Monday, October 29, 2012

Through Rose Colored Glasses

You'd never know how difficult it is to not expect the worst...unless you've been in my shoes.

Once you're on this side of life things are different.  This side....this "I've lived the nightmare" side.  This less than rosy colored view of the world.  It's tainted.  It's suspicious.  It's worst case scenarios.  It's I'm not enough.

I want to be one of THOSE people.  People who always seem happy.  People who can always look at the bright side.   I admire those who have gone through heavy things and can still slap on a smile.

I try.

At times, things seem as good as they can be.  I am really enjoying my new job and coworkers.  My girls are growing and thriving.  Roger and I are together.  We are living.   Travis shows me he's here with all these interesting connections he is creating and revealing to me.

It's sad that even with all that I am always on edge.  Always waiting for the bad news.  Always anticipating negative responses.  Anticipating the break in relationships.  Expecting people to tire of my life and the history I carry with me.   Maybe that is why I am so emotional.

I feel things so deeply.  I try not to show it.  My face is WAY too expressive.

I have good people in my life.   Truly.  People who just show up, bring coffee, call/text.  People I've only recently met who ask about Travis or offer a hug at just the right time.  People who seek me out to check on me or just chat.  They are there on tough days...on not so tough days.  I don't have to ask.

Yet, I catastrophize everything.  Why?

I look for the bad in things.  I worry that my relationships with people are not being genuine.  I worry that I am not living up to expectations...CONSTANTLY.   I put so much stock into proving a mother, as a wife, as an employee, as a friend, as a woman. It is so much pressure.  It's taxing.  I wish I could just trust that I AM ENOUGH.

I want to go back to my rosy, even if naive, view of the world.  I want to live in that world where things like this don't happen to people.

Wednesday, October 24, 2012

Travis Gary DiCarlo

Travis Gary DiCarlo
Travis Tribute Video

Travis Gary DiCarlo, first son of Roger and Nicole DiCarlo, was born at San Diego Kaiser Hospital, October 23, 2009 with a Congenital Heart Defect known as Hypoplastic Left Heart Syndrome, or HLHS. The short explanation is that Travis was born with only half of a heart. In order for him to live, a series of three operations were planned.

Due to an infection, Travis had to have an additional open heart surgery to insert pulmonary artery bands on October 29, 2009. He had his Norwood Surgery on November 21, 2009. He was sent home on December 14, 2009 from Rady's Children Hospital of San Diego after spending his first 52 nights of life in the hospital.

After being home for several months, Travis was due to for his next surgery in the plan, the Glenn procedure. But the life of a cardiac kid can change in an instant and life doesn't always go as planned. Due to the anatomy of his heart and some rhythm issues, Travis had what the surgeons called Norwood part 2. They replaced his Sano Shunt with a bigger one, enlarged his pulmonary arteries and installed a pacemaker. This surgery was performed on May 3, 2010. Travis went home on May 17th, 2010.

Around Travis' first birthday in October his cardiologist detected some narrowing in his pulmonary artery and ordered a heart cath. The heart cath showed extensive narrowing in his aorta and his pulmonary artery. On February 17, 2011 Travis had his 4th open heart surgery. He was doing well with recovery until he suddenly went into cardiac arrest on Friday (2/18). After two hours of CPR Travis was placed on ECMO (a heart/lung bypass). Although his heart did begin to beat again on its own, his brain was damaged during the whole ordeal and he lost all brain function. We had to say goodbye to our beautiful boy on Saturday, February 19th. We miss our boy terribly..... 

Tuesday, October 23, 2012

Happy 3rd Birthday Travis

Today would have marked Travis' third birthday.  We celebrated his day by doing some of his favorite things.  Tomorrow, we honor his birthday by serving dinner at the Ronald McDonald house and hosting a book drive for the patients of Children's Hospital.  We love and miss our son.

