Thursday, December 29, 2011

Greetings From The Household of Sick People

I just got this text:

'Just for the record...I'm going through blog withdrawals.  U need to post!  :)'

I know, I know, it's been a while.  However, my life is so full of every good thing there is, I simply haven't found the time to write anything inspiring.
Toddlers and Tiaras will do that to a person, every single time.

And that right there is the truth of it.  My life has been reduced to watching episodes of Toddlers and Tiaras.
Feel free to mourn with me.

'Tis cold and flu season and we are mostly staying at home.  As it is, Jason spent the last 24 hours in bed being sick and Emily had a visit with her pediatrician today, to make sure the congestion and runny eyes she has isn't anything worthy of a hospital stay.  Her lungs are clear...all is well...for now.  I've had two mostly sleepless nights watching over my little lady, and I'm a tired mommy.

I don't do well being confined to my house.  I didn't know this about myself.
Last night a friend came to visit and I'm afraid I may have scared her away forever.  It was my first real adult contact in 24 hours and when she asked how I was I cried as I said, "Oh, fine.  I'm just fine."

In other riveting news...
When Jason asked me what I wanted for Christmas I told him there were two things I didn't want:

-anything technological
-outdoor gear...of any kind

"What else is there?"  Jason asked.
"Let's go for something personal and romantic," I suggested.
"Romantic?  Where do I get something romantic?" 

And then he spent the next few minutes thinking out loud.

"Do boutiques sell romantic things?  What is a boutique?"
"Does this mean I have to go to the mall?
"I am NOT going into Victoria Secrets."

He makes me laugh.

In the end, I think every gift he got me was purchased at an outdoor gear shop, except for a lotion set he bought.  The lotion is described as sensual and with that, Jason figured he had romantic in the bag.

There you have it.  The excitement that is my life.
I'm going to go now and tell Jason he has a choice: football or my company.
I'm secretly hoping he picks football so that I can go and crawl into bed.





Sunday, December 25, 2011

Thursday, December 22, 2011

God Bless Your Way

My memories of Christmases growing up are of Spam sandwiches at Grandpa's house, Charlie Brown Christmas trees, oranges in the toe of my stocking, Mom's homemade fudge and divinity, Christmas Eve parties with my extended family, and lots of love and laughter.

My memories also consist of doing Sub For Santa projects, and leaving anonymous gifts at the doors of those in need; of caroling at the convalescent center, and of witnessing the goodness of my parents as they reached out to others.

If there is one good thing I learned from my parents, it's the need to love and give to those around me. I have spent my life trying to follow their examples.

Not too long ago when I posted about my lack of Christmas spirit, someone kindly suggested that if I wanted to feel the spirit of Christmas I needed to serve those around me.  I believe in those words, and not just at Christmas time.  I have learned over and over again that reaching out to others makes everything in my world a little bit better and brighter.

I talked with my mom about the comment left on my blog, and this principle of reaching out to others, and I cried just a little bit.  I have spent the last 4 months giving everything I have, and then some, to my little Emily, and there have been times where I have felt that I simply had nothing left to give.  I have a page full of names of people I need to write thank you notes to, others I need to call; birthdays have come and gone; I have notes of promises I've made, even just little ones, and during the day when I find two spare minutes, I do everything I can to cross something off of my list.

My grandma told my mom once, when my mom was deep in the trenches of taking care of newborn triplets, "There is a time and a place.  Your time and place right now is to let others serve you.  Someday you will be able to return the favor."

I have never before been on the receiving end of service...of secret acts of kindness...until now.
All of it leaves me feeling very humbled and overwhelmed.

One night last week I came home later than usual from the hospital and found a note on the door saying a package had been left for us at our neighbor's house.
The package was a flower arrangement made out of fruit, and attached to it was a balloon and stuffed animal for Emily.
In the mail box the same day I found a gift card to Target with a note that said "Emily is going to need a lot more diapers."
Another package revealed a hand made doll for Emily from a friend we've never met who lives in Canada, and yet another package delivered Emily's first Christmas ornament.

