Sunday, September 30, 2012

There Were Times...


There was a time ... just this past weekend ... where Jason put a pillow up between the couch and the entertainment center to discourage Emily from crawling back there and messing with a table and a framed picture on top of it.

I was leaving to run to the grocery store and said, "Well that will work until she discovers she can just crawl over it."

Not ten minutes later I got this picture from Jason with the caption: "You were right."
I was in the party decoration isle when I laughed right out loud.


* * * * *

There was another time when Jason asked where I wanted to go to dinner on my birthday.
"Who will watch Emily?" I asked.
"Becca."
"We can't.  It's Becca's birthday too," I reminded him, "and it wouldn't be right to ask her to babysit Emily."

Instead, I made dinner, invited some friends over, and threw Becca a surprise birthday party.
"I think this is the first time I've ever had a birthday party," Becca said.
It was a good night.

The night after our birthday Becca did babysit Emily, so that Jason and I could go and ride the ski lift at Sundance Ski Resort, and enjoy the full moon.


 * * * * *

There was another time again where I took leave of every ounce of good sense I had.
And it happened at Hallmark.
"Look at this puzzle," Becca said.  "We should put it together, glue it, frame it, and hang it in the seed room at work." 
I encouraged the idea and said, "I think my kitchen table is big enough for it."

That was my first mistake.

It was after two days of searching for border pieces that don't really look like border pieces that I remembered a certain fact about Becca.

She doesn't do puzzles.
Ever.
Until there are only 10 or 15 pieces left, and then she comes along, all nonchalant, and puts the pieces in and says, "Look!  We did such a great job!"


Becca is bitter because one night I took her phone and played Song Pop.
I was playing myself, and I just so happened to guess every song wrong on Becca's turn, ensuring my win.
When she brings that up again I'm going to look at her and say "Two words."
"Seed puzzle."

* * * * *

There was a time for my birthday that Jason got me gear.

...and a beautiful elephant necklace...

* * * * *

And finally...

...there was a time when Emily's gut didn't hate her...
but then I woke up.

Thursday, September 27, 2012

Happy Birthday Noelle!!

My wife has asked that I write her blog for her birthday. Although I'm hesitant, because I know how much you look forward to reading what she has to say (and that I don't have the same writing ability), I told her that I would do it.

Because this is more public than I would like, to really share how I feel, I will say that I am very grateful  to be married to Noelle. She is an amazing mother and wife, and I am one incredibly lucky guy to be married to her.

I would also say that we haven't been without our challenges. There have been circumstances in our marriage that have really tested both of us, which have resulted in difficulty and even heartache. But we have always worked through these issues and I know we are stronger for going down these bumpy roads.

As many of you who have followed Noelle's blog, you know that having a baby with heart issues makes every other challenge even that much more difficult. Noelle has put on a brave face, but there's no doubt it's been hard on us both emotionally, especially for Noelle.

With that I want to wish her a happy birthday simply because she deserves it more than anyone I've ever known. She has been through so much yet has made it through one of the most difficult years of her life. I can easily say that I'm more in love with her now that I've ever been.

I love you...


Tuesday, September 25, 2012

Miracle


Remember this little guy?


He's been fighting to live the last few days.
He was moved back to the ICU two days ago because of a heart attack, and he's been going downhill pretty quickly.

Tonight his mom posted.

Matthew has a heart; transplant will be sometime within the next few hours.
Miracles happen every day and for that I'm grateful.

Please pray for the donor family...I can't even imagine their heartache.

Watch Out Great - Grandma, I'm Going To Race You!

And in other news...
Emily has joined the ranks of her great-grandparents, and she couldn't be happier about it.
We're working on balance and confidence.
I don't know of another person who looks as cute with a walker.







"nh hhhhnnnnnnnbbjb vvvn" , Love Emily

Allow me to translate: "Dear Mommy, if you don't baby proof your cupboards, I'll continue to do things like this.  Love, Emily"



It's my birthday on Friday.  Would it be totally shameless of me to post a picture of what I want?
Actually, I'm not sure it would do any good because I'm pretty sure Jason got me something along the lines of outdoor gear.
He has a one track mind.

