Travis Gary DiCarlo 10/23/09-02/19/11

Travis Gary DiCarlo, the first child of Roger and Nicole DiCarlo, was born on October 23, 2009, in San Diego, CA. Travis was born with HLHS, Hypoplastic Left Heart Syndrome, and fought valiantly until he lost his battle on February 19, 2011. During his short time here on earth, Travis touched many people who followed his story on a blog his parents created at www.teamtravis.info. Most people will remember his big beautiful blue eyes and his million dollar smile. Despite his special heart, Travis was always happy, watching and dancing to Yo Gabba Gabba, chasing after his dogs, and people watching.

Everyone who met him fell in love instantly. Travis was a true warrior and will forever be missed by his family, friends, and people across the country who never even met him. His legacy will live on as his parents made the selfless decision to donate his organs so that others may live. The family requests that those who loved Travis please consider organ donation, the greatest gift of life.

Travis is survived by his parents Roger and Nicole DiCarlo of Fallbrook; his younger sister, Addison Sue DiCarlo; Nana Sue Roberts of Vista, Grandparents Roger and Karen Sue DiCarlo of Temecula; Aunts Tina Gagne, Deb Hawes, Jen Mulloy and Angela DiCarlo; Uncles Daniel DiCarlo, Ryan DiCarlo, and Don Zollo; Great-Grandmother Jane Williams; numerous friends and family, and the entire CHD community. Travis was preceded in death by his Papa, Gary Gagne’.

The family is extremely grateful to Rady’s Children Hospital; Kaiser Hospital; the Ronald McDonald House; and Doctors Lamberti, Levy and Klaudt - all of whom fought so hard for our angel Travis. The family also extends its thanks to all of the many doctors, nurses, and staff that participated in Travis’ care. The family is extremely grateful for Mark Kuhn, the family’s pastor and his wife, Carol Kuhn, who have been with the family since the beautiful day of Travis’ birth.

A Celebration of Life will be held on March 6, 2011, from 1:00-4:00 pm at Williams Barn at Walnut Grove Park, 1950 Sycamore Drive, San Marcos, CA.

Donations can be made to the family at teamtravis.info, HeartSisters.blogspot.com, or the Children’s Heart Foundation.

Hotel Information for Out of Town Guests

We have arranged a couple of hotel blocks for our out of town guests. If you are in need of a hotel for Travis' celebration of life please contact one of the following:

Marriott Towne Place Suites
2201 South Melrose Drive
Vista, CA 92081
760-216-6010
$93/night; $140/2 bedroom suite
Mention code: .....Coming soon...
www.towneplacesuites.com/SANVI

La Quinta Inn
430 Sycamore Ave
Vista, CA 92081
760-727-8180
$61-66/night AAA rate

I Miss You...

A Child Loaned

This is a poem is found in the prologue to the book

Hypoplastic Left Heart Syndrome: A Guide for Parents

I'll lend you for a little time

a child of mine," He said,

"for you to love the whole while he lives.

It may be six or seven years

or twenty-two or three,

but will you, till I call him back,

take care of him for me?"

"He'll bring his charm to gladden you,

and should his stay be brief,

you'll have his lovely memories

as solace for your grief."

"I cannot promise he will stay

since all from earth return,

but there are lessons taught down there

I want this child to learn."

"I've looked this wide world over

in my search for teachers true,

and from the things that crowd life's lane

I have selected you."

"Now will you give him all your love

nor think the labor vain,

Nor hate me when I come to call

and take him back again?"

"I fancied that I heard them say

'Dear Lord, Thy will be done,

for all the joy the child shall bring

the risk of grief we'll run.'

'We'll shelter him with tenderness;

We'll love him while we may,

and for the happiness we've known

forever grateful stay.

But should the angels call for him

much sooner than we planned,

We'll brave the bitter grief that comes

and try to understand.'"

*Edgar Guest

Straws

My heart is so heavy today. All I can think about is how Travis loved to drink water from my cup using the straw. He wasn't very coordinated at it....his tongue stuck out a little underneath and he always spilled water down his shirt. How do I move on? I miss him so bad. This isn't fair.

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Celebration of Life - Travis DiCarlo

To download and print his Celebration of Life Invitation click below

Travis Celebration of Life Invitation

We Were Never Promised a Forever

When Roger and I found out about Travis' heart condition we made the decision to continue the pregnancy knowing that our time with him may be limited. We hoped and prayed for his time here on earth to be long but we always knew, in the back of our minds, that the reality was that we probably would not be able to see him have children of his own. I used to have dreams about what his memorial service would look like, what songs would play, and who would come. They were morbid dreams but they were our reality. We lived that reality every day. When I would be so tired after work I would try my best to muster up energy to play and hang out with my boy. When he was super cranky, I would use every bit of patience I had to handle him.....because I knew, he was fragile and that it might be our last time together. Maybe this knowing prepared us a bit for his death.