The next day a neighbor brought us dinner, and a best friend spent hours with me at the hospital.
This same best friend left a stocking for Emily, and in that stocking was a gift more generous than anything we have ever seen.

I have felt the true meaning of Christmas more this year than any other year.
And I am often reduced to tears as I send my quiet thank you heavenward.

This experience with Emily has exposed all of my weaknesses and vulnerabilities.
It has shown me the areas in which I am lacking...it has tested my grit and determination.
My faith has been tested, my heart has been broken, and my prayers have become more sincere.

And yet, through it all, I have learned that God's love is real.
I have learned that from so many of you.
You have been instruments in God's hands.

If there was one thing I could wish for this Christmas, it would be that everyone, everywhere, could also feel of that love.

My favorite Christmas song talks about that love, and it's message touches my heart every time I listen to it.  My hope and prayer is that it will touch your heart as well.

As my grandma taught my mom, there will be a time and a place and I will return the favor.

Merry Christmas, and may God bless your way.


Tuesday, December 20, 2011

Emily Might Be Teething


Due to sleep deprivation...again...I can't form a coherent sentence.

Jason told me I could nudge him in the middle of the night and tell him it was his turn to check on Emily, but can I really ask him to share in my over-protective worried mother syndrome?

Speaking of Jason...be dears, and tell me what the heck to get him for Christmas.
I need one more gift...just something small, yet meaningful.

One of these days I'm going to tell you a story.
It's a good story.
Maybe for Christmas...

I had a long moment today where I seriously doubted my ability to do this...to be Emily's mom...to give her everything she needs...to be strong enough to meet 'hard' head on every single day for what seems like will be forever...and so I cried.

And while I cried Emily smiled at me.

I love that little girl.
I hope and pray every day that that love will be enough.

Our heart baby enjoying her heart.

Monday, December 19, 2011

Once In A While...


... the doctors at Primary Children's Hospital feel the Christmas spirit and start handing out gifts.

Our gift?


Welcome home Baby Girl.

Sunday, December 18, 2011

Decisions Decisions

Jason and I are up late watching the finale of Survivor.
I googled Survivor to see who won...I can't handle waiting another hour.

We went to the hospital this morning thinking that we would be bringing Emily home with us.
Tonight we left her sleeping in her hospital bed.

We've come to a crossroads and we're uncertain about where to go from here.

Emily is being fed 100% by a feeding tube.
She's been given permission to drink from a bottle if she will.
The formula she's on was never made to be taken orally, and it tastes horrible.  I know because I tried it.
My little lady refuses to drink the formula.  I don't blame her.

But here's the thing.
Emily hasn't had a single issue with her gut since we put her on this formula.
We're not completely convinced that the change of formula is what fixed everything, but it could be a big factor.

So...do we forget the bottle for now and leave her on the feeding tube or do we take a chance, hoping that her gut problems are in the past and give her a bottle with a different formula that tastes better?

Today we made the decision to keep giving her the nasty formula through her feeding tube, and give her a better tasting formula in her bottle.  Emily didn't reject the bottle...in fact, I think she liked it, although she didn't drink very much.

She's still in the hospital tonight because we're watching her gut.  We will give her another bottle in the morning and then go from there.
I am so nervous about this decision.
We're risking the health of Emily's gut ... but we have to be willing to take the risk if we don't want Emily to still have a feeding tube when she goes on her first date.

And who knows if any of that even made sense.

Here's hoping that you haven't eased up on your prayers for our little Elimy...we've got a few more hurdles to get over.

Saturday, December 17, 2011

We've Made It Official


Emily's personal mascot is the pink elephant.
How can it not be after you see this picture?


She's got her elephant binky in her left hand and her elephant blanket in her right hand.
She curled up with that elephant blanket all on her own.
A friend of mine brought me a hand carved elephant from Africa while I was still pregnant with Elimy.