I'll show you want I want anyway - because a girl can dream!







                             
Okay...this is enough out of me.
Be prepared to discuss something of great importance tomorrow!

Sunday, September 23, 2012

One Foot in Front of the Other


Our girl is miserable, and we aren't sure why.
She's been miserable for over a week.
I think her little tummy is my #1 enemy.

I was talking to my mom about it tonight and my mom said, "Listen to your heart.  You will know what you need to do for Emily."

My problem?
I'm too exhausted to hear the answer.

We have 17 different appointments in the next 10 days; here's hoping someone has an answer. 

(I might be exaggerating just a little bit about 17...)


This little rocking chair sat in my Grandma's play room my entire life.
I pulled it out of my closet the other day and it was love at first sight.

My girl fills my heart.

Thursday, September 20, 2012

Neighborly Love


Would it make you jealous to know that I spend all of my free time helping my mom bottle fruit?
It shouldn't.
Not really.

Tonight was our last night of pears.
Finally.
My sister and I are not fans of bottling pears.
The juice drips down your arms, and everything is a sticky mess.

When we finished with the pears my mom asked, "Do you want to help me finish these tomatoes?"
We'd never done tomatoes before and so we willingly agreed to help her.

As we were peeling, slicing, and putting the tomatoes into jars my sister asked my mom what she was going to do with the tomatoes.

"Are you going to make that noodle and tomato dish that we don't like?"
My mom laughed and said, "Probably, because I love it!"

I piped up and said, "Mom, you don't need to give me any of these.  I'm just helping you out of the kindness of my heart."
(I'm not even a little fan of bottled tomatoes.)


I asked my mom if the tomatoes were from her garden and she informed me that her neighbor gave them to her.

When I got home tonight this is the thank you note I put in the mail for the neighbor:


Kind of makes all of you want to be my neighbor doesn't it?


Monday, September 17, 2012

We Matter to Him

Last weekend, on somewhat of a whim, I did my hair, got dressed up, and attended of all things, a church meeting, with my mom and dad, and some of my siblings.
It wasn't a typical every Sunday kind of meeting, but a special one, held just for adults on a night other than Sunday.
My sister shared her Smarties, and we settled in for two hours of spiritual enlightenment...at least that was our hope.

A man stood to speak and his voice drew me in.
He wasn't an eloquent speaker.
He didn't quote many scriptures.
He didn't recite his talk from a page full of words.
He stood at the pulpit and humbly spoke from his heart.

He told of a time in elementary school when he was in the special ed class for reading and math, and of the time his teacher told his mom that he would never be college material.
He told of another time, a few years later, when he took one class he knew he would be good in, and when he saw his final grade it was a C.
He told of his first day of high school, when he was seated waiting for a class to begin.  Two girls next to him were passing notes, written in letters big enough that he could read them.

"What do you think of the boy in row four, seat four?"

He counted and realized that was his seat.

The note made its way back to the sender and this is what it said, "He's alright.  Nothing special."

The man got emotional at this point and stopped speaking for a minute.

"The world will label us.  People will do everything they can to mold us into the label they've assigned to us."

"Don't let them," he said.

He said this:

"My teachers never knew that I would go to college.  That I would have a successful career.  They never knew that I would become best friends with _________, and that together we would spend two years as missionaries in South America.  Those girls didn't know that I would marry an amazing woman, that we would raise good children who love God, that I would ... "

...he continued for a few more minutes and then said, "They never knew that I was more than their labels.  They never knew that in the sight of God the worth of my soul is great."

* * * * *

My heart has come a long way in the past year.
I have healed; I have healing yet to do, but I am so much better than I was.
The pain doesn't hurt as much; and the hard days are much fewer than they've been.

But if I were to open up one of the corners of my heart, you would see a corner that hasn't healed...a corner that still hurts far more than I want it to.

