Because Nice Matters

Another Day, Another Dollar ... spent on medical bills ...

noreply@blogger.com (Noelle) — Wed, 01 Feb 2012 07:12:00 +0000

You wanted to know what I do when I'm not blogging?
I have breakdowns.
Really ugly, stay at home in my pajamas, crying all the time breakdowns.
In fact, I think Jason saw me cry more today than he's ever seen me cry.
And we've been married forever...if two years can count as forever.

When my mom asked me why I didn't go to church on Sunday I told her it was because I was tired of telling the world that I'm fine, when in truth, I feel far from fine.
Now now, before you think I've fallen completely off of the deep end...
We can't take Emily to church anyway, as instructed by the pediatrician, every cardiologist in the state of Utah, and more nurses than I have fingers to count. One of us has to stay home, and I just happened to volunteer.

It's dumb actually.
People I say I'm fine to at church read this blog...in reality I'm not hiding anything.

And now I wonder if I say too much on this little blogspot of mine.

Well, why no say it like it is? Most of you have been with me through the best and worst times of my life, and if you keep coming back it probably means that you're not bothered by what I write.

So with that I'll just tell you that I'm struggling.
A lot.

I'll also tell you that it will get better.
A lot.
And I'm taking the proper steps to make sure of that.

I just crawled across the wide expanse that is our bed to see if I could find a picture on Jason's phone.
Not any particular picture, just something different than what is on my phone.
I don't know where Jason is.
Maybe in his office working?
It's 11:52pm. Why is he working?

Oooohhhh...
Probably because this afternoon, when he realized the ridiculously fragile state of my emotions, he said that he would love to accompany Emily and me to the bank and then to my office so that he could see my recently finished paint job.
And then because when I told him I probably needed to eat some Mexican food he took me out on a date. (Thank you Becca, for always being there when we need you.) ((Have you met Becca? She's the best triplet sister a girl could ask for!))
And all of this was instead of doing the work he had to get done today.

Okay, I simply can't keep my eyes open another second.

Here are the pictures I chose from Jason's phone.

Because you love me you are not going to make any kind of comment regarding the fact that I haven't lost all of my baby fat (trust me, not everyone loves me enough to not say something) and because I love you I'm going to give you a tiny little sneak peek into my office.

Do you see the corner of that pillow in the second picture?
Those colors were my inspiration.

Hands

noreply@blogger.com (Noelle) — Sun, 29 Jan 2012 21:57:00 +0000

All Because Of The HGTV Channel

noreply@blogger.com (Noelle) — Fri, 27 Jan 2012 07:18:00 +0000

My office at work is one room in an incredibly old house.

It's the biggest room, and it's the only room that's decorated.

It's the go to office.

I can't tell you the number of times I've arrived at work and found a meeting of some sort going on in my office.

Recently my brother informed me that a change was in order.

We are going to hire a secretary (due to the fact that I'm no longer there all day, every day) and we need to make an office for her.

Ben said, "You can choose any room in the house for your office, and then we will make it work for the rest of us."

I debated and debated.

Should I keep my office?

Should I move to Ben's office?

Should I move to the one room that is empty? The one that is the smallest and needs the most work?

I finally chose the empty, small, poorly lit room in the corner of the house.

The reason?

It's the most secluded...the most private...and when Emily is with me at work, that is the best option.

One afternoon I spent thirty minutes in the room, trying to figure out how to make it work.

In one corner of the room, behind the door, is a closet that takes up a lot of space.

I've never been a fan of the closet, and in a flash of inspiration I called my cousin into the office.

"Travis, let's tear the closet out."

He looked at me for a minute and said, "Okay. I'll get a hammer."

My brother Ben was gone for the afternoon and I mentioned to Travis that Ben might kill us.

"No matter what happens, this was a good idea," was Travis' response.

There were at least four layers of wallpaper on the walls, a little bit of sheet rock, and then...

And then...

Adobe.

No two by fours ... just adobe.

When Ben later saw what we had done he said, "Why do I think this is going to involve me at some point?"

My cousin Travis loves me.

And because of that, he has spent the last week putting sheet rock up, mudding, taping, texturing, and painting.

And although he can't see the vision of what I'm doing with my new office, he helps me anyway.

