THANK YOU!

Dear Family,
thank you for bringing flowers and the cute bear to our baby girl. We really appreciate you doing this for her and us. We thank you for your support and love we feel every day. I know Vittoria loves her bear, thank you cousins!! We love our daughter and miss her tremendously every single day.
And thank you Friends for checking on us, visiting with us, calling and writing and for your support and care.
We love our Families and Friends and we are grateful to have you in our lives!!
We CAN'T do this without our Faith and all of you!
Love,
James and Valeria

A Quick Hello

(Aunt Tori)

So today makes it 4 months that we have missed our sweet Vittoria. Since Val and Jacomo are in Italy and James will be in Price today, but busy with work, Grandma Bonnie and I stopped by to say hello to our little princess. (Aunt Jana and and Aunt Joy had little sickies, or they would have been there too.) As extended family, we can't believe it's been four months. We can't even begin to know how it's been for James and Val, but we want the two of you to know that we never stop thinking/praying for your family and love you SO MUCH! Our hearts ache along with you. We will always be here for you and hope you know that.

We love you!

the little bear (with the beautiful purple sweater) is from all the cousins

Back to Vittoria's School

August 28, 2005
Vittoria's first day of school. She is 4 years old and ready to learn!
(Her school is in the background)


(Mom's Turn)A few weeks ago, as I putting Vittoria's backpack away in her closet, I found a book in it called "A Vampire's Vacation". I remember the day she brought home from school so she could read it. I had to smile: the cover has this funny looking vampire on it and I thought it would provide her some amusing entertainment in her free time. And I also knew very well why she had chosen that specific book: she had just watched "Twilight" and I think she thought this book was something like the movie. I never did ask her, and now I can just guess. I don't know why I waited so long, in my heart maybe I was hoping that she would have to come back to finish reading it.
Anyway, last week I finally decided that it had to go back to the school among other things and so today, James, Jacomo and I went to Vittoria's school.
I think I can speak for James too, when I say that we were anxious and nervous, maybe a little bit scared this morning. As we pulled up in the parking lot, my heart was pounding so loud and my hands were shaking so bad, my eyes were already swimming in tears, and I was trying my best to keep it all together.
There is something I have to say about this wonderful school: as soon as you walk in, it's like walking among family, you get hugs, tears, support and love, all in one. And as we walked in Vittoria's class, we got welcomed and greeted by the awesome teachers that Vittoria absolutely adores and her classmates whom Vittoria enjoyed so much. Jacomo I think was the main attraction: he got surrounded by maybe 10-15 of Vittoria's friends and he was loved, hugged, taken on a tour of the class and made feel he was among his friends. Some of these incredible kids even came to the funeral and today they gave us the sweetest and most moving letters they wrote to us and Vittoria I could ever imagine.
They even asked to hug us, and let me tell you, there is nothing more touching and comforting than a child's hug: it's sincere and heartfelt.
The whole time I was in the class, I could "see" my little girl, among her friends and favorite teachers, just showing off her little brother and walking around her class looking at the many different works on the walls. We can't say enough about the remarkable teachers who have taught and supported, encouraged and followed, and cared for our little girl throughout the years. Thank you, Ms. Debbie, Ms. Brooke and Ms. Gimenia! And to Ms. Valerie and Mr. Jeff, thank you for letting our daughter be part of this awesome school!

This picture was taken on March 10, 2008 at 8:19 am. We were waiting in the car in the parking lot of the school, right before dropping off Vittoria. I love this photo! It's very tender! Vittoria's teachers know that even though this is what Vittoria looked like in the morning, when it was time to pick her in the afternoon, it was a whole different picture: she would come out of school looking like she came out of a earthquake zone: no hat, one glove on, the other in her pocket, dishevelled hair, the sleeve of the sweatshirt that she had on the morning, hanging from her backpack, with the zipper not closed and papers and stuff threatening to fall out at every step. How many times I made her go back or went myself, to look for things that she had left behind. But in the end, she was just being a kid.


WE LOVE YOU AND MISS YOU SWEET GIRL!

Thanksgiving and Vittoria's Tree

(Mom's turn)- Another holiday has come and gone. Thanksgiving like every year was spent at the cabin with the whole Family. And once again, our hearts ached deeply for our daughter's physical presence, like every day for the past three and a half months. The cabin is one of Vittoria's favorite places, the mountains surrounding it are gorgeous and this time we even had some snow on the ground. This is THE place where all the cousins get together and play from morning until night, day after day. Vittoria loves her cousins, she would "disappear" on the "deep stairs" ( it's actually the playroom, but to get to it you have to go up some steep stairs), and she would show up just when it was time to eat, otherwise always on the go.

We miss her so much it hurts.

Christmas is Vittoria's favorite holiday. So when our friend Jeralyn came to Primary Children's to visit and asked us if she could dedicate a Christmas Tree to Vittoria at the Festival of Trees, all I could think was that by then, she would have recovered enough to go see it together. I could not wait to see her face.
So Jeralyn, her Mom, her sisters and her family graciously dedicated this tree to our beautiful daughter. The theme of the tree is "Jest" for Fun, and we think it reflects Vittoria's personality: always cracking jokes, goofing off and making funny faces, even at the hospital, after surgery. We have one tough little girl, very brave and strong.



So, on Tuesday night, Jeralyn, her Family and the three of us went to see it. As we were waiting to go in, I could feel my stomach in knots. I started tearing up even before seeing it. As we were walking among the hundreds of beautiful and very different trees, this couple leaving the Festival and walking towards us stopped. And I almost fainted. I don't easily forget faces, and ESPECIALLY the ones of nurses and doctors. Cory works in Pediatric Intensive Care Unit at Primary Children's and even though he did not care for Vittoria directly during the four weeks she was there, he would come by to say hi and see how she was doing. So, needless to say that with my stomach already in knots, at this point I was ready to throw up: the flashbacks of those weeks in PICU came like a freight train, I felt like all the memories, the emotions, the heartaches came crashing down on me. So, if anybody is wondering why I have a blotchy weird face on the picture, crying does that to me.
I decided to post it anyway, so that Family and Friends, near and far, can see that we have not curled up in a ball and let life go by, we try to go on with our life the best we can. Each day is a struggle, but we go on, we want Vittoria to be proud of us. We left the Festival feeling like Vittoria would have approved of her Tree, especially with the purple decorations and the elegant jesters.

We want to express our heartfelt gratitude to Jeralyn and her Family for thinking of our daughter and dedicating a Tree to her, for the hard work and the support for our family.

Thank you everyone for all you still do for us, for the prayers, love and support we feel every day. We could not do it without you.

I Will Make Your Heart Whole Again

Since I don't have a post for Thanksgiving yet, I decided to post this. I was checking out Traci's blog for more on Maddox's surgery and I saw this. I hope you don't mind Traci.


I Will Make Your Heart Whole Again
It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. She asks, “Will I be okay with only half of my heart?" Jesus replies,” Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about His plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when it's time to come back to Heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves." Author unknown

-3 Months-

(Mom's turn)- Another month has gone by and everyday life is not any easier or happier than a month ago. If anything, I personally find every single day hard and painful to go through, my heart is heavy and very sad. I don't think I have accomplished anything more this month than the last, I feel like the days are slipping by and I go on like a robot. Sometimes the grief is unbearable.

This month too we made it down to Price to be with our Family for Tori and Casey's birthdays and to take some flowers to our girl's grave, since yesterday was the 3-month mark from her passing. Our Family joined us at the cemetery and it was sure comforting to have them around, one more shoulder to cry on, and plenty of hugs to receive. With the cold weather coming, we decided to bring her some pretty silk flowers since fresh flowers won't last as long. I can't bear to see her grave with dry ugly flowers. My two nieces Taylor and Rylie made some really cute turkeys out of little pumpkins for Vittoria and it's so much more colorful and bright now. I know she would love it. Thank you girls for doing that!