And if there is one thing I still cry about, it's this corner.

It's hard to explain and in my attempt to try, I hope you won't think less of me...
...it's the love I have for Emily...the dreams I have had for her since the day we were told 'it's a girl'...the hope I have for her life...
It's all of this that has made this corner of my heart so fragile.

My beautiful girl...my incredibly brave and strong little girl...she's been labeled her entire life.
In the medical world she has never been Emily first.
She is a heart defect first, DiGeorge Syndrome second, and Emily, always last.

When the hospital calls to schedule a procedure I always answer the same questions:

"...yes, she has Tetrology of Fallot."
"...yes, she has DiGeorge Syndrome."
"...yes, she's had three open heart surgeries, one cardiac catheter, and two non-heart related surgeries."
"...yes, she was hospitalized for three months."

and on and on and on

And while I know it's necessary and I know why they're asking the questions, I want to yell, "Her name is Emily!  And she loves her elephant binky, Mickey Mouse, and her Daddy, in that order."

I want to tell Emily's doctors that she is more than what their textbooks tell them she is because of her syndrome.
I want to tell her therapists to stop focusing on what she isn't doing, and for one day just focus on what she is doing.
I want to tell them that she's alive, she's healthy, she's happy, she's a miracle, and that she's so much more than 'developmentally delayed.'

And on occasion, I want to remind some of those who are closest to us, that Emily is more than the limitations she was born with...she's more than a syndrome, or a heart defect.

It breaks my heart over and over again that my incredibly perfect little girl will spend her entire life fighting against the labels she was given at birth.

* * * * *

"...the worth of souls is great in the sight of God."

As I sat, with tears pouring down my cheeks, listening to a man I didn't know tell me these words, my heart felt peace.
And I came away from that meeting determined to spend the rest of my life teaching my little girl that the only label that matters is the one that says that she is a daughter of God.
And that to Him...and to her Mommy and Daddy...and to those that love her most, she is perfect.



Sunday, September 16, 2012

Short and Sweet


Instead of telling you how sick I've been and how long I slept today, I'm going to show you pictures of my handsome husband, in our beautiful mountains.

And I'm going to thank my handsome husband for taking such good care of both of his girls.




Thursday, September 13, 2012

If I Have To Live It...

...you get to read about it.  Lucky you!

This morning early, before even the birds were awake, Emily woke up retching and throwing up.
I went in to make sure she was okay, and then when it was loud enough to wake Jason up, he came in too.
We changed her pajamas and her bedding, and after she had settled down I rocked her back to sleep.

Jason and I went back to bed too, and a short two hours later Em woke up again, retching and throwing up.
As Jason was changing her pajamas and I was changing her bedding he looked at me with tired eyes and said, "didn't we just do this?"

I didn't tell you this, but last week we met with a geneticist who evaluated Emily.
We've had physicians Emily's entire life who have said to us, "oh the reason she does that is because she has a chromosome deletion.  We can't help you."
The geneticist, who specializes in Em's particular deletion told us, without any hesitation, that Emily doesn't throw up because of her syndrome.
"They are not related.  I can guarantee it," he said.
"Take that back to your GI doctor and tell her you need a plan B."

Our GI doctor, while a really nice lady, isn't concerned with Emily's throwing up.
Not even a little bit.
And it's this routine that we've been living for the last almost 10 months that finally pushed me out of my comfort zone, and convinced me to do something more.
Today I made an appointment with another GI doctor in the same clinic, who comes highly recommended.
My sole purpose is to get a second opinion.
And as much as I like our current GI doctor, if this new doctor shows even a shred of sympathy towards what we've been dealing with, I will make the switch and not look back.

I did something else too.
I called and made an appointment with a new feeding specialist, one who also comes highly recommended.
I've hesitated for fear of hurting our current feeding therapist's feelings.
But again, we've been seeing her for 9 months and have seen Emily only getting worse when it comes to wanting to eat.
Although, she let Jason put a slice of a pickle in her mouth the other day.
The face she pulled was classic.

