Monday, August 31, 2009

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.


Wednesday, August 26, 2009

August 29 Vittoria Fundraiser

Hey everyone,

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


Angie Marsden
10114 S. 3490 W.
South Jordan

Monday, August 24, 2009

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.

Friday, August 21, 2009

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.

Tuesday, August 18, 2009

Honor our Princess

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

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

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

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, August 16, 2009

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, August 15, 2009

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!

Friday, August 14, 2009

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, August 13, 2009

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, August 12, 2009

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, August 11, 2009

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.

Monday, August 10, 2009

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 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, August 9, 2009

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, August 8, 2009

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, August 7, 2009

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, August 6, 2009

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, August 5, 2009

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


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.

Primary Children Hospital
Multipurpose Room, 3rd floor
Tuesday, August 11

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, August 4, 2009

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. ( ) 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!!!

Monday, August 3, 2009

Monday Night Week 2

Another day has gone by and we are still hanging in there. It has been a tough day on us. We are so physically exhausted after the past few days. Though tired, we are so grateful that we still have the opportunity open for our little angel.

Vittoria is doing much better than she was. She is only bleeding in the amount normal for post surgery recovery. She is pretty stable right now. They are increasing the heparin to thin her blood again so they can slow the pump down. It is such a balancing act to keep her alive. I admire the staff here and the vast knowledge that they have. It is incredible. I guess we do have the best of the best working on her.

We are now getting ready to call it a day. The realities of the situation hit me hard this afternoon. I realized that the only way we will all walk out of here is after a successful transplant. I pray it all works out but can't help but worry about the long wait. I already have people telling me that I am grayer than ever, look older, losing weight and I feel like my own heart is going to need treatment by the time we are done. We know that God's will is to be done. We will pray for the help. We know he is listening. If you don't think so, then I suggest you go to the beginning of this blog and read through what has happened so far.

We thank all of you who have been so close and supportive. We thank all of you who are praying for us and for her. So much faith has been exercised. We thank you all for your faith and prayers. Please keep it up! Please keep praying for our little princess.....

Monday Mid-Day Week 2

Sorry about the late post today. As you can probably imagine we are exhausted and we have been taking turns sleeping a bit yet keeping up on our regular routine. We are humbled and grateful for our little miracle last night...

Vittoria is doing better. Her lungs are clearing up and the kidneys are picking up again. Bleeding has been minimal. We are keeping our fingers crossed that we can stay on this path. We have that precious gift of time again to wait on the transplant list again. We have a long road ahead of us.

Gotta go meet with some doctors. Keep us in your prayers. He is listening!

Another Miracle

Unbelievable! She is doing well. The surgeon didn't find any bleeding where he thought he would and was able to cauterize her chest wall where she was bleeding. She isn't out of the woods yet but things are brighter now than they have been for 10 days. We are so grateful to her surgeon because he was inspired and took a chance. We are grateful for the rest of the doctors, nurses and staff that believed in our little angel enough to take the chance. We are most grateful to our Heavenly Father that has given our angel an opportunity to linger a little longer with us here. I don't know the future but I am optimistic. If it be God's will, she will get a transplant and live to inspire and influence the lives of many. If we keep this up we will definitely be writing a book. Please thank God for our little miracle and please continue to pray for us and especially our little princess!

Sunday, August 2, 2009

Sunday Night Week 2

My heart is aching right now. We have had a very draining day. We were again faced with few options. By this afternoon, we called the family together again to say goodbye. We had that dreaded discussion with the doctor about when to decide to stop life sustaining activities and let her pass away. As we were facing the end, her surgeon came to talk to me about a last ditch effort to stop the bleeding. The bleeding is basically the root of most of our problems. It is almost midnight and Vittoria is in surgery. We are to the point of aggressive measures. We know that there is a high probability that she may not survive the surgery. When faced with desperate alternatives you must choose between desperate measures. I pray that she will forgive me if we are wrong or we will rejoice together if we were right. We saw one miracle already. I know in my heart that we are on the right path.

We had a very special moment before they took her back. She was awake and responding to us. We told here we were there and that we were not going anywhere. We told her it will be alright. We told her that we loved her more than life itself and that we knew that she loved us. She shook her head and began to cry. We told her that our Heavenly Father was with us and with her and that we will be proud of her and be okay with whatever she chose to do. She nodded her head. We held her hand and talked to her. I know she was scared and trying to be so brave. How we both wanted to hold her close and take away the fear. If only it were so easy.

So here we sit, praying, talking, waiting.... At any minute they could enter and tell us it is over. We are waiting praying and our hearts ache. We want the nightmare to be over and our Princess to stop suffering. She is so strong. She has been so brave. God is with us. God is with her. God is with her surgeon. We will be praying in gratitude for our miracle or in gratitude that our Heavenly Father called her home to his loving arms. Please pray for her and for us. Goodnight...

