Thursday, August 30, 2012

Where is your happy place?

Once Upon A Time......
This is Becca - Noelle's sister doing a guest blog for her. She is at the hospital with sweet Emily who had surgery today.  The surgery went very well, and the doctors are pleased with her stats.  They even said they may have bought her three more years before she has to go back for her next one. (Fingers crossed!!)
 
A few years ago Noelle and I decided we were going to take a trip and celebrate our birthday at the Happiest Place on Earth!!!!  (yes we share a birthday - for details ask Noelle)  We flew to Anaheim and spent the next four days doing nothing but eating Churros, and giving ourselves motion sickness.  We wore the silly badges that said Happy Birthday for the most of the day and every employee and sometimes guest would wish us a happy birthday. Sometimes we would look at each other and wonder how they knew it was our birthday (a bit crazy - yes we were/are)  At night we would wander through the streets of Downtown Disney and window shop and enjoy the lights and atmosphere.  We had a good time just the two of us, and someday I hope to do it again. 
 
That was one of my favorite birthdays up to that point.  Now I go to Noelle's  house and watch Disney Junior with little Em, and I think perhaps she is developing a love of Disney that may rival mine someday. You should see her face when she sees Mickey walking up the hill to the clubhouse.  It is a look of pure joy; like her long lost friend is coming back for a visit.   I look forward to the day when she can experience the joy that is Disneyland with her parents (of course I will be there too)  for in my world there truly is no Happier Place on Earth than in Anaheim. 
 
And yes I did take Em a stuffed Mickey today to cheer her up while at the hospital!  After all I am the favorite aunt (and intend to maintain that position)
 

Wednesday, August 29, 2012

Hearts Joined Together


In just a few short hours we will hand our little girl off to an anesthesiologist.
I held her tonight as she drifted off to sleep and I prayed to my Heavenly Father to keep her in His care.

I'm nervous for this one... more nervous than I was for the last surgery, and that one was open heart.

Perhaps it's because we've had her longer, we've loved her longer, we've cared for her longer...and perhaps it's because of how wholly she has my heart.

I'm turning my whole world over to a doctor... oh how I hope he will take care of her.


Tuesday, August 28, 2012

Choices


I had two things I told myself I would accomplish last night:

cleaning off the kitchen table
and
going grocery shopping.

I didn't do either.
Instead,  Jason and Emily and I went to the park for a picnic and stayed until dark.




When we got home I read that a sweet little girl with the same heart defect and chromosome deletion as Emily had passed away.

I held my little lady tighter last night, and when I got up this morning I wasn't even bothered that I can't see the top of my kitchen table.



Sunday, August 26, 2012

La De La La La

I think it's safe to say I have writer's block.
Either that or life is slightly mundane.

Jason and I have both been busy with work...so busy that Em and I stayed at the office Saturday night until 8:00pm.
Thank goodness for Mickey Mouse and a bouncy toy!

Jason and I were able to go out to a movie Friday night (thanks to Becca Bee who watched Em).
We saw The Mysterious Life of Timothy Green.
The movie had a big impact on both of us, and we left the theatre still with tears in our eyes.
It reminded us of our story...of Emily's story...and we agreed, again, that we are blessed to have our little lady.

We've had some really good days with Emily!
You might think I'm silly, but in an effort not to jinx anything I'm going to hold off on some good news that I want to shout really loudly about.
Give me a week, and if the news is still good, you'll be the first to know!!!

No.
I'm not pregnant.
And yes.
Emily is still scheduled for surgery on Thursday.

Would you like proof of the fact that I am a good friend?

A friend of mine was having a terrible, horrible, rotten, no good, very bad day.
She posted about it on Facebook, and received a lot of incredibly supportive comments in return.
I tried to come up with something supportive...I really did.
Instead I went with humor.
I happen to know that one of my friend's biggest pet peeves is the misuse of the words to and too.
It drives her batty when someone spells them wrong.
I wrote a post using the word to and too, and spelled them wrong every time I used them.

The good friend part comes where I opened myself up for everyone else who has the same pet peeve to say something like 'can't that girl spell???'  I sacrificed my proper grammar to make my friend smile.
She smiled.
It was worth it.

Keep in mind, I'd be willing to do the same thing for you!

Because I just learned how to take screen shots of my text messages, I'll leave you with a message I got from Jason while I was finally, after months and months, getting my hair done.

I couldn't stop laughing.