"This is for Emily," she said.  "Elephants are known to have really strong hearts."

If you happen to see a pink elephant Emily can't live without let me know!

That Emily of ours?
She's a different baby.
She smiles the world's biggest smiles, she talks, she laughs, she kicks her legs and waves her arms...

My mom and I decided tonight that the world would be a better place if everyone could have heart surgery and come out a week later a happier person.

That little lady...I wish you all could meet her.
She would fix even the most broken of hearts.

That's all.






Friday, December 16, 2011

I Found Christmas Spirit!

In the last 30 minutes my 'to do' list grew by at least a mile.
And all of that has to do with the phone call I just got from Jason.
He's at the hospital today, and I stayed home to catch up on things like laundry, and dishes,and Christmas shopping and oh...just my job...the one that provides the much needed insurance we have.
Because have I mentioned how much my little Elimy is worth?
Oh. My. Honk.

Back to the phone call.

Jason asked, "Do you want the good news or the bad news?"
I always ask for the bad news first.

The bad news is that Emily is still in the hospital.
The good news is that she passed her swallow study with FLYING COLORS!
And that means that the feeding tube has already been moved from her intestines to her tummy.
And it also means that she is going to drink from a bottle and that soon we can pull that blankety blank tube all together.
(But in the meantime if the tube comes out Daddy can put it in...no more trips to the ER!)
((Mommy could put it in too...if Mommy had any bravery about her whatsoever.))

A few minutes later Jason called again.
"Do you want the good news or the bad news first?"

The bad news is that Emily is still in the hospital.
The good news is that she'll be coming home sooner rather than later.
Maybe Saturday, maybe Sunday...but no later than Monday...assuming that nothing dramatic happens between now and then.

I'm still in shock.

And I still have a million and seven things to do.

What to hear the other good news?
My sister and I ran to do one small bit of Christmas shopping and we stopped for lunch at our favorite soup/salad place.
When we went to pay we were told "Our computers are down.  Lunch is on us."

Do you know how often something like that happens to me?
Never.
That's how often.

Now I have a million and eight things to do.
I have got to go.




Thursday, December 15, 2011

95% Of Our Day Has Been This:


The other 5% has been this:


(Sometimes I dream that I'm out running.  Do you think I burn calories that way?)

Want to hear about a pet peeve of mine?
I didn't realize I had this particular pet peeve until recently.
It's not even a fair pet peeve and I'm working on getting over it.

About a month ago I got a letter in the mail from the insurance company.
My day is never complete if there is not some form of correspondence from the insurance company.
I opened the letter and read about how the insurance company was following up on what they felt was negligence during one of Emily's hospital stays.

Their claim?
"Pulmonary insufficiency due to some kind of trauma."

And then the following questions:

Was the trauma due to an auto accident?
A motorcycle accident?
A boating accident?

And other equally ridiculous questions.

How many kids have boating accidents while they are in the hospital?

Enter my pet peeve...at least part of it.

Do your research.
Act like you have even the smallest of a clue.

Emily was born with pulmonary insufficiency.  Had they read anything at all about her they would have read that she was diagnosed before birth with pulmonary atresia.

I called the insurance company and said as kindly as I could:
"Why are you sending me this form?"
"My daughter is three months old."
Etc. Etc.

They promised they would delete whatever they needed to from their computers so as to avoid other such forms in the future.

* * *

The day before Emily was admitted for surgery I got a phone call from the hospital.

"I just have a few questions to make sure we have all of the information we need before tomorrow's surgery."

And then the questions were these:

Has Emily ever been hospitalized?
Yes?
Can you tell me the dates and the reasons?

Was she premature?
No?
Are you sure?

After several minutes of these kinds of questions I finally asked, "Do you have Emily's medical history on your computer?"

I was told that she did.

"Have you read it?"

I was told that she had.