I don't know if it's the holiday season getting close, but we are struggling. Anything like a smell or a song will set off major tears. We just miss our girl even more, if possible. A couple of days ago, I opened Vittoria's closet and it hit me like a slap in the face: the smell of her things, her shoes, her clothes, literally brings me to my knees.

Christmas has always been Vittoria's favorite holiday, the two of us would start listening to Christmas music on KOSY 106.5 the day after Halloween, much to James'dismay. We would beg him to let us decorate the house and put the tree up at the beginning of November, and 8 times out of 10, we would win. Now, I can't even look at the Christmas corner in my basement. It twists my heart.

But among so much sadness and pain, we have our little ray of sunshine. Little Jacomo is the one that will get us through the day, the week, and the month ahead with his smiles and also with his trouble making. Like I've said before, this little boy keeps us on our toes and since yesterday was such an emotional day for James and I, this afternoon he decided once again to get creative.


Anything wrong with this picture?
Well, this used to be a Reader's Digest cover, until Jacomo got a hold of it and decided to EAT IT!!! In order to do that, he escaped from what we call the "Moose Corral", which is basically a HEAVY children's fence we put in the family room so that he can play freely with his toys, but keeps him from wandering around the house without supervision. While I was turned around loading the dishwasher, little Hercules moved the fence away from the wall, climbed two stairs, reached for the magazine which was on the landing of the staircase and ATE IT! I turned around and the page was half gone, I looked and looked, hoping and praying to find it somewhere, but nothing. I did however noticed a little tiny piece of paper by the corner of his mouth and I was speechless. I called the nurse, who told me to call Poison Control. They told me that this kind of thing happens all the time. It's not toxic, since the amount of ink he ate was minimal and that he would be okay. They told me just to watch him and to make him drink a little bit more since paper causes constipation! Oh man!!!
Anyway, he is ok, happy as always ... I, on the other hand, have lots more gray hair and an ulcer the size of Texas!

Jacomo turns 1!!!

JACOMO'S CAKE

OUR LITTLE SHOELESS COWBOY

(Mom's Turn)
Our little guy is 1!
I can't believe how fast time has gone by. It seems like yesterday that we brought him home and we again had a newborn in the house after 8 years. All our family and closest friends came to celebrate him on Saturday, and we thank you for that. It was a bittersweet day, I imagine that's how it's going to be for the rest of our lives: his very first birthday and big sister Vittoria wasn't (physically) here. Oh boy, would she have been so excited to celebrate her little brother and spoiling him rotten. I think she would have approved of his cake ( Spongebob is one of her favorite shows to watch, and chocolate is something that she would have eaten by the pounds if it had not been too healthy for her), and would have loved to have all her cousins and friends together under one roof, playing and enjoying themselves. Jacomo was very taken back by all the attention he got, he preferred crawling around and chasing his little cousins.
We feel the void she left: when it was time to give Jacomo our gifts, I could not stop thinking about her handing her gift to him and excitedly waiting for him to open it. I was sad and at the same time trying to be happy for our boy. Conflicting feelings and emotions are hard to deal with, my heart is torn, on one side there is so much grief and sadness, on the other there is gratitude and love for this child that we have left and we get to raise and for having our daughter forever.
He is quite the happy little guy, very stubborn and opinionated, he is already testing us and challenging our rules, but in the end, we love him so much and we try to do the best for him and raise him like we have raised Vittoria.
Again, I could not hold it together when it was time to sing "Happy Birthday" to him: my heart was begging to hear my girl's little tiny voice sing, even just in my head. I think she would have helped him blow out the candle, since he just looked at it and waited. Finally James helped him. A better reaction of when Vittoria stood in front of her first candle and started crying and trying to crawl away from it.


Jacomo is a good eater, most of the times, and he sure enjoyed that piece of chocolate cake. He wasn't really sure about it, I don't think he knew what to do with it, but once he got rid of the plate the cake was sitting on, he went for it and boy did he make a mess, but he finished it all. Needless to day, after he was done, he was put right in the sink and given a bath.

To Family and Friends, near and far away, who have been by our side from the beginning, who have rejoiced and mourned with us, who have never left us, who love and support us,
THANK YOU from the bottom of our heart!
WE LOVE YOU!

Halloween 2009

HALLOWEEN 2002



HALLOWEEN 2009

(Mom's turn)
Same Halloween costume, 7 years later.
Jacomo got to wear Vittoria's elephant costume for his very first Halloween. Good thing he did: it was cold and a little bit windy in the evening, and with everything that goes around, he was warm and protected with all that fleece (that's how Vittoria's costumes were chosen when she was younger: they had to be heavy and warm!).
The morning of the 31st it was not something I looked forward to. I just wanted the day to be over with and be done with it. But then the first wave of the "rescuers" came: Vittoria's best friend Brittney and her family came over to visit and I ended up learning how to make sugar cookies ( I know it's a shocker, but besides brownies, I don't make anything else). Jacomo had a great time with 4 little friends playing with him and loving him. After they left, James' sister Mary, her husband Luke, and daughters Tianna & Adelia arrived with more treats and food. Tianna was Aurora from "The Sleeping Beauty" and Adelia was a lamb ( get it? Mary had a little lamb!?!).



So, the three little munchkins went trick or treating in the neighborhood. Jacomo did not really care about treats, he was just happy to be outside and see other kids.
I, on the other hand, had really to force myself to take part in all this, I felt like I had to do it for our little boy, who has no fault and no clue of what's going on, and for Vittoria: she would have been so excited and the first one out the door and last one to return. But the whole time, I kept thinking that this was his first Halloween and his big sister was not there to share it with him and to celebrate it together. I didn't see the fairness in life. She was looking forward to this holiday and get all dressed up.
It was almost the end of the evening, when I saw across the street this cute little blonde blue eyed girl dressed up as Cleopatra, and that did it for me, I completely lost it. I was WAY done. I saw Vittoria in her last year costume and could not stop bawling. My heart ached so bad, and then when she showed up at our door, all I could see was my little girl and her big mischievous grin. Needless to say, I was not the best company for the rest of the evening.



Towards the end of the evening, James' brother Garth, his wife Tori and their 4 little girls came by, so of course Jacomo a.k.a. Moose was having the time of his life. All his cousins kept him entertained and busy.
Well, in the end, it was a very good thing we were not alone on this holiday, and a big thank you to family and friends that traveled long distances to be with us. I know our little girl had been with us and especially with her little brother. We love you and miss you, Vittoria!

