Tuesday, January 31, 2012

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

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.


Sunday, January 29, 2012

Hands

Thursday, January 26, 2012

All Because Of The HGTV Channel


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!!!!!

Tuesday, January 24, 2012

True Love


My sweet girl knows that I'm her mommy.
There is nothing more that could begin to heal my broken heart than this.


Sunday, January 22, 2012

Questions and Answers


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.




Thursday, January 19, 2012

A Realization


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.

Tuesday, January 17, 2012

Impossible

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!



Monday, January 16, 2012

Bathing Beauty

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!

Thursday, January 12, 2012

Reality

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.



Tuesday, January 10, 2012

Sharing A Memory

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.

Sunday, January 8, 2012

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


Today's post is here:


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.

Thursday, January 5, 2012

Elimy Made Trouble's Day

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.



Wednesday, January 4, 2012

Progress!


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.


Tuesday, January 3, 2012

Emily's Two Cents

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.

Sunday, January 1, 2012

As 2011 Ends

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.