Thursday, March 29, 2012

Our Girl Needs To Catch A Break

If Jason were to come home Friday night and say, "Dear, the house is a disaster" (he wouldn't, but if he did) I would say all of this:

-Do you know how many times your daughter has thrown up on me in the last week?

(A lot.  Enough that she ran out of clean pajamas and I am out of clean pants, and I've had to change her bedding three times ... two of those times in the middle of the night.)

-Do you know how much sleep I've had the last two nights?

(Not enough.  This morning when I was up at 4:30 doing laundry to guarantee that the little lady would have a clean pair of pjs for after she threw up again, I might have shed a tear.)

-Did you know that I've been on high alert watching our little lady so that if her symptoms of RSV get worse I will know to take her to the hospital?

(Of course he knows, and we both wonder why it is that Em only really gets sick when he goes out of town.)

-Did you know that I really really really missed you this week?

(He knows this too, because I've told him so more than once.)

-Did you know that even though she feels lousy, your little girl smiles for everyone, and smiles the most when she watches American Idol?


Em is sick.  If she gets worse, it's likely a hospital visit.
I asked the doctor today, "Is it a matter of when she gets worse and not if?"

The doctor crossed her fingers and said, "Let's hope for if she gets worse."

Have you ever heard that when you're stressed you gain belly weight?

I've been stressed now for a a year...I don't stand a chance do I.

My sister saves my life.
She comes over so that I can shower.
She goes to the store and buys me milk.
She buys Emily new pajamas.
And tonight she will be bringing me dinner from Olive Garden. (Maybe stress isn't really my problem.)

I'm just here folding laundry if you need me for anything.

Wednesday, March 28, 2012

Time Heals

I know of a girl who just had her first child - a sweet baby girl.
A sweet baby girl who has both the same heart defect and chromosome deletion that our Elimy has.
My heart is a bit weary for this new mommy, knowing what she will endure the next few months.
And my heart is beyond grateful that we are here now:

And not here:

Monday, March 26, 2012

Dear Dad...

It looks like I have to start avoiding my dad.
It's a shame because I kind of like the guy.
But I can't handle the pressure he is putting me under.
Every time I see him it's the same thing:
"Noelle, did you read my book yet?"

(Remember when I told you that he just had his first book published?)

Sunday when he asked me that question I told him that I had read some of it.
"How far did you get?" he asked me.
"Miguel is about to wreck his jeep," I replied.

I nodded my head and said, "Dad, my life is kind of crazy.  Remember Emily?"

Tonight when I saw my dad he asked the same question but with different words.
"Noelle, did Miguel wreck the jeep yet?"
I ducked my head and said meekly, "No" and then I waited.


Now, it's not like I've never read his book.
I have.
I edited it for him more than once, and if I do say so myself, I made some really great suggestions along the way.
It's just that I haven't read it in it's finished form.

My brother who never even knew Dad was writing a book read it in a few hours and on Sunday said in a tone meant to bait me, "Noelle, even I've read Dad's book."

I explained again tonight about my life.
"Dad, this is your granddaughter.  She's super cute but she's incredibly high maintenance...not to mention the fact that I'm trying to work, and be a wife.  I read every chance I get."

"Noelle, you stay up until 3am reading a good book; you just don't want to read my book."

It's true, I used to stay up late reading all the time.
I never went anywhere without a book.
My dad knows what my bookshelves look like, and he knows I've read every book I own at least once, and probably twice:

I tried to ease his mind.

"Dad, I have a stack of books by my bed that I've been trying to get through since August, and the only book I pick up right now is yours.  I promise that I am reading it, and that I won't look at another book until I finish it."

Dear Dad, here's proof of my stack:

(And that's not to mention the books I have waiting for me on my Nook.)

Finally, he let the subject drop but before I left he asked, "So when can you come over and help me with my blog?" 

(He's creating a blog about his book.  It's tricky because he wants everything to be anonymous.  He wrote the book using a pseudonym and has gone to great lengths to guarantee that the book can't be linked to him.  He hates being the center of any kind of attention.  And this is why, if you ask me about the book, I will be all cryptic and stuff.)