Vittoria's Music

So, finally there is some music that goes with the blog (Thank you, Tori). It's Vittoria's music, since all the songs on the playlist are hers. Some may be wondering about the very many different kinds of music on it...well, Vittoria likes pretty much everything, and I think behind every song there is a story or a meaning. So here we go: It starts with her favorite "Love Story" by Taylor Swift, the one that opens the flood gates whenever we hear it, and it will be always dear to us. It was the only song that Vittoria's eyes would open up to when she was in Intensive Care. Then of course we have "The Phantom of the Opera" soundtrack, which it was played in the car about every day when it came out, and at home and on her MP3. We watched the movie until she knew every line and learned to draw Christine in her fancy dresses. Then we go on to "The Climb" by Miley Cyrus, a song she loved to sing with her cousins Taylor and Natalia at the top of their lungs, usually at the cabin. "My Little Girl" by Tim McGraw, "The Prayer" by Andrea Bocelli and "To Where You Are" by Josh Groban were actually played at her viewing and they can be found on her dvd. The 2 "Twilight" songs are some of Vittoria's favorites: "Bella's Lullaby" because was relaxing and romantic and she was starting to like romance, and "Super Massive Black Hole" because ever single time that she played it, her little brother Jacomo would start crying like there was no tomorrow and Vittoria laughed her head off and kept on going. The "Harry Potter" music was played every weekend when Vittoria and her Dad would have the " Harry Potter" marathon. "You Raise Me Up" by Josh Groban was learned at school, and she loved it. "What I've Done" by Linkin Park was the final song to the movie "Transformers" which was one that Vittoria and I would watch just about every other day. "New Divide" by Linkin Park was a relatevely a new song: Vittoria heard it and loved it. So we got it and it was played in the car every day, even on the morning of the heart surgery on July 21, 2009. "Wizards in Winter" by the Trans-Siberian Orchestra was given by Aunt Tori and Vittoria loved it, since to her it was very Harry Potterish. "Broken" by Lindsey Haun is an awesome song that Vittoria learned by watching the movie "Broken Bridges" and if you want to have a good cry, this would be a good one. Tori made me listen to "Footprints in the Sand" by Leona Lewis. There was no need to tell you that it had to be on this blog: the back cover of Vittoria's Funeral program has the "Footprints" poem on it and to me it's just the perfect song. "Fly" by Celine Dion was written for Celine's niece who passed away at a young age....and it felt like it was for Vittoria too. "He's a Pirate" from the "Pirates of the Carabbinean" movie would get Vittoria dancing and jumping around the room. Vittoria went through a Riverdance phase: from morning until evening "Warriors" was the most played and danced to.
There is also a song from the movie "Enchanted": Vittoria loved the movie and dancing to the different songs, same story for "Spirit" Soundtrack.
For all those who know our family, we are major NCIS fans: every Tuesday night for the past 6 years we have watched religiously every episode, so Vittoria kinda got brainwashed, mostly by her mom, and when she was old enough to stand, she has danced with me to the opening song and done that until the night before her surgery. It was a ritual for us, no matter if we were at the table, ready to eat, or outside, we would stop what we were doing and started dancing like crazy (just ask James). I think it was this show that got Vittoria wanting to be a doctor.I hear it now and it hurts, I miss dancing with my little girl. We already have little Jacomo dancing to it and.....it needs a lot of work! There is one song that is not on the playlist and needs to be: it's "Arms of Love" by our dear friend James Marsden. Many don't know that right after Vittoria passed away the evening of August 16, 2009, our friend went home and wrote it in one night. He was definately inspired and what a great tribute to our Vittoria when he sang it at her funeral. The beautiful song is available through her blog.
And finally last song: It's "God Be With You Till We Meet Again" by the Mormon Tabernacle Choir. It was sung at the end of the Funeral Service for our little girl and I think it's one the most beautiful Church songs ever written.
As more songs that Vittoria liked will come to mind, I'll add them to the playlist.
The next posts will have some of Vittoria's drawings. She is a very talented girl and I thought it would fun to show some of her pictures.

- 2 Months-

These pictures were taken today at the Price City Cemetery where Vittoria was laid to rest. We brought some pretty flowers and purple bows. While Jacomo played with the purple unicorn that cousin Tianna gave to Vittoria, we rearranged the flowers in the vases and shed some tears. Thank you Mama Bonnie, sisters Tori, Mary and Jana and Donata for being there.
When I got to her grave, I found a little vase with purple and pink and white little buttons and flowers made out of them and among them, I found the poem on the top picture. Thank you Joy!

(Mom’s turn)
I have been thinking about this post for quite a while now. Another month has gone by. Since Vittoria’s passing, we’ve had several FIRSTS: first time the table was set again for 2, first trip to the cabin, first McDonald, first Panda Express, first 4 wheeler ride, all without our girl. And if I start thinking ahead, I see Halloween, Thanksgiving and Christmas coming. And I don’t even want to think about it. It will be Jacomo’s first Halloween and it breaks our hearts to know that she will not be here to share it with him: she was already making plans to be Scarlett O’Hara this year. She already had the large pretty hat with the red ribbon, we just needed the dress.
Every day it’s a struggle, we do try to keep busy, but our hearts and minds are often somewhere else. No parent should go through this: no situation is the same and no one knows what another person goes through, the experiences can’t be compared, but the broken heart after losing a child, no matter how old, is similar. Time does not heal all wounds: this kind of wound I don’t think can ever be healed…with time, and I mean a lot of time, it can get less raw and less painful, but it will always be there. Our pain is still very much there, still very fresh and alive, we miss our girl so much. I find myself smelling her bottle of shampoo just to remember the smell of her hair, or stopping at looking at girls’ clothes debating if it is something that Vittoria would have liked. Her radio is always on, just like she always had it, and the nightlights are still on in her room and in the hallway and her bathroom: she was afraid of the dark and all those lights comforted her.
Jacomo is starting to call Vittoria: he crawls up really fast to her pictures, stretches his little arms to her and says “IA IA” ( YA YA), with a big grin on his chubby face. And as I look on, I just want to bawl.
Our Jacomo is a very happy active little boy; he makes us laugh and keeps us on our toes. Sometimes it’s hard to keep up with him: if he could, he would play and eat 24/7, naps are highly overrated for him, and he is starting to play with trucks and horses…he LOVES Grandpa’s horses, since he can’t neighing to them, he growls at them. He adores water: getting him out of the tub is always a fight, just like with his sister. She could stay and play until the skin of her fingers would fall off. I see a lot of similarities between the two of them, mostly with their stubbornness ( I have no idea where they get that from), and with their likes and dislikes. Our Vittoria taught us and is still teaching us so many things, but above all how to be parents.
Cousin Mindy sent me the video of “Fly” by Celine Dion, and I wanted to post it, but since technology does not like me, for now I thought I would post the lyrics. Needless to say, that after I heard the song, I was a mess for the whole day.

Fly, fly little wing
Fly beyond imagining
The softest cloud, the whitest dove
Upon the wind of heaven's love
Past the planets and the stars
Leave this lonely world of ours
Escape the sorrow and the pain
And fly again

Fly, fly precious one
Your endless journey has begun
Take your gentle happiness
Far too beautiful for this
Cross over to the other shore
There is peace forevermore
But hold this mem'ry bittersweet
Until we meet

Fly, fly do not fear
Don't waste a breath, don't shed a tear
Your heart is pure, your soul is free
Be on your way, don't wait for me
Above the universe you'll climb
On beyond the hands of time
The moon will rise, the sun will set
But I won't forget

Fly, fly little wing
Fly where only angels sing
Fly away, the time is right
Go now, find the light
................................
THANK YOU EVERYBODY FOR STILL PRAYING AND THINKING OF US AND LOVING OUR LITTLE GIRL!!

One Month Today

(Mom's turn) 1 month today...I can't believe it. It has been already a month...sometimes it feels like yesterday, in other ways, it is like years have passed, but still, we miss our little Vittoria more than ever. We miss her hugs and her little voice, her personality, her laughter, her soft cheeks to kiss, her clothes piled up in her closet, her shoes left all over the house, her toys left out, and her drawings scattered on James' desk.

How are we doing? We are ok, we have ups and downs, but there isnt's a moment during the day that we don't think of her. It feels like she is somewhere else, at school or at somebody's house. Our hearts ache and are broken, a piece will always be missing, but we know that she is not in pain and she is taken care of, and that's all that matters in the end. We are trying to pick up some kind of routine, I guess a new routine, but at least for me, it's weird: for almost 8 years, the days have been busy with doctors' appointments, medication, school, playdates and surgeries, and now they feel empty. But we are busy with her little brother Jacomo, who is the Energizer Bunny: always on the go, crawling everywhere, touching everything, but always with a smile on his little chubby face.

I imagine Vittoria whispering in his ear to do things just to keep us busy, so we don't think about how sad we are and focus on raising him and taking care of him.
I know some don't know what to say to us, there are no words to comfort us, at least not for me, but hugs don't need words.

Thank you for all your prayers in our behalf, for your love and support, for meals, yard sales, for the many hugs. We love you!