Our extended family is hurting so bad right now because I think in a way they were all in a bit of denial of how fragile our boy was. We KNEW because we were there in the hospital fighting his battles with him.....we watched the lines on the monitors......we saw his SAT's fluctuate......we were acutely aware of what havoc an infection could wreak. We had to accept his mortality before he was even born. That is something no one else could ever understand unless they too have had a child as frail. It's not that his death is easy but it helps us to focus on his life. We had 16 amazing, wonderful, un-promised months with him. We couldn't be more grateful for the time we did get to have with our miracle boy. Our hearts are hurting so deeply but we keep remembering all the joy he has brought to our lives....and that is bringing us some peace.

Social Network Therapy

Roger and I are really finding comfort tonight in the stories and photos that you all are sharing on the Team Travis facebook page. Please feel free to join the group and post your memory, favorite photo, or just read others post. It is such a great feeling to see how many people our little dude touched!

Facebook Group: http://www.facebook.com/home.php?sk=group_128207457251243

Celebration of Life

Travis' celebration of life is planned on March 6th. It will be held at the Williams Barn in Walnut Grove park. The exact time will be set soon...it will probably be at 1pm. Also, we want everyone to wear red. We want to celebrate the wonderful 16 months we had with our beautiful boy.

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Take them a meal.

Thank you for helping Roger and Nicole. We are hoping to have meals for them every night for the first few weeks and then we will go to Monday, Wednesday and Friday. At this time if you could deliver the food to The Meyer's House at 3537 Lake Circle Dr, Fallbrook or unless Renae makes arrangement to meet you some where else. Please contact Renae Meyer at renaemeyer@roadrunner.com or call or text(760-214-2636) me for a time of delivery

Please put your meals in disposable containers that don't have to be returned to the cook. Aluminum pans and ziploc bags are a great way to do this. If your meal needs to be heated in the oven, please be sure to include the directions for time and temperature. :)
Also in order to make it easy for the DiCarlos to know how long leftovers have been in their refrigerator, please be sure you mark your meal with your name and the date that you brought it. They have a lot on their minds and this will be one less thing they have to keep track of.

Thank you again for helping out with a meal. Feel free to e-mail or call with any questions!

Renae Meyer

Here is the link to the website.

TakeThemAMeal.com

Roger's Boy

Close your eyes,
Have no fear,
The monsters gone,
He's on the run and your daddy's here,

Beautiful,
Beautiful, beautiful,
Beautiful Boy,

Before you go to sleep,
Say a little prayer,
Every day in every way,
It's getting better and better,

Beautiful,
Beautiful, beautiful,
Beautiful Boy,

Out on the ocean sailing away,
I can hardly wait,
To see you to come of age,
But I guess we'll both,
Just have to be patient,
Yes it's a long way to go,
But in the meantime,

Before you cross the street,
Take my hand,
Life is just what happens to you,
While your busy making other plans,

Beautiful,
Beautiful, beautiful,
Beautiful Boy.

-J. Lennon

His Final Gift

Tomorrow we will know exactly where Travis' final gift went tonight. We were at the hospital once more this evening to kiss our sweet boy one more time. Please continue to pray that his kidneys reach the recipient and that the recipient will be able to live on.

Our Beautiful Boy

Helping Others

This is Travis' Aunt Tina. I am posting for Nicole and Roger. They would like everyone to know that Travis is still on the bypass machine waiting for an OR time. Although his brain is not functioning, they are keeping his other organs alive. Nicole and Roger have made the selfless decision to donate as many of Travis' organs as are viable. At this point, we are unsure as to which organs are viable. We ask for your prayers that most of them are viable so that Travis' legacy will live on through saving the lives of others.

Also, our family has been receiving many requests from people wishing to help. One way you can help is to donate to help defray the costs associated with the memorial and missing of work. On the right side of the www.teamtravis.info website is a donation button. It is linked to a PayPal account where donations can be made to help Nicole and Roger.

Should anyone have any questions, you can e-mail me via Facebook. Travis' Aunt, Tina Gagne

What Now?

I want to thank everyone for your thoughts and prayers. We feel them and appreciate them. I ask the no one be offended if calls are not answered or texts returned. The events of yesterday are still unreal and or family needs time to process what happened and to make some decisions. I ask that you continue to pray for my family and my sweet, precious boy!

