Our lives were forever altered...

It had been a smooth night in recovery. All day the doctors were toying with the idea of extubation. I went out to call my mom for an update. I saw Roger walking out a few minutes later. He said they were extubating. I was mad it happened so quick. We weren't let back in for awhile. I knew something was up. He had a difficult extubation and the nurse told us we needed to be real quiet and keep him calm. He started getting agitated. She told me to hold him and try to calm him down. She gently set him in my arms and his body went stiff. He coded.

She grabbed him from me and told us to go in the hall. People started running. I heard people yelling "DiCarlo's coding". His surgeon came running. Lots of commotion then the social worker ushered us into a nearby conference room. It felt like forever that we were in there....praying, watching the rain on the small window. The social workers called our family. Soon, they were there with us. They put him on ECMO. The nurse and Dr. Lamberti came in with tears. She said they thought they were able to keep good p waves for the entire CPR process (all 2 hours of it)....and that his heart started again. Those were good signs in a situation as horrible as this. They'd keep him on ecmo and let him rest. The next day they would run test to see what effect everything had. We were so hopeful........

One Year

One year. 365 days. 8760 hours…..since I last held my baby. We were terrified driving to the hospital. We had a bad feeling about it. We were there early and Travis was the cutest in his jammies snuggling with us as we waited to take him to pre-op. He wanted NOTHING to do with the blood pressure machine, the pulse ox or ANYONE in scrubs. He watched elmo with us while we waited for the paperwork and call time. We kissed him goodbye and he cried in the arms of the nurse all the way down the hall. We kept it together until the doors shut. It would be 10 hours until we saw him again. His surgeon was haggard looking but pleased with the surgery. How could we have known that things would change so drastically during extubation. We would never see him awake and alert again. 48 hours later, he was gone.

It is so hard to live with this pain. Nobody can understand it. It affects every aspect of your life. It rips the joy from everything. It changes you. It damages you. It cannot be repaired. People ignore it.

But we have to live it.

We live it in every family photo. We live it in every other CHD warrior. We live it in every smile Addie gives us…her smile so achingly like her Bro-Bros. We live it in all the “What Ifs”. We live it in all the regret. We live it every time anyone asks about our kids, or how many kids we have. We live it when people talk about their son(s) as if we never had one. We live it in every birthday. In every little boy we see. In every one of those shattered dreams we had and all the hope we held.

I miss my boy.

The depth of that statement is more than I can ever fully express.

Watching Elmo and holding onto his Brobee toy.

Daddy and his boy waiting to go back to pre-op

Trying to entertain my boy so he wasn't scared.

Photo Challenge - In memory of Travis

Our worst fear is that time will pass and people will not think of Travis as often or remember his sweet beauty. This week will be very tough so we thought of one thing that we would love to see.

PHOTO CHALLENGE: Over the next week if something catches your eye that reminds you of Travis, take a picture of it and e-mail it to us. It could be something that reminds you of him or just something extremely beautiful and full of light (like Travis). We'd like to gather all these photos and turn them into something we can keep and look at often.

Please pick your favorite photo and post it on Team Travis Facebook page or e-mail it to me by Monday, February 20th. Thank you!

Roger - rogerd56@yahoo.com

Team Travis Facebook Page

Sharing Travis' story

Here is an article that was written about our family and the struggles and triumphs we have had over this past year.

The article came about when the sports writer was shocked that I was back to coaching and asked if he could do a feature on our family. I was honored to share our story as we have shared our entire journey with Travis and beyond. Anyway that we can keep Travis memory alive is okay with me.

Here is the article. STAYING STRONG by Terry Monahan

A few errors....1) 'most' HLHS patients do not live into their 30's. Most do not. The surgical approach is too new to know how long anticipated survival is. 2) You all know travis passed away after his FOURTH surgery....not his first.

Staying Strong for Addie Sue. Love that Travis picture is in the background.

I wear a small "T" pin on my heart for my boy.

We Miss you Travis

Mom and Dad's Letter to Travis

From the moment we found out we were expecting our first baby we were thrilled. I have never seen Roger more excited than the day we found out that our first born baby was a boy. He literally jumped up off the couch from excitement. I cried….happy tears. I was happy and my heart was so full watching Roger beaming with pride. We promptly stocked Travis’ room with every sports themed baby item available. I used to joke….”What if he hates sports? What if he wants to act instead?”. Little did we know that we had much bigger things to be concerned about…

When we found out about Travis’ special heart we were terrified. The day of his diagnosis was a blur…through the tears, we remember the words “there is no cure but there is a well defined surgical approach”. We weren’t sure we were up to this challenge. We questioned a lot. Why us? Could we hand our baby over for surgery after surgery? Is it fair? It took us awhile to accept our fate and we decided that our little dude was going to be a fighter and we were going to fight with him! Little did we know that the next year and a half would take us on the most extreme ride of our lives. This journey was filled with fear, questions, unknowns, sleepless nights, helplessness, anxiety and terrifying medical procedures. But through it all there was hope, laughter and LOVE, lots and lots of love. Love oozed out of us….our family….our friends…. and love oozed out of our boy. He truly was the most loving, joyful, smiley baby boy around. The last 16 months have been the best months of our lives.

Travis had gorgeous eyes, a brilliant smile, he said “melmo” and “brobro” when he saw his favorite characters, he LOVED to dance to New Edition’s Cool It Now, he was SO proud of himself when he learned to throw a ball, he loved being pushed around on his tricycle, he loved to watch people (especially kids), he LOVED chocolate pudding and oreos, he loved to snuggle with mommy, he was addicted to his paci and Yo Gabba Gabba. He loved to chase his dogs all around. He loved water: whether it be swimming classes, a bath or just his dog’s water dish. He had a sassy attitude and a myriad of expressive looks. Man, you could certainly tell what he was thinking! He loved staring contests (even though he ALWAYS lost because he would laugh first) and wasting whole rolls of toilet paper. He loved reading and he knew how to “pray” when it was time for bed. He loved Christmas lights and messing with his new sister. He enjoyed life and brought joy to everyone around him!!! It is amazing how many lives one special little boy can touch!