Little Angels

When God calls little children
to dwell with Him above,
We mortals sometime question
the wisdom of His love.
For no heartache compares with
the death of one small child
Who does so much to make our world,
seem wonderful and mild.
Perhaps God tires of calling
the aged to his fold,
So He picks a rosebud,
before it can grow old.
God knows how much we need them,
and so He takes but few
To make the land of Heaven
more beautiful to view.
Believing this is difficult
still somehow we must
The saddest word mankind knows
will always be "Goodbye."
So when a little child departs,
we who are left behind
Must realize God loves children,
Angels are hard to find.

---Unknown Author

More YARD SALE FUNDRAISERS Sept. 12

IN PRICE: Fundraising Yard Sale and BBQ chicken Saturday 8 am to 3 pm on Main Street next to Sonic and Bryner Photography in honor of Vittoria Frandsen. Thanks for your support. Please stop by and tell your friends and family.(chicken will be served ...around lunch time until it's gone) - THANKS HOMETOWN!!

IN SANDY : Fundraising Yard Sale Saturday 8 am to 2 pm at the @Home Realty Office 7985 South 700 East in Sandy in honor of Vittoria Frandsen. Thanks for your support. Please stop by and tell your friends and family. - THANKS EVERYONE!!

Ogden Yard Sale Big Success

THANK YOU - THANK YOU - THANK YOU!!!!!!

We appreciate you all for the help. The bills are coming in and we are approaching a million. Still not sure where we will end up after the insurance and such, but any percentage of a million is daunting. We are so grateful for the love and support that so many of you have shown us.

Thank you so much!!

Vittoria's Victory Yard Sale - Ogden

Vittoria's Victory Yard Sale - Sept. 5, 8am-12pm, 4600 South Harrison Blvd (Centennial Bank building parking lot) in Ogden. Feel free to bring your donations to the bank on the morning of sale. Call Scott at 801-589-5445 for details.

--Thank you Scott and everyone that is helping out. We pray that you will be blessed for your service and sacrifice.--

Pictures

I hope you don't mind, but I had these pictures on my camera and thought I would share them.

Awesome Yard Sale and BBQ

We want to thank everyone that participated in the yard sale and BBQ on Saturday. What a success. Kelly and Chris, James and Angie, Martha and Tyson and everyone else that helped to put it on....Thank you and big hugs! Everyone who donated and bought, you're awesome!

The BBQ was awesome too! That was some good eatin'. If you didn't get it... you really missed out.

THANK YOU ALL SO MUCH!!

August 29 Vittoria Fundraiser

Hey everyone,

Could you pass this info along to all you know? Thanks

THIS SATURDAY IS THE FUNDRAISING YARDSALE FOR THE FRANDSEN FAMILY!!!! 8 AM TO 2 PM! WE ALSO WILL BE HAVING AN AWARD WINNING BBQ GUY COME AND DONATE TIME AND MEAT. HE WILL BE FIXING BBQ CHICKEN BRISKET!!!! YUMMY! CHICKEN SANDWICH, BAG OF CHIPS AND DRINK FOR $5! WHAT A DEAL AND YOUR HELPING SOMEONE TOO! IT'S A GOOD DEAL AT HALF THE PRICE!!! THANKS! HOPE TO SEE YOU ALL THERE!

Angie Marsden
10114 S. 3490 W.
South Jordan

Vittoria Got Her Birthday Wish

As you know Sunday was Vittoria's birthday. It was a hard day for us.

We stayed in Price and Sunday morning the whole family, aunt, uncle, and cousins gathered at my parents house for a "Scofield Breakfast" (eggs, bacon, sausage, pancakes, potatoes,and even fresh melon). The camp chefs were set up in the back yard and we had a garden breakfast.

Watching all of the little nieces run around and play was hard. We kept expecting Vittoria to come around the corner, or open the door and walk in with that big smile. We kept having that urge to go check on her to see where she was.... you know, that parental instinct.

The reality was starting to set in...

We spent some time out with the animals. We took Jacomo to see the chickens, horses and cows. He was having a good time. We even watched Grandpa Neil and Uncle Garth work with the little colt to teach her how to be lead by her halter. Again, our thoughts were consumed of how much she loved to be there. She loved to go sneak up on and catch the chickens.

Vittoria wanted to have a big birthday party. All summer, she kept trying to get us to organize a "water" party, where they could run in the sprinklers, throw water balloons, have water fights and play in the wading pool. We kept trying to persuade her away from that because we know she would be recovering from surgery and that wouldn't have been a good combination.

Well yesterday, we gathered together at the cemetery to have a balloon launch in her honor. We decided that since 5:46pm was when she was born and died, that we would launch the balloons then. We had 30 white, lavender, and purple balloons. It was so cool. They went straight up, and up and up. I have seen several balloon launches but never one where they didn't get carried off. These went straight up until we could just barely be seen with binoculars. It was awesome!

That is about the time Vittoria got her wish. The sprinklers came on right where we were all standing. There was no escape! We all got wet. No warning at all. They just came on and nailed all of us. Ironically, the first sprinklers to come on were right in the middle of the cemetery where we were standing.

It took the sting out of the moment. That was our little girl letting us know that she was all right. We all had a good laugh and the little cousins just played in the water.... just like Vittoria wanted.

She got her birthday wish....

Thank You

Thank you all for your love and support. Please continue to pray for our family. It has been the hardest thing that any of us have ever had to endure.

We appreciate all who have helped us before, during, and still ongoing. It is humbling to know that our little princess could influence the lives of so many people. I know that you all will be blessed for your giving.

I have to say that the funeral was amazing. I know that she would have been pleased. Thank you all that helped out and participated. Everyone did a great job.

Thank you Jenkins-Soffe Funeral Home. You made this difficult time a lot easier. Thank you for the beautiful facility, fantastic service and leading us so gently down this difficult path. You have been unbelievable.

Thank you for all that attended. What a tribute and honorable send-off worthy of a princess. We feel so loved and honored to call you friends and family.

Funeral Via Internet

We have been blessed by technology! The funeral will be broadcast live on the internet so all of you that live far away can participate. You must email us By 10pm Friday night to get a link sent to you. It is limited and comes with restrictions... no recording, not to be made public.

Honor our Princess

Viewing:
Friday, August 21, 2009. 6:00pm-8:00pm
Jenkins-Soffe Funeral Home
1007 W South Jordan Parkway (10400 S.)
South Jordan, Utah 84095

Viewing:
Saturday, August 22, 2009. 10:00am-10:45am
South Jordan Utah Parkway Stake Center
9894 S. 2700 West
South Jordan, UT 84095

Funeral:
Saturday, August 22, 2009. 11:00am-12:30pm
South Jordan Utah Parkway Stake Center
9894 S. 2700 West
South Jordan, UT 84095

Internment:
Saturday, August 22, 2009. 4:30pm
Price City Cemetery (Next to Uncle Ralph and Great-Grandma Theressa)
595 E 400 N
Price, UT 84501

Sunday Evening The Battle is Won

Vittoria Giulia Frandsen, born August 23, 2001 at 5:46 pm, passed peacefully into our Heavenly Father's arms on her Grandma Bonnie's birthday, August 16, 2009 at 5:46pm.

Today started out well as everything was stable but the bleeding continued. Some clot had to be removed from the drain tube. At a certain point this morning, she started having issues with her lungs. After an x-ray, it was found that she had more liquid on the "good" lung. We took her to get a CT scan and it was revealed that she had blood inside her lung. It was also discovered that she had an infection around her heart. It was around 2:30pm that we found out. By 4pm, she was fading fast. The pressure in her chest inhibited breathing and the heart pumps were struggling to pump the blood. We had reached the point of no return.

We called the family to gather, but Vittoria faded so quickly. It was time to make that decision that I never, ever wanted to be forced into. We had to decide to stop support to let the suffering end. It was the hardest thing we could ever be asked to do, but every second had become a painful struggle. Words cannot describe the feelings of sorrow, guilt, pain.... utter agony we felt.

We take solace in the fact that we were there and able to tell her how much we loved her. That we knew she loved us and that we were honored and privileged to be the parents of such a remarkable perfect angel. We told her how proud she always made us. We made the best of the final moments God gave us.