I wanted to suggest that she read it again before she drove me insane with her questions.

* * *

If you are at the hospital for an appointment, and not a visit, you don't need to check in and get an ID badge.
When we brought Emily in for her pre-op appointment we told the guy at the front desk the reason for our being there, and he let us through.

Now, I can tell you that in the last three months one of the security guards has changed her hair color twice.  Another of the security guards got a perm.  And I can come close to telling you how many times the other security guard has worn his neon blue shirt.

But that day, the neon blue shirt wearer stopped me THREE times in an hour.

"Are you here visiting?  You need to check in."

GAH!!!!!

I can guarantee you that had someone walked past my desk twice a day for almost all of the last three months I would remember them.
I would remember them if they had walked past my desk twice. Period.

The other part of my pet peeve is that people don't take the time to remember.

Do you know how many times the nursing manager has introduced herself to me?
I've lost count.

The child life specialist has introduced herself to me more than once.
"We've never met," they all say.

YES WE HAVE!

* * *

But you see, it's not fair because not everyone in the world has a memory as freaky as mine.
Not everyone can remember every face they've ever seen, and almost always be able to place where they've seen it.

Not everyone remembers every little detail quite like I do.

And that's why, when the nursing manager stops to introduce herself to me I always smile and say, "It's nice to meet you.  Thank you for stopping by."

* * *

And thank you.
I feel better now.



Wednesday, December 14, 2011

The Fast Track...For Once


It was two years ago yesterday that Jason proposed to me.
In the last two years I think we have been through enough 'hard' to last our entire marriage.
...in my humble opinion...

Our Emily was moved out of the ICU this morning.
Jason and I are in awe of how fast this process is going.
Fast is not normally in Emily's vocabulary.

No one dares give us a time frame for when we can take her home but the goal is to have her home for Christmas.
Our hang up will be with Emily's feeding, as is usually the case, but even with that we are all cautiously optimistic.

They had her incision uncovered for a few minutes this morning while they were removing one of her drain tubes.  This little lady has been through a war.


This whole business of Emily being born with a heart defect was not part of the plan.
And even though it's been a part of our lives now for four months, there are days it still doesn't seem real.
And then there are days where the reality of it just hurts.
That will probably never go away completely.

BUT...
The one thing I've learned more than anything else through this experience is that God always provides exactly what you need to get you through even the biggest of plan changes.

 I'll always be grateful for that.

Thank you ... all of you ... for being part of what God gave us to get us through.


Tuesday, December 13, 2011

Slow and Steady


When we got to the hospital this morning Emily's nurse informed us that Emily is a pistol.
"She's mad at the world," the nurse said.
I love that Emily's mad at the world.  It means she's fighting, and we need her to fight.

Daddy started singing to her and she calmed right down.
This little lady loves her daddy...in case you didn't know.




They took her breathing tube out this morning and put her feeding tube back in.
Here's hoping the feeding tube is semi-temporary.

We can't get over the fact that our baby is pink.
I knew she looked blue before, but I didn't realize how blue until I saw her pink.

As usual Jason's work family has taken great care of us.
A few days before Emily's surgery we got some gift cards in the mail to the Marriott Hotel near the hospital.
I slept soundly last night, knowing that Emily was in the best of hands, and that we were only 5 minutes away from our baby girl.

Emily will most likely be in the intensive care unit for two or three more days and then if all remains stable, she will be moved to the recovery floor.
I didn't think it was possible but we might actually have the little miss home for Christmas.

Emily is my hero...and will be forever.

Monday, December 12, 2011

On The Other Side of Anesthesia


Our little Emily came through surgery without any complications.
The next 24 hours are the most critical, but everyone is pleased with how well she's done up to this point.
She'll remain sedated tonight, and we'll remain near her side...
...but not too near because the sound of Daddy's voice causes her blood pressure to skyrocket.


Finally...my little baby is pink.
Pink is my new favorite color.