First there was this:


and then there was this:



I keep telling him it's good for him.
Because isn't it?

Oh...and the box Jason wrote about?
It was mine once.
And now it's Emily's, and only Emily's.
Just try to put something on it that isn't her hand!





Wednesday, August 22, 2012

Surgery On The Horizon


she may be delayed in some things, but she's ahead of the game when it comes to the terrible twos!

* * * * *

When we were young ...

pause

I always refer to my childhood in the plural.  Six kids under the age of four doesn't allow for much 'me' time.

How is that possible you ask?  If you're new to this blog, I'll tell you: triplets, twins, and one more...and then one more 10 years later, and now that one more is getting married!  But that's another story.

unpause

When we were young we went to a family reunion with my dad's extended family: his cousins and their children.
It was the first time we had met most of these cousins, and we quickly bonded with some of our second cousins.
We spent the entire week introducing each other as, "these are our new, never been used cousins!"
For years after, whenever we referred to those cousins it was always "remember our new and never been used cousins?"

That's how I feel about the women I've met who have children with heart defects.
They are my new, never been used friends.
I've always been blessed with amazing friendships and I feel lucky to add these ladies into that group!

Having someone in your corner who truly gets what you've been through is an amazing blessing.

I got this text from one of my new, never been used friends:


It made me smile the rest of the night.

Speaking of heart defects...

Our little lady is having surgery on her heart a week from today.
It's not open heart, but she will be intubated, and they will be messing with her heart, and I will have to hand her off to an anesthesiologist...

I have a lot of secret hopes riding on this cardiac catheter; if any of them ever become a reality I will let you in on the secret.

Keep her in your prayers please?

when you need a nap, you need a nap




Monday, August 20, 2012

Things I Love

the sunglasses Jason just gave me...
image source 


things that make me laugh in the middle of the store


the fact that my little lady is growing more confident and explores my office


friends who post things on Facebook that make me laugh out loud first thing in the morning


Em's growing collection of elephants...Nana Helen we LOVE your addition!  Thank you!

...the sound of laughter (I have no idea how to center this...sorry)



And my husband.
Who is so so good to me.
I'm not sure what I did to deserve the good in my life, but I don't take it for granted.


Sunday, August 19, 2012

My Sister Is In For It




Conversation with my 5 year old niece: (who many of you know as Trouble)

"Noelle can I have some chocolate almonds?"

"No way. You've already had two cupcakes and if I let you have more sugar your mom will kill me."

My niece said:

"She doesn't have a gun. She doesn't have a sword. She doesn't know karate. She can't even punch. All she knows how to do is spank and that won't kill you."

I can't stop laughing.


Friday, August 17, 2012

Just A Picture


I'm not feeling very wordy today...

I'll be back next week with stories, but in the meantime, here is the most beautiful part of my day yesterday:


Have a great weekend World!

Wednesday, August 15, 2012

It's My Day

Several months ago my sister and I splurged and bought nearly front row tickets to see Wicked here in Salt Lake City.
I had to arrange it around Jason's insane travel schedule.
When we finally settled on a date that worked I told Jason to put it in his calendar on his phone, and to make it public so that the whole world knew.
I was going to have an entire day...end of story.

At 11:45 tonight Jason said "Your day starts in 15 minutes.  If Emily wakes up you have to wake me up.  You can't get out of bed.  In fact, you should give me the baby monitor."

And then he asked, "How late do you want to sleep in tomorrow?"

I'm thinking I should have scheduled myself more than just one day...

Tuesday, August 14, 2012

Lessons Of The Heart

It's been a day...an emotional one, filled with both good and bad.

The good?
One of our sweet little heart friends who has been waiting for a new heart got the call last night.
She's been in surgery since 4:00 this morning and the last update from her mom said that the heart is beating.
I've been in tears all morning...so happy and grateful for sweet little Miss K's new chance at life, and sad for the family that is mourning the loss of their little one.

This heart journey has taught me much about what it means to have empathy.

We took Em to the hospital bright and early this morning to have her echocardiogram.
The results of that echo are the bad news.

Let me say this first: Emily is one funny girl when she's on versed (a drug similar to laughing gas).
They gave her that before they placed her IV.

placing the IV

waiting for the sedation to kick in

And 6 minutes later she was out



So...I don't know how much detail I've ever given about Em's heart defect...probably not a lot because there are times the medical terminology goes right over my head.

