Day VIII. Our last day with Luca.

September 4 2014. Thursday. This day two years ago turned out to be the worst day of our lives. We started as we did the last 6 days making our way from Ronald McDonald house to CHLA. Megan still in her wheelchair. We go through the regular morning nurse switch and begin the day as if it were like any other, that was spent in a hospital.

Today would turn out to be the day. They wanted to ween Luca off his life support to see if his heart was able to withstand functioning on its own. We knew we couldn’t keep him on life support forever. His vitals looked as if he would be able to function on his own so the surgeons would be able to perform now his 3rd heart surgery. Everyone including the doctors and us felt that was the best decision at this point. As I said before I always thought that he would defy all odds and someday have a healthy heart and even play soccer despite doctors thoughts. I was a little naive and very optimistic. Even though we knew of the severity of Luca’s heart condition there’s no way to prepare for losing a child.

The morning time came and went and it was the early afternoon. The surgeon was there and ready to perform the surgery is Luca’s ICU suite. Our one request was that if things were not looking good and Luca was not going to survive then we wanted to be able to hold him while he was still alive. Initially they wanted to do the surgery in an operating room but if Luca’s heart and lungs failed in there, we wouldn’t have been able to hold him.  We hadn’t been able to pick him up and just hold him and if he was going to pass away we wanted him to know we were with him. The doctor said she would do whatever she could to accommodate our request so they did the surgery in his suite while we sat outside the door.

The surgery was estimated to take about an hour. Before the doctor went back she said if she came back out then things most likely weren’t going well. So we wait in the hallway with no view of Luca as I held onto Megan, still in her wheelchair as we prayed. All the emotions and thoughts played in my head and hoping the doctor didn’t walk out until surgery was completed. She walked out 30 minutes into the surgery and explained to us things were looking decent at first and then his heart had started to crash again. The doctor said “his pressures are dropping quickly were clearing out now to get you in. We will get him in your arms before he goes. I’m so sorry.”

It was at this moment we knew we were going to lose our little boy. Obviously we began to break down and I push Megan from the hallway into the room. Inside the room they were working on disconnecting all of the wires and tubes from his body and face so we could hold him as he peacefully passed away. Doctors and nurses exit to give us our personal time and space as they put Luca into Megan’s arms still trying to pull off the last tubes from his body. Throughout the entire week Megan would sing to Luca and once in her arms she sang the song that she sung to him everyday. “Jesus loves me.”

“Jesus loves me this I know, For the bible tells me so, little ones to him belong, they are weak but he is strong.”

Like he did so many times before when he heard our voices he would open his eyes and look at us and then slowly shut them. He did the same again. This time just happened to be the last time. While all of this was happening the nurses went and got our family to join us. They were all waiting in the same room I was pulled into when I was told Luca was the sickest child in the hospital.

Luca passed away shortly after 3pm and we sat there for hours just holding onto him. He wasn’t in anymore pain.

Our day at the hospital ended with a paperwork and having to arrange funeral plans. Luca would need to be flown back to Maryland where he would be buried. We left the hospital that night without our sweet little boy. We then had to go to the Ronald McDonald house and pack our stuff  to check out. The ride home was silent. And then to return home where we had Luca’s room set up for him. We sat in his room and were only left with what could have been. A few of Megan’s friend met us at the house as they all sat on the bed and held each other.

Our dog, Diesel, had been staying at my aunts house this week. When we left the hospital my aunt and uncle went to pick him up and bring him back home. He runs into the house and jumps into our laps. The worst day of our lives ended and the next day, weeks, months, and now years would bring all new challenges.

The next day the Galaxy had a game against Colorado, in which they won 6-0. In the first minute of the game the Colorado goalkeeper got a red card and we played with a man advantage. For me it was a sign that Luca was already watching over us. We ended the season as MLS Cup Champions and the “First to Five” championships in the league.



Day VII.

September 3 2014. Wednesday. My dad slept in Luca’s room and headed out to the airport this morning. Still in town were Megan’s parents and my mother and sister.

Today would turn out to be the most fulfilling day for Megan and I. The memories we made this day will last a lifetime. The entire week it felt like Luca had laid lifeless. Today though it felt like he was full of life. We had been able to take photos of him with his squinting eyes but today his eyes were wide open. He was much more alert and willing to keep his eyes open. For us it was a sign that he was progressing. We wanted to believe that. We needed to believe that. We still had so much hope the day would come when we would be leaving the hospital with our son.