Thank you is never enough - but thank you.
The love shown to our little girl - and you are all included in that 'our' - is overwhelming.
And humbling.
And just...
Just...

Well, my heart is filled to overflowing with gratitude for all of it.


Sunday, December 11, 2011

With Prayers In Our Hearts


There are a million things I could say tonight.
There are even more thoughts than that going through my mind.

Our little miss is sleeping peacefully...I'm glad for that.
I'm glad that she doesn't know what she will have to go through in a few short hours.

Jason and I love this little girl of ours - more than we ever thought we could.
And every time they cut into her heart, they cut into ours as well.







We love you Baby Girl.
We've loved the last three weeks we've had together at home.
Fight hard sweet girl.
Please fight hard.


Thursday, December 8, 2011

One Day Closer


Dear World,

I've had a busy day.
I had to model for a little while, and take care of my cousins at the same time.


You can really tell how 'blue' I am when I'm next to my cousins.
After my surgery next week I will finally have the same skin tone as my cousins do.

I'm 4 months old.
Olivia is 2 months old.
And Lizzy is 2 weeks old.
Olivia and I are jealous of Lizzy's hair.

Our Aunt Becca bought us the outfits.
She's amazing and we love her.
She even looked for an outfit that I wouldn't have to put over my head.

Daddy is watching American Chopper.
Daddy cried when Paul Sr. and Paul Jr. hugged and said 'I love you' to each other.
Just between you, me, and Mommy, Daddy needs to get out more.

Mommy says that she used to have Crayola Fridays on her blog, but she thinks that now Friday can be my day.  
How many 4 month olds do you know who have their own blog day?
I think I'm a lucky little girl.

World, I'm mostly just tired and I'm looking forward to having more energy.


Good night World.

Love, Elimy

Oh, and world?
Will you pretty please pray for me and my surgeons?
Mommy and Daddy tell me that I'm going to be okay but your prayers would help me to feel better about everything.

Love, Elimy ... again.

Wednesday, December 7, 2011

The Surgery Date Has Been Changed

Would you feel betrayed if I told you that sometimes I post things on Facebook before I post them on my blog?

Emily's surgery is now scheduled for Monday.
If you only pray once a week, let's make Monday the day you do okay?

Speaking of Emily (I know, I know, when do I ever speak of anything else?) ...
We have needed to replace the tape holding Emily's feeding tube in place for a couple of days now.
Jason and I have avoided doing it...mostly because we're chickens.

Emily could hate a lot of things about her life: needles, IVs, x-rays, diaper changes...you get the idea.
Out of all of her options, the only thing she does hate is the minute anything or anyone even thinks about getting close to her nose.
It's so sad.  Her whole little body just shakes and goes crazy.  She screams and turns red and purple and chokes on her tears and we have to turn her oxygen up, etc. etc.  It's miserable for all of us.

Tonight we decided to wait until she was asleep before we attempted to change the tape.
Our great plan lasted all of seventeen seconds.
Why?
We had too much old tape to remove and the little lady caught on to our antics.


See?  Too much tape.
We're justified though...pulling the feeding tube out is not our best plan.  Ever.
Once Emily was fully awake it was a disaster.
She cried.
And cried.
And then screamed.

By the time we were done we had managed to keep the feeding tube in place which is nigh unto a miracle, and Emily was worn right out.
Our secret hope is that the next time Emily comes home it will be without the blankety blank blank blank feeding tube.

I had a story to tell you but I simply can't keep my eyes open another second.
Too bad for you.
I'll try to remember to tell it to you tomorrow.


PS.  Go here...my other blog...to read the sweetest letter Emily recently got in the mail.

