Wednesday, October 23, 2013

Happy 4th Birthday

Travis Gary DiCarlo
Travis Tribute Video
Travis Tribute Video - Vimeo
Travis Tribute Video - Youtube

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..... 

Sunday, October 20, 2013

Can I be real with you?

This is painful.

It's hard.

Each day, it hurts.

We continue to walk around, handle our commitments, enjoy our friends and family, laugh....but, in the quiet, there is pain.   A pain very real and still very present.  I don't even like to be alone anymore.  Too much down time leaves me reeling.

It hurts me when people allude to me being negative.  I KNOW I'm negative.  I KNOW I fight demons every darn day.  I feel pretty happy with the fact that I can function as a human being some days.  MY grief manifests in weird ways.  My mood can turn very dark, very quickly.  I'm cynical.  I overeat.  I'm lonely, when people are everywhere.  I worry....ALL THE TIME.  I am forever waiting for the other shoe to drop.  People don't get that.  I've SEEN the horrors that  this world can have.

I held my baby boy in my arms as his heart stopped.

I saw that same heart beating from INSIDE his opened chest numerous times.

We stood outside his room while nurses and doctors tried their hardest to save his life.

I was told my sweet boy had no more brain function.

I had to choose that enough was enough and it was time to let go.

I don't know how to live normally anymore.  I can't even remember what it felt like to be joyful and worry free.  I can't remember a time when I woke up and didn't have to fight with myself to make the most of the day.  Through the fog of depression, I scarcely remember who I am.   And, when I seems like a stranger.    I don't recall what it's like not to panic when I hear beeping or have an anxiety attack with the smell of soap.   I don't know what it's like to watch my son grow up and the pain in watching yours is sometimes too much for me to bear.

It is what it is.

This journey ain't for the faint of heart.

Sunday, March 3, 2013

Post-Traumatic Growth: Lessons from Travis

I wanted to post this last week around his angelversary but sometimes it just takes entirely too much energy to think through things.  That is why I generally stay at surface level these days.  I hate feeling too much emotion unless is positive.  Negative emotions: tension, anxiety, sadness, loneliness, depression, self-consciousness...they are all there, just stuffed under the surface.  All it takes is a little nudge and that flood gate releases.  I was nudged today.


I was at a writing conference yesterday that spoke of the change in academic standards and how they are opening up students to push past their comfort zones and really analyze.  I was into the whole concept until she started comparing the change to Post-Traumatic stress syndrome.  I thought is was a little insulting, really, to liken something so NOT LIFE THREATENING, although important, to something that is so very real and intense.  I suppose only those in the room who have ever deal with it would even realize the inappropriateness of the notion.  Regardless, she had some interesting points.  She spoke a little about something known as Post-Traumatic Growth.  Post-Traumatic growth is positive change experienced as a result of the struggle with a major life crisis or a traumatic event.   Of course, this hit a cord with me because I had been mulling this post over for sometime in my head.   With all the horrific memories and experiences we have gone through/continue to be challenged with, there is good.  There were HUGE lessons learned.  They're often hard to focus on because of the weight of the negatives but, I know they are there and it is a daily challenge for me to remember them.  My lessons from Travis.

Lesson 1: Dark vs. Light

I'm not really sure if I can articulate this lesson clearly.  It's basis: there has to be dark before the sun can rise.   They go together, the good/the bad.   It's something that you just have to accept.  The "goods" totally outweigh the bads you just have to get through to the next day.  Does that make sense?   Travis' 16 months with us were some of my best memories.  It was a scary time because he was medically fragile but he gave me the greatest gift ever, being a mom.  Our connection was/is so strong and I am so, so grateful that I was even able to experience that.  It makes me sad that some people never will.  You grow, you know...during the dark.  It makes you stronger, more passionate, more empathetic, more loving, more open, more vulnerable, more tolerant.  It's hard but I think sometimes, the lessons learned in "the dark" are the important ones!

Lesson 2: It is what it is

Life is so rotten sometimes.  People treat you rotten.  You have to do things you don't want to.   People say mean things.  It just is what it is.   You could gripe and whine and argue about your lot in life or the things that happen to you but, it won't help.  There are things, that just are they way they are and you have to make the decision to deal with it or get it out of your life.  You can't change people.  Actually, you can't change much about anything BUT you can change you...your reactions, your next steps, your goals.   Travis taught me not to dwell and whine about things.  Sometimes, it is what it is.

Lesson 3: I am okay

I joke with a friend of mine that my lips are so loose these days.  I just blurt things out and often, I immediately want to reel them back in.  Let me explain, I have always been super self conscious....I worry about how others view me.  I feel like people tend to judge.  It's natural, really, to react (on the inside) to what someone says.  I think I have just always been super sensitive to that.  I admit, I do it to.  I take things that people say out of context, I analyze it, I fret about it, I redefine it.  I hate that.  But, it's least for me.  Anyway, back to the lesson.  I suppose I just realized that I am going to just be me and say what I'm thinking and break down a few of the walls I've been building and see what happens.   It is what it is.  I am what I am.  I am hopeful that people will not scare away.  I realize I have a nutty sense of humor...I can't help it, I'm wired that way.

Lesson 4: Emotions are okay

This one is in progress....

