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. ( 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


  1. I'm glad to hear that she's doing a little better.

    I understand that being in the position of waiting to see what happens next can cause a person to feel a little helpless at times.

    I don't know how much what I have to say will mean, but I hope it helps in some way. All I can really do is let you know a little about my past experience.

    I won't go into many details, but there have been times that because of health issues, I had to fight for days, weeks, months, and longer to survive. It's never fun having a hospital as a second home.

    When things were at their worst, what mattered most to me was that people I cared about were with me. I understand that it might somtimes feel like no matter how much you do, it isn't enough.

    There's something I want you to understand, if you don't already. You might not be able to be there with her 24/7, but while you are there with her, you are doing a lot more than you realize for her, just by being there.

    I'll continue to do distant Reiki (consider it my way of praying), and I'll continue to hope that the best things that can happen, will happen.

  2. Reading your blog every day sometimes twice has me in a bundle of nerves , tears and smiles. I am on my way and will see you all soon! Hang in there . I love you all!

  3. Glad to hear the **good** news! We love you guys and Jacamo and Vittoria!!!