Time to Rest

Roger and I are going to try to rest now. We have been up since 7am yesterday. Thank you to everyone offering support. Right now, we just need to process this. Tomorrow, we will start to get things in order and figure out arrangements, etc. We will keep you all update.

Addie is here at the house with us and a good family friend is staying the night to watch her so we can sleep. We have food for tonight (thank you Meyers).

Home

We are home. I'm not sure what to do now. Every single thing here is about our sweet angel. It doesn't feel real.

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The Battle is Over

We have to say goodbye to our beautiful baby boy. His brain is dead.

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update

They r taking Trav to CT scan now. His pupils are no longer responsive. Please pray.

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Update

Travis has taken a bad turn. He was doing so well this morning. They decided that he was ready for extubation because he was breathing over his ventilator. He was also getting irritated and thrashing about a bit. Around 2:30 they asked us to leave so they could pull out his ventilator (standard procedure). We were out for a bit and when we called to come back they said to give them more time. When we finally came back the nurse met us outside in the hallway and told us he was calm now but he was "fragile". He turned blue and stopped breathing for a bit after the tube came out. We went in but did not talk to him or anything to try and keep him calm. Then, he started to jerk and thrash so the nurse told me to try to hold him and calm him down. It didn't work, he went limp and turned blue. They quickly had me lay him down and rushed us out. So many things happened: doctors rushing in, yelling for things, commotion. Then we heard "Dicarlo's coding". We didn't know what to do or think. I was paralyzed. The social worker came and had us wait in the conference room. For the next three hours we sat in there unsure of what was going on with our baby boy two doors down. We cried and cried and pleaded with God! The social worker would occasionally come in with an update of whatever she could gather from listening in the hallway. We knew they were doing chest compressions, his surgeon had been paged, the ECMO (heart/lung bypass) machine was coming, the surgeon was in there, the unit was locked down, ECMO was on, the surgeon left the room. Our parents arrived and we cried with them and prayed! Finally, the nurse came in crying and just told us that they did CPR for 2 hours until they were able to get ECMO started. She said that there were two positives #1 he had decent p waves during the CPR and #2 his blood gases looked good throughout CPR. Hopefully, these two things mean that he received sufficient oxygen during the ordeal to his organs and brain. With CPR for that long there is a risk of organ/brain damage and seizures. Next, the doctors came in....they looked disheveled and that was unnerving. They said all we can do is wait and see. They were (and still are) unsure why this happened. Finally, the room was cleaned up and we were allowed to see our boy. He looked puffy and had the tell-tale cannulas in his neck of ECMO. ECMO is essentially a circuit that pumps oxygenated blood to the body (through a cannula in his neck) and then returns the blood to the machine via a second cannula.....this circuit works for his heart and lungs giving his heart a rest.

Once he was stabilized and ECMO was successfully started we decided to get some air and go across the street to the McDonald house and hug Addison. We prayed with our family and took quick showers. We were numb and terrified but anxious to get back and see what was going on.

When we returned we were happy to hear that his heart had began to eject (pump) on its own! Praise God! That gave us a lot of HOPE. They are setting up EEGs to monitor his brain function. He has opened his eyes a bit and moved his hand. They will keep him on ECMO for several days just to let his heart rest. Then, they will wean him from the ECMO and we will pray his heart can handle it all on his own. I assume it would be then that they would do an MRI and CT scan to check his brain. Little man still has a huge fight ahead of him but we have some HOPE. Please continue to pray for him! Pray that his heart will recover and that his organs were unaffected. Also pray that his brain will not have any seizures. This has to be the most difficult thing anyone could ever go through.......

The morning after.

Travis had a good night. They kept him pretty sedated all of the night.  The plan is to slowly wean him off of stuff today.  They also plan to extubate him as well.  It is going to be a challenging day.

Out of Surgery and on to Recovery

The Report

Just spoke with the surgeon. He seemed pleased with the surgery. It took so long because he had to try three different conduits before his lungs were happy. He was able to redo the aorta and replace the faulty pacemaker lead. We have to wait about 30 mins before we can see him.

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Paged

We've been paged to the waiting room. It said Lamberti (surgeon) will be here soon. Travis is on his way to ICU. I feel so sick to my stomach.

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Update

Just got a call with an update. Aorta opening is done. No major complications. Still several things left to do. It'll will be several more hours.

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Pre Operation Pics

Removing his Holter Study Monitor - He did not like this at all.

Watching Elmo before going back to surgery

Nicole giving Travis words of encouragement.

Having some fun with mama.

Oh no!!! It's time!!!