We are comforted in our beliefs. Our religion has been our foundation. We know that the family unit is eternal, that we will be with her again. We know that God lives and is there with open arms as we have felt his arms around us so many times throughout the past few weeks. We have seen the miracles and witnessed the power of God as Vittoria was victorious in her valiant battle to live. Tonight, we witnessed the miracle of her passing, knowing that her tired little body was left behind, yet her spirit, unbound, is free and is now unimpeded by the physical struggle she has known for nearly 8 years. We believe that she was a valiant spirit that is as perfect as they come, with no requirement to be tried and tested in this mortal life. She is with God now, in Celestial glory. That is where our angel, our little princess is now.

It has been and still is an honor, a privilege, a remarkable opportunity to say that we are and to actually be her parents. WE LOVE HER! We love all of you who have prayed for us and for her. We Thank you for all of your love and support. Please keep us in your prayers in the days and weeks to come as we adjust to not having our little princess here with us. May God bless us and you. Goodnight

(We will post the funeral details in the next day or two)

Rain or Shine

Tori here. . . I was out at Eagle Mountain this weekend helping out my sister, so I stopped by the yard sale being held for Vittoria out there. The weather was not playing nice, so hopefully this coming weekend will be better weather for them. I was able to take a picture and purchase some DELICIOUS goodies though.

James and Val have some amazing friends. I just want to say thank you to EVERYONE who has been a part of this crazy ride with them. I know they love you and appreciate all that you have done and continue to do for them.

We love you James and Val and pray so hard for your little princess!

Sunday Morning Week 4

(Mom's turn)It's my turn to write today. This morning at 6:30 when we showed up to check on Vittoria, they were getting ready to repeat the bedside procedure of last night. Another clot formed in the same chest tube of yesterday. Her bleeding unfortunately is still about the same, today they will try more meds to get it to stop. Her moving around and becoming agitated sure doesn't help at all. So they will keep her paralyzed for a few hours to see if the meds will work or not. They also will try to reposition her feeding tube which she had managed to pull a little section out. We know that she doesn't like her breathing tube: she has been trying to chew it off with her teeth, I'm pretty sure she is frustrated because she want to talk to us and can't. It's heartbreaking. And now more than ever she needs a heart, time is really running out.
We forgot to mention yesterday, or maybe James already did and I'm losing it, that Vittoria moved her left hand and arm for the first time in 25 days, since she suffered the stroke during surgery. It was beautiful to see her fighting with her little hand.

In exactly a week, on the 23rd of August it will be Vittoria's eighth birthday. Never I would have imagined to be here, with our baby girl in the fight for her life.


My heart literally hurts. I want to hold her so badly and snuggle with her, and most of all I want to hear her little tiny voice say "Ti voglio bene mamma" (I love you mom). I miss her bubbly and happy personality, for now I'm glad to see her feistiness and courage are still there.
Thank you for your love and support. Please continue to keep her in your prayers.

Saturday Night Week 4

Today was a very eventful day. We have had the roller-coaster again today. The bleeding picked up so they had to start different blood products and meds to try to stop it. Then she started bleeding out of the bandages. Then they decided that the drainage tube was blocked by a clot, so they had to remove the clot inside her chest to open up the drainage.

On top of all of that, Vittoria is showing more and more attitude. She is aware of what is going on and is starting to fight against the nurses. She is getting better of telling them when she needs or wants something. She has developed a series of signs for different things like itching, wanting to turn, feeling cold and a couple others. She is so amazing, so strong.... so beautiful.

Today I had a chance to escape for a while (before I was urgently called back to the hospital) and go to the yard sale our friends in Kearns held for Vittoria. I was overwhelmed with emotion when I pulled up and saw what everyone was doing for us. Words cannot communicate the immense gratitude we feel toward you all. Thank you so very much. We also want to thank our friends at NAPA Balkamp for their generous contribution with the tool sale. Our dear friends from Eagle Mountain came to the hospital today and reported their success at their yard sale for Vittoria... despite the rain and wind. They decided to regroup and do it again next weekend. So many of you have done so many different things to help out. Thank you so much.

Our hearts are full of gratitude and love tonight. Despite the ups and downs of the journey, we have grown to love and appreciate so many of you so much more. I really have to thank those of you that have stepped into my roles in my profession and helped to carry forward my clients and responsibilities. Many of you have stepped up in ways that I didn't know about and am finding out about here and there as time goes on. I appreciate you all so much.

Sunday is my mother's birthday. A lucky day. Wouldn't that be the best birthday present she could ever have... a heart for her grand-daughter. That is our prayer and we ask you to join us, if it is God's will, that Vittoria can receive a heart, and soon.

Saturday Morning Week 4

Things are quiet here for the most part. After the busy long day yesterday, this is a welcome change. It is a good day to rest and try to relax and the weather sets the mood to do just that; cold and rainy.

Vittoria is hanging in there. She is still bleeding more than we would like to see but they are changing some things to try and help with that. She is transitioning to oral meds. It will be nice to get things going in a little more naturally. She is getting most of her intake orally now. That is a good thing. She is more awake and gets frustrated more easily. They have had to sedate her more through the night because she is tired of just laying there.

We are grateful for the fundraisers going on today. We hope that the weather cooperates a little more as the day progresses. Let's pray that a heart comes soon!

2 Fundraisers Saturday

Victory for Vittoria Fundraiser:
Yard Sale, Bake Sale, Boutique, Tool Sale (pallets of new tools from NAPA)
Saturday, August 15th 7am-4pm
4880 W. 6040 S. Kearns


Eagle Mountain: Benefit Yard Sale/Bake Sale tomorrow from 8 am to 12 pm. Come and satisfy your sweet tooth and help Vittoria!!!!! 2378 E Summit Way, Eagle Mountain

Friday Evening Week 4

I guess I get to write again without ranting and raving. All the little stuff was taken care of today. We are making some progress with the visa extension for Val's mom. We have some bigger guns behind our cause. Tomorrow is a new day with many positive things happening. We know of two yard sale/boutique sale/bake sale/tool sale (NAPA donated crates of tools is my understanding). We are so humbled to have these things happening for Vittoria. Thank you, thank you , thank you!

Today was a big day for Vittoria. They first changed her arterial line, then they put in a pic line. Then they changed her dressings. She had an echo. All that moving around and now she is bleeding again. We are praying that it slows down. She was very awake this evening. We had some precious time with her and looking into those big gorgeous brown eyes. Our hearts melt being able to see those beautiful eyes. She wants so badly to talk, trying to pull the tube out of her mouth. We lost it when she looked her mother in the eyes and just started to cry. It was such a sad moment knowing that she had something to say but can't let us know what it is. I'm sure she is frustrated. We keep telling her how proud we are of her and how brave and strong she is. It seems to calm her down and give her strength.

It is late and we are tired. We will be praying that the bleeding will stop and that we can get the heart soon. Please join us. We can feel your prayers.

Vittoria's wall and cute braids

Friday Morning Week 4

(Mom's turn)Vittoria had a pretty stable night, she is being very brave, especially when they have to give her 2 shots a day on her leg on top of everything else. She is my hero! They are changing her arterial line as I write, it's been bleeding a lot, so they are trying to put it in her other hand. They gave her some muscle relaxant and some sedative and still she was moving her hand back and forth. She is sure fighting, good for her! As the weekend nears, I realize that time is running out, she needs a heart desperately. Thank you for all your prayers, without Faith, Family and Friends I don't know how we would make it through each day.