Making those calls rejuvenated me for a few minutes.
To be honest, I'm past the point where I hope that Emily will some day stop throwing up, but if there is even a glimmer of a shot that someone new can help her, I'll take that chance.

Remember this tablecloth?


I finally gave in and threw it away last night.
It was beyond saturated with the smell of formula, even though we scrubbed it every day.
I went to the store last night to find a new one and in the whole of Target I found one.
One:


Halloween is not my favorite holiday; it never has been.
And I was disturbed at this being my only option.
But when I got it home I realized that it may be the perfect match for the job it will perform.  (To catch throw up and save my carpet from ruin.)
I'll keep it until Thanksgiving, when perhaps I can find a new plastic tablecloth...and then Christmas...and then Valentine's...
You have to look for the silver lining people, even in vomit.

One more thing:
After spending over an hour with the geneticist he said to us, "I feel really confident about Emily's future as far as her chromosome deletion goes.  She has such a good energy about her, and she's going to be okay."
Where I'm concerned, that makes it her best doctor's appointment this year!





Wednesday, September 12, 2012

It's Me, Emily!


Hi World!

Mommy says she's plum worn out (Mommy talks funny) and that I could have a turn at writing a blog post!
I have so many things to tell you!

First I want to say thank you to a couple of friends of mine.

Dear Claudia, I LOVE my new elephant friend that you sent me!
Mommy steals it from me sometimes and uses it as a pillow.
I love getting packages in the mail that are just for me, and that one made my day!

And Jamie and Rachel...thank you for my jammies!
Mommy let me wear them for a little while.
They are still too big, but they are so cozy and I love them!

World, we had a busy weekend!

Saturday morning Daddy and Mommy woke me up two hours earlier than normal to take me to something called a Heart Walk.
It was a morning to celebrate all of my friends who were born with broken hearts.

I got to walk with my best friend Shiloh...she and I spent a lot of time together in the hospital.
Shiloh learned how to eat before I did, and her mommy got to take her feeding tube out.
I'm kind of jealous...but not jealous enough yet to do anything about it.


Shiloh's mommy thinks it's funny that I have an elephant hanging from my mouth, and Mommy thinks it's funny that Shiloh and I are both scowling.

After our Heart Walk we went to see my cousin get baptized.
My cousin loves me.
While he was holding me he said, "I want to marry her someday!"
And a little bit later he said, "I wonder what the inside of her dreams look like."


I got to spend some time with my great grandma Audrey.
Mommy says great grandma is one of the wittiest people she knows.


Mommy says I make her crazy because I never smile for pictures.
World, Mommy says you are going to think I'm the scowliest baby on the planet.
It's not true.
I smile and laugh all the time.

Mommy and Daddy and I stayed in a hotel Saturday night.
We spent all afternoon with Daddy's family and then went to the hotel.
It was a lot of fun!
Except that Mommy got really sick, and threw up in the bushes.
I told her she could use my puke bucket, but she couldn't wait until we got to the hotel room.
Those poor bushes.

While Mommy died I played on the bed with Daddy.
I love my daddy!

Mommy told Daddy that she has even more empathy for my daily throw up episode, now that she spent a night doing the same thing.
Poor Mommy.
Poor me.

Actually poor Mommy the most, because Sunday morning when Mommy was sitting on the floor, Daddy picked me up and I threw up all over Mommy's head.
World?  Mommy says it's not nice to laugh.

Sunday we spent even more time with Daddy's family and then went and spent the evening with Mommy's family.



Mommy says if any of you are photoshop experts and want to steal these pictures and take out the silly plug she would be okay with that!

One of my favorite things about my grandpa is that he sings to us on Sunday nights.
This time he sat by me and sang me my very own song.
I loved it!



I have silly cousins and I love them a lot!
They love me too and that makes me so happy!