The photos we got weren’t the only perks of the day. This day we got to take Luca’s fingerprints and footprints. As you can see in the photo below we got both of his feet but just his left hand. Due to all the tubes hooked up to his right hand the nurses didn’t think it was a good idea to move them around. We took what he could get and were thankful for it this memory and experience. For the first time it felt like we were able to do something with Luca. Megan and I took turns trying to take his prints. We wasted a bunch of paper and re did his prints numerous times. The nurses and those who came to help us with the prints were so helpful and caring and waiting til we got the best prints.

Throughout the entire week the doctors and nurses were patient with us. We had so many questions. They answered them all and multiple times. We now wanted to know when Luca was going to start weening off of his life support. On this day they mentioned they may want to start weening him off soon because at this point the machine was doing more harm than good. Luca had still barely released any fluids still and the built in dialysis was not doing much to help him. The monitors showed that his heart was stoned enough to be off of ECMO. Tomorrow there was a good chance they wanted to start this process. Luca seemed stable on life support, but there was a chance that his heart and lungs would still not be strong enough to function on their own. We knew death was a possibility, but still nothing we had ever expected. Tomorrow would indeed turn out to be the worst day of our lives…


Sisters Facebook post 2 years ago today.


Day 6.

September 2 2014. Tuesday. Woke up at the Ronald McDonald house this morning and like everyday started our trek to CHLA.

I think by this day I finally realized just how bad Luca’s condition was and still having to be on life support. I didn’t go to practice this morning and I didn’t know when the next time I would even go. I didn’t want to miss anymore time with him at this point. So to this day, Luca had open heart surgery his first day of life and he coded his second day of life which caused another surgery, then they had to put him on life support. The life support machine was giving his heart and lungs a rest to try and recover and hopefully strengthen. We didn’t know a specific day or time when we were going to start weening him off. Doctors said they wanted to perform the surgery around a week after Luca initially got put on life support. If Luca wasn’t able to sustain a stable heart and lungs after being on life support for a week it was indications that he would have an even longer road to health.

Like everyday we wanted Luca to be as comfortable as possible. With all of the medications he was on he had never got to eat. Megan was still pumping and they would just put the milk in storage for when he was finally ready. He never got to eat though but this day we gave him a pacifier and baby instincts took over and he started sucking on it.

There weren’t many photos or videos from this day. By this day we were in a routine. Wake up and head over to CHLA and spend the entire day there with the occasion of going to get food whether it be in the dining hall or restaurants down the street. Megan never left the hospital once she was there in the morning and at some times we had to make her eat. Family and friends visited daily, we read to him daily, just spending as much time with him as possible. Luca was coming off life support in the upcoming days and they would have social workers coming in to visit us. Social workers help families with any problems in their lives such as mental, behavioral, and emotional issues. Talks were short and their main focus was making sure we were prepared for the worst. We felt that was a sign that Luca was going to die and didn’t really want to have much of a conversation.

My dad was scheduled to leave the next morning to head back home to Maryland to be with my nephews. So at night he slept in Luca’s room one last night.



September 1 2014. Monday. I woke up in Luca’s hospital room at CHLA this morning and waited for Megan and her parents to make their way over for the daily morning nurse switch.

Today marked my first day back to training after spending the last 4 days in the hospital. I left this morning feeling as if I was making the right decision. I’d only be gone for a couple hours, but I wanted to get out of the hospital for a little and there was no better place to do that than the soccer field. Back on the training field I felt refreshed and I needed that because Luca was scheduled to be in the hospital for his first couple MONTHS of life. Each day would bring something new, and we felt as if Luca would take one step forward and two steps back. So for myself during these last few days I felt no news was good news because Luca was stable on life support.

At the time I was happy about the decision to get back out there but now it’s one of my biggest regrets. My biggest regret was not spending every second of his short life with Luca. I wish I took more photos and more videos and created more memories with my son. I envisioned doing so many father and son things. I feel shorted of my time with him. Not until months later did I become thankful. Thankful for the week I did have, thankful for the relationships I’ve made from him, and thankful for the beautiful daughter he gave us. I understood how I had an opportunity that so many other families who had kids with congenital heart defects didn’t get to have.

My other regret was not letting every person who came to the hospital go and see Luca, in person. We didn’t want people to see him under the conditions he was in, and didn’t expect for him to be gone so soon. To all my friends and family who did come to the hospital and were unable to see Luca, I’m sorry. I know he was able to change a lot of lives and it happened to be lives of people he was never able to meet. Sharing his story we hope to continue his legacy and name as we hope to help other families in the same situation we were and are in.