Daddy and Travis

Travis letting little sister know that he will be just fine.

Pre surgery pic

Off he went

Our hearts are breaking. He was so scared when we handed him off. Lamberti says 6 to 8 hours. God please watch over our baby boy!

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Fear

Little warrior is in bed and little sis is off to grandmas for awhile. Roger and I are packing and getting things ready for tomorrow. Today was difficult, and I can only imagine what tomorrow holds. Poor little guy is so fearful of the hospital now. He screams when they weigh him!

I have cried so many tears today.....I am praying for peace tomorrow so that I can be strong. I don't want to show my fear to Travis. He needs my strength....but my God, this is too much. I just want to take his pain away. I just wish this was all a nightmare that we could wake up from.

Surgery is set for 7:00am tomorrow. Surgery should take between 4-6 hours. We will be updating the blog and facebook when we can.

Surgery is Scheduled

Travis will be having his aorta opened on Thursday, Feb 17th. We are terrified.

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CHD Facts

• Congenital heart defects (CHDs) occur when a baby's heart fails to form properly during early pregnancy. In most cases, the cause is unknown, although scientists feel both genetic and environmental factors play a role.Some environmental factors that increase the risk of CHDs include the mother’s use of cocaine, alcohol or certain medications while pregnant. Some maternal medical conditions – such as diabetes – may also increase risk.
• CHDs are the most common birth defect – and the leading cause of birth defect-related deaths.
• CHDs occur more often than Spina Bifida, Down Syndrome or hearing loss – and kill twice as many children as childhood cancer.
• It is estimated that 40,000 babies with CHDs are born in the United States each year – that’s one in every 100 babies.
• Although some babies will be diagnosed at birth, newborns are not routinely screened for CHDs – and pregnant women are not routinely tested for CHDs.
• There are approximately 35 different types of congenital heart defects. HLHS being the most difficult to "treat".
• Some CHDs may be treated with surgery, medicine and/or devices, such as artificial valves and pacemakers. In the last 25 years, advances in the treatment of heart defects have enabled half a million U.S. children with serious CHDs to survive into adulthood.
• Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and childhood-onset heart disease.
• Early detection is critical to the successful treatment of CHDs. Some heart defects can be detected by a routine ultrasound – but the most effective prenatal test is an echocardiogram performed by a Pediatric Cardiologist.

Fired Up About CHD Awareness!

Amy Bennett is an amazing heart mom that I met and have had the pleasure of working with for Sisters By Heart. She recently put a post on her blog which put into words exactly how so many of us are feeling. This post puts into perspective why we fight so hard for awareness for our kids. I had to share it with everyone. Thank you Amy for writing this amazing plea for awareness!

Amy and her beautiful heart warrior Bodie

First... here is a little bit about Amy's son Bodie:

Bodie was born on February 16, 2010 having been prenatally diagnosed with HLHS. All of Bodie’s surgeries have been done at Children’s Hospital Los Angeles by Dr. Vaughn Starnes. Bodie had his Norwood at 5 days old, a shunt revision and pacemaker placement at 2 months old, and his bi-directional Glenn at 7 months old. Bodie spent 5 weeks in the hospital after his Norwood, 11½ weeks after his shunt revision due to hospital acquired infections and only 5 days after his Glenn. Despite his incredibly rough start, spending 4½ of the first 5 months of his life in the hospital, he has truly defied the odds and is now doing amazingly well. He looks and acts just like any other baby – he is an absolute joy for us. He continues to inspire us and we are grateful every day that God chose to bless us with Bodie.

Bodie Bennett
hopeforbabybennett.blogspot.com

Why am I fired up about CHD awareness
by Amy Bennett

I know a lot of you reading this are probably wondering "why is Amy STILL going on about CHD awareness and research? I mean, Bodie had a horrible start, but he's doing great now. Why can't she just let it rest and get on with her life?" (it's ok if you're thinking this - I'm sure you're not the only one)

Here's why...

I cry out for CHD research because my son's life depends on advances in medical technology. Currently, 75% of HLHS kids will make it to the age of FIVE (and that's the most positive statistic I've read - other stats say it's closer to 60 or 65%). How would you feel if you looked at your baby, knowing those odds? Wouldn't you fight with everything you had to improve those odds? Wouldn't you pour your heart and soul into asking everyone you knew to pay attention to CHD's and fund CHD research?

