The flu hits...

So Aimee was sick in bed with influenza the last few days. Not fun at all. The first two days were mostly high fevers (104's), runny nose, cough and lots of trouble breathing especially when she was sleeping. We quarantined her to Dad and Mom's room so we could get her better and not spread the fun to the rest of the fam.

She felt a little better after her bath, though her fever was still in the 103's but that didn't stop her from smiling and being her sweet self.

A few minutes later she was coloring a picture to give to Jocelyn.

The next day though she had viral pink eye in both eyes. This picture doesn't show how swollen and puffy her face was and how bad her eyes looked. I mean really bad. They really looked like she'd been in a fight! Even today they look like they'd been bruised. Poor girl!

But alas, rest is the magic cure, oh and Tamiflu, and she is definately on the mend. We've washed, washed, and re washed lots of laundry to keep things clean and so far Jocey and Benny seem to be fine. Let's hope our little visitor is on the way out!

Update on Benny...

Everything is AWESOME!!! So we went to clinic today and it was a way short visit- only like two and 1/2 hours so not too bad. And yeah!, everything is great. I always worry now that we're only going every 4 weeks that something is going to happen. I see so many kiddos struggling with their new hearts and wonder why Ben just seems to be sailing through. Is it the calm before the storm? I guess you never stop worrying about your kids, especially those that have a history like Ben's. That's why it's so reassuring to hear that things are going well. I haven't heard about all of his lab tests yet but I assume they're fine and his echo was okay, no worse on the tricuspid regurgitation than last month so that's great! I also ran into a few friends today: Paul (who had his transplant a few weeks ago) and his sweetie Lynette (it's always nice to see them), and Dr. Kouretas (one of the amazing cardio-thorasic surgeons) who remembered us (which made me feel good since I'm terrifed that Ben will be forgotten in a place that always has someone to fill your bed when you leave) and he gave me a quick update on Dr. Hawkins and said that he's hanging in there. Please pray for Dr. Hawkins and all of the little ones at Primary's. And remember to wash your hands A LOT. I don't know why that last bit bears repeating so much, but it sure does this time of year especially.

Gratitude

Someone like me has so much to be thankful for. Today, what is on my mind most is the love we feel for each other in our family. Nothing makes me happier than watching our kids interact with each other when they don't know we're watching. They are so good to each other and really enjoy being together. They look out for each other and cherish one another. I am so proud of them. They bring so much joy to my heart everyday. I thought it would be nice to see some of those moments I've captured in the last few months.

Help please!

Okay, so it's like 1:45 pm and I haven't a clue what to make for dinner? Any thoughts? It has to be ready by 5 pm when Cody gets home. I'm at that prego point where I'm hungry all the time but nothing sounds good so it's tough deciding what to make. What are you making tonight? Send your ideas my way, we're desperate!

Surprise!

Well since the cat is mostly out of the bag (in other words Jocelyn is telling everyone I haven't personally gotten around to telling) I guess it's time to post the good news. So....we're gonna have another baby!!! (I feel like screaming Aaaggghhh, Yeah, Uh-oh, Wah-hoo, Oh Dear, and Yippee! all at the same time.) Truthfully when I found out I was mostly terrified, worried, and anxious. But now I am starting to realize that Heavenly Father has brought us this baby and this opportunity for a wise purpose in Him, and even though I feel overwhelmed and can't really understand why me and why now, none of that really matters. We're having a baby! Another sweet little bundle to love and cherish. I think that babies are always a blessing, and I am sure this one will be for our little (or not so little these days) family.

Our baby is due Friday, March 5, 2010 (but I always go a week early so maybe the end of February) so that means I am almost 14 weeks! In a couple weeks we find out if it's a boy or girl.

We have so much to tell you!

Our blog is currently being updated... visit again soon! (Like Angela soon, a few days to a week, not like five minutes.) Ü

Please, Please pray for Bridger Smith's family. I would like to fast tomorrow if anyone would be interested in joining me. May the Lord bless them and carry them through their trials!

Heart Cath

So I happen to have a minute here at Primary's today for a quick update. Everything has been going pretty well with Ben, I think any way. Last night though we got a call from the transplant doc saying she has reviewed all of his echos from the last month and they think he is in rejection! (Aaaggghhh!!!) So here we are at Primary's doing an emergency heart catheterization and biopsy to know for sure what is going on with him. Such a bummer because he seems to be doing so well at home. But often by the time they show symptoms it is may be pretty advanced. He has been back for over two hours and they are just starting because it took so long to get all the lines placed. Say a prayer and wish us luck-- we'll try to update when we have some details.

P.S. Oh and Jocey was in the hospital a lot last week for tests because she has a really bad kidney infection so please pray for her too.

P.P.S. Aimee is great--hearty and healthy-- but she could use a prayer too 'cause life's been way crazy lately...again! Ü

Until next time...