After training that day i rushed back to hospital. During the hours I was gone, I knew any phone calls were probably going to bring bad news. My phone did ring on my drive back and it was Megan, who again just needed me. It’s hard to watch your son lay lifeless for 5 days and you can’t help but feel so helpless. There wasn’t much that we could do, we couldn’t take his pain away but if I could I would. We wanted to make him feel as comfortable as possible by talking to him, reading to him, kissing him, and just sitting there holding his little hand. We laid his stuffed animal dog on him for comfort and one time he actually reached out and petthe dog. We have a dog named Diesel and we couldn’t wait for the day to have them meet and grow up together. So seeing Luca pet a dog, though it was a stuffed animal was fulfilling for us to see.

The day had come to and end and me, my dad, and father in law had been switching night shifts and staying and sleeping in Luca’s hospital room. Megan needed to sleep in a actual bed to help her with her recovery so she never had the opportunity to stay in the same room overnight with Luca. They never got their one on one mother son time. Spending those nights with Luca are moments I cherish. My dad cherishes. And Megan’s dad cherishes. Sleeping in his room meant you probably weren’t getting much sleep with all the various machine noises and nurses coming in and out. But as a father and for Luca’s grandfathers it was an opportunity to bond one on one. I’d sit at his bedside til the early mornings. My dad would even show Luca the Raiderettes, the cheerleaders of the Oakland Raiders.



Megan holding hands with Luca


Luca laying with his little doggie


Luca grabbing onto my finger


Luca’s soccer feet

Day IV.

August 31 2014. Sunday. This day started off the same as yesterday where we woke up at the Ronald McDonald house and made our way over to CHLA. Still pushing Megan in her wheelchair as we would do for the entirety of the week.

This morning my parents met us at the hospital as they would do every morning and they get dropped off by my aunt and uncle, before they headed off to church. So I thought anyways. They had dropped my dad off and they went to back to the airport for the second day in a row to pick up my sister this time. She would have flown in on the same flight as my mother yesterday but she was a bridesmaid in my cousins wedding. While a doctor was in the room discussing Lucas state at the moment to Megan and me, I remember looking up and with a confused and shocked tone and shouted “Tabatha?” Remember when Luca coded the doctor said if family wanted to see him they better get there as soon as possible. But I had no idea he had said that until recently from my dad. So to see my mom and sister fly in when they did was a surprise. Unfortunately, my wife’s brothers and sister weren’t able to make it out this week. Megan’s sister was also in Marines boot camp and the only communication they had with her was through writing and sending letters. Megan and her mom would write daily updates and print photos to send out to her. When Luca passed away they tried to get a hold of Brooke and they were able to do so through the chaplain at her training. They got to talk to her on the phone for a few minutes and she could have left boot camp, but would have had to start all over once she returned. Megan told her to stay and to finish strong. Had we known how this week was going to end, her brothers would have come out but Megan told them not to. Which is her biggest regret.

We had a bunch of family and friends now coming to the hospital but not everyone got the chance to see Luca. There was a list of a certain few people that were able to go into his room. Our family and friends wanted to be there for us though, whether that meant bringing food or waiting downstairs for us to come down and say hello and to share our photos and videos of Luca.

This day was a difficult one personally for myself though. Today was the first game I would miss since Luca was born and it was a match against our arch rivals, Chivas USA. Wasn’t much of a rival from what I can remember anyways (haha). I had not practiced since Luca was born so of course I wasn’t going to be playing in the game, but I wanted to be there. I needed to be there to get away from the stress and images that being cooped up in a small hospital room all day can bring on someone. Soccer was my escape, when I was going through the hardest year of my life off the field I was having the best year of my career on the field.

If you know about playing sports then you know once you step across those lines of the field, everything on the outside may have been put at ease for a short period of time. The entire LA Galaxy organization, my teammates, the fans, the front office helped me stay positive and that year ended with us being the “First to Five.” So, I went to that game by myself because all my family was now in town and they wanted to stay at the hospital. I was greeted by my teammates and staff and fans for the first time since becoming a father. The same people who got me through everyday leading up to his birth, I was excited to spend a few hours with them. We won the game 3-1 which made it a decent end to the day.