I told him that Emily and I would come over Wednesday night if Mom would agree to fix me dinner.
Nothing fancy, just my favorite comfort food: eggs, biscuits and white sauce.

"I don't know why I bother," he mumbled.  "What's the point of a blog if I can't even get my own daughter to read my book."

Can you see why avoidance is my best approach?  (And here I sit...blogging instead of reading.)

* * * * *

Do me a favor.  If you are reading this in your reader, go to my actual blog and look at the amazing new design.

My friend Kristin designed it for me.  She's amazing and if you need a blog makeover, I highly recommend her!!!  

Go.  Click on my blog.  Right. Now.
With sugar on top?

A Bit of Business And A Quick Story

I know, I know... two posts in one day.
At our house we don't love helmets.
Just thought I would share.

But we do love Anonymous.
Really and sincerely.
Anonymous, I would love to respond to your sweet email, but personally.
Would you be willing to email me?

Emily waves now when you say hi to her.
She puts her arm straight in the air and then waves her little fingers.
She won't always look at you while she's waving, but it's about the cutest thing ever.
Last night Em was cuddled in my arms, almost asleep, when someone on TV said 'Hello.'
She shot her little arm straight in the air, waved, and then snuggled closer and fell asleep.

Yes, I know.
She's adorable.

Sunday, March 25, 2012

By The Time Jason Gets Home I'm Going To Need More Than A Nap

Em and I are on our own this week.
The last time Jason was gone this long Emily ended up in the hospital because of a massive infection in her then healing incision.
If you see smoke signals, it's me begging for mercy.

You know what I love?
It's watching Jason through the baby monitor.
He sneaks in to Emily's room at night and leans over to kiss her on her forehead.
My goodness, the love that man has for his baby girl is overwhelming.

I've had a rough weekend.
Some conversations have left me unsettled, and a little bit sad, and as a result, my emotions are right at the surface.
Why oh why did I not buy the waterproof mascara?

Tonight at dinner Jason and I went through the process of feeding Emily.
It's a production, every time, and it seems with every feed I find myself pleading in my mind, 'please don't throw up, please don't throw up.'
Somewhere mid feed I looked across the table and saw my niece, just a few months younger than Emily, drinking from a bottle and it hurt my heart a little bit.
Before Emily was born I didn't know that feeding issues like hers even existed.

I have the world's cutest video of Emily splashing in the bathtub but I'm not sure that it's even politically correct to post it, so the above picture will have to do for now.

My restless legs and I are going to bed now.
I hope that you all have a great Monday!

Friday, March 23, 2012

Oh Dear...

In truth, I can't get enough of this little girl.

It seems that I ruffled some feathers with my post yesterday.
I don't think it was a 100% ruffle, but perhaps it was a 70% ruffle.
As the commenter was anonymous, I can't ask to be certain.

You all know that my post yesterday was in fun right?
Well, all of you except for our friend Anonymous.

Anonymous suggested that I read a book written by C.S. Lewis called "Til We Have Faces."
I Googled the book title and learned the the story is written about two sisters: one beautiful, one with a facial deformity.
The story is basically one of 'misapplied love and jealousy.'

Oh dear.
My sister is beautiful.
Is there some hidden meaning in this?

Seriously though...

Today's post is to appease Anonymous...if I can.  Dear Anonymous, I promise I'm not jealous of my sister or vice versa.  We love each other a lot! 

Anonymous, did you know that the sister of whom I speak is my twin/triplet sister?
Here's a picture:

Notice how we're in matching outfits?
It was that way until we were old enough to take a stand and dress ourselves.
(Bec, was that when we were 16?)

We made it our life mission to be different...and even still, it wasn't until we were in college before we were known as individuals, with names, rather than 'oh you're one of the triplets.'

It's funny actually.
We did everything we could to be different, and yet, when we were living hundreds of miles from each other we still came home having purchased the same outfit.

Where I am flip flops, my sister is high heels.
Where I am a pony tail, she has every hair styled perfectly.
Where I am maccaroni and cheese, she is pork chops and home made bread.
Where I am outdoorsy, she is air condition and a good book.
Where I am short fingernails, she is a manicure.
Where I am a hoodie, she is a sweater.
And where I am one color of eye shadow, she is 10 colors...and they all look perfect on her.