I cry out for CHD research because my son will never be healed. He willalways have a CHD. His BEST case scenario is at least 1 more open heart surgery and pacemaker maintenance for the rest of his life. He will always either have a half a functioning heart (the half that was never intended to pump blood to the body, by the way) that's been rewired to work as a whole heart the best it can. Or he'll have someone else's heart beating inside his body. At the moment, those are our only options. If and when the day comes that he needs a transplant, it will bring a whole host of issues, including forever worrying about rejection and the possibility of future transplants down the road. He will always have exercise limitations of some sort. The extent of those limitations will be up to his heart, his lungs and his body, but at the very least, we know that he likely won't be permitted to play contact sports.

I cry out for CHD research because, when my son is a teenager (God willing, he will live that long), instead of assuming he will live forever like most teens do, he'll have to face his own mortality at the same time as he's growing into an adult. How do you do that? I don't know. The oldest people with his condition are in their twenties and there's only a handful of them. Dusk and I struggle with how we'll help Bodie at that point - we know what it's like to raise a child with a "questionable" life expectancy, but we can't know what it's like to be the one actually living with that questionable life expectancy. How do you find a spouse who loves you in spite of a questionable future? Of course, no one is guaranteed a specific future, but it's just human nature to take our best odds, right? Don't get me wrong: we will do EVERYTHING in our power to raise our son to live a normal life, and we have every reason to believe he will fall on the favorable side of these odds, that he'll lead a happy, normal life. We will teach him about God's plan for him, and encourage Bodie to use his journey how he feels called to use it. And so I shove these worries to the back of my mind...but the realities are still there.

I cry out for CHD research because it's not just about MY son. Truly, Bodie is doing incredible right now. But far too many babies are lost every year to CHD's. CHD's are the #1 birth defect and the #1 cause of infant death before the age of 1. 4,000 babies will not live to see their 1st birthday from CHD's alone this year. CHD's can happen to anyone. Yes, we have a history of heart issues on Dusk's side of the family. But the fact is, I have met more families affected by CHD's with absolutely no cardiac family history than I have met with a cardiac family history. Cardiac babies can be born to healthy parents. Parents who have NO inkling what a CHD even is.

I cry out for CHD research because, like so many CHD's, no one knows what causes HLHS. How the heck are they supposed to figure out how best to treat it if they can't even figure out what causes it? I see so much money going to pediatric cancer research, and cancer is horrible, don't get me wrong (my mom is a breast and kidney cancer survivor, so believe me, I am all about cancer research as well), but CHD's kill almost twice as many babies every year as all pediatric cancers combined, yet pediatric cancer gets 5x the funding of CHD's? What the what??? It doesn't make any sense.

Most of all, I cry out for CHD research, because treatment for CHD's has come SO FAR in the past 20 years. Praise God that my son was born in 2010, not 1980 or 1970. But in 2010. A time when we can now say 75% of kids with his defect make it to the age of 5. He is truly on the cutting edge of medical technology. And I am so grateful for that. But I am greedy. I'm his mother. He's my son. I want more for him. I want the statistic to be 100%. I want to rest in the blessed assurance of knowing my son has a really great chance of making it to adulthood and living a normal life. And the more money that goes to CHD research, the greater chance we have of that happening.

So why am I so fired up about CHD awareness? I can't help it. It's in my blood now. I hope maybe it'll be in yours a little bit, too - and you'll be inspired to make a donation to the Children's Heart Foundation, one of the few organizations that gives a substantial amount of money to CHD research!

Heart Cathe #3 photos

Mr. Turtle. I will be just fine.

Hurdles

So, off we went to the hospital with hope in our hearts. Unfortunately, things didn't go as we were hoping.

please note: this is hard to explain and the doctors used a diagram to help us understand. I will try my best to get the gist of it out.

The doctors were unable to correct the aortic narrowing in the cath lab. The narrowing passes over his carotid artery (leading to his brain/head). The doctor felt it would be unsafe to stent that because it was too risky. They decided it needed a surgical repair...soon. Additionally, we've mentioned before that somewhere down the line a left subclavian blockage developed in one of his arteries. This was not initially a huge concern....however, it is making it difficult for him to have the "normal" surgical repairs. His body is compensating for this blockage by creating new collateral pathways that are troublesome. The cath procedure also showed that something (one of these collaterals?) is dumping blue blood into the heart. Unfortunately, the doctors really are not sure how to handle that blockage and fix that "dumping". His team of experts are going to be meeting on Thursday to discuss his case and try to come up with a plan for how to handle the blockage.

What we know now is that a surgery is in his near future (possibly in the next two weeks). This is an additional surgery that we were not expecting. He will still need the Fontan procedure. They are going to place a bigger sano shunt to allow him more time to grow. He needs to be larger to do the Fontan.

We are devastated. We are angry. But mostly, we are scared.