I drove back to the hospital after the game and remember ending the night reading to Luca as we did every night. Our favorite book was a personalized book called “two hands to hold Luca”

“Luca you are my baby ill never be far, I’ll love you, think of you, wherever you are. These two hands will raise you up high in the sky, to soar with the planes and the birds flying by”

At his fourth day of life, we finally got a small bit of good news. Luca had released some fluids and pooped so we got to change our first diaper. Not many parents get excited about changing diapers but this was a milestone since becoming parents for Megan and me. We left CHLA and i dropped Megan off at the Ronald McDonald house and I went back to sleep in Luca’s room. That night I felt pressure to get back onto the practice field even though nobody was pressuring me. Bruce told me to worry about my family, but I needed soccer for my sanity. With the little good news that we had gotten this night, I made a decision and the next day I went back to training…



Megan changing her first diaper for Luca


My dad and Luca


After returning from the game we read Luca a bedtime story


Keeping Luca warm. Goodnight!

Day III.

August 30 2014. Saturday. The first night over and the first morning with Megan being out of the hospital has begun.

This day and the following days consisted of lots of talks with the nurses and doctors. The nurses would have 12 hour shifts and Luca had two nurses at all times. One to watch his regular medicine and fluids and the other was monitoring the life support system and for any blood clotting. The nurses would switch shifts every morning and evening around 7. And during every single switch we were there to hear how Luca was doing as the doctors also made their rounds to give heir expectations and plans for the day or night. Yesterday was the day that Luca had coded and was now the sickest child in the hospital. He was now on a ventilator that is a breathing machine, and extracorporeal membrane oxygenation (ECMO),which is a heart and lung bypass machine.

Megans parents and my dad were there for Luca’s birth and attended the Luca Knows Heart game against my hometown team, DC United, the night before. My mom wasn’t able to get off work but was scheduled to come in the upcoming weeks or month. When Luca coded the doctors told my dad “if the family wants to see him they better get here as soon as possible.” My mom booked a flight soon after those doctors words and got to LA the next morning. My aunt and uncle, who live in LA, were back and forth from work, the hospital, and airport during these first couple days. Even if they weren’t able to see Luca they would just bring food and sit for hours in the waiting room with everyone. Besides us parents there were only two other people allowed in his room at once. Every entrance and exit required two pumps of hand sanitizer and my hands never felt so clean.

For the first day we didn’t have to go back and forth to two different hospital as Megan was discharged yesterday. She was still in a tremendous amount of pain and her body, especially her feet were swollen. We would prop her legs up on the small ledge of a bed we had in Luca’s hospital room. This was our first full day as a family but I was dealing with a wife recovering from a c-section 48 hours earlier, and my son who was fighting for his life.

Throughout the day once we finally got settled in from the nightmare the day before, we were able to use some of the things I brought from home. My nephews sent Luca a dog stuffed animal that I had brought so they could see pictures of him with something they had picked out. I brought my iPad to the hospital and I was showing Luca his first soccer matches. I had always imagined him being a soccer star and coming into the StubHub Center with me, as I saw so many other dads do on my team.

With all the bad news we had already gotten the first couple days we then learned how to get Luca to open his eyes more willingly today. He was under a heat lamp and the lights were bright and shining on his face and body. We would cover the light from shining in his eyes with our hands or heads and stand over top of him as he would open his eyes.

Since birth, Luca had a difficult time releasing fluids and nurses also wanted him to begin pooping. This was concerning and our little guy was now getting jaundice and starting to swell up since he wasn’t releasing his fluids. During the night nurse switch the main focus was trying to get him do just that. In now the third night my father in law slept in Luca’s room and my parents went to stay at my aunt and uncles house. Megan and I went and stayed at Ronald McDonald house along with her mother trying to get rest and return early the next morning.



Nurse doing a scan on Luca’s brain


Giving Luca his first stuffed animal


Talking to Luca about soccer and sports


Getting Luca to open his eyes by covering the light


Megan and I covering the light

This day 2 years ago. Day II.

August 29, 2014. Friday. The best day of my life followed up by one of the worst. If I even did fall asleep last night it wasn’t for very long. I was still on some type of adrenaline from the birth of my first child, my son Luca. This morning consisted of more of the same, going to check on Megan and Luca and most of my time taking photos and videos. Just two nights ago I saw a video my dad took of Luca that morning and it seemed like a normal day, or as normal as it can get for having a child who just had open heart surgery.

