for much.

She couldn't pull to standing...I had that Mommy hunch.

She wasn't where she needed to be.

At 7 months we had her apnea monitor discharged.

No "true apneas"...she's good to go...but wait...

When you pull her arms, her head lags behind.

The things Mommy noticed then became the pulmonologists concern.

A trip to the pediatrician is where we went next...

She got her first set of shots & a diagnosis of low muscle tone.

2 weeks later she wasn't acting quite right.

She stared strangely and her head began to drop.

Her stomach started twitching, her head turned all the way to one side.

Her eyes deviated, her hand began twitching.

She cried out in moans and she'd seem to come to.

Then she'd turn her head again and she just wasn't there.

"Mommy is here, Carli, I'll never leave your side."

I said it over and over and over again in that ambulance ride.

No more CT scans, she's already had 2

We got no real answers...what could we do?

Follow up with neurology...again "wait and see."

If she has another one catch it on camera...

We'll start her on medicine if it happens again.

A couple weeks later I saw it in her eyes...

And then she started that terrible no good cry.

She moaned out as if she was in fear.

Nothing could catch the attention of my sweet 8 month old.

I called 911 while I captured her seizure on video.

No answers. Nothing. I slowly became more filled with fear.

Could it be this or that?

What kind of future are we looking at?

Wait and see...

Wait and see...

Take her to physical therapy...

She's still behind.

Occupational therapy was also recommended..

It started at 10 months old.

She couldn't grasp things, she didn't reach..

I could slap her arm and she wouldn't turn to look at me.

Through out this all, while I had moments of fear...

I dropped down in prayer and kept my Bible near.

Remained thankful for what I do have...knowing things could be worse.

One visit with her occupational therapist opened her eyes.

She started looking beyond herself...she noticed the walls.

She grabbed things. She made messes!!!!!

Thank you, Jesus!!

We started out at a 2-4 month level and progressed rather quickly.

3 months later she was at a 9-10 month old level.

Who knew a baby holding a cup could be such a beautiful sight?

Never in my life have I cried so many happy tears.

Watching her learn and grow started to diminish my fears.

She still had seizures...

Low muscle tone.

Slow sensory processing.

525 days later, I still have to put her arms in her sleeves.

She has just started to get food to her mouth for a snack.

I purée her food because she doesn't know how to chew.

Still no answers..just waiting to see.

17 months old now, 525 days old.

I'm starting to feel selfish...this stuff gets old.

No answers. No walking. No crawling. Little talking.

But she LAUGHS. She constantly smiles.

She even pitches fits...so I know she's "in there."

I wonder what the future has in store...

I look forward to the day she can walk through a door.

I can't wait to not dress her in new born baby mode.

The therapies, the work...it's a heavy load.

The only definite answer we have...

"It's a long road ahead."

Sometimes I lie when people ask me her age.

I don't like the looks I get when I answer that question.

Although I feel sad and sometimes get angry inside.

I wouldn't trade her for the world.

Just sitting here...waiting and seeing.

Seeing her do things that mean not much to others...

Don't take your baby holding their cup, putting their own arms in their sleeves,

Sitting up, crawling, feeding themselves, talking or pooping on their own for granted.

This by far is the most difficult task I've been handed.

Some Mom's never see their children do these things on their own.

I can't help but wonder what she'll be like when she's grown.

Will she be able to live on her own?

I believe so.

Until I know for sure...I'll be here...waiting to see.

And even though somedays I decide that this sucks...

I can't help but believe it is me that she needs.

& She is what I need to better learn and grow.

525 days later...I still love her and hold her and squeeze her tight.

Her smiles and her laughs...her learning her grasps...it's worth the fight.

 

 

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