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Here is the last two weeks at the hospital and the first two weeks at home!

I needed this today!

I was feeling a little, well, blah, today. I've been so busy I don't think I am really doing much with my talents (in fact I can't remember what they were!) and I was starting to feel like a bit of a failure in just about everything; I have the opposite of Midas' touch! Like maybe my mediocure contribution to this world doesn't really make much of a difference. Well I stumbled upon this link to Mormon Messages which can be found in my blog list and I watched this short video. I now feel inspired and refreshed to jump back into my fabulous life with my sweet family with new determination. And since I still don't have much time for hobbies currently I have decided I can CREATE myself--to be the person I want to be. And I can mean something to the four most important people in my life...and for me that is enough. To quote the famous little engine..."I think I can, I think I can, I think I can!"

http://www.youtube.com/watch?v=RhLlnq5yY7k

Yeah, I'm finally home!

Well, after 106 days in the hospital I finally get to come home to my family. I was so excited that I didn't sleep (the whole night before!) but I made up for it on the ride home. Dad and mom were a little nervous I think, but not me. I've already settled in and am pretty comfy and getting used to our house. It sure is fun to spend time with my sisters, Jocelyn and Aimee. They are so busy all the time and I love to watch them. Unfortunately I didn't get to stay away from the hospital for even 24 hours because my feeding tube fell out and we had to drive all the way back to Primary's. I was afraid they would make me stay there again; so I cried the whole way there and back. The procedure was ok, nothing I can't handle, but you won't believe this...right after we had gotten home and we were getting out of the van, the tube fell out AGAIN!!! Mom said a bad word and had to apologize to everyone and dad was pretty frustrated too. He spent a few hours trying to schedule another placement for me, this time at Mckay because I was absolutely not going to ride to Salt Lake again. So we went and the mean nurse strapped my body down way too tight but that's all in the past, because now I have my tube, I get to eat again and have all my meds (my pain ones are my favorite), and mom and dad are watching me like a hawk. Well we have more pictures to post from the last few days, but not tonight; it's storytime with my family and I am not going to miss it. Thanks everyone for praying for me...I love you

Sometimes the only way I can express my feelings is through writing. I'm not very good at it but I thought I'd share two of the poems I've written recently while at the hospital. The first was during a time when Ben was really sick and the second was around midnight last night.

Ben--
I see you lying still
Seeing the world from a distance
People moving by so quickly, it's hard
To understand what it all means,
Who they are,
Why you are here.

The life we'd dreamt of for you
And the reality of this disease are
not the same.
We wondered at first.
Why you?
We didn't understand.

But just like you spend your days watching,
Learning with patience.
Enduring, breathing--
We spend ours watching,
Waiting with anticipation.
Hoping, Praying.

And each day you grow, our hearts
Sing.



To Our Donor Family,

What can I say, the words just won't come,
What you've given our child we could never have done.
We'd worried, we'd hoped, we'd waited. We'd cried.
We'd prayed, but no matter what our hands were tied.
We needed a miracle to save our son's life,
We needed pure love and ultimate sacrifice.

When the call came that morning we felt emotions in wide range.
For here was our hope, his chance finally came.
But also we felt amidst all the joy,
Immense grief and sorrow, someone had lost their little girl or boy.
How could we feel happy, how dare we to hope,
How could this family even begin to cope?

I don't know the answers, I don't know the "why's",
I don't know why some live, and some have to die.

But I do know the gift, the priceless, selfless gift,
I'll spend my whole life trying to live up to it.
For these years with my son I'll do the best that I can
To teach him compassion and to serve his fellow man.
And that way don't feel like your little one's gone
Your child's heart is still beating, it's still going strong!
I'll take care of that heart as long as I live,
And I'll never forget the gift that you've given.

Make a Smilebox slideshow

Sorry it was so long, thanks for watching. Ü

A Mended Heart is a Special Heart

So we are all excited about kicking off National Congenital Heart Defects Awareness Week! Here are some fast facts about CHD--

-Congenital Heart Defects are the most common birth defect and the leading cause of death from birth defects during the first year of life.
-About 8 in every 1,000 children are born with at least one heart defect, that's about 40,000 children every year!
-While research is ongoing, there are 35 heart defects that have been identified.
-There are over one million Americans alive with Congenital Heart Defects today.