Thursday Night Week 4

Do you ever just feel like Job in the Bible?? I can't believe how difficult little things can be all at one time. We have everything going on with Vittoria and we know we have a long road ahead of us. We have been working for days on trying to get Val's mom an extension so she can stay in the U.S. for a few months until we get things settled down. It seems to be impossible. The government agencies keep sending us back and forth in circles. In the end, we are told that she can return back to Italy and start all over again with the risk that they will not let her back in. Get another Visa... how many months will that take. This great country is supposed to be such a humanitarian nation... LIKE HELL!!! Only when it gains some political ground for somebody. I'll bet that if Obama's little girl was laying in the ICU precariously perched on the line between life and death and his wife's mother was from another country and intended to stay a couple months but their life turned into our nightmare, I'll bet there would be a very simple answer. I'll bet that there wouldn't be any question. You know that THEY would be taken care of.

Sorry I'm on a rampage tonight. Somebody put a big scratch the whole length of my Jeep. Val went to pay for dinner at the cafeteria with one of their pre-load cards and $70.00 disappeared from the card. It bought breakfast this morning but has zero balance tonight. The list goes on today. I know it's not important in the grand scheme of things but it is really annoying to have to deal with this garbage on top of everything else.

Now that I have ranted, let me tell you about Vittoria. She is so strong and brave. She sleeps with all the meds they give her, but she has a lot of times that they work on her to turn her and clean her and inspect all the tubing and .... it is amazing she can sleep. When she is awake, she tries to help them move her. If they need to place something under her, she pushes her heels and shoulders down and lifts her little bum off the bed. Considering her situation, that is pretty impressive.

Today, the nurse asked her if she wanted her to play "Taylor" (Taylor Swift) and her eyes popped open and she shook her head yes. I wish Taylor knew how much of an impact she has on this little girl. Her music is the highlight of Vittoria's life right now. Music heals...

Well, I need to settle down and try to sleep. I have been way over stressed today. As I pray tonight, I will ask for the most precious gift, a heart for my little princess. Please join me and pray for my little angel.

Thursday Morning Week 4

Not much to report this morning. Things are pretty stable and Vittoria is still fighting and holding her own. The bleeding is about the same but it is the clearer drainage that is healthy. We are holding a balance and the nurses are being great taking care of Vittoria as if she were their own.

We are pretty tired so we are going to get some more sleep ourselves. We will write more a while later. Please pray for the gift of a heart.

Wednesday Night Week 4

We have had a pretty good day. Things have been stable and we are holding on. We have had a chance to relax a bit. We are grateful for this.

Vittoria has been sleeping and resting most of the day. It has been nice to go in and hold her little hand and just be with her. She is still helping the nurses to get it right when they turn her and move her. She is so funny how she just has her own ideas and she gets what she wants.

We are on borrowed time. This needs to happen very soon. I have been telling everybody that it would happen Wednesday. We have about an hour and a half left. I had a friend ask me what I pray for today. I didn't answer thinking this was too personal of a question but I think I have shared it a few times before. I pray that if it is God's will that we have a heart, that he will bless and comfort the family that has experienced the loss and that they may have comfort knowing that their gift gave a second chance to one very amazing little girl. That is my prayer. I don't want to be selfish, but I want this little angel to have the opportunity to bless the lives of everyone she comes in contact with. She is touching the lives of so many people right now as she fights and God gives us these miracles that have brought her to this point. We have seen many miracles and 4 big ones that have changed the course of this story. We are praying for a heart and quick. Please join with us. Pray for our little princess, Vittoria, that she may get the second chance and receive this precious gift... a heart.

Wednesday Morning Week 4

Here we go into another day. Not a lot to report this morning. Things are basically stable and haven't changed much. That is what we like. Slow and steady.

Vittoria is being a drowsy little trooper. They keep hr pretty sleepy but she is definitely opinionated and likes her own way when it comes to turning her and positioning her on the bed. She keeps doing it her way. I just laugh at the nurses as they work with her and it's almost like she is rolling her eyes and moving into her own positions. That's right girl. Let them see your feisty personality.

We are so humbled by the outpouring of support from all of our family and friends. The PayPal account that our dear friends set up has been amazing and we have been told that the anonymous donations have been coming in from all over the world. We have had some of you hand us cash and send us money to help out. Meals have been brought to us here at the hospital. Yard sales, tool sales, bake sales, BBQs and benefit concerts are all being done for Vittoria. It is amazing! We have had several groups of kids do lemonade stands. It is an emotional moment when a dear sweet little child comes up to me and hands me a ziploc bag full of coins and cash and are so proud that they could do something to help their friend or cousin. It brings tears to my eyes every time. It has always been difficult for me to accept help from others. I am learning a very powerful lesson in humility at this time. Thank you all so very much. I can't wait to show her all of the many things that you all have done.




Thank you all and may you all be blessed.

Victory for Vittoria Fundraiser:
Yard Sale, Bake Sale, Boutique, Tool Sale
Saturday, August 15th 7am-4pm
4880 W. 6040 S. Kearns
(donations can be dropped off Friday 1pm-8pm)

Tuesday Night Week 4

We can't believe that it has been 3 weeks. This place is like a time warp. It seems like we just got here but so much has happened. Unbelievable ride!

We had a "care conference" today. Basically a bunch of doctors and specialists sit down with us and discuss where we are and where we are going. I guess we will do that once a week.

Basically we are at a good point to get a transplant. The scary thing is that this is a very fragile window of opportunity and we are on borrowed time. Everything needs to remain at least constant or improve. We need a heart soon.

Vittoria is pretty awake even though they sedate her quite a bit. She moves a lot on her own and answers the nurses questions. She is getting a bit more feisty with the nurses. If she doesn't want to turn a certain way, she won't. She'll move herself to where she is comfortable. That's the strong little personality we love and miss so much.

All that is happening and with all of the possible obstacles we could face, we are holding up well. Granted, we have our moments, but we feel a peace and a certainty that we are on the right path. I am so grateful for our religious beliefs and all of the support we receive from it. We feel very blessed and feel that God's hand has been at work in this whole process. We continue to pray for a miracle and we pray for the family that will be affected by a loss that will give Vittoria a second chance at life. We believe it is all in God's hands and we are along for ride. Please pray for all of us, and especially, continue to pray for our little princess, Vittoria.

Tuesday Morning Week 4

(Mom's turn)- Another little miracle in Bed 8: Vittoria had a stable night, her bleeding has decreased some and she is still fighting. I have no words.

And that is all she wrote... my turn. Not a lot to report. We will have a little meeting today with all the doctors and see what options we have and what direction we are going. Everything has improved except the bleeding. That has to stop. The bleeding has slowed and we are praying that it continues to diminish.

Vittoria looks pretty good for everything she has been through. She is nice and pink and sassy. She lets the nurses know when she isn't comfortable and is a bit defensive this morning. You go girl!

We are tired but hanging in there. Some nice calm quiet days would be nice. We will see what today brings. Keep us in your prayers and especially our little Vittoria.

Surgery Report

Again we are left hanging on to hope while fearing the end. The surgeon basically came and told us that surgically we are at the end of the road. Nothing more can be done. We will have to wait and see if she will stop bleeding on her own. The new tubes are heparinized so they won't have to give her heparin doses (blood thinner). We are praying that she will stop bleeding and rally. That is the only path we have now. She needs to stop bleeding, regain strength, improve her lungs and kidneys and then be ready for transplant. If the bleeding does not stop, nothing more can be done.

Our hearts ache but we are strangely at peace. I guess we wait and see which direction it goes. We wait and pray and pray and pray.... that is the only thing we can control at this point. Please join us and continue to pray for our little princess.

Monday Evening week 3

(Mom'a turn) Well, it's 7:30 in the evening and Vittoria has been in surgery for about 2 hours now. Yep, another surgery....today they decided that the circuit on the pump needed to be replaced, since it started to show some clotting. The tubes will be replaced with some anti-coagulant tubes, which shoud help with the anti-clotting process. Also they will do an echo to check the status of her heart and explore her chest cavity to find the source of all of this bleeding. Our little sweetheart is still fighting and being brave.I'll post more later. Thank you for praying for our little girl![...]

Middle of the Night Sun/Mon

No wonder we sleep here at the hospital. Around 215am we got "the knock" on the sleep room door. Not the way you want to be awakened. It is never good when they come to get you...