Here's a picture of what Em's heart should look like and what it did look like when she was born:


And in addition to this, one of Emily's pulmonary arteries, the one taking blood to her left lung is really narrow.

Her main pulmonary valve (the part of the heart that says 'pulmonic stenosis') had no blood flow when she was born, meaning that neither of Emily's lungs were getting the blood they needed.

For her first week of life Emily was kept alive because of a medication they gave her, and when she was 6 days old they performed her first open heart surgery.


Dr. Kaza, Em's surgeon, placed a shunt to redirect the blood flow to Em's lungs, basically buying her enough time to grow big enough for her next surgery to be successful.

Her second open heart surgery was because of an infection she got in her incision, and in December she had her third surgery to 'repair' her heart.

The aorta was re-positioned, the hole in her heart (ventricle septal defect) was patched, the shunt was removed, the pulmonary valve was temporarily repaired, and her left pulmonary artery was ballooned open for the second time.

There.
How was that for a lot of information?
If you're still reading, you deserve a medical degree.

Today's echo showed that Emily's left pulmonary artery has narrowed significantly, limiting the blood flow to her lung.
Her pulmonary valve is leaking more than they like to see, and has caused her right ventricle (RV) to become enlarged.

Within a month we will be taking our little lady back to the hospital for a procedure called a cardiac catheter.  They will run a catheter through her leg up into her heart, and place a stent to hold her pulmonary artery open.

The next open heart surgery to do a full pulmonary valve replacement will most likely need to be within the next couple of years, rather than the five or six we were hoping for, and that will mean that the next open heart surgery after that will also be sooner than we anticipated.

It's not what we were hoping for but we'll adjust...because that's what we do.

Someone asked if it came down to it, would Emily be a candidate for a heart transplant.
From everything I've heard and researched, the answer is probably not.
Because of her heart's anatomy it would require both a heart and lung transplant, and from what I understand, they don't even do those in Utah.  We would have to take her somewhere closer to sea level, and even then, the surgery doesn't have a high success rate.

Information overload.

Our little lady has a mission here on this earth, and I know she will be given the time to fulfill that mission.  And we will continue to hope and pray that it's a long long long time.
That's all we can ask for any of us.

One last picture...taken yesterday when Em was playing peek a boo with her daddy.





Sunday, August 12, 2012

No, I Don't Know What To Do With Emily's Hair. Thanks For Asking.


Oh, you want to know where I've been?
Costa Rica.
Just a little vacation...

Or at home hanging out on the waterproof tablecloth with my little lady...

Whichever answer you think is more likely.

I almost did go to Costa Rica once.
I was seconds away from clicking the purchase button for my airline ticket.
I couldn't do it.
My parents had been gone for three years, living in Brazil, and they were coming home the day after I would have left.

I debated and debated and finally chose to stay home.
I couldn't miss my parent's homecoming.
It was the right decision.

But I still want to go to Costa Rica.

Anyone have a home there they want to loan out to a guy, a girl, and an adorable one year old?


* * *

One of our favorite things to do as a little family is take a walk on Sunday evening.
We walk through my parent's neighborhood and dream about our future.

Tonight while Emily slept in her stroller Jason and I talked about our ideal...what would happen in the best case scenario.

When our walk ended,  and while Jason put Emily in the car, I ran into the house and found Mom and Dad talking in the front room.
I sat down and said quickly, " I just want to remind you that my future depends on your future.  Make it happen!"

It doesn't matter what 'it' is...not really.
But I didn't want them to forget what I had schemed up so many months ago.

My dad looked at me skeptically and said, "You really think all of that is going to happen?"

"Dad, this is me trying to have faith.  Don't ruin it," was my reply.

My dad sighed and said, "I don't want to have faith anymore."

He wasn't implying that he was losing his faith.
Not even a little bit.

What he was saying is that he wants the thing my family has been praying for FOREVER to finally happen...he wants our faith in this one aspect to be rewarded.  

I thought about our short conversation all the way home.

It's good to know that even someone as faithful as my dad has his moments of wanting to throw his hands up in the air and direct a 'really?' heavenward.

It somehow makes me feel validated...like maybe I'm not as wimpy as I thought I was.


Thanks Dad, for reminding me that it's okay to be human.


Wednesday, August 8, 2012

I'm Campaigning For A Stomach Transplant


Thank you so much for you kind and supportive comments on my last post.
I sincerely appreciated all of them!