Well World, Mommy says it's almost time for me to eat breakfast.
I hope that all of you have a lovely day!
World, Mommy says that you are a big part of my life, even if I don't know you.
If that's true, and I'm sure it is, because Mommy doesn't lie, then I love you all!!!
And I'm glad you're mine!


Monday, September 10, 2012

What Would You Do?

Can I tell you a story?
Now that it's in the past tense, I think I can get away with telling it, without getting in too much trouble.

Several years ago my sister went to the doctor thinking she had appendicitis.
She left the doctor's office with these words ringing in her ears, "you have a tumor growing on your ovary.  We won't know for sure until next week what we're dealing with, but you may only have two months left to live."

My sister was honest to goodness okay with the thought of dying.
I was not okay with it.
Not even a little bit.

The following week they removed the tumor, which was the size of a basketball, and after biopsies were sent clear back to Boston for testing, they came back and told my sister she had borderline cancer.  The tumor had been filled with cancer, but as far as they could tell it hadn't spread outside of the tumor.  Their course of action was just simply to do monthly exams and blood work.

Had the tumor gone too much longer, it would have burst and sent cancer throughout her entire body.

A few years later, in a routine follow-up appointment, the doctor discovered another tumor: this one the size of a baseball.

The surgeon who removed the tumor came out to talk to me in the waiting room after he finished the surgery.
Knowing what the last tumor had looked like, the surgeon had called in another specialist to assist with the surgery.  He wasn't taking any chances with Becca's life.

"We debated for 20 minutes on what to do.  We were this close to doing a complete hysterectomy.  But in the end I knew that if she were my daughter I would want her to have a chance to have children.  I left one third of one ovary, and when she's ready to have kids, I will do everything I can to help her."

Becca has never had another problem until recently.
She had some concerns and called to make an appointment with her doctor.
He didn't have openings for several weeks, and so Bec made an appointment with his nurse practitioner.

After an exam and a cervical biopsy the nurse practitioner said to Becca, "you're either fine or you have cervical cancer.  We won't know until we get the lab results back.  I will call you as soon as I have the results."

Becca called me and said, "do you want the good news or the bad news?"

Becca was 100% certain she didn't have cancer.  (Remember that she's the girl who had no problem with the possibility of death.)
I told her I wanted the results before I could be certain.

Every day I asked Becca, "have you heard back about your test results?"
And every day her answer was no.

FOR THREE WEEKS.

Who does that?
Who tells their patient that they possibly have cervical cancer and then never calls them back?

Bec called the office.
She left messages.
She asked for the nurses to call her back.
She left a message for the office manager.
She left a message for the nurse practitioner.

THREE WEEKS and they didn't call her back.

Becca told me more than once, "if I were dying I'm sure they would have called.  I'm fine.  Don't worry."

I don't care if you're as healthy as a horse.
If someone tells you that cancer is a possibility, especially when you've already been through this twice,  they better darn well call you back...no matter what.

Finally, Becca did hear back from a nurse...not the nurse practitioner.
She was sitting in my office when she got the call.
I had been coaching her on what to say.
She didn't say any of it.
Instead she thanked the nurse for calling her back and hung up the phone.
Before I could say anything Becca said, "that nurse doesn't care one way or the other about what I think Noelle; it wouldn't have done any good to say anything to her."

"Oh, and I don't have cancer.  My tests came back clean."

I'm not sure if you can tell, but I still get a tad fired up just thinking about it.

The moral of this story?
I should be more like my sister.  She's nicer than I am.








Friday, September 7, 2012

Yes, I'm That Mom

Yes, I do deserve the Mother of the Year award.  Thank you for nominating me!
Oh my honk.  Let me tell you why I don't actually deserve such an award.

Emily gets 135 ccs of formula every three hours.
During one of her feeds yesterday the formula ran out at 121 ccs.
It's not my favorite thing when the formula runs out because it's a chore to get the tube ready to hook her up again.
I knew being 14 ccs short on one feed wasn't going to hurt her, so I turned the pump off.

When it came time for her next feed we were at my mom's house. (It's peach season and my sister let me know that if I wanted bottled peaches I better help with the process.)