My vision?

No one could see it except me.

I'm not going to give you any details until the office is finished but just know that the room is more than one color.

In fact, my sister came with me to the paint store and almost put her foot down to my choices.

I reminded her that I'm older and she didn't get a say.

After a week of Travis doing most of the work, with a little bit of help from Trouble and me, the office is 80% done.

(Isn't Trouble cute with her face mask?)

My brother came and sat in my new office today and looked around.

"It seems that no matter where you go, we are going to follow," he said.

"Every room in this house is, 'hello boring office.'"

"Your room is 'hello heaven.'"

Stand by to see the finished result.

And to 'anonymous' who left a goodie bag on my front porch?

THANK YOU!!!!!

True Love

noreply@blogger.com (Noelle) — Wed, 25 Jan 2012 05:32:00 +0000

My sweet girl knows that I'm her mommy.

There is nothing more that could begin to heal my broken heart than this.

Questions and Answers

noreply@blogger.com (Noelle) — Mon, 23 Jan 2012 06:56:00 +0000

Yes.

That's the answer to the question, 'Is Emily still throwing up every day?'

In fact, it's usually more than once.

For sure it's every morning after we get her out of bed.

And then during the day if I move her too fast during or after a feed, she throws up.

If she coughs she throws up.

And then sometimes when we're innocently minding our business it just comes randomly.

It makes it a little tricky to do tummy time.

This is the little miss hanging out in Mommy's bed waiting for her bath after an especially messy episode.

I swear I'm going to get a real camera one day.

* * * * *

Yes.

I survived being a single mommy for the week.

In fact, just today I felt like I finally had it figured it out.

I even managed to shower while Emily was asleep.

This is how I left her when I jumped in the shower.

Twix.

My favorite candy bar.

* * * * *

We're not sure.

That's what we came away with after Emily's appointment with the GI doctor last week.

We're taking her in Tuesday for an endoscopy.

They want to see what damage acid reflux has done to her little body before they make a final decision.

Regardless of the outcome of the endoscopy, Emily will soon be going in for her fourth surgery.

She will be having her feeding tube surgically inserted into her stomach.

Depending on what they find with the endoscopy, Emily may also have a procedure done to her stomach that would prevent both reflux and throwing up.

The G tube is more permanent but we're all hopeful it will be better for Emily in the long run.

Em has a very sensitive gag reflex and when she coughs the feeding tube in her nose triggers that reflex.

The feeding tube makes the acid reflux worse.

Changing the tape on Em's feeding tube causes great trauma for our little lady.

Basically, the feeding tube is the bane of our existence...

...except for that part where it's keeping Emily alive.

* * * * *

Homemade chocolate chip.

My favorite cookie.

(I can't believe you didn't know this.)

Double Stuff Oreos come in a close second.

* * * * *

No.

Emily is not taking a bottle.

Not even a little bit.

In fact, her feeding therapist has suggested we don't even try right now.

Part of the problem is the throwing up.

The only experience Emily remembers with fluid in her mouth is a negative one.

And I wish it were as simple a solution as 'change the type of bottle you use.'

Or 'change the formula.'

The feeding therapist, Jason and I made ourselves a goal to have Emily eating half of her daily feeds within 6 months, although it's likely Emily will never drink from a bottle.

* * * * *

75/25

The ratio of good days to bad.

Things are looking up.

* * * * *

Putting her thumb inside her binky and sucking on it.

One of the cutest things our little Elimy does.

And no, we're not getting rid of the binky any time soon.

It's what is keeping Emily out of the '100% oral aversion' category.

We'll gladly pay for braces if it means our little lady actually eats one day.

* * * * *

A pedicure.

The thing I'm craving most.

* * * * *

Love and sincere appreciation.

What I feel most when I think about all of you and the support you give to us.

* * * * *

Thanks for asking.

A Realization

noreply@blogger.com (Noelle) — Fri, 20 Jan 2012 05:48:00 +0000

I spent part of my morning wearing pajamas that were covered with Emily's throw up.

I spent the rest of the day in my exercise pants and an old flannel shirt of Jason's.

I fully recognize that I'm the perfect candidate for What Not To Wear.

Feel free to nominate me.

I won't be offended.