 Addison who is almost 2 letting out Balloons for her brother.
 Nicole sending out a special balloon to her Travis.
Daddy and Baby Brynn (4 1/2 months old) sending balloons to T.

Addie had swim class tonight and instead of canceling, we thought it was a great way to honor Travis,
because he loved the water so much.
 Travis loved the water.
Travis at swim class.  He made every one smile

Saturday, October 6, 2012

Simple, Painful things

It hurts my heart at the tiny details of you that I can't exactly recall. Simple things like changing a boys diaper vs. a girls. I have a boy...a beautiful, missed boy. But, I can't exactly recall the details. That hurts my heart more than I can explain. Why can't I remember those details...the happy ones? The horrible memories haunt me. I can vividly recall those moments. It's all unfair.

Monday, September 24, 2012

Someone Always Says It Better

Read this on a fellow baby loss mom's blog:

"I feel disrespected. I feel abandoned. I feel rejected by the people in my life who were supposed to be there for me when this all went down. I feel cheated out if my grief because I am so worried about what everyone else thinks."

I feel the same.

Sunday, September 23, 2012

What Grief Looks Like

I have been wanting to get my thoughts out on this subject for awhile now.  It was spurred by a friend’s comment about how much I sleep.  It hurt.  It stung.  It really wasn’t that big of a deal…but, at the same time, it was.  You see sleeping is one of the ways I deal.

I think people forget that we are grieving.  We are in pain.  The pain manifests in strange ways.

I’m tired.

I spend my hours being mom to my living children, trying to keep up with my house, my responsibilities. Trying to look like a gentle rain when my insides feel like a hurricane.  I don’t cry in front of people.  I won’t let myself often.  I wait until the day is done and I am alone in my car.  All of the little moments from the day where my heart aches for the “family I should have” catch up with me and I cry.   It takes so much energy to get through each day without falling apart.  And, I am just exhausted.

This is what grief looks like.

It’s feeling uncomfortable with touch.  Prolonged hugs, lingering handshakes, a hand on my back….they make me cringe.  It all reminds me of the days in the hospital waiting for news from the surgeries.

It’s getting annoyed hearing people say how amazing we are.  We aren’t.  You just do what you have to do.  You would to if you had to.  We have two girls here that need us.  We have to work and provide for our family.  We have no choice.  I can’t tell you how much I’d LOVE to not get out of bed each day.  But, I do.  I have to find some reason to carry on for my girls and for Travis…because he didn’t get to. 

It’s laughter and joy heavily weighted in an aching sadness.  It’s watching our girls grow and knowing how we were robbed of our boy.

It’s jealousy.  It’s looking at friends with their healthy kids and aching.  It’s looking at three-year old boys and wondering…what would Travis look like today?  It’s being angry that we have to walk around with this heavy load on our hearts. 

It’s anger .  Anger at hearing heart moms praise God for answering their prayers…as if we didn’t pray enough.  As if we didn’t beg God to let us keep our boy.  As if we were not worthy enough for God to answer OUR prayers. It’s the screams that I hold inside.  The fighting to resist the urge to yell at people that he was special too.  He deserved answered prayers!

It’s an awkwardness that looms in every conversation…with those that know, with those that don’t, with strangers when they ask questions about our family.  It’s the elephant in the room. It’s a million decisions about how to handle situations…. what do I tell my new class when we have family events and my son is missing?  

It’s loneliness.  It’s figuring out that really, you are all you have.  It’s realizing that people can’t handle your pain.  It’s trying to put energy into friendships.  They all feel like such work.  Conversations seem so unnatural.   It’s cancelling plans because most of the time it is just too much effort.

It’s zoning out of conversations because I just can’t focus.  It’s forgetting things.   It’s feeling disorganized.  It’s over eating.  

It’s consuming.

It’s ongoing.

It’s deeper than you can even imagine.

Sunday, August 26, 2012

Time Flies, but pain doesn't go away.