It's been two years since Travis died.  Four years since our ordeal began.  I think it was four years ago that I stopped letting people least, fully in.  I started to build up walls and block people out if it got to complicated.  I just didn't have the bandwidth for it.  I stop sharing my feelings because they were heavy and I was afraid people couldn't take them.  Even when I did share, relationships changed.   Probably because I changed.  But, it is a lonely place, I'll tell you.  It's lonely to walk around with surface level relationships.  It needed to change.

I am trying to realize that it's okay to show my emotions.  I say "I love you" to people when I think it.  I send notes to friends.  I want people to realize that they are important for whatever reason.  When I feel joy, I express it.  I put as much fun into things as I can.  I try to initiate things even when it is so not in my nature (see #3).  I feel emotions SO MUCH STRONGER than I ever did before.  I care so much deeper.  Travis taught me that all you have is now so make it GOOD.  Share it with people.   Don't be alone.  You really never know when it'll be too late.

Lesson 5: Assume good

This is a biggie.   It hurts my heart when I think of the reasons behind this lesson but it is, by far, the biggest lesson Travis has taught me.   Some background...

The call to remove Travis' breathing tube the day he coded was made by a PICU floor doctor.  We had never had much contact with him and he was not a major, or really even a minor, player in Travis' care.  His surgeon generally called the shots.  We'd wait around and basically stalk him throughout hospital stays because he had the overall picture.  He had the plan.   That day "He" was in surgery...all day.  That morning before surgery he shared that the plan was to let him rest and eventually try to get him off the respirator.  Because his surgery had been 10 hours he wanted to let his body rest.  So, we figure that evening or the next day they would extubate.   It was a calm morning and everything was looking great.   I stepped out to call my mom and Roger came out about 10 minutes later and said they were extubating.  I was confused because it felt rushed.  I'm sure you know what happened next.

You see, the call to extubate was a judgement call.  A doctor, with all the knowledge he had, decided that everything looked well enough to extubate.  Was it the right call?  Obviously not.   Was he doing the best he could in that decisive moment?  I have to believe so.  

I have to assume that MOST people are generally doing the best they can.  Yes, we had cause to take Travis' case to review.  Yes, we are beyond angry because potentially Travis' death was a mistake.  But, I can not walk through this life assuming that people are out to get others.  Travis didn't.  He had all the faith in the world in his any stranger that he came across.  His smile was nondiscriminatory.   I have to use his short life as a model.  He showed me what it looked like to love whole-heartedly and trust in people.  As a result, I always assume that people have good intentions.  Even when shitty things happen, I try to remember that everyone is just doing the best that can at that moment.   Is it okay to be upset and angry?  Yes.  Can we learn from mistakes made?  Certainly.   But, I really find it hard to judge or criticize others these days.  It's just not fair.  No one is perfect.  And, when the anger flows (it ebbs and flows) I generally step back and come back to the same place...I am determined to assume good.

A side note: It is heartbreaking when people do not extend the same courtesy to me.  I figure if I can see things in this light after what I've been through, I should certainly not have to deal with this from others but, it's not the case.  

Lesson #6: Chase the happy

It's easy to just go through the motions and never make the changes you know you need to.  I had to.  I wasn't happy.  I needed some major changes in my life.  They are in process.  Roger and I are chasing the dreams we initially had and we are getting back to doing the things that make us happy.  I feel so much lighter these days and as a result relationships are blooming...Roger and I are reconnecting, friendships are growing, I've grow closer to my sister. All great things.  I am determined to find a little happy in everything I do...Travis wouldn't want anything less from me.

And finally, 

Lesson #7:  There is no greater love...
than that between a parent and a child.  It is unbelievable.  It is unbreakable.  Even in loss...we are still connected by an invisible string.  Because this love is SO strong.  I spend  my life in two and there.  It takes a lot of energy but it is necessary.  I need him.   And, I can imagine....he feels the same.  Until we are reunited....I will spend eternity in both for my girls and there (in spirit) with him.

"Grief is the price we pay for love"

Wednesday, February 20, 2013

One Final Surgery

(reposted from last year)

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 div="">

Tuesday, February 19, 2013

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.......

Monday, February 18, 2013

Our lives were forever altered...

(reposted from last year)

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.......

Sunday, February 17, 2013

2 Years

One Year

Two years. 760 days. 17520 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 3, 2013

4-6 minutes

There are days when even normal activity is haunted by the horrible memories of your final days.

Friday at work, I attended a CPR/First Aid class.  This is something I've done many times.  It didn't even occur to me how difficult it would be to talk about the things that class includes after I lived through your nightmare.

4-6 minutes....the time it takes for brain damage to occur without oxygen

The instructor kept talking about it.  So nonchalantly.  I wanted to scream at her.  I wanted to scream at everyone there for squirming at the thought of actually having to deal with a scenario like this.  I hate that I live with this constant internal battle not to lose my mind at everyday things.

The day you coded played through my mind in slow motion...... the doctors, the beeping, CPR, the rush in and out, the yelling, the nurse with tears in her eyes saying that she had good "p-waves" the whole time they gave CPR.

40 mins of CPR....too much time...

.....the lone window with rain dripping down as we waited, and waited....your surgeon and his team walking in looking haggard.....defeat in their eyes.....

I tried to deep breathe and look down as the damn video showed children pretending to be unconscious and people coming to their rescue.

....the ECMO tubes in your neck, your poor bruised body....holding your hand.....praying for good news in the coming day.....

God, I wish there had been good news.

This life is hard buddy.  It's so hard without you.

4-6 mins....enough time to completely change your life