Impossible

noreply@blogger.com (Noelle) — Wed, 18 Jan 2012 07:23:00 +0000

This little lady?
The one who randomly snuggles up with Grandma's crocheted washcloth?

She is more than likely uninsurable.
I think it has something to do with the fact that her first 5 months of life cost almost a million dollars.

Now...it's okay that she's uninsurable...because for now she has insurance.
As long as I keep working...due to the fact that I'm the policy holder on our insurance.
And as long as our business actually stays in business.

Herein lies the impossible that is my life.
Emily's medical needs aren't going to disappear.
Probably ever.
And as a result I can't quit my job.
Probably ever.

As it turns out, I don't want to quit my job.
My job isn't a job.
It's my life...my family's life...it defines a part of who I am...and in order for our business to stay in business my job needs me.

But I have a daughter who is high maintenance, and who is on what my fellow heart mommy's call 'winter lockdown.'
She's a beauty and a darling, but she's high maintenance.
I have a husband, and a house, and laundry, and, and, and...
And at the end of every day, when I notice a little more clutter, and the dirty clothes outnumber the clean ones, I hang my head and think, "I need to quit my job."

See above dilemma.

Jason came home from a work meeting tonight and said, "This year is going to be crazy. I am going to have to spend a lot more time in the office than I have been."

See above dilemmas.

If you say to me, "you can do impossible things" my friend Joann is going to throw a brick at you.

Actually, what she said was that she was going to throw bricks through store front windows if Emily had tears on her face (see picture in previous post) from being sick. But I'm thinking if I asked her to throw her bricks somewhere else, she would.

Impossible.

Randomly throughout the day I will stop what I'm doing and have a mostly one-sided conversation with God.

"How am I supposed to choose?"
"I can't choose."
"I CAN'T choose."
"My options aren't negotiable at the moment."
"Hello?"
"Help?"

I'm looking at the budget.
I'm crunching the numbers.
I'm thinking my only saving grace is paying someone to come in once a week and help me out.

Jason tells me that's not necessary.
All I need to do is make him a job chart.

It's probably best I keep quiet on that one.

And all of this? ...plus a whole bunch of emotional baggage we better not get into...

This is the reason I had to make another New Year's Resolution:

When someone asks, and everyone does, "Is she your first baby?" my reply can no longer be, "Yes, and she is also our last."

Because maybe someday ... someday ... impossible won't seem so impossible.

But I'm not holding my breath.

And finally, because if you've read this far you deserve to see what I do for entertainment, here is what I do for entertainment:

I hook Emily up to the oxygen monitor to see how she's doing.
What?
You want this kind of entertainment?
Come on over...any time...as long as you're not sick.
If you are sick you are not welcome...no matter how much I love you.

There.
I've said all I can say.
Carry on.

PS. 100! 100 is awesome! That high maintenance darling of mine? She's amazing!

Bathing Beauty

noreply@blogger.com (Noelle) — Mon, 16 Jan 2012 19:29:00 +0000

Jason and I went on a date.
I know.
Miracles still happen.

My sister came and played with Emily while we went to a movie.
I only texted her four times during the movie.
I know.
Impressive.

Emily has a big day coming up tomorrow.
We are meeting with an immunologist in the morning, and a GI doctor in the afternoon.
How many of you get to meet with an immunologist?
The little miss will probably get her T-Cell levels checked.
Here's hoping her immune system is behaving.

The GI doctor...
...that's a bigger story.

A bigger story I'll tell you all about once I have the ending.
And if it doesn't end with 'happily ever after' well, Emily and I are going to be mad at the world.

But don't worry.
We talked about being mad at the world last night, after we changed the tape on Emily's feeding tube, and while Emily really was mad at the world.
We agreed that it's okay to be mad at the world, but not forever.
Our limit is three days.
And we can only be mad for three days if the offense against us is BIG.
Changing the tape is BIG in Emily's world.
Ideally, we're going to try to not be mad at the world at the same time.
Emily can have a day and then I'll have a day.
But...
When Emily throws up in the morning, all over everything...
Well...
You can all be mad at the world with us.

Dear GI Doctor, please please please...
That's all I've got.

Here's a picture of Emily from this morning, after her morning 'episode'.