Sunday Morning Again

Not much to write since last night. Vittoria is bleeding a little more. She is being so tough. We are on borrowed time right now. We need a heart...

I wish I know what was going to happen in the hours, days, and weeks to come. She is hanging in there for a reason. It has to be. We wish we knew what that was.

We don't wish a tragedy on anyone. It breaks our hearts to think that is really the only way our child can live. If it wasn't for that sick little heart we would be walking out of here. I would give her mine if I could. All we can do is pray, and pray, and hope....

Saturday, August 1, 2009

Saturday Night Week 2

Today was a relatively quiet day. It was nice to be surrounded by family and friends. We are exhausted after the episode of last night. We are planning to turn in early tonight.

Vittoria has been remaining stable throughout the day. As they were scanning her kidneys with an echo, they noticed a pocket of blood near her left lung. They did a procedure and got it draining... now it won't stop. Whether it is a bleed or the procedure that caused the bleed, who's to say. She is on a lot of heparin to not clot up the machine. They will try a few things to try and control the bleeding. The poor girl. They have kept her heavily sedated and paralyzed for the time being. We don't need her moving around right now.

The nurses and doctors are amazing. They work so hard for my princess and all of the other kids. Vittoria is kind of special, she gets two or three at all times. We are so grateful to them and their determination and compassion, not only for Vittoria, but for us too. I can't tell you how many times a nurse has given Val and I a hug. We have needed a ton of them. It is amazing how many times a nurse has found us in the cafeteria on their way home to stop and give us a hug and encouragement. That is someone who really truly cares with all of their heart.

We know that we may be on borrowed time. Vittoria is fighting. Even some of the nurses and doctors get chills when they talk about last night. I know it is in God's hands and if it is His will, a heart will be provided. At this point, I dare not speculate on where we are headed. I just know that God is listening and we are just following His lead at this point. We are praying we will know what to do next. Many people will be fasting and praying for our little angel as we go into another Sunday. We thank you. We pray with you.

Please keep us all in your prayers!

The Miracle Witnessed

Thank you all for your love and support and all of the many many prayers. God is listening as witnessed in this hospital last night.

As you know, Vittoria went into surgery yesterday afternoon around 2pm. The transition to the new machine happened without a hitch. She is getting enough oxygen with her own lungs. All went pretty well except the bleeding in that little coronary artery that has been the problem all along. They couldn't get it to stop. The more they tried, the less they had to work with. After many hours, around 9pm, the surgeon came to speak to us. He explained everything in great detail and let us know that there was nothing they could do. He would basically return to the OR and close her up, bring her back to the ICU and let us share the last few hours with her before she passed.

We gathered the family and a few friends that were here at the time. Words cannot express the flood of emotion you feel of hopelessness and deep, deep sorrow. I cannot tell you how many time I hit my knees, pleading and praying for some type of understanding, of comfort, of peace. I felt that peace. I believe as a person passes that a veil is lifted and we are very close to heaven. I experienced it when my grandmother passed away and we were all at her bed-side. I thought that was what I was feeling. We knelt as a family and prayed. We waited for what seemed an eternity. Val screamed at one point that she cannot plan a funeral for her baby girl... I don't know what is worse, losing a child or knowing that you are about to lose a child.

They brought Vittoria back to the ICU. The nurse came to get us in the conference room they let us borrow to gather the family. She was smiling. We all thought that it was a little inappropriate. Val and I went back to be with our baby girl... Everyone was happy! Strange... One of the doctors explained that the surgeon had an idea to give it one last ditch effort and miraculously succeeded for the most part. It wasn't perfect but it was holding. The surgeon later came and explained that he had basically created a badminton basket looking thing out of some type of repair material to hold things in place. It was working...

Things are not perfect, but when are they in the ICU? Vittoria is holding her own for the time being. There are some clots that formed in her pump circuit. That is a dangerous thing. The tide could change at any moment. Our only hope is that a heart becomes available... and soon!

We are fighting. Vittoria is fighting. God is blessing her with a little while longer. It may be a long road... a short road... If only we could know. Right now we will love her and be by her side and pray.

I have learned to pray like I have never prayed before. We all have. It is impossible and sometimes inappropriate to share what has happened to me as I have prayed for my little princess. I know God is there and that sweet Vittoria is in his hands. I am not sure what his plan is for her, but I do know that our Heavenly Father does know us and especially her. His spirit is here in this hospital with us and so many of these precious kids and their families. Keep praying for our little Vittoria!