It has been crazy busy for the DiCarlo Family the past few months.

Quick Recap:

  • Brynn Kristina DiCarlo was born June 1st, 2012 (Above)
  • We moved .5 miles to get a fresh start.  Could not stand the thought of giving Travis' room to baby Brynn
  • Nicole got a new teaching job in Poway Unified School District.  She is now teaching 5th grade.
  • Addison is now almost 2 and is such a firecracker.  She has all these little quirks that remind us of Travis all the time and it just makes us smile.  

We are just trying to live life the best that we can.  There isn't a day that goes by that we don't think of our boy.  We have a wall in our new home to display all of Travis' favorite stuff and things that remind us of him.  It also has the quote "An Angel Watches Over Us"   This keeps him just a little closer to our hearts some days.

As for now, life goes on.  The frequency of people that talk to us about Travis has gone down and that makes us sad.  But we are always open to spread his story and TEAM TRAVIS will live on forever.

Monday, February 20, 2012

One final surgery

The transplant team was supposed to call us and give us a two hour window in which we could decide to go back down to the hospital and walk with Travis to his final surgery. Waking up the next morning, I knew something was wrong. We hadn't heard anything. We waited until early afternoon to call. The coordinator apologized for the delay but said they had found a match at UCLA and that they would be able to use his kidney and liver. Through the pain of losing my boy, I was thankful that he would live on in someone else. We headed down to the hospital to say one last goodbye. Our parents came too. We all took a few more minutes with our boy. Even though I know he was already an angel, it felt good to sit by him and hold his hand. It felt good to remind him we loved him. I made sure to tell him that his last surgery wouldn't hurt and that he was such a hero to help someone else out. Roger and I walked with the nurses and the everyone else as we proceeded to the OR. Although it was late in the evening, patients and parents still watched as this huge parade went by. I wanted to yell at them. I wanted to tell everyone what we sacrificing. I wanted to tell them that my beautiful boy was giving us all one final act of bravery and strength. We stopped at the elevator and the head OR nurse said. We need to stop here. I kissed his hand and they wheeled him away. The was the last time I saw my baby boy. The boy who had brought us 16 months of joy. The boy who taught me what true love is. The sweet boy who had to fight so hard from the moment he was born. It wasn't fair.

The social worker asked if we wanted the blanket he was wrapped in. She asked us to wait in the lobby. We sat the same lobby where just a couple days ago we had waited with our boy for his 4th surgery. He was so full of life. We were so full of hope.

Now, we were all empty.

The social worker and transplant coordinators came out with some things for us. Among them, the blanket he last was wrapped in. They also presented us with a medal. The medal signified that Travis was a hero and gave the ultimate sacrifice. They promised to call once they all arrived at UCLA. With our family, we walked out of the hospital. We were all broken. I'm not even sure how we had the strength to physically move. I just wanted to stay there. If I didn't leave maybe all this would go away.

We went home and spent that evening sleeping/sobbing/waiting for a call. The next morning we received a call from the transplant coordinator. She had horrible news. Once they got to UCLA it was determined that his organs were sicker than they had thought. They were unable to transplant them. She assured us that Travis was still a hero and will always be for our choice to donate. Our hearts sank. As if things could get any worse. She mentioned that they would still use his eyes at the eye bank for research and such. His beautiful green/blue sparkly eyes. I remember just being a mess. How could God not at least give us this gift? I GAVE UP a chance to hold my boy wire free for this most precious gift and it didn't even happen. I still have such anger over this. I know that we tried our best.


The last several posts are some of the details of Travis' last days. Living it was painful. Revisiting it is also painful. I guess I just wanted people to see just all my sweet guy went through. How strong he really was an how much our family sacrificed. These memories run through my head often. It is a miracle that grieving parents can even get out of bed, let alone try and function. We are constantly haunted by this....constantly reminded.....constantly in pain.....constantly living half in this world and half with our baby in spirit. It is exhausting.