Jason will be gone all week long.
He'll come home at night but the little miss and I will be on our own during the day.
Here's hoping Mommy doesn't lose her mind!

Reality

noreply@blogger.com (Noelle) — Fri, 13 Jan 2012 00:01:00 +0000

Emily's pediatrician saw her today...on his day off and when everyone else in his office was at lunch.

He gave me his cell phone number and told me to call him this afternoon, and again this evening.

He's doing everything he can to keep Emily out of the hospital.

Our Emily has been throwing up every day for the last 10 days.

It's been just once every morning but in the last few days she's decided to increase her offerings.

Jason and I walk around with a towel in our hands ... just in case.

In fact, Jason has his baby girl so pegged he can usually have her in position over the sink before she lets loose.

Emily has no other symptoms and we can't figure out what is wrong.

En route to the pediatrician today I got a call from him. "Noelle, I'm trying to decide if I should just send you to the hospital."

He doesn't know this, but I started to cry.

I am so tired...and so over throw up...and so ... so ...

Emily's doctor thinks she looks good considering and for today we've dodged the hospital bullet.

I think there is a general feeling that now that Emily's heart is 'fixed' life must be good.

Phone calls have stopped, emails have slowed down, and Jason and I are mostly left alone.

And usually that's okay with me. We've had so much love and support and I will be forever grateful.

But the reality behind our closed doors remains the same.

A cold or the flu could land Emily in the hospital that fast.

A cold or the flu could end up costing our baby girl her life.

And every time I hear her cough I send a silent prayer heavenward, asking for the strength to just make it through one more day.

Emily's pediatrician put it perfectly today. "Noelle, Emily is scary. I can treat 99% of my patients all of the time, but Emily is that 1% because of her heart."

That will never change. Emily will always be that 1% and somehow I have to figure out how to do something other than cry.

Maybe that will be my New Years Resolution.

Sharing A Memory

noreply@blogger.com (Noelle) — Wed, 11 Jan 2012 06:16:00 +0000

To be completely honest? I'm drowning.
On many different levels.
And although I could write ... and write ... and still not get it all out, I'm just going to tell you of a memory I had today.

We lived within walking distance of the high school, and we would often hop a fence and run home for lunch.
One morning before school my dad asked my sister and I what we wanted for lunch that day.
We told him we wanted steak.

When we went home for lunch we found a note from Dad that said, "Dear Daughters, here's your steak."
Next to the note was a wooden stake...like a tent stake...that Dad had carved sometime that day.

Becca and I probably ate peanut butter sandwiches that day, but we held on to that note for years.

Emily's Vest is the First Item of Clothing Her Daddy Ever Bought Her

noreply@blogger.com (Noelle) — Mon, 09 Jan 2012 06:24:00 +0000

Today's post is here:

Dear Emily, Love Mommy

But because I love you I'll show you today's best picture.

My heart is full of things I want to say...and one of these days maybe I'll be brave enough to try.

Thanks for coming back day after day.

It might sound pathetic, but your comments and emails really and truly brighten my sometimes quiet and mundane home-bound life.

Elimy Made Trouble's Day

noreply@blogger.com (Noelle) — Thu, 05 Jan 2012 21:54:00 +0000

My niece Samantha, who most of you know as Trouble, calls Emily 'Elimy.'

Every few days Trouble will ask me, "Does Elimy still have her tube?"

Trouble was told that as long as Elimy had her feeding tube she couldn't hold her.

(That was our excuse to let Elimy grow a little bit first.)

Elimy and I paid a visit to Grandma and whoever else was at work.

(We have a family business that keeps us all busy.)

I asked Trouble, "Do you want to hold Elimy?"

You would think she was told she was going to Disneyland or something.

The minute I took the picture Trouble said, "Noelle take Elimy. I have to tell my mom I finally got to hold her!"

I'm so grateful that Elimy is loved!

And because I can't resist...look at this one.

Progress!

noreply@blogger.com (Noelle) — Wed, 04 Jan 2012 21:52:00 +0000

Ten minutes after Jason thought Emily was asleep for the night, this is what she was doing:

The joy this little lady brings us...oh...I never knew...

Emily graduated from 24/7 oxygen to needing it only at night.

Do you know what this means???