While these serious heart defects affect the lives of so many each year, there is unfortunately, a lack of funding for research of surgical procedures, treatment options and medications that could save these children's lives.

Here is where YOU can help:

-Increase awareness of CHD and become an advocate in your community
-Donate and encourage others to donate to research hospitals and non-profit organizations that support CHD
-Increase awareness of the miracle of organ donation, become a proud organ donor yourself and encourage others to do so as well (There are more than 40,000 Americans on the Heart Transplant Waiting List every year and only a little more than 2,225 recieve a donor organ. This is largely due to lack of education and awareness.)
-Support your local children's hospital and the families affected by CHD in any way you can!

Count our many blessings!

Ben came out of surgery around midnight last night. It was the longest day in my life. But he is doing really well! The dr said his new heart is pumping "hyperdynamically" so it is practically jumping in his chest. Another surgeon said this heart must have been a "God-send" because when they removed Ben's heart they saw it was in really bad shape. And when they put in the new one, "everything fit together perfectly" like it was always meant to be in him. Having a heart transplant is a really big deal and there will still be struggles down the road, but like Dr. Hawkins said, "he has a normal heart now", there is no disease in it and it is working great. We are exhausted but have to thank all that have been praying for Ben. We know that the Lord has blessed him! The recovery should be much quicker; the docs will try to extubate him this weekend!!!

A New Heart!!!

So miraculously, today we found out there is a heart for Ben!!! Oh my gosh, we can't believe it. The whole day has been a whirlwind rollercoaster but just a few minutes ago we were told the first inscision was made and the new heart is on its way here. I can't believe it! I am shaking with joy and excitement and grief for the family who lost their little one so that mine could live. Why the Lord has chosen to bless our family I'll never know, but I believe Cody and I will spend the rest of our lives trying to repay Him. Ben's eyes were wide open as we walked the long walk to surgery. I tried to tell him what is going to happen and that soon he will be feeling so much better. I love him so much and just can't believe there is a heart for him and so soon! Two days on the transplant list is unheard of. Heavenly Father sure has been watching out for him! More info to come....YEAH!!!!

So three wonderful things have happened in the last two days. Just this morning my mom brought Jocey and Aimee up to the hospital for a couple hours so I could see them. It was so much fun playing with them in the playroom here at the hospital. Also they had packed a yummy picnic lunch for us all to enjoy. It was so nice to be with them. Last night Cody came up after work (he usually does during his work week) and he stayed in Ben's room in the hospital with me. I really loved being with him too and had really been missing him a lot. And now the big news...As of yesterday morning Ben is officially on the waiting list for a heart transplant!!! Yeah!!! So now we wait...

Positive Thinking Goes a Long Way...

So I thought I would take a minute to post some of the little sayings that I like reading everyday. There's more than just these, but here are a few...

"Faith (overcomes) fear. Hope (overcomes) despair... (Hope) is believing and expecting that our prayers will be answered. It is manifest in confidence, optimism, enthusiasm, and patient perseverance." Pres. Uchtdorf

"Everything is okay in the end. If it's not okay, it's not the end." the Chaplain at Primary's said this to us.

Finally there is a story that the social worker from the Heart Transplant Team gave to us. It was written by Emily Perl Kingsley who is the mom of a baby that has down-syndrome...
"I am often aked to describe the experience of raising a child with a disability--to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack you bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all saying what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland."

I love that, because even though Ben's illness wasn't necessarily what we'd hoped for, we are blessed through it, just like all things in life. We are blessed to have him in our family.

P.S. So we finished all on our end to list Ben for a Heart Transplant and yeah he qualifies as a candidate. Now we are just waiting for approval from our insurance (crazy that that holds you up isn't it) then we can place him on the waiting list. He had a cath to his heart on Thursday and they made an emergency ballooning of his aortic valve which was found to be much worse than we'd thought. It was super high risky, but we didn't have a choice because it appeared that he was getting so much worse so quickly, the doc's felt we had to do something. He will have another echo tomorrow so we should know if it has helped his heart function at all.