Vittoria developed a clot on her arterial side of the machine. That is a dangerous thing because if it were to break loose it would go somewhere and cause a stroke. So they let us know that they were going to clamp off all of the machinery and cut out a section of the circuit. No big deal unless that is what moves your blood through your body. It is like saying, "Let's stop your heart for a minute or two while we cut out a piece of artery and splice it all back together..."

All went well. I was able to sit right outside the door and watch everything take place. Vittoria did really well. She maintained her blood pressure and all went okay. The staff was awesome and worked so efficiently and quick to get the job done in less than a minute. Later today they will replace the whole circuit. We will get to see them in action again but have it planned this time.

As you can imagine, we are not really sleepy right now so we are telling you all about our little wee hour of the morning adventure. Thank you doctors and staff for waking to the page and coming in on very short notice.

Once again, please keep our angel in your prayers. Oh, how we need lots of prayers! Thank you all for your love and support and for all of the prayers. Please keep it going!

Sunday Night Week 3

My heart hurts. We have had a down day today. The bleeding had picked up, so we took counter measures, and now slowed down, but in doing so we now have a little clot in the machine. Now we have another issue to worry about. It feels like we are going right back to where we were a week ago. We don't want to relive that awful terrible nightmare. I feel like our life is balancing on the point of a pencil. To correct one problem, we upset another, then it is a never ending cycle of upsets. Why can't we find that balance and maintain it? Good question....

We are feeling a little bit like bad parents right now. Our presence and talking to our princess is upsetting her. They have been taking her down in the different sedatives to find that place where she is comfortable yet somewhat awake. Well, tonight she was a bit agitated. She was moving a bunch, which will cause more bleeding, and we tried to talk to her, she became more agitated. We had to get out of the way. When we went back in, our nurse gave us the hammer down to not wake her up when they sedate her. It is so hard. We have been her parents for 8 years and we have to leave it to someone who has known her only for hours. It is terrible having to take a back seat. Here is our eight year old little girl, waking up because they have to stop giving her so much of the sedative. She is in a cold room, in pain, hearing strange voices, with her eyes taped shut. I'm sure she is feeling scared, vulnerable, alone.... and her parents are not able to talk to her, to reassure her, to hold her... THIS SUCKS!

I am here writing this, angry, embarrassed, helpless and my heart is breaking because I can't do a damn thing to help. These last 19 days are weighing on us. We are growing more and more frustrated with being so helpless. It is so hard not knowing what tomorrow will bring. Any minute could be her last. We just don't know. Are we going to improve? Get worse? It would be so nice to know. For now, all we can do is pray and hope for a miracle. Please keep us all in your prayers, especially our little Vittoria.

Sunday Morning Week 3

Welcome to the roller coaster. When you think you are making progress, you then take a step backwards and maneuver through another obstacle. It keeps you stressed.

Vittoria had some pretty good improvements over the past 24 hours. Her lungs have improved. The x-ray confirmed it this morning. Ker kidneys are working a little better. She is less swollen and looks more like the skinny little princess we all know. However, She is now bleeding a little more. Okay, quite a bit more. We hope and pray that they can get that back under control. That is a scary path we have been on and do not want to go back to.

So today we will hang out, visit with our little angel and wait to see what happens next. The waiting game sucks! Patience... patience..... patience..... yeah right! Please keep us in your prayers. Pray for our little Vittoria!

Saturday Night Week 3

Another day has gone by. It is amazing how time is so scrambled here inside the hospital. I can't believe how fast the clock is ticking here. We are pretty much in a routine but it seems like time jumps forward without us realizing it. Again it is 10pm and I am just sitting down to write.

Vittoria has done well today. Her lungs are clearing up a bit. I can't wait to see what tomorrows x-ray reveals. They have been sounding better and she is on less and less oxygen. She has even been passing the liquids out very well too. As our very funny South African nurse says, "she's peeing like a race horse..." Doesn't sound that exciting but considering where we have been the last little while, it is exciting news.

Vittoria has had her more awake times. It is so nice to have her acknowledge that you are there and answer questions. I can't wait until we can get the breathing tube out and she can talk with us again. I miss that cute little voice. I can't wait until she can let us know how she feels and what she wants to do. We miss her dearly.

As another Sunday comes around, please keep us in your prayers. We need that big miracle, the gift of life. Please keep praying for us and especially our sweet little princess, Vittoria.

Saturday morning Week 3

So we were slackers last night and didn't write. Sorry about that. We had a bit of a situation going into the evening. We had to find out why Vittoria's left lung collapsed. They did an x-ray, echo and finally a scope inside. I have seen the inside of m daughter's lungs. Now how many parents can say that.... We found that the lungs are pretty healthy on the inside and were being smashed by something outside.

Vittoria had a quiet night for the most part. We haven't seen the latest x-ray and labs but her lungs seem to be a bit better, and she peed a bunch through the night. Oxygen was cut below 50% and it looks like her kidneys are working better. We will take that all as positive news. Now we just need a heart and we will have i made!

We are tired... In fact, I keep dozing off while I write. We had friends bring us in Hires burgers last night and I am still stuffed. Comfort food is good. The stress makes you lose weight and the comfort food puts it back on, so we should be about even...

Thank you all for your kind words, visits, and all of your prayers. It is a scary time for all of us. We appreciate the outpouring of love and help. Thank you all and keep praying for our little princess Vittoria!!

Friday Morning Week 3

(Mom's turn)-Vittoria had a stable night, which is good, she had her hair washed and braided again and she looks so pretty, just like a sleeping princess. Her eyes are taped shut with some gauze so that the swelling can go down and she also is under some lights to warm her up. They have been giving her a little bit of blood since last night. Some of her tubes have been draining some blood, probably some old blood by the look of it and they keep taking some out for testing. Right now they are putting in a hemofilter so that some of her swelling all over her body will go down and her kidneys and lungs will get a little bit of help to improve. I'm so proud of her, she is being so brave and even though she is scared at times, she is still fighting. I have been thinking about her little heart lately: it's so sick but so PERFECT in my eyes! The more time goes by, the less chances for healing, but in spite of all, I find myself dreaming that one day she wakes up and it's completely healed and there is no need for a transplant. Anyway, I guess every mother can dream.
Thank you Family, Friends and Friends whom we haven't met yet for all your prayers and love and support. We love you and we appreciate all you do for us. THANK YOU AND KEEP PRAYING FOR OUR PRINCESS!!

Thursday Night Week 3

We had a quiet stable day. Not a whole lot going, which is good. I spent the day taking care of the financial side of things. It is amazing how many programs are out there for people. Now it is a matter of wading through it all to see what programs we can qualify for. I feel like I am trying to apply for scholarships for school.

Vittoria behaved herself today after the escape attempt at 5am. I guess she had one foot out and was trying to pull off the sheets and run away. They had to restrain her and sedate her. We like fight.

We were able to talk with her tonight. She nodded, shrugged shoulders and tried to push the breathing tube out with her tongue. We talked about the Taylor Swift picture and her song and that was the happiest I have seen her for quite a while. I guess you take the little things for granted in life.

We are still a go for the transplant. What a mixed range of emotions. We pray for a heart and pray that if it is God's will that we should get it, that the family who experiences such a loss may be comforted in knowing that another life was saved by that precious gift. We have experienced those feelings first hand as we have ran out of options and had no hope that our little girl would make it. We basically said our goodbyes twice now and then a little miracle happened and she was granted a little more time. It is obviously not her time to go... We pray for the ultimate gift now and pray and pray and pray. It is our only option at this point. We are on borrowed time. The machines can only sustain her for so long. Our princess is waiting for the greatest of miracles... LIFE. Please pray for her....

Thursday Morning Week 3

Good morning. Things are steady and stable for the most part. They had to make a few adjustments throughout the night. We like steady...