We wanted to thank all of our friends and family for their support and understanding as we fought alongside our warrior. I know it was difficult for some of you to understand the magnitude of his condition but we so appreciate the prayers and love that you all shared for our boy! Through every surgery and difficult time we felt the love from “Team Travis”. We also want to thank Travis’ doctors and nurses who were so gracious and supportive even when we had a million and one questions and even when we wanted them to hypothesize the “unknowns”. We are not sure that there are adequate words to appropriately thank them. Hopefully, looking around this room at all the love that this one little boy brought to the world is proof that they make a huge difference. Travis was pure joy and we are so very grateful for every minute and every memory we had with him!!

Travis, we promise we will continue to support CHD research that may someday find a cure for all the little special hearts. We promise to keep your memory alive. Your daddy and I will always, always have you in our hearts and in our lives. We will make sure your sister knows just how much you loved her. We will miss you more than we can fathom but we will be okay….we know you would want us to be tough…..just like you, our little warrior. We love you Buggie!

CLICK LINK BELOW TO SEE

Travis Tribute Video

For you Travis

Article about your daddy in the local paper.

Murrieta Patch

This the last picture of Travis and I. I carry it in my wallet and have it posted in several places.

This is me on December 10th - 108 pounds lighter. Thanks Travis for helping me get through all the runs.

My Weight Loss Journey

I have just completed some major goals in my life this past week son. I have completed a 5k on your birthday. I run with my students in p.e. class now. I have lost 101 pounds. Most importantly, I have become healthy so I can be active and live longer for your sister and any future brother/sister.

I was tired, hungry, and wanted to quit or cheat more times than I can count over months. But i never did. I exercised when I didn't want to, I ate healthy instead of bad, and I chose to be the man/dad/husband I wanted to always be. I always hated to run. HATE HATE HATE to run. But fell in love with the chance to just run and think of you. I never ran alone, because you were always there telling me one more block. I ran a 5k. Who would of ever thought that would be possible. You would have been so proud.Travis you never knew me as skinny daddy. I look at your pictures every time I walk downstairs, open the fridge or watch TV. I said I would loose the weight so I could be there for you as you grew up. But you never got the chance.

After you went to heaven Mommy and I turned to food as are coping method and gained a bunch more weight. We decided to do something about it this summer. You were with us every step of the way. Mommy lost over 50 pounds and has changed her life as well. You would be so proud of her. Addison has gained weight, but she is still growing (LOL).

The only motivation I needed was you buddy. I am extremely emotional today and have cried a ton today. I miss you terribly. I came home today from my competition and was so happy to see my girls, but I really wanted was too see you. Your poor sissy probably thinks I am a freak, because I won't put her down. I just miss you boy and always will.

Talk to you again on the next run.

Love,Dad

A field of memories.

Then (2/11/11)

Now (10/1/11)

This past weekend Nicole and I had to go to a function by the park next to the duck pond in Temecula. As soon as I heard that it was going to be there I panicked a little bit. One of my favorite memories of Travis happened on the last day I was there.

The last time I went there was one of my favorite days of being a dad. It was George Washington's Birthday, Friday, February 11 and we had no school. (Nicole had to work) So Travis, Addison and I had the day to ourselves.

On this day we didn't have anything planned, but just to spend it together. We woke up and hung out on be like we did many times. We finally got up and left the house. We went to Babies R Us and did some shopping. On the way out we ran into Terrell Davis (NFL Superstar) and had Travis take a picture with him. I thought it would be so cool to tell Travis stories about Terrell when he got older, but never got the chance.

I then remember going to Daphne's Greek Cafe and sharing lunch with my boy. The manager took care of us and was so nice to us. He gave us a side of rice for Travis on the house, just because Travis gave him his trademark smile. Travis was so much fun during lunch just eating up his rice and some of my gyro pita. Travis was enjoying standing up in the booth and smiling at all the people. Travis had the ability to make people smile. His smile was infectious and even grumpy people would look at him and smile. He had a gift.

After lunch, I packed both kids in the car and that is when I got the phone call that changed our lives forever. It was the phone call from the surgeon's office scheduling his surgery. They gave us some options on the dates, Thursday February 17th or sometime in March. We chose the earlier date, because we were told that he needed the surgery and the sooner the better. I remember Nicole telling me that it was less than a week away and us both freaking out.

After getting off the phone with Nicole and having the surgery date set, I decided to take Travis and Addie over to the duck pond. We have taken him there before and he loved to look at the ducks. He was so observant and never wanted to miss a thing. I fed the ducks so they would come close to him and he loved it so much. As we were walking to the van, I saw this big park with beautiful green grass and thought it would be a perfect picture opportunity. It is adjacent to the duck pond and is just really a nice area. I put Travis in the middle of the field and snapped up some pics. We then spent a little time playing in the park and then took off home.

I had a great day with my boy and my girl. Although Addison slept through most of the day, it was really the last time that I had the opportunity to be with both of them by myself. I am so grateful to have had that special day with my kids.

I only wish that we could have just one more day together.

I love you and miss you son.

Dad.

Travis hanging out in bed

Addison was so little back in February

Travis (Our MVP) and Terrell Davis (Super Bowl MVP)

Travis checking out the ducks

Travis just being Travis