So we've been crazy busy the last two weeks and actually we are still right in the middle of another crazy two weeks. We did, with an enormous amount of help from family and a few friends, get our new home painted, cleaned, lawn mowed, bugs sprayed and everything moved. So now we are happily unpacking the loads of boxes, wondering how we ever fit this much in to our little three bed apartment, and still feeling pretty overwhelmed by it all (sealing the deal with our VA loan has been a nightmare this time and we haven't even closed yet!) but it's okay because when the dust settles it will all be worth it.

The girls are already soooo much happier and I think Ben is too. It is like a dark cloud has been lifted off our family and we are so ready to start living the rest of our lives. The Lord has truly blessed us. Ben's health has actually been remarkably well lately and we look forward in the next few months to being able to have a little more freedom to have visitors and take him out, slowly of course. He is going in for surgery in the next week and a half to have a G-tube placed in his stomach which hopefully will help his feeding struggles a little.

Unfortunately we don't have the internet hooked up at our new home yet (not sure when or if we will) so I don't know how soon I'll be able to post again. I'll really miss being able to check up on all my buds and seeing what is happening in your lives. So everyone out there remember that I won't be checking up on you and seeing all your cute pictures so you'll have to call me and let me know what is happening. And even though we've moved a little further away, don't be a stranger, it really isn't that far and you sort of get used to the brine shrimp smell after a while!

Over and Out...Ü

Look how cute our neice Taylor is with her very first birthday cake. Funny how all kids seem to know just what to do with it! She has this cute expression with her hand raised up like she conquered it or something. Darling! Thanks Amanda for sharing the picture with me. Looks like a great party! Happy Birthday Taylor!

Snoozing


Watching Aimee


Bedtime Story


Examining the Loot


In Cognito


Our Diva


Best Buds


A Good Stretch


Cute


Sweet Dreams

Lots of random thoughts I've had lately...

--feeling sad that we drove by our old house the other day and all of the flowers we'd planted are dead
--my "Make Life Easier" list which I estimate will, when put into effect, do as the name suggests
--and while I was list-making I also made a "Get Healthier" list too, hopefully it will precipitate astounding results
--feeling sorta depressed living in "The Cave" and being so confined here with Ben and so anxious to move to a place with lots of light
--so happy that so many of our friends babies are doing so well, but so worried about those sweet little ones that struggle and so sad for those that have gone Home
--the endless "Balance in all things"
--noticing that my nails are narly and need more regular attention; unless I want to grow them out to compete in the Guiness Records
--trying to define my role with regards to family income, not getting overwhelmed by doctor bills and allowing the Lord to provide
--realizing that some of my unrealistic dreams may never become a reality, making new dreams and learning to make the dreams of my husband as important to me as mine are
--enjoying the birds singing outside
--trying to smile when I'm angry and laugh when I'm sad
--missing people who've passed on; one in particular
--learning to not be so rediculously nazi about having a tidy/organized home. Important? Yes. The end of life as we know it? No.
--realizing that while I like to think of myself as "all grown up" as circumstances and my body shape would suggest, I am still in many ways the child I was--so in need of love and acceptance and forgiveness from others, still making silly mistakes and generally making myself look rediculous a good share of the time
--attempting to develop two personality traits that I could benefit from-- listening more, and talking less and assuming the best about everyone
--wondering when was the last time I put Jet Dry in the dishwasher
--keeping all of Ben's medicines straight
--feeling horrible for not having memorized Aimee's dance for recital so I can help her practice
--trying to remember to water my dying plants
--feeling nervous to make new friends in a new ward and neighborhood-- will they like me? I'm kind of a dork!
--feeling proud of the yummy rolls I made the other day, regardless of the mess it caused
--loving Ben's expressive smile and laugh
--wondering why Jocelyn's face looks so grown up and all Aimee talks about is lipstick, jewelry and gum

A combined project for Dr. Hawkins

Thanks Christina for sending me the following info.

"Kim Simon who is a nurse at PCMC (and mom to Cole who is also a member of IHH) is working with Dr. Janet Harnsberger (who has a son that has HLHS that is now in his 20's) in putting together a "Thank You" project for Dr. Hawkins. They are asking that if you want to be involved please send a 4X6 picture of your child along with a paragraph of "Thanks". The photo and paragraph can be sent to Kim's email address at kks19@msn.com."

Everyone, let's contribute to this combined project and I know it will turn out great!

Devastating news...

So this is just horrible. I just found out on Friday night that Dr. Hawkins, Ben's primary surgeon, is very sick and has taken an indefinate leave of absense. I really appreciate a dear friend Kristen for letting me know this sad news. It came at a rough time for me because Cody was gone on a business trip and I was frustrated, lonely and really missing Cody. I cried for a few hours after I read her email. And it has taken me until now to be able to write about it.

I believe that very often our Heavenly Father uses others to answer our prayers and to bless our lives. He gives them special talents to help them, extra compassion, and frequent inspiration. Dr. Hawkins is one of those people. He truly means so much to our family. He worked so hard to save our son's life specifically three times during difficult and risky surgeries but also so many other times with his knowledge, resourcefullness, willingness and determination for Ben when so many others doubted.