I turned the pump on, added formula, ran the formula through the tube to get any air out of it, and then hooked Emily up.  25 minutes later when I knew her feed was finished, I unhooked her and set her free to hang out with Grandpa.
They watched football.


It was sometime last night, around 11pm, that I realized what I had done.
Turning the pump off doesn't automatically reset the counter...the counter that tells you how many ccs have been pumped during that feed.
If you run out of milk at 121 ccs, and don't reset the counter, the next time you feed your child the pump will go for 14 ccs and then tell you the feed is done.

Awesome.

If you live in la la land, like I do apparently, you won't know that your child didn't get dinner until she's already in bed for the night, getting her post dinner feed.

Sigh.



Wednesday, September 5, 2012

It Takes All Kinds

I made a phone call this afternoon to a customer who has yet to make a payment this year, and his first purchase was in May.
I am patient and understanding to a point, but this particular customer goes way past that point every time he does business with us.
In fact, before today, the last time we spoke was two years ago when he let me have it for charging him a finance charge on a balance that was over 6 months late.
I'm not his biggest fan.

Before I called him I gave the guys in the office the chance to make the call.
"If I call, I can't guarantee that I will be nice," I warned.
I know, Nice Matters, but not always, especially when you're in charge of collections.
And as much as it pains me to admit, there is a serious lack of gender equality in my line of work.
BUT...that's another post for another day.
The guys declined my offer and so I made the call.
This is how it went:

"Hey _______ (if nice didn't ever matter, I would put his business name here) this is Noelle.  I'm just calling to see when I can expect a payment."

"Is my balance past due?"

"Yes, since May.  Do you get the invoices and statements I email to you regularly?" (Because on the chance he hadn't gotten my emails, I would be all about patience and understanding, even if I don't like the guy.)

"Yes I get them, but I don't ever print them out.  I don't pay a bill unless I get a hard copy of the invoice in the mail."

"When I set you up on email billing at the beginning of the year I asked if you wanted hard copies and you never responded, which told me you didn't need them."

"I won't pay the bill unless you send the hard copies to me."

I thanked him and hung up the phone before the tone of my voice betrayed what I was thinking.

I did however send him a note with his invoices:

"Can you clarify something for me?  You made the purchases.  You signed every invoice personally.  You took a copy of every invoice with you the day you left our store.  You readily admit you get my emails...the emails I send every three weeks informing you once again that your balance is past due, and if there is a problem, will you please call me.  You know you owe me for the invoices.  And yet since May you haven't contacted me at all, even once.  What am I missing?"

I left work after that, but on the way out I informed my brother that there was a possibility we would lose this guy's business again.  (He stopped doing business with us the last time I had the nerve to charge him a finance charge.)

Good riddance.

I have far too many of those kinds of encounters, and they leave me feeling somewhat cynical about the human race.

Tomorrow's agenda is emailing another customer who owes me money too...and has done all season long.  The difference here?  We're Facebook friends and I happen to know how many vacations he's been on this year.  At the risk of being unfriended by him, I'm going to bring that little point up.

Wait...there's more.

Another customer informed me today that I'm not living up to what God expects of me because I haven't yet considered having another baby.
He was serious.

It's amazing I haven't gone postal.

WAIT!  There's more again!

But this more makes me feel a small amount of vindication.

Once several years ago I had yet another customer who owed me money.  (And trust me, my cynicism would make every person who walked through our doors pay with cash, but sadly my brother and cousin have never reached that level of cynicism.)

He gave me an amazing song and dance.

"I'm going through an ugly divorce and all of my assets are tied up."
"I will pay you as soon as I can."

months later:

"My wife is dragging this divorce out.  I promise I will pay you."

a year later: (after many phone calls in between)

"We're getting closer.  Can you do this and this and this and this for my lawyer?"

a year later:

"We're sorry but the number you have called has been disconnected."

a year later:

Our attorney informs us this man is not to be found anywhere...he's disappeared out of thin air.

a year later:  (which was just last week)

As I was driving home from work I pulled up to a red light.  A big white truck pulled out of a parking lot next to where I was waiting for the light, and I looked up at the driver.  It was the man who had disappeared out of thin air.
He didn't see me.
He drove past me and got stuck at the same red light, but only temporarily as he was turning right.
I grabbed a piece of paper and a pen and finished writing down the last of his license plate number as he pulled away.