It means that Mommy and Emily can maybe leave the house without Daddy!

We probably could have left the house without Daddy with the oxygen, but it was such a ginormous pain!

We had this plan to ask the nurse practitioner to change Emily's feeding tube so that we wouldn't have to.

The big chicken wouldn't do it.

You would think we asked her to bungee jump from a really high bridge or something.

I have a Plan B though.

My neighbor is a NICU nurse,

I'm going to offer a batch of chocolate chip cookies in exchange for one feeding tube change.

Emily doesn't have to meet with her cardiologist for two whole months!

In non-Emily news...

I told Jason earlier this week that desperate times call for desperate measures.

Desperate measures = me giving Jason the credit card and saying, "Please husband, I need a treadmill."

Jason has connections everywhere and thankfully we will be getting a really good deal.

We don't have all the space in the world and so we have to rearrange some furniture in order to fit the treadmill into our house.

One of the pieces of furniture we have to move is a futon.

Every time Jason has gone to say something about the futon he uses the word gazebo.

"So we need to load the gazebo into the truck..."

"Are you sure the gazebo will fit into your office?"

Etc. Etc.

Tell me...

How do futon and gazebo go together?

Sometimes I wonder if English is really Jason's first language.

Did any of you watch the episode of Hoarders where there were 77 billion cockroaches crawling everywhere?

Oh. My. Honk.

I'm still scratching.

Emily's Two Cents

noreply@blogger.com (Noelle) — Tue, 03 Jan 2012 20:04:00 +0000

Dear World,

I think you should know that my life is hard.

First, my daddy puts goofy things on my face:

And then there's the fact that I hate that oxygen tube in my nose.

Every time I pull it out Mommy or Daddy puts it back in.

I hear them say all the time that I don't really need it, but they have to get permission from the doctor before they will take it out.

I have an appointment with my doctor tomorrow.

My fingers are crossed.

If those two things aren't hard enough...

Daddy ALWAYS watches football.

He thinks I like it.

This is what I think of football:

My only other complaint is that people keep making me drink from a bottle.

I'm not a fan.

I think I would be if they gave me something that actually tasted good.

I heard Mommy and Daddy talking about giving me a different formula...the doctor better give them permission for that too.

The doctor doesn't think I can distinguish taste yet. Boy is she wrong!

That's all world.

Even though Mommy and Daddy drive me nuts sometimes, I still love them.

I smile at them all the time, and I usually sleep for 12 hours straight at night.

Mommy went to work today and Daddy is taking care of me.

Great.

It's a politics or football day for me.

Sigh.

As 2011 Ends

noreply@blogger.com (Noelle) — Mon, 02 Jan 2012 05:23:00 +0000

My 'create post' page has been open for two days. At least twice a day I tell Jason that I need to finish my post, and without fail as soon as I say those words, something else comes up. That something else usually has to do with Emily.

Tonight Emily is watching football with her Daddy and I'm sitting in front of my computer with a cup of hot cider. If I can convince my thoughts to focus on one topic I might actually finish this post.

Everything about the past year, both good and bad, can be summed up with the words 'your baby has a potentially life threatening heart defect.' Emily is 5 months old now and there are still days where I cry all day long because of that heart defect.

I have both hopes and fears as this new year begins, but tonight those hopes and fears are going to take a backseat. I received a phone call from my nephew Josh a few nights ago, and that phone call hasn't left my mind. My nephew had a request, a very heartfelt and tender request, and in order to tell you about that request I need to tell you a story.

Those of you who have been reading this blog from the beginning will have read this story.

Many years ago my dad fulfilled a dream he'd had since he was a boy and bought a mountain. Oh, it wasn't the entire mountain, but it was a good chunk of it. Every spare minute my dad had was spent exploring his mountain.

He built fences, he cleared roads, he planted trees, and he dreamed of the future. We spent every summer holiday at 'The Farm' as my dad had named his mountain, and we created the tradition of cutting Christmas trees every December.

When Dad reached the point in his life where he could pretend to retire he spent more time at The Farm. He spent nights there, he meditated there, he buried his beloved dog there, and he began to build there.