And yet we're the same too...
We both love a good book.
We cry at Hallmark Commercials.
She can finish my thought before I do.
We both iron our Levis.
We enjoy eating out.
We both love ER and Grey's Anatomy.

(I just asked my brother 'What's one way Becca and I are alike?'  He sighed and said, 'You're not.')

I guess what I'm saying Anonymous, is that in this one thing?
Embracing our differences and loving each other?
I think we've got it figured out.

Thursday, March 22, 2012

A Burning Question

I recently learned that my sister color coordinates her eye shadow to the outfit she is wearing.
Either I am completely hopeless when it comes to fashion and style...
Or she is nuts.

Which is it?

Tuesday, March 20, 2012

Just Some Stuff

I have these moments where I feel like I'm writing to an empty an audience that doesn't exist.
Sometimes I like that, sometimes I don't. 

Little Miss Helmet has a sore above her left ear because of the helmet's pressure.
 Until it heals, and until the helmet can be readjusted, she's grounded from the helmet.

Jason is going out of town next week.
He will be gone from Monday until Saturday.
Thinking about how tired I will be makes me want to sit down and cry.

I had a random memory that made me smile.
I'll share it with you.
Lucky ducks.

Would you believe me if I told you I didn't have my first date until I was 17?
And then didn't have my second date until I was in my 20s?
It did a number on my self esteem.
My mom told me over and over again that it was because I was too intimidating, but in my head intimidating equaled ugly.

Here...the only high school picture I can find.

***Side Note***

Several years ago I was talking to a friend from high school and he asked me about boyfriends and dates.
I told him the truth and he was shocked.
He told me that the reason he never asked me out was because he assumed I had guys lining up at my door.
My mom took that as vindication.


In high school my dad and I went to Mexico to do some humanitarian work.
At the end of our trip we spent some time in Mexico City.
One night we ducked into a Dunkin Donuts to escape the was the first time I had ever even seen a Dunkin Donuts.
We ordered our donut of choice and then sat down at a table to wait out the storm.
After we had been there for a few minutes the guy who had sold us the donuts, shyly walked over and gave me another donut.
He smiled at me and then walked away.
My dad laughed and said, "It looks like he's smitten."
I was genuinely shocked.
But that simple act of giving me an extra donut did more for my self-esteem than anything else ever could.

Yesterday I talked with a friend I haven't seen or talked to since my wedding.
He is the closest guy friend I have had throughout my life.
He's happily married with four kids, and has been for a long time.
Once in a while we touch base and catch up.
Last night I told Jason about the conversation and I think he got a little jealous.
That did something for my self-esteem too.

And because you love her almost as much as I do...
Here's my view from this morning:

Monday, March 19, 2012

Hello, Welcome

Sugar and I got a divorce and I've had a headache ever since.

Did you know that there is something about eating in a cafeteria that compels you to eat dessert?
It's true.
In fact, I bet I could do a study and prove it scientifically.
In case you didn't know, I've eaten a lot of cafeteria meals in the last six months.

Dang Gina.
(Don't ask me where that came from.  My brother used to say it all the time and all of a sudden there it is, in my mind.)

It was time to end things.
The first two days required the consumption of Coke.
(Yes I know, Coke has sugar.  But it also has caffeine...and caffeine is about the only thing that will kick my headaches.)
Day three I quit Coke too.

***Random Side Note***

If I don't eat I get massive, horrible, make me want to die, headaches/migraines.
And it seems that taking care of Emily overrides my need to eat.
Every single time.
Jason came home somewhat late the other night and he had dinner.
"I got you a Coke because I knew you would have a headache by now."
He's what they call a good husband.

I gave myself Sunday to eat dessert at dinner if it looked really appetizing.
Tonight it did.
Wouldn't you know it.
The headache I've had all day?
It was gone within 10 minutes of me finishing my dessert.

Speaking of dinner...

At one point I looked around and said quietly to myself, "This is completely pathetic."

My dad was sitting to my left.
He had a grandson on his lap, and Trouble sitting next to him on the table.
They were playing a game on my sister's iPad.