That afternoon Megan needed someone to go back home to pick some things up that we didn’t think we needed or didn’t think we would be able to use. Her parents and my dad offered to drive and stuff up the list of things, but I didn’t want anyone to have to deal with that infamous LA traffic. On the drive home it hit me that I had become a father. During that drive I listened to “stay with me” by Sam Smith 20 times and belted out the chorus every single time even if it was out of context I could relate to some of the lyrics.

” Oh, won’t you stay with me?
‘Cause you’re all I need
This ain’t love, it’s clear to see
But darling, stay with me.”

Once I got home I was by myself and took a moment to myself on the couch and I let out all the tears I had held in since finding out Luca had a heart defect at our 19 week ultrasound. I lived the following 18 or so weeks after Luca was diagnosed with HLHS living with the unknown and asked multiple times of we wanted to terminate the pregnancy. I said a prayer and a thank you after a few minutes of just reflecting. I gathered myself and wanted to do something special for Megan and got this carousel picture frame from our house and wanted to go print photos of Luca to put in it. I went to cvs, then Walgreens, and then another cvs. Nothing worked and I got zero photos printed. While at the CVS closer to the hospitals and my last resort I got a call from Megan’s mother and she said that Megan was having a hard time and just needed me there. I think the day before finally got to us both.

I went back to Megan’s hospital first when I returned as we tried to console each other. I told her I would go back to Luca and would FaceTime her when I got there. I started the trek back to CHLA and passed my dad who was reading the paper in the waiting room there. And then my worst dreams flashed right in front of my eyes. Trying to buzz in to get back into Luca’s hallway there was nobody answering through the intercom. As I’m looking through the glass window down the hall there’s an emergency going on so lights are flashing and sirens ringing, which meant a child had coded and need medical attention. Everyone was running in the direction of Luca’s room. I let myself in the hallway at this point and ran down the hall to see them running into my sons room. There were already 6 or more doctors and nurses in the room and Megan’s dad was pinned in the back corner. I almost dropped to the floor as a nurse set me down into a chair outside Luca’s room at the same time my dad walks around the corner. A doctor pulls myself, my dad and father in law away from the scene and into a room down the hall to explain what had just happened. Luca’s heart was crashing and he would need to be put on life support. The words that hit me hardest were when the doctor said “Luca is the sickest child we have in this hospital right now.” While we’re in the back room and hearing the next steps to Luca’s survival, I’m getting numerous calls from Megan who had been waiting to FaceTime, but I couldn’t answer then. She kept calling me and her dad and then my dad as if she knew something wasn’t right. My dad answers and she knew something was wrong but I wanted to see her in person to explain the very little that I even knew and understood.

We told her that we were coming back to her hospital, which is probably a 10 minute walk through all the halls and elevators. We get back to her hospital and just entering the floor she was staying on I heard her screams of “is he dead?” I can hear the panic and concern in her moms voice telling her “no he’s not” to try and calm her down. She had given birth barely 24 hours ago and couldn’t even sit up let alone leave the hospital and she wasn’t supposed to leave for another 3 days. She was determined to get out of that hospital to see her son alive though as they were already performing his second open heart surgery in 2 days. While discharging from the hospital and waiting for the elevator they are still pulling tubes and fluids out of her body as we push her away in a wheelchair. We get her over to CHLA where she can finally see Luca in person, now after having had 2 heart surgeries in just over 24 hours, on life support, and no longer having a pad cover his chest. They didn’t cover his chest so it was faster to get to his heart if they needed to intervene again. So now you could see the inside of his chest and his little beating heart.

Somehow Megan stood up out of her wheelchair and stepped over to Luca’s bedside and for the first time she got to speak to him. He did the same he did for me and opened his tired eyes immediately. He knew the voice of his mother and father, and for a small period of time we felt that as a sign of comfort. The rest of the day was spent taking photos as a family and just spending time together. At this point all of Luca’s medicines and life support machine crowded his small hospital room.

That night my dad slept with Luca and Megan’s family and I went a block away to the Ronald McDonald house so she could try to sleep and continue to recover in bed. What was supposed to take 3-4 days recovery in a hospital turned out to be 24 hours in a hospital for her and now we were on our own. That was a price we had to pay so that she could see her son. The worst day of my life thus far ended and again with little to no sleep as I was worried about what was to come.


Morning photo of Luca still with a pad covering his chest


Megan seeing Luca for the first time since he was born


Luca in his room now with the life support machine and the bed we left in at night under the window


Luca and Megan. He no longer has a cover over his chest