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.

Our sweet Benny is terribly sick. The cardiologists think that maybe his little heart is finally giving up. He has fought so hard through more than three weeks with horrible infections, first in his pic and art lines and then about two weeks ago we found a mysterious lump just below his jaw-line that was the size of an apricot pit. He has been on four rediculously strong antibiotics (two of which are so strong and almost dangerous to use that only the Infectious Disease Specialists Team has authority to order them!) Earlier this week he was beginning to recover, and thankfully he hadn't ever (no matter how scary close he came) had to be reintubated. But Friday night and Saturday morning his heart hit it's limit. He was exhausted. His coloring was extremely grey and modled, his heart rate and blood pressure were terrible, and his lungs were really, really struggling--so back in went the breathing tube, as well as a tube that drains fluids from his tummy because he's been throwing up so much. His chest x-rays show lots of edema in his lungs as well as plural effusions and his heart is just too tired to pump it out without the ventilator. Then the cardiologists ordered another echo. His last one had been on the 19th and showed his EF or the function in his left ventrical (left pumping chamber) was down to 49. 65 is normal and Ben's had been 64 shortly after he got his new mitral valve. But it decreased so much that he was put back on IV medicines to help the ventrical squeeze better. The echo was repeated on the 24th to see if the meds were helping but the EF was now only 20! That is beyond critical. Another heart med was started immediately and another echo was done today. There was no change. The cardiologists have diagnosed him with critical heart failure. The surgeons say there is absolutely nothing they could do or are even willing to attempt; they believe he would die on the table. We have been given two final options. We could try for a heart transplant. It is very questionable if he would be healthy enough to even be considered a candidate and even more questionable whether he could last the up to 10 months it might take waiting for a heart. Even if by some miracle he got a new heart next week, the quality of life for a child transplanted at this age is not good at all. Most newborns don't survive the first year following the transplant and of the one's that do surivive the first year, less than 40% are alive 10 years later, which is about the max life expectancy of a transplanted heart and so he would need a new one. Which brings me to our only other option--to stop giving him support, meaning to give consent to turn off the ventilator and his heart medicines and slowly watch our precious baby pass away. The very thought of it makes me sick to my stomach. Many of the dr's and staff feel, given the other horrible alternatives, that letting him go is the more humane and actually compassionate thing to do. Cody and I wonder how our bodies could continue to exist if we had to make a decision like that. We've fasted and prayed for the Lord's guidance. I've prayed, maybe selfishly, that if our Father in Heaven must call Ben home to Him, that He will show mercy on us, and that his passing will be natural and peaceful and that our angel will not suffer. His suffering, the sadness and exhaustion in his eyes, is more devastating than I can express. Our complete devotion to our children is part of the core of our beings. We love them and cherish them so absolutely that the very idea of not having them here with us everyday feels like torture of the worst kind. I ache at the thought of it. And yet he suffers. And we watch it and hate it. And while we still cling to that thread of hope that he may yet get well and gain strength, it just doesn't seem to be going that way. He is so terribly sick. And so very weak. The situation is devastating, and yet we find comfort and strength in our Lord. He has been with us these 10 long weeks and we have been blessed with many miracles throughout. In addition to the many physical miracles for Ben; Cody and I and our families have been blessed that our hearts have been softened and our focus has changed. Rather than wanting what we want for Ben, or should I say even more than wanting what we want, we want the Lord's will to be done. We know that no matter what happens it will be for the best, and for our good. And of course it helps to know we are an eternal family. Please, please continue to pray for Ben as well as the dr's and nurses who look after him. Also please pray for Jocelyn and Aimee who are the sweetest, most wonderful little girls ever and yet they have a really hard life right now. Finally always remember the many other sick children at Primary's in your hearts and prayers. They sure need it too. I am scared at the anticipation of this uncertain week ahead. It seems our lives will never be the same again.

A Good Day...

Look how cute little Benny looks in clothes! A sweet mom donated these with snaps where the shoulder seams were so you can pull the whole front down and get to his wires, tubes, etc. This was the first time he has been in real clothes and I think he looks adorable. Also this was the first time I held him vertically (now that a lot of his heart lines are out we are able to) and I got to pat his bum for the first time too. I loved it, as you can tell. The last picture is of Ben's toes because they are really special to me. A lot of times since he was born he has had his fingers taped up in IV dressings and other stuff all over his body so when he would cry I would hold his toes (because sometimes that was the only skin you could get to) and he would curl them around my finger. Sometimes when he wants me to touch him he will stretch and separate his toes and I will grab them and squeeze them and he calms right down. It is cute and just a little silly thing between he and I but it makes me feel loved and I hope it does for him too.

Go Jazz!!!

So Cody and I had the funnest night out on Wednesday. An awesome annonymous family donated two tickets to the Jazz game and they requested they be given to a family that had been at the hospital for a long time and had really been through a lot. You can imagine how surprised I was when the parent resource lady told me the staff had chosen us! The seats were amazing--row 11 from the floor! I've never been able to see a sporting event from the lower bowl let alone that awesome of seats (we were right behind the reporters!). It was such a blast. Ben had had a really great day so Cody and I left him for just 2 1/2 hours and had such a fun time together. We really needed a break away and some alone time together 'cause it has been so long. And of course it was even funner because the Jazz killed the other team. I had to take a picture of Ronnie Price, #17, because he came to see Ben before Christmas, took his picture with him, and gave him an autographed basketball. I wish I knew who the family was that donated the tickets; we really owe them a big thanks!