I called my brother and asked, "Remember ________?"  He did.
"Would a license plate number help?"
"Seriously?" my brother asked.

My brother called in a favor from a friend who is a detective, and within just a day had a current address for the guy who owes us a bunch of money.

As of yesterday, he had been served papers from our lawyer.

Vindication.

And the moral of this very long story is this:

I should have become a librarian.

* * *

my daughter's preferred seat










Tuesday, September 4, 2012

Nothing Quite Like Family


Some of you might recall that I have a big family:


These little ladies were born after the family picture was taken:


When we're all together chaos abounds!

This past Sunday the small group got together for dinner.
The small group consisted of my mom and dad, two sisters, one fiance, Jason, Em, and me.

While we were visiting after dinner my brother, who lives across the street, came over with his family to join the party.
A little while later my other brother and his family, who were out for a walk, also stopped in.

The house was already full at this point, but when my sister looked out the window and saw another missing sister pull up in her car she said, "ahhh, now we're almost complete."

Except that this sister, Heather, came without her family.
And when she burst through the front door she went straight for the bathroom.

She came out of the bathroom with a sheepish smile on her face and explained, "there was a line at my house.  I didn't want to wait.  My kids don't even know I'm gone.  I can't stay."
And as quickly as she came she was gone again.

I still laugh about it.

* * *
Do you remember when I hinted at some good news I didn't want to jinx?
Well...
It got jinxed anyway.

Our little lady went an entire 10 days without throwing up.
TEN!
And it was heaven.
It was bliss.
It was less laundry!
But then she had her cardiac catheter, and the day after, she started throwing up again.

Sigh.

Her cute pony tail makes up for the fact that she beat me at my own game today.
I didn't get her dressed until after she threw up.
Just to spite me though, she threw up a second time too...all over me, and her outfit.

Man I love this girl!




Saturday, September 1, 2012

Home Sweet Home

In our defense (of not posting for a few days) spending time in the hospital takes it out of us girls!
(And of course by us girls I mean Emily and me.)

We've just been sleepy, and then some.
Yesterday I took a two and a half hour nap.  I was dead to the world.  And even with that nap,  last night I still slept right through the loudest thunderstorm in recent history.  (Or so say my sisters.)

Emily is doing well...really well.
She's pink again; I didn't realize that she wasn't pink until I saw her after her surgery.

As the doctor was showing us the video he took of the procedure Jason looked at me and said, "we should get a copy of this for your blog."

I don't have video images, but I do have this to show you:



The RPA (right pulmonary artery) is the size it should be.
The LPA (left ... ) clearly isn't.
'Severe stenosis' is what the doctor called it.

(The wires are what are holding her sternum together.)

The LPA is now being held open with a stent, and should take a lot of pressure off of the right side of her heart, and allow for better blood flow throughout her whole body.

This time around Emily was old enough to realize that her parent's left her with strangers who hurt her.
From the moment she came out of anesthesia until she finally fell sound asleep at 11:00pm Friday night, we could not put her down.
Even just to change her diaper, she cried the entire time, until we were holding her again.

Now that she's home, and in her own surroundings, she's back to being her happy self.

When Em was in the hospital for her first three months, I came home most nights feeling like she belonged to the hospital, and Jason and I were just guests who were allowed to hold her once in a while.
It was an incredibly frustrating feeling.

This time I was the mom, and the nurses deferred to me for Emily's care.
As we talked last night, I told Jason how good that was for my heart...to finally feel like I was allowed to be the mom.

I have an idea.
Let's keep Em out of the hospital now for at least a few years.
What do you think?