Missing you more than you will ever know Mr. Man. <3<3<3

Sunday, February 19, 2012

Balloons for Travis

Addison Sue honoring her brother by sending him a balloon
Balloons for Travis, the Facebook page, is a tribute to the life of Travis Gary DiCarlo and a place for all of Trav's family and friends to remember him and his influence on our lives. Please share your photographs from your balloon release or tribute in how you remembered Travis today. We've also asked those who find the Rememberance Tags to log onto Balloons for Trav and post where the tag was found.

The worst kind of wake up call.

After a long emotional day, I sent Roger to the Ronald McDonald house to get some rest. I'd stay with Travis until 5am and then we'd switch off. We had two nurses that night (two are needed to run the ECMO circuit). One of them was a nurse Travis had in the NICU. Loved her. The other was a complete jerk to me. She barely said one word to me the whole night. She didn't offer me a blanket, didn't offer me water, didn't try to small talk....nothing. I held Travis' had with my right hand all night and played on my computer with my left. I remember watching episodes of Tough Love on HULU. I was so tired but couldn't bare to leave that room. I honestly thought that even though Travis coded and looked terrible, he'd pull through. I knew a lot of storied about kids on ECMO that came off. That was my hope. We just had to wait it out until the next day when they'd run tests. Roger got there at 5. Before I left, I told the grumpy nurse how I felt. I told her that even though Travis was the patient, she could have been a little more caring towards us. I told her that after a super horrible day that last thing I needed was a bitchy nurse.

I left and walked wearily across the street to our room. My head hit the pillow and I was out. I had been asleep for maybe 20 minutes when I got the call.

Roger said to get over there right away. He couldn't even really talk. I just remember him saying his eyes weren't responding to light. They were transporting him to CT scan with the ECMO circuit (which is a HUGE deal). I jumped out of bed and rushed back over. We waited as a huge team of people came for transport. They closed the unit down. It's not easy to move someone on life support. I remember waiting in the hall as the scan took place and walking back behind this parade of people. Other families and patients watching us with fear. Full of fear ourselves.

It would take several hours later for the neurologist to come and give the report. They brought us back into the conference room we were in the day before. Dr. Lamberti and the ICU doctor told us the worst news one could ever hear. There was too much damage to his brain. IT was swelling and they did not see anything the could do. We had to say goodbye. The next few hours were spent talking to people. Social workers, transplant people (we wanted to donate his organs), doctors, our families that came to say goodbye. The social worker brought in a box of memory makers. We took fingerprints and cut some of his sweet hair off. We took pictures. I asked to hold him. They said okay but looked fearful. In order to transplant his viable organs, he had to remain on the ECMO circuit until harvesting. And, the ECMO circuit was quite specific with placement. One wrong move and it could mess things up. The nice nurse from the day before was determined. We let Roger go first. He sat in a chair by the bed and held Travis briefly. It wasn't the snuggle we wanted. It was holding our sweet boy with tubes and wires and machines with just our arms straight out. Then, it was my turn. I sat down and they worked hard to get him transferred to me. Once things were set they set him down and alarms started beeping....they had to reposition him and couldn't get it right until he was flat back in bed. I gave up my last chance to hold my baby so that his organs could help someone else.

Late that evening we said our goodbyes and left. We left with him still on the machine and the transplant team working hard to find matches. We went home. To an emptier home.

I remember just feeling so tired and numb. I remember hoping that his organs would be a match and that someday we could meet the person who they went to and tell them about our miracle baby. I remember hugging Addie much pain I felt for her. She was so young and never really got to know her brother. I remember worrying about my mom and my sister. If they were okay. And, I remember falling asleep praying it was all a nightmare.

....continued tomorrow.......

Saturday, February 18, 2012


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........

Friday, February 17, 2012

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.

Sunday, February 12, 2012

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 -

Thursday, February 9, 2012

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.

Monday, January 23, 2012

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!