Next to them two of my sisters were playing a game on my sister's iPhone.
Next to them another sister and her boyfriend were also playing a game on their phones.
Jason was sitting next to me with his phone out.  He was researching the world's hottest peppers.

My dad said to me, "Can you pass me the potatoes?"  
(For a minute I thought he wanted another baked potato.)
But then he added, "The creamy kind."

If you haven't seen While You Were Sleeping this will be lost on you, but the all time favorite movie quote in my family is 'These mashed potatoes are so creamy.'

I laughed and then Dad said, "So Noelle, what do you want to talk about?"
We talked about the book he's writing.
(He just finished his first; published it even.  He's amazing like that.)

Meanwhile, at the other end of the table, Grandma and Emily were in their own little world.

You know, Jason asked if I rated my tired state on a scale from one to ten, where was the least tired I have been in the last few months.
My answer was seven.
Makes me wonder why I'm still awake.

It's because of you.
I know that your day can't possibly go as well if there is not a post from me.
I'm totally selfless like that.

Tomorrow first thing I have to Google 'foot mouth hand disease' or whatever that is called.
My friend's kids have been suffering from it, and I want to appear educated before I email her back and offer my sincerest condolences.

There you have it.
Life lately.

Friday, March 16, 2012

A Bonus Feature

...because sometimes one just isn't enough...

Thursday, March 15, 2012

I'm Going To Take Over My Mommy's Blog

Dear Everyone...Again,

Why do people keep doing things to me?
I don't do anything...I just take naps with my binky elephant and smile when people say smile.
If I don't get a long vacation from medical issues one of these days I'm no longer going to be the happy, peaceful baby you think I am.

And plus, I'm almost not a baby anymore.
Watch out when that happens because as soon as I can run, you can bet I won't sit still for things like needles, and ... stuff.

Thanks for listening.

Love, Em

PS. Remember when my mommy told you that she was not going to dress me in pink all the time?
Did you see the helmet?
She didn't stand her ground very well did she.

PPS.  How do these people think I'm going to be able to hold my head up with this thing I have to wear?

I've had a rough week.
Anyone want to take me to Disneyland?

Wednesday, March 14, 2012

Another Surgery Behind Us

The night before Emily's surgery Jason and I went out to eat for our anniversary.
Jason would eat Thai food every day if he could, and so we went to a Thai place he's never been to.
The middle of the night found me sick sick sick, with stomach cramps and throwing up.
Oh. I was miserable.
Three o'clock.
Four o' clock.
I had to get up at 5:00 to get everything ready and be at the hospital in time for surgery.
At 4:30 I took every drug I could think of and said a little prayer.
Let's blame the emotional state of my blog post yesterday on the fact that I was sick and hadn't slept in 24 hours.

(Jason ate the leftovers tonight.  I had to pull away before he kissed me so that I wouldn't be sick again.)

Our sweet little lady came home tonight.  She hurts but she is so brave.  As long as she is in her Mommy's or Daddy's arms she is okay.
Tonight she put her hand up on my neck and played with my hair until she fell asleep.
Oh my gosh I love this little girl.

(Elimy's pajamas came with a Valentine from an amazing lady I 'met' through this of these days I'm going to take a picture of the love that was sent Em's way on Valentine's Day.  I realize now that I never thanked you.  THANK YOU!)

It's late and I'm tired so I'm off to find my pillow.
Here's a little preview of a quilt I'm quilting for Emmy (that's what one of her cousins calls her).
((Because I have all of the time in the world to quilt.))

Thank you all for the love and support you give to me and my little family.  My world is a better place because you are in it.

Tuesday, March 13, 2012

Sometimes It's Just Too Heavy

Well, I managed to keep it together as I made my way from Emily's hospital room to my car.
But as I pulled out of the hospital parking lot?
I lost it.
And I cried the entire hour drive home.
(Jason stayed at the hospital.  He knew I needed sleep.)

It didn't get easier...handing my baby over to the anesthesiologist.

Emily is having a hard time recovering; they had to put her on oxygen tonight.
As she was coming out of sedation she opened her eyes and looked at me.
She whimpered and croaked out 'ma ma' and then started to cry.