Emily's Concert

It's been a lazy morning at our house.
Life has a way of suffocating us sometimes...and I think the last four months and now Emily's upcoming surgery have affected Jason and me in different ways.
We were up late ... late ... talking about balance, and expectations, and the need for patience and then more patience, and especially the need to remember that this time in our life won't last forever.
Thankfully Emily slept until 9 am and allowed Mommy and Daddy to sleep in.
Today is the first day that I can remember where we haven't rushed to shower and get ready for the day.
In fact, I made pancakes from scratch and Jason and I just enjoyed breakfast together while Emily was taking a nap.

Jason is not thrilled with the video I'm posting today.  I told him he owed me and so I was posting it regardless of his hesitance.
You should be proud.  I created a YouTube account, and uploaded this video all. by. myself.
I amaze myself sometimes.

Emily is a lucky little girl.
She gets her own personal concerts ... front row seat even ... all from the comfort of her home.
She even gets to wear her pajamas.  I think that's acceptable when the musician is also in his pajamas.

You don't have to watch the whole thing to see the tenderness of this scene.
Jason didn't know I was recording him and at the end of the video he looked at me and said "You're recording this???"

We'll make it...my little family.  We're going to come through this and be stronger for it.


Monday, December 5, 2011

Emily's Hats


Dear Jane, Kim, and Diane,

I just wanted to thank you for these:





I think I look pretty cute.  Don't you?

The therapist told Mommy today that my head is flat and not shaped the way it needs to be.
I was kicking my legs like crazy because I wanted to say, 'What do you expect after all of the time I've spent in a hospital?'
After I recover from my next open heart surgery I will probably have to wear a helmet.
Can't a baby girl catch a break?
That's probably what I would say if I could talk.

Anyway...I really hope that the hats will fit over my helmet.

Thank you for thinking of me...and for sending me such special gifts.

Lots of love,

Emily

Friday, December 2, 2011

Wherein Emily Smiles

...these iPhone photos just don't cut it for me...
...but her happiness oozes through the graininess.












Thursday, December 1, 2011

I Should Sleep When It's Night Time


Take a look at this:


It's what I left behind at the salon today...
...and it's mostly volume, not length.
The older I get I realize just how clueless I am about life.
I had no idea you could take a razor to your hair and walk away 10 pounds lighter.

After I go and buy the $4,000.00 worth of product it will take to make my hair look good,
and figure out if I am finally mature enough to handle a round brush,
I'll take a picture.
Maybe.


Jason is working late again.
Emily is tucked in again...or at least until she has her next blow out and we have to have a complete wardrobe/bedding change.
And I am folding and putting away all of the clothes that no longer fit Emily.
It's kind of sad actually.
She didn't get a chance to wear many of her 0-3 month old clothes, and now they are all too small.

Equally sad is that she has a drawer full of adorable 3-6 month old clothes that she probably won't wear either.
Due to multiple diaper blow outs in a day we have resorted to dressing Emily in clothes that don't have to go over her head.
It's too much of a hassle to disconnect the feeding tube and her oxygen every time we want to dress or undress her.
In case you wanted to know, there aren't many outfits that button or zip.


The other day when I mentioned my inability to find a dainty necklace several of you suggested I look on Etsy.
Do you know me?
I almost had to Google Etsy to see what it was you were talking about.
Almost.
I Etsied necklaces for an hour.
Have you seen how many necklaces there are on Etsy?
Have you?
Good night nurse.
In the end I didn't find one that jumped out at me.

Also too?
Pintrest?
Pininterest?
Pin whatever it is?
What is it?
On this one I really am clueless.
In my mind I can see my little sister rolling her eyes.


I was at the store when Jason called me.
"Mommy, Emily is bored with her toys.  In fact I think just looking at them makes her want to dry heave.    Can you find a new toy for her?"
I looked and looked.
I couldn't find anything that wasn't like something she already had.
Except for this:


In my next life I'm so going to be a photographer.

Obviously she has to grow a bit...and I swear she smiles.
All I want to say is it's a good thing she's not spoiled.

I hope you all have a fabulous weekend.
In our world we're going to decorate a tree.
Three of my sisters are coming to help.
Sisters...the world needs more of them.