Dad spent three or four years building his dream barn...the barn that would serve as our temporary cabin until Dad could decide where he wanted to build our permanent cabin. From the foundation to the trusses in the roof, Dad built everything by hand, with hammer and nail. When it came time to place the trusses Dad tied himself to a window on the second floor and dangled in the air as he placed each truss.

Dad preferred to work alone, and we would drive up occasionally to check his progress. His progress eventually ended with this:

When Dad moved to Brazil for three years he told us, "Don't touch the barn. I will finish it when I get home." He and mom stored all of their important things in the barn while they were gone, and after my grandpa died and I emptied his house, I put all of his things that we wanted to keep in the barn.

Dad came home and began to finish the inside of his barn. Dad kept everything there: his tools, his tractors, his crystal collection from Brazil, his camping gear, his bow and arrow set he had in high school, and most importantly his dreams of future summers at The Farm with his grand kids.

I could go on and on about the memories my family made at The Farm...the love and laughter we have shared there over the years. But all of that ended one night a few years ago when Dad got a call in the middle of the night.

His barn was on fire. It couldn't be saved. It was most certainly arson. The firemen were doing everything they could to prevent the fire from spreading up the mountain.

The next morning, a Sunday, my entire family made the hour drive to the mountain. And as we stood there near the still smoking ashes we shed tears. Lots of tears. My niece, who was three at the time, said this, "Bad men who burn down my grandpa's farm are stupid!"

My sister-in-law summed everything up perfectly when she said, "They burned down Dad's happy place."

The person or people who burned the barn down were never caught.
And in the weeks and months afterword, as we hauled load after load of ashes down the mountain, we mourned our loss, and it wasn't just possessions we lost that day.

It's been nearly four years since the fire. Dad never rebuilt. I don't know if he ever will.
We go to The Farm once a year to cut Christmas trees.

My nephew Josh was two when his Grandpa's farm was burnt.

Three nights ago my phone rang and Josh, who is now almost six, was on the other end.

"Hi Noelle."
"Hi Joshy, what are you doing?"
"Noelle, Mommy said that I could ask you to print me some pictures of Grandpa's Farm."
"Sure Josh! I'll print them for you."
"Can you bring them to me tomorrow after lunch?"

I told him I could.

"Josh, what are you going to do with the pictures?"
"I just want to look at them. I don't like the pictures of Grandpa's Farm that are in my mind."
"What's in your mind Josh?"
"Grandpa's Farm is always burning," Josh told me.

That sweet little boy broke my heart with that phone call.

Josh's mom told me today that Josh has one of the pictures in a frame now, and carries it with him everywhere he goes.

I wonder if we realize how far reaching the consequences of our choices are.
The person who burnt Josh's grandpa's Farm will have to answer for a whole lot more than arson some day.

I don't usually make New Year's resolutions, but my conversation with my sweet little Josh has made me resolve to make sure that the only lasting impression I leave with anyone is love and kindness.

Greetings From The Household of Sick People

noreply@blogger.com (Noelle) — Fri, 30 Dec 2011 03:35:00 +0000

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.

The Best Gift Of All

noreply@blogger.com (Noelle) — Mon, 26 Dec 2011 06:14:00 +0000

God Bless Your Way

noreply@blogger.com (Noelle) — Fri, 23 Dec 2011 07:56:00 +0000

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.

Emily Might Be Teething

noreply@blogger.com (Noelle) — Wed, 21 Dec 2011 05:42:00 +0000

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.

Once In A While...

noreply@blogger.com (Noelle) — Tue, 20 Dec 2011 06:25:00 +0000

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

Our gift?

Welcome home Baby Girl.

Decisions Decisions

noreply@blogger.com (Noelle) — Mon, 19 Dec 2011 07:07:00 +0000

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.

We've Made It Official

noreply@blogger.com (Noelle) — Sun, 18 Dec 2011 06:13:00 +0000

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.

I Found Christmas Spirit!

noreply@blogger.com (Noelle) — Fri, 16 Dec 2011 23:13:00 +0000

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.

95% Of Our Day Has Been This:

noreply@blogger.com (Noelle) — Fri, 16 Dec 2011 02:10:00 +0000

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.

The Fast Track...For Once

noreply@blogger.com (Noelle) — Wed, 14 Dec 2011 22:47:00 +0000

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.