I remember the first time we met him. It was the day of Ben's first open heart surgery actually just minutes before we were to walk the long hallway and say goodbye to him. Ben was just five days old and of course we were nervous. But certainly not as nervous as Dr. Hawkins when he came to meet us, get the consent form signed and explain what he hoped for in the surgery. I remember seeing him tossle his hair from side to side and rub his face and his knees with his hands. He was so worried, and it showed. Here was this man in front of us that we had been told was the absolute best; the leader in cardiovascular surgery at Primary Children's. A great innovator, a genius, a daring but cautious surgeon. And yet he just kept saying, "I don't know, I just don't know." I remember Cody reached across Ben's little isolet bed and said, "Just do your best, that's all we can ask of you." And he said that he would. That shows though the level of concern he has for Ben and for all the little ones in his care.

I remember when he came to talk to us after the surgery and I, who was just ecstatic that Ben survived!, couldn't believe that Dr. Hawkins didn't seem more relieved and pleased. But by the next surgery and then the days leading up to the transplant we got to know him better and realized the extreme high expectations he has for himself. He knows that everyday he comes to work, the lives of these precious children are in his hands. What an enormous burden to bear!

I was lucky to have two private conversations with him that really epitimized his extraordinary character to me. One was the day of Ben's transplant. I can't tell you the rollercoaster of emotions that day held for me, and I soon realized for Dr. Hawkins as well. Before Ben's mitral valve replacement surgery Dr. Hawkins had said that if they stocked hearts on the shelves like they did with artificial valves he would have done that procedure all along, because he knew the risks for Ben with the mitral valve replacement and how weak and damaged his heart really was (Ben still holds the record for the youngest and smallest child ever to have a mitral valve replaced at Primary's). So I thought when the donor heart became available for Ben that Dr. Hawkins would be so pleased. And he was, but disappointed too. In himself. He just kept saying that he wished there was more that he could have done to save Ben's heart. He said that he had tried so hard, that he had done absolutely everything he could think of, and that the memory of how damaged it was still plagued his mind. And then he asked who we would like to perform the surgery. "Duh, YOU!!!", that's what I felt like saying. How could he even imagine that we would want anyone else? He is so humble. And I saw the depth of his love for these sweet heart defect babies.

The second conversation was when he was restitching a chest tube that had come out. He started the conversation the same way most of his conversations started, with the Kansas Jay Hawks. He seemed in a chatty mood so I started asking him about living in Kansas, where my family way back when is from too. He told me he recently went back to help his mom move out of her home and into a retirement home. He talked about his kids in colleges all over the country. He talked about fishing and other hobbies he used to have. I said I guess there were probably a lot of things he didn't get to do anymore (knowing his round the clock hospital life). He mentioned a few things he had wanted to do during his life, some unfullfilled goals and dreams and said, "But then I went into cardio thorasic surgery, and there went that." Truly he devoted his entire life to saving others; our little boy is just one of so very many. I know this came at great personal sacrifice to himself and his entire family. And I stood there in awe and didn't know how, on behalf of so many, to thank him.


My very good friend Staci and I would like to put together something for him, a conclaboration of sorts. We hope that this message and others we are sending out will help to spread the word. If you or anyone you know has been touched by Dr. Hawkins at Primary Children's please comment to this post with your email address. We are hoping to compile stories and pictures and time is of the essense. Please spread the word. It would mean so much to me if there was some way we could say thank you to such a wonderful man and his family.

Another surgery

It is time again. We are asking for all we know to pray for Brady, Cody's brother and for Cody's parents as well. Brady's health is really suffering and Mom & Dad Hamer have a way lot on their plate and haven't been well either. Brady was admitted in the hospital over the weekend, is home now but is having surgery tomorrow. Please, please pray for him and their sweet family.




Cody with Brady and their parents at Yellowstone last year.

So busy...Here's what you've missed...

Sorry I never blog anymore, just not enough hours in the day I guess. Here's what's been happenin' 'round here...

Ben's first bite--more out than in but now he loves it. Ben sleeping and Ben's first bottle.





Lots of storytimes and snuggling with Mom.



Ben showing the other side of his personality, just hangin' out and thinkin'..."I'm too cool for my buckles"..."These toys are lame"...and making a punk face, I'd spiked his hair--can you tell?




Jocelyn and Aimee are as busy as usual...at the Beauty and the Beast play with Grandpa and Grandma Hamer and making a routine visit to Mom's Salon (where the service is great but it's getting harder and harder to make an appointment!).





Our frequent visitor on the back porch.


Ben has a secret...I found it in his diaper, but I'll take that to throw-up anyday!


Cute Ben loves Daddy...snuggling.




Thumbsucking...it's all the rage!



Oh and we are in the process of buying another home...details and move-in updates to come! Yeah!

"There were never such devoted sisters"...

Jocelyn is the fairy godmother and Aimee is going to go to the ball.

An hour later we had nap time. Aren't these two the most wonderful girls any mom ever had! Love 'em to pieces!

Latest Pictures

Make a Smilebox photobook

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.

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!