Italian Soccer Fans Love Vittoria

"VITTORIA DON'T GIVE UP!!" -This banner was done by the friends of Vittoria's Uncle Andrea at the Roma vs. Gent in the Europa League match. Thank you all for your support. It is amazing the global influence this little princess has. 35,000 fans were in the stadium and who knows how many people saw it on TV. We are overwhelmed by the love of people we haven't even met. God bless you!

The Cousin's Lemonade Stand

(Aunt Jana writing)

Two days ago Nati was wanted to play with one of her friends and have a lemonade stand. I was busy at the moment taking care of some business calls and put her off for a moment. Then she came back in and said I have a great idea. Can we do a lemonade stand for Vittoria and can I call Taylor and Rylie and see if they want to help? So by 3:30 they were set up and selling lemonade and rice crispy treats at the end of our driveway. It the mean time Tori and I (mostly Tori) made a poster to help the girls advertise. Yesterday, they set up their lemonade stand at the end of Taylor and Rylie's driveway and were selling lemonade and cookies. Both days they had friends show up wanting to help. They have been so excited about their little business they put together to help Vittoria. They have been talking about other locations that they might be able to set up and raise more money. They have been listening to us adults talk about fundraisers and decided to come up with their own, how clever. They are amazing kids!!

Friday Morning Up-Date Week 2

I can't believe it's Friday again. What a ride. We are so grateful to all of you who are praying and pulling for our little Vittoria. She is being so strong. We are doing our best to keep it together. Yesterday turned out to be a tough day on us and a little scary for her last night. Thank heavens we have family and friends to help get us through. We couldn't do it without you!

Today will be another surgery to implant the centrifugal VADs (Ventricular Assist Devices). This is a measure to buy her time to wait on the transplant list. It is amazing what they can do for people. It may be a long day.

I have to tell you about Vittoria's Cousins. They decided to set up lemonade stands to raise money for Vittoria's heart. I can't wait to see the pictures. Sounds like they really did a great job. We will post more later. Vittoria adores her cousins. They are all pretty good friends and love each each other so much.

We have to run so keep the faith and keep praying for our little princess. God is with her!

UPDATE THurs

READ THE POST BELOW THIS FIRST ---Okay. All is well. They were able to stabilize it. Which leads us to the latest. After our appeals hearing today with the insurance, we were able to talk them into treating this hospital like the fantastic hospital it is and not penalize us because we don't live in LA, Denver, or Seattle. They pretty much wanted us to pick up and move to one of these cities. Like that could ever happen. It took 2 hrs to move her with the help of 8-10 people just to get a CT scan. 9 I.V. pumps, respirator, ECMO machine. You just don't pick up and cruise to the airport and hop on a plane. Then what do you do? Just go move the family to another state? Rent a place and hang out? then know you will have to live there for 6 months to a year for post transplant treatment? Come on!!! Then we had to fight to get approval of a device that is almost approved by the FDA and is the latest and best technology and would be best for her. No approval from FDA so no approval from insurance. Had to endure the stress of the appeals hearing process. We have to fight to give her the best care like her life depends on it..... oh yeah! IT DOES!! It's bad enough to go through the emotions and stress of the situation but have to worry about this part of it too... I am not a very plesant person right now. I'm on the fight!

So as of right now. Tomorrow around mid day she will go in to get a couple pumps installed to work as her heart until transplant. This will get her off the ECMO which is the fragil part of everthing right now. The smallest little thing can upset the whole day. The centifugal pump isn't without risk but it is better than where we are at. We didn't sign up for this deal. We just wonder how we got here. One minute our baby girl is skipping down the hall holding the anethisiologist's hand smiling looking up at him and 9 days later we are here.... How did this happen?

It has been a long day. We are exhausted. We cry. We pray. It really is in God's hands at this point. May the surgeons be blessed and inspired. May Vittoria be strong. Please continue to pray for our little princess.

2nd Thursday Night

The roller-coaster continues. Right now as we speak the tube carrying blood back into her aorta became kinked. A quick thinking tech opened the dressing and was able to twist the cannula to restore flow. We went back to say goodnight and and he was holding the tube until the surgeon on call could get there. They were setting up to operate as we left. Not the sight you want to see. If they come to get us before I finish I will just post and pick up later.

Uncle Andrea's friends made a huge banner to hold up at the soccer game in Rome this evening. About 35,000 soccer fans plus the ones watching on TV read the words "VITTORIA NON MOLLARE" which means "Vittoria Don't Give Up". This little girl has an influence on a global level. Tomorrow we will post pictures.

2nd Thursday Morning Up-Date

It has been a week and Vittoria is hanging in there. Hopefully we will have more to go on here in the coming hours. We had a quiet night and we even got some rest... that is until there was a Code Blue (somebody crashed). That was a bit before 6am.

Vittoria is being tough. This morning she was sleeping and they were messing with her foot and she kicked at them and started to cry. I talked to her for a minute and she settled down and went back to sleep. She i being feisty and is probably tired of them messing with her. We are going to make a schedule for her with story time when we can read to her rest time and other stuff to get her into a routine. Lots to do!

As for blood donations. We found out that we were mis-informed about being able to donate in her name. That program is no longer in place. We encourage all who can to donate blood on a regular basis. This time of year the banks are a little low and every bit helps. We have used a bunch of it, literally gallons of it. It is something you can do to help.

Gotta run! Keep the faith and prayers up for our little angel. God is listening!

Wednesday Night

Vittoria had a very quiet day. It was a rest day compared to others. We had time to go in and talk to her and tell her stories. She is a brave little soul. She has been moving around a bit and responding to questions and following directions for the nurses. I had a chance to talk to her. She just looked into my eyes with such longing to be held. She cried a little. She must be so scared. I feel bad for her because it is not like she can sleep. Every ten minutes there is a bell that rings or a test to be done. Thank heavens for the drugs I guess.

Today was a marathon for me trying to work on insurance and financial stuff. Lots of programs out there. Now which ones can just an average little family qualify for? That is to be determined. Well it has been a long day and we have a ton of reading before we meet with doctors tomorrow. Have a good night! Keep our angel in your prayers!