All of the progress I had made emotionally was shot to you know where in about three seconds, and tonight I feel like I'm right back where I started seven months ago, and I wish that for a minute...for a day... life for my little lady could just be easy.

Monday, March 12, 2012

Once Upon A Time

There was a guy

and a girl

who hiked the same mountains but at different times...because they didn't know each other.

And then, because of divine intervention, the guy and the girl met and fell in love and decided to hike mountains together forever.

Happy Second Anniversary Husband.
I love you.

Sunday, March 11, 2012

When Mommy Isn't Looking

Dear Everyone,

On this, the final day I will have tape and a tube on my cheek, I wanted to show you what my number one goal in life has been:

All I have to do is wait for the right moment...when the tape has lost some of its stickiness and within two seconds I can pull the tube out faster than Mommy even realizes what has happened.

Between you and me, this is what I really think about my tube:

Don't forget to say a little prayer for me.

I love all of you!

Thursday, March 8, 2012

Just Popping In To Say Hi

And to let you know that Emily is having surgery on Tuesday.
They're going to put her feeding tube into her stomach.
Poor girl will lose her tube/tape one day and get a helmet two days later.
Say a prayer for her? Please?

Tuesday, March 6, 2012

My Changed Heart

Several years ago I was sitting on a rock that was jutting out of a river in the rain forest of Guatemala.
I had just come from an impromptu swim in the river, and as I sat on the rock drying out, I thought about my life.
I was quite certain that I had everything I needed in life.
I had a good job.
I had great friends.
I had a supportive family.
I was able to travel and see new places.
I was involved in what seemed to me then, the most important thing I could ever be doing: humanitarian work.
I was being pursued by a handsome, older dentist.
I was in great physical shape.
And as a side note, I had great hair.
I'm sure I have a picture...hold on a second while I find it.

Up to that point in my life, I don't think I had ever been more content.
And while marriage and a family would have been a great addition, I knew I didn't need it to be happy.

* * * * *

Yesterday Emily experienced a breeze for the first time.
It was warm enough that I finally dared to take her outside.
We stood on our front porch for a few minutes before we braved the big world of the street in front of our house.
I carried her in my arms, and watched her as she looked at the world through eyes that were as wide open as she could get them.
Every time a breeze blew across her face Emily would catch her breath and reach her arms out and draw herself closer to me.

Today I watched as Emily's eyes followed a flock of newly hatched chickens.  She wouldn't break her gaze away from those chicks for anything.

Tonight as Emily and I were snuggling in the rocking chair before bedtime, Jason came in to give Emily her medications.
Emily opened her drowsy eyes when she heard her daddy and sat up in my lap.
She watched him intently as he put the medicines through her tube, and when he left the room she stayed with her eyes fixed on the door.
After watching for a few minutes she decided that her daddy wasn't coming back.
She turned herself towards me and snuggled back into my arms.  She put her binky in her mouth and within minutes had drifted off to sleep.

* * * * *

When Emily was first born I was afraid to let myself love her.
The first 36 hours of her life had been more traumatic on me than anything else I had ever experienced, and I still wasn't sure that she was even going to live.
If I let myself love my baby I was afraid that I would never be able to endure the heartbreak of losing her.

* * * * *

Our hearts are where the greatest miracles occur.
And as long as our hearts are open for whatever it is that God has in store for us, whether it's joy or sorrow, it could be that a breeze on a daughter's face becomes infinitely more beautiful that a river in the middle of the Guatemalan rain forest.
It could be that a flock of baby chicks makes up for the hair that has turned prematurely grey due to the stress that life has been, and the love a baby girl feels for her daddy is a result of the best kind of humanitarian work there is.

I'm grateful...more than I will ever be able to say...that God took a chance with my heart.
That He trusts that I will continue to find a way to put the broken pieces back together.
And I'm most grateful that he gave my baby girl's heart a fighting chance.

The New Normal

Morning sickness.
Not me.

This is Jason's explanation for the reason our little lady is still throwing up.
We had 12 days without it, and we were hopeful that Emily had grown out of a phase.
It was not to be.

For a week her schedule was every day.
Right now she's on track for every other day.
We plan our lives around her schedule.
When she throws up right when we take her out of bed we know that she will probably really throw up at some point during her next feed.