Vittoria is a fighter. At 5am she decided that she had enough of just laying around and tried to get out of bed. That is a good thing but not what we want right now. She fought them a bit and in the process made some of her tubes bleed. In the end, they sedated her more and gave her a paralytic. So much for our interaction with her for most of the day...

She is a fighter. We are so proud of her. We can't wait until we are able to see that big personality expressed again. We need the miracle of life. Keep her in your prayers!

Wednesday Night Week 3

Tonight I will be short and sweet. We are tired and want to get to bed early. We are feeling the physical drain now. The last thing we need is to get one of us sick.

Vittoria has had a pretty quiet day. Slow and steady, just the way we like it. She is kept a little lighter on the meds so we have been able to visit with her more. She is able to interact with the nurses and let them know when she needs more pain medicine or if she is comfortable. She has been a bit frustrated at times. She has a right to do that. I can't say I don't blame her.

They even put a feeding tube in to start feeding her again. She has a way to go before she will be eating steak, but it is better than just living off IVs. A teaspoon and hour is all we ask for now. Hmmmm. I guess that beats Jenny Craig any day...

Well, it is late. We are tired. Many things to do tomorrow. Keep praying for our angel. She needs a heart if she will ever leave the ICU and even go home. Just one more miracle. That's all we need.

Video of Vittoria May 2, 2009

BLOOD DRIVE

The director of the blood bank stopped by to see what was going on. We went from 20 units a day for nearly 2 weeks to just a couple products in the past 4 days. I think he came to see if we found another supplier. Just kidding... That is not why he came. He asked us to help get the word our on a blood drive that will be held here at Primary Children.

BLOOD DRIVE
Primary Children Hospital
Multipurpose Room, 3rd floor
Tuesday, August 11
7:00am-2:00pm

Please come and support this drive. We definitely used more than our fair share. Recently, they had to call into California and Nevada to bring in more blood. Let's help them out! Do it for them and do it for Vittoria!

Wednesday Morning Week 3

h. 7 am-(Mom's turn)- sorry for the last on line post: I accidentally pushed the "publish post" button, see that's another reason why I don't write posts, anyway let's give it another try. After a few hours of sleep, I went to see how Vittoria spent the night. Her little kidneys are still ok, but the numbers are higher so her urine output is not as much as the past couple of days. We are waiting for the doctors to do their rounds and come up with a plan. When I thought that things started to look better and her condition was improving, there is another setback. I just pray that they can get her kidneys to function again like before and that she is still a candidate to receive a heart and that she is fighting....well I know she is: at 4 am she started to get mad at the nurses,(she has EVERY right to), moving around, with a little frown on her face. They gave her some meds to calm her down, since too much movement can cause her tubes to come out of her heart, but she wouldn't. They finally succeeded, reassuring her that we were there and that she was ok. It's just heart wrenching to know that she is so agitated and sad: I just want to grab her and hold her tight like when she was a baby, comfort her and see her smile.

Tuesday Night Week 3

I am back and not a lot has changed and that is so AWESOME! I left for a few hours and attempted to pay bills and get caught up on some bookwork... I had to fire myself. I cannot believe how stupid I got while I was here. It took me twice as long to do things. It is not a good idea to use internet banking while under the influence of extreme stress. And I just don't care.

Vittoria is stable. I say that tongue in cheek. Considering that she is dependent on two pumps to survive. ( http://www.levitronix.com/Medical.OUS.php ) She is on a ventilator and about 8 IV pumps to push all sorts of meds. So we like precarious living at its finest. The fact that I call this stable is even crazy to me. I guess if you are in ICU and have at least 2 nurses by the bed at all times you are technically in critical condition. The exciting thing for the day is that she is peeing more. Yes I just wrote that. If you have ever had a really sick kid, urine is a really cool thing. This means her kidneys are improving more.

Another highlight for the day is that Cousin Mindy just got back from LA with a personalized signed picture of Taylor Swift. What a sweet, tender, act that was a sweet moment in a tough day. Vittoria woke up and saw it. Seeing those big brown eyes open up long enough to see it was the highlight of my day. Then she started to cry as I read to her the words Taylor Swift wrote. The tender mercies that so many have shown us are humbling. I cannot express my gratitude for the kindness shown for my little princess. Thank you Mindy and thank you Taylor Swift for taking a few minutes in your very busy schedule that has impacted the life of my little angel. Thank you!

We continue to pray and hope for a miracle. I thank you all for helping us along the way. Please keep praying for daddy's little princess!

Mom's turn-

As you know I don't like to write, but after this weekend I really don't care anymore. Family and friends know me and at this point it's just a another way to let it out besides crying. You see, I have never thought in my worst nightmares that one day we could be in this kind of situation, the heartache I felt these past two weeks was the most painful, exhausting and scary I have ever felt in my whole life. Not even when Vittoria was born and taken to Primary Children's and later diagnosed with Marfan Syndrome, I have ever felt so sad and desperate. The only thing can kept me going was Faith and the fact that despite everything, Vittoria was still fighting. When the situation worsened on Sunday and we were told that everything humanly possible had been done, our hearts were broken to see her going through so much and there was nothing we could do about it, so I had to do the most difficult and heartbreaking thing that I have ever done and very hard for me to share right now: I had to tell my baby girl that was ok if she was tired of hanging on, it was ok to give up the fight, that we were proud of her, always been , always will, that we would always love her, and that she could take care of her siblings that never made it and walk her beloved dog. My heart was shattered and I felt like I had aged a thousand years, and then later that evening, the surgeon came to us with ONE last try. The rest you know. She is still fighting and even though it will be a very long road ahead, we'll take care of her better than we ever did.

I can't believe where this week has taken us. The ups and downs and the trial of our faith. I am so grateful for the faith and prayers of family, friends and total strangers. Thank you. Please keep praying for my baby girl. Goodnight

Bills... We all get 'em

Since I posted earlier I have gotten a ton of messages about my comments. I guess I better elaborate... Right now we are not worried about the bills. We don't care at this moment. It will all work out. It is all worth it. I was goint to pay my regular houshold bills two weeks ago after surgery and things were calm. I never imagined living in the ICU for 2 weeks. Now that things are a little more stable, I need to face the real world and take care of normal business. I also manage some rentals and have to take care of those bills too. I am not worried about the hospital bills. I would just hand everything over to whomever at this point and start over. Right now the focus is on sustaining life and getting a transplant. We will worry about the rest later.

I am grateful for the donations and fundraisers for Vittoria. It will definitely be a huge help as things settle and we find out the costs we are responsible. Maybe we will end up in mom and dad's basement. Who cares at this point. What we do for our kids!

I believe that God has always provided a way for me to accomplish what I have needed to do and I firmly believe that as long as I live my life the way I am supposed to, He will provide a way for me to handle it.

Tuesday Morning Week 3

Wow! Two weeks down and going into the third. I can't believe it. Time just gets distorted here. Some times it goes quickly. Other times I look at the time ever five minutes. This is probably because there are not any windows where we are at and the lights are always on.

Two weeks ago this instant we were happy, care-free and laughing about how excited Vittoria was to have surgery. The last time I saw her smile was as she skipped down the hall holding the anethesiologist's hand, looking up at him smiling and him looking down at her smiling. Then they told us how much fun she was as they got her ready to operated. She asked for cotton candy flavored sleeping gas... just like always. And now we are living a nightmare that I could never have imagined... Now the only way for it to end is to be blessed with a successful transplant.

Vittoria is a trooper. She is pretty stable for the most part. Thank heavens! She has better lungs this morning so that is exciting. Kidneys are improving a little but that has been really slow. Something is better than nothing.

I am off to go home an pay some bills.... I guess there are some that will just have to be late.... I really don't care at this point. I just have to keep reminding myself that the world has just kept turning since we got here. You know what they say about hospital bills, "the bills beat you home." We have found that is true, they have beat us home. I won't worry about them. They know where to find us.

Well, I have to go. Please keep praying for our little angel, our baby girl, our princess. We love her so much!!!