* * *

Emily's stomach is not behaving.
Not even a little bit.
And all of us: Daddy, Mommy, and Emily, are growing weary.

Our poor girl.
There isn't a day where she doesn't retch, gag, vomit, moan in pain while she's being fed, and often vomit again.

Sometimes both in the morning and at night.
Sometimes in the middle of the night, and sometimes in the early hours of the morning.

And it's usually not until sometime in the afternoon that she starts to act like she feels well.

We met with Em's GI doctor and her dietitian last week.
Em's okay for now with the weight she's gained, but if we maintain status quo she will start to lose weight.
The dietitian told me I needed to bump Emily's calories from 22 calories an ounce to 30 calories an ounce.
I looked at her skeptically and she said, "She's old enough.  She'll be fine."

I wasn't willing to make that big of a change all at once, and so I bumped the little lady up to 24 and she tolerated it okay.
A few days later I bumped her to 27.
It was a disaster.

She threw up all day long...and she was miserable.
She's back at 24 where she is going to stay for now.

Jason and I used to believe that Em would grow out of this phase.
Now we're just waiting for the day when she can hold her own puke bucket. 

I asked the doctor what a realistic time frame would be for Emily to be eating by mouth and she said 
"I'd say by the time she's four or five."

I might have cried.

The dietitian asked, "Why does it matter?  Why does it matter how she gets her food?"

I thought about it for a minute and said, "Because of the social pressure there is to feed her."
The dietitian rolled her eyes and said, "I know, and it makes me crazy."
"You're feeding her.  She is getting a better diet than most kids her age.  You are not failing her.  Not even a little bit."

It's easier to say than to believe.
Every day someone asks me, "So when can you start to feed her?"
Or they'll ask, "Why won't you feed her?"

And although I know it's not true, there are moments where I feel like a bad mom because I can't get my child to eat.

Em has a tooth.
It's her first one.
Do you know that I can't even get close enough to her mouth to see it?
I just happened to see it one day when she was talking to me.
It shocked me.

It's rare that she allows anyone to touch her mouth...let alone put anything in it.

The dietitian asked Em's feeding therapist who went with us to the appointment "Is is a sensory issue?"
"No," said Em's therapist.
"Is it  a fear of swallowing?" the dietitian asked.
"No" was the reply again.

"It's just Emily.  And she's a stubborn little girl.  And no matter what we do, she's not going to eat until she's ready."

I'll give you proof.

...maybe...
...if I can get the pictures to download...





20 minutes.
That's how long Em and I played with chocolate pudding.
It was highly entertaining...and our girl got pudding everywhere...
Except in her mouth.
The pill wouldn't even lick her lips.

Who knew that the heart defect would seem like a cake walk compared to the stomach/feeding issues!
(At least now that we're not facing open heart surgery for a little while.)

She's adorable though...that makes up for a crummy stomach!

Monday, August 6, 2012

In Which I Probably Share Too Much

"Noelle, you've been ornery for a really really really long time," is what my brother said to me when I sat down in his office today.
And then he ducked his head, apparently waiting for me to throw something at him, or at the very least burst into tears.
I did neither.
Instead I put my head on his desk and said, "I know.  But life has been hard for a really really really long time."
"I didn't say being ornery wasn't justified," Ben said.  "But I can tell a difference lately.  You seem happier.  You seem more like you, and I'm glad."

* * * * *

When I had reached the point where I knew I was in trouble if something didn't change, I made an appointment with my doctor.
And I went in and told him about the last year of my life...about the stress, about the fear, about all of it, and when I was done, and had answered all of his questions, and filled out his paperwork, he sat on his stool and shook his head a little bit sadly.

"Sweetheart, you didn't really have a choice.  With what I imagine is genetics from your great great aunt Tilly, and more stress that your body can handle, you didn't stand a chance against what is a pretty serious case of depression, and some PTSD thrown in for good measure."

"And without some help, your body can't correct the chemical imbalance that the circumstances of your life has created."

* * * * *

It's been a week.  He told me it would take three or four, before I noticed that the medication is helping.
I notice.
I notice every single day.
And I wish with all of my heart that I had asked for help sooner.

When I told Jason about my appointment he said, "I won't tell anyone about it."
And at first I didn't think I would either.
But why not?
Why not be honest with the fact that it's been hard and I needed help?

"It's like I've spent the last year of my life walking along the edge of disaster, and at any moment I knew I would fall off the edge, and never be able to recover," I told my brother today.
"But now that edge is farther away.  It's not right there staring me in the face."

