Luca was born on Thursday, August 28th at 10:35am. My c-section was scheduled for 9:30am and I was to arrive at the hospital two hours early. Both my parents and AJ’s dad flew in town for the big day. We were up late the night before as the LA Galaxy played DC United and dedicated the night and game to Luca. More on that later. We left our house around 6am to get to the hospital in time, but needless to say we didn’t get much sleep with all the excitement and anticipation of meeting Luca.
At the hospital, everything was scheduled to happen on time. I was dressed in my super cute hospital gown (not) and pumped full of fluids. Shortly before 9:30am, I was wheeled back to the OR. AJ had to wait outside the room while they prepped me and gave me the epidural. The room was freezing and I had these contraptions hooked up to my legs. The room so sterile and I remember seeing the little bed set up for Luca. The anesthesiologist talked to me about the epidural and how I would feel pressure, but no pain. I received a quick shot as a local anesthetic for the epidural, and right before it was given to me, someone ran back into the OR yelling that the OR at CHLA was not ready and to hold off on the c-section. The anesthesiologist was furious – he literally had the needle to my back to give me the epidural. Needless to say, I became a very quick emotional wreck. Why was this happening? The whole point of this scheduled and planned c-section was to have all the doctors and ORs and everything else ready to go for Luca’s arrival. So, they took off all the contraptions, put me back in a regular bed, and wheeled back down the hall to wait.
Once re-settled in a holding room, I was pumped full again with fluids. Just as I was re-situated, CHLA called and said they were ready and I was wheeled back again to the OR. I was reattached to all the contraptions and got the epidural. AJ still wasn’t allowed in the OR at that point. The anesthesiologist told the nurse to expand the IV port in my hand, and that was the worst physical pain I felt throughout the entire process. I was so overcome with emotion that the anesthesiologist yelled that they were going to have to sedate me. I begged him not to because I HAD to see Luca. I got it together and they brought AJ in the room and started my surgery. There were SO many people in that room and most of them were there for Luca.
Luca is in a little bed somewhere between all those doctors.
At 10:35am, my little baby boy made his way into the world, crying and all. What a wonderful and relieving feeling that was. He weighed 6.61lbs, but there was no time to measure his length. I had a wonderful set of nurses who were there for me throughout the delivery. Because we knew that I wouldn’t get to see or hold Luca upon his arrival, one of the nurses took a ton of pictures on her phone. As things would happen, she would show me, and then go take more pictures. So, though I couldn’t see Luca as it was happening, I did see pictures right away. My first thought was wow, he looks just like me.
Once the team of neonatologists got Luca situated and ready for transport, they were off to CHLA with AJ. As they wheeled Luca out of the room, they stopped by me head so I could get a quick glimpse. I heard that Luca set the fastest transport record for Hollywood Presbyterian – 14 minutes from delivery to the OR at CHLA. (And the doctors tried to say he couldn’t compete… #winning!) By this time, I was so drugged up and really feeling loopy. My mom came into the OR for the remainder of my surgery. For those of you who know her, she is a saint and does not say bad words, but my first words to her were, “Mom, they’re trying to f*** me up!”. She responded with a quick and loud, “MEGAN!”. Everyone laughed, and apparently I said lots of other funny things, too. I knew the anesthesiologist already thought I was a nut job from my prior meltdown (but who doesn’t meltdown when they get to do almost do a c-section twice?!), and he clearly pumped whatever he had into my IV. No complaints. 😉
While Luca was at CHLA in surgery, I was in recovery back at HP. After a few hours, I was taken to my final room in the maternity ward. HP set us up nice in a corner unit with panoramic views of LA with an extra room in the suite for my guest of honor – my mom. My dad and father-in-law were back and forth between visiting with me and Luca, but AJ spent most of his time with Luca at CHLA. Shout out to my mom who stayed with me 24/7 – or maybe 23/7, I think she got to slip out to see Luca for a little – and was my VIP caretaker. The next day, I was ready to try to start to walking because I wanted to discharge as early as possible to get over to Luca. I guess I learned to watch what I wish for because I got to discharge early alright.
That day, AJ visited with me for a little bit and when he left to go back to CHLA, he told me that he would FaceTime me with Luca. I spent some time trying to walk and then realized that I never heard from him. I know things are crazy at CHLA, so I figured he just forgot and called him. No answer. I called both my dad and father-in-law, who were both with Luca, no answer. I called Luca’s CTICU room. No answer (and there’s always an answer there). I was getting a little worried, and finally my father-in-law answered the phone crying. I knew something was wrong and I feared the worst. I began screaming please God, no. I thought Luca died and all I could think about was that I wasn’t there with him. I was never with him.