This morning she has a doctors appointment during the middle of her feed.
Call me crazy, but I don't want Emily throwing up while the doctor is trying to measure her head for a helmet.  (Last time she threw up she cried and her entire little body shook for 20 minutes.  It's not pretty.)
I'm going to change her schedule and feed her early, getting the throwing up out of the way, and then she should be good the rest of the day.

Sunday night I told my dad that my prayers in this regard were not being answered,
If they were she would not throw up.

Don't say it.  I know.  Kids throw up.  And if that's all it was I would be okay with it.
But the experience traumatizes my baby every single time.
I'm not okay with that.

My dad suggested that perhaps I needed to change what I ask for.
And so sometime this morning, between two and three when I couldn't sleep because of a migraine that is lasting way too long, I prayed and said, "If she's going to throw up, would you please, at the very least, help her to not be traumatized?"
We'll see what happens.

How is it that I can write an entire post about throw up and you're still reading?
Are you?
Still reading?

I hadn't planned on this post.
I thought of a story I wanted to tell you ... a really good story, and I had the post written in my mind.
I was excited to sit down at my laptop and write it out.
But then I was hit with the migraine from you know where, and that story is gone.
I can't remember even a little bit of what I was going to write about.

Here's something.
Yesterday I took three of my nieces to the store with me.
I told them that if they didn't ask for anything I would buy them a treat when we got to the check out counter.
32 seconds into the shopping trip we passed the St. Patrick Day display and it was downhill from there.

"But Noelle, I don't have anything green."
"I need this for school.  You don't want me to get pinched do you?"
And on it went.

"Shoes!  Noelle, I need new shoes."
"Isn't this dress beautiful?  I really need a new dress."
"Can I have this and a treat?"

At one point I caved and told them that they could choose between a treat or a St. Patrick's Day headband.
My niece Gabi who is 7 carried two headbands everywhere we went debating on which one she wanted more.

"Noelle, I can't decide.  Can I have both?"
I said to her, "You really want two headbands?"
She didn't say anything for a few minutes and then asked, "So, when you said 'you really want two headbands' does that mean you are going to buy both of them for me?"

Here's how it ended up.

Gabi got two headbands.
Sami got a green shirt.
Erika got one headband and two candy bars.

I'm weak.  And now really behind schedule.  Have a great day!

Sunday, March 4, 2012

A Pet Peeve





And on and on ...

My honk...I go batty sometimes when I'm reading.
You might as well highlight the improper use of the word in fluorescent pink.

I've said it out loud.

* * * * *

Once in a while I have emotion that overwhelms me.
Sometimes it's happiness, sometimes it's hurt or sadness, and sometimes it's anger.
It scares me because I'm not an angry person.
Today, for a little while, I felt anger.

In the middle of the afternoon I stood up and handed Emily to Jason.
I walked to the cupboard, took out one lone yellow plate, and opened up the back door.
I stood on the patio and debated for about .25 seconds before I threw that plate as hard as I could against the concrete.
You know what?
I felt better.

I need more plates.

Not too long after (notice the proper use of the word too) Jason quietly went out and cleaned up my mess.

Thursday, March 1, 2012

In the Last Six Months Emily Has...

...spent 86 days in the hospital
...had over 75 chest x-rays
...been put on a heart/lung bypass machine twice
...had three open heart surgeries
.. had one massive sternal infection
... had four bouts with necrotizing enterocolitis (an infection in the bowels)
...had two PICC lines
...been treated for c-diff (a bacterial infection in the intestines)
...been sent to the hospital once in an ambulance
...had 10 NJ tubes placed into her intestines
...had 5 echocardiograms
...had 8 different rooms in the hospital
...had one ph probe test
...had 3 swallow studies
...had 4 blood transfusions
...been intubated 4 times
had more IVs and blood draws than we can count.

But today...
Today Em's cardiologist told us that her heart is stable...
...that it sounds great...
...that it's likely she won't need her next surgery for four or five years,
and that he doesn't need to see her again until she's a year old.

We have other hurdles to cross and other battles still to be fought with our little miracle,
but our sweet baby girl has a heart that, for now, is working like it should.
And this mommy's heart can finally rest easy for a little while.