I feel like I can breath...truly breath...for the first time.

* * * * *

I stopped at Barnes and Noble on my way home tonight.
Em was with her daddy and I had a few minutes of alone time.
Barnes and Noble is one of my favorite places to spend alone time.

I hadn't been looking at journals for very long before a girl several years younger than me turned to me and said, "Isn't this journal beautiful?"  In her hands she was holding a leather journal.
(The fact that I seemed approachable in and of itself was a miracle.  Being ornery for a 'really really really long time' makes you somewhat unapproachable.)

"It is beautiful," I responded.  "Is it $60 beautiful?"

"No, it's only $40 which seems like a really good price," she told me.
"I'll have to count my dollars and see if I can get it."
"Oh, it's just so beautiful," she said again, this time a bit whimsically.

"Do you write in a journal or do you just collect them?" I asked.

"I fill them full," she told me.

And then she smiled and walked away.
I watched her for a minute as she pulled out a bundle of cash and counted it.

As I got in line a few minutes later to check out, this girl was ahead of me.
I heard her ask the cashier if they had any coupons running.
The cashier mentioned that if she gave them her email address, they would send her a coupon for joining their email list.

"Oh good! My email is ... " and then she asked the cashier, "can you hold this for me for a few days?"
The cashier said that she could, and the girl walked away again...but only as far as the magazine rack before she stopped to pick up a magazine.

When it was my turn I saw the journal still sitting on the counter and I said to the cashier, "You might think I'm crazy, but I would like to buy her that journal."

The cashier's eyes got big and she said, "That's not crazy.  That's incredibly kind."

She put the journal in a bag and I walked up to the girl and tapped her on the shoulder.
When she turned around I smiled and handed her the journal.
"Happy writing," I said.

"WHAT?  Are you serious?  NO! I can't take this.  Please, at least let me give you the cash I have in my wallet" were all the things the girl said almost at once.

I smiled again and said, "It's okay.  You keep your money and your journal and have a great day," and then I walked out the door.

As I was leaving I heard her say to the cashier, "I really can't believe that just happened to me."

* * * * *

As I drove home I thought again about what my brother said.
"You seem more like you, and I'm glad."

Two years ago I wouldn't have thought twice about buying a stranger a journal.
Two months ago the thought of making a young girl's day wouldn't have even crossed my mind.

My brother is right.
I do seem more like me.
And I'm glad too.
I've missed me.

* * * * *




Saturday, August 4, 2012

Happy Birthday Sweet Girl


Today my girl is officially one year old.
An entire year.
I can hardly believe it.


We've come so far from this:


I'm not the same person I was a year ago.
Not even a little bit.

Emily teaches me every day what it means to love and to hope.

And this morning when she crawled on top of me and smiled down at me, my heart filled with joy and I could say, for the first time, that I would do it again...all of it...

I love you sweet girl...forever.

Happy Birthday.

Wednesday, August 1, 2012

The Birthday Party


You don't need commentary right?
At least not a lot?


THE DECORATIONS





... some tissue flowers I made myself.
My sister saw them and said, "These are cute.  Wait!  Did you make these?"
I don't think my family thinks I can be even a little bit domestic or crafty.

...and balloons.
A lot of balloons.
So many balloons there nearly wasn't room for me, Jason and the balloons in the car.


My sister Tiffany, who without a doubt is both domestic and crafty, finished the elephant blanket I started many moons ago, and made the adorable E wall hanging that I am going to put on Em's bedroom door.


THE FOOD

...was served on these...









I didn't make a single thing on that goodies table.
(And I wonder where my family gets the idea that I'm not domestic...)

I ordered everything from a bakery.

Except for the cake.
Have you ever seen anything more perfect for our little lady?

A dear friend from high school made it as a gift for Em's birthday party.
She has a blog with all of her amazing work. 

My little sister Amanda made elephant cake pops.
She was also gifted with the domestic gene.

If you happen to ask if Em got to play with her cake...
...this is how the little lady feels about food in general...




MY SISTERS' GIFT TO EM



WHAT OUR LITTLE MISS DID FOR MOST OF HER PARTY


My surrogate mother held our little miss for nearly an hour while she slept...I think they both look pretty content.




There was a lot of support...
a lot of love...

and way too many goodies left over.

Thank you to all of you who came and celebrated our baby girl!