The nurses knew something was wrong and began doing everything they could to comfort me and get me out of there. I had to “officially” discharge before I left… and get myself together. I had just sat up for the first time only a few hours earlier and they had just taken the catheter out (TMI, I know, but that’s how “unprepared” I was to leave). They had the doctor on the phone giving me quick post-surgery instructions and were having me sign all the required paperwork. By that time, my dad and AJ got to my room. As we were leaving, the nurses were taking the IV port from hand at the elevator. That’s how quick the entire process was.
I was wheeled across the parking lot and taken up to Luca’s room. He was still in surgery. Thankfully, Luca did not die, but the next worst possible thing happened – his heart crashed (aka cardiac arrest). There are “Code Blue” buttons throughout the entire hospital and of course in each patient room. My dad was in Luca’s room when it happened. He recalled the nurse, Carlos, pushing the button and a stampede of people running to the room. The CTICU suites are designed to turn into ORs, so they performed surgery right then and there. As it turns out, AJ got to CHLA from visiting me at HP right as it happened. He was trying to be buzzed in through the doors to the cardiac floor with no response. He ended up letting himself in and saw all the doctors running to Luca’s room. That’s why he never FaceTimed me.
Once I got to CHLA, they were finishing Luca’s surgery. Before we went into his room, the surgeon, neonatologist and other nurses came to talk to us about what happened. Luca’s heart crashed and Dr. Nelson gave him CPR. I think she said maybe five compressions. I remember this fact because it meant that brain damage was a very real possibility for Luca. They told us that Luca was put on ECMO, that he had 5-7 days to “get better”, and if he didn’t, then we’d need to make some decisions. The surgeon didn’t think Luca’s prognosis looked too good. I needed to get to my baby.
I was wheeled into Luca’s room with AJ to see him for the first time. There he was, on his little bed with a 3″ chest cavity exposing his heart and two tubes coming out hooked up to a massive machine, the ECMO circuit. He was intubated through his nose with bright orange tape keeping the tubes in place across his face. I just caressed his helpless little body and began talking and singing to him. I sang Jesus Loves Me and he opened his eyes right away. What an emotional moment.
My first time seeing Luca.
AJ and I stayed at Luca’s bedside all day and night. Our dads, “the grandpas”, took rotated for overnight stays so that Luca was never alone. The rest of us stayed at the Ronald McDonald House. The ability to stay at the Ronald McDonald House was a lifesaver for us and it’s a charity that I now feel a strong calling to support. More on that later. Each day, we’d get a report from Dr. Nelson on how Luca’s night went and what the plan and expectations were for the day. We never really got a “good” report expect for one day. Things never seemed to get worse, but never better. Luca’s kidneys were having a hard time allowing him to urinate and his body just would not release fluid. He was given a ton of fluids and blood transfusions and his poor little body was so swollen.
We had a team of the most wonderful, attentive, and compassionate nurses caring for Luca. Two nurses were in his room around the clock. One at his bedside and the other monitoring the ECMO machine. Luca had daily head ultrasounds to measure the size of his brain to look for possible brain damage. Luckily, he never appeared to have any (which really is miraculous considering he arrested, had CPR, and was on ECMO for so long).
Luca’s CTICU room. The machines to the left are his medications, the machine in the middle is the ECMO circuit, and the machine to the back right is the ventilator. There’s a couch by the window and that door is a bathroom.
Luca getting a head ultrasound. The nurses always gave him a cute combover after all the gel was in his hair.
One of Luca’s best days. When we arrived that morning, the nurses had him set up with the puppy.
On Thursday, September 4th, the doctors decided it was the best time to take Luca off ECMO. His heart showed ability to function while resting (on the machine) and the benefit of being on the machine was starting to be outweighed by the harm. The surgeons were going to do a hybrid version of the Norwood surgery (the surgery Luca was supposed to have at a couple days old) because of some of the work they already did when they put him on ECMO. Dr. Nelson told us she would only come out to update us if things were not looking good. She knew that I needed to hold Luca while he was still alive if things weren’t looking good. I had never had the chance to hold him yet. Sure enough, about 30 minutes into the surgery, she came out and said that his pressures were dropping and he was not going to make it. They cleared the room and brought AJ and me in. They immediately placed Luca in my arms. His sweet little eyes were open for a short time and I just hugged him and sang Jesus Loves Me again to him. His daddy was right there, too. Luca passed away peacefully in my arms at 3:16pm.
Even though this is long, it is really just a brief version of our week with Luca. I often fear that our time with Luca will turn into a faded a memory, and I needed to get down the turn of events of his precious life. Though Luca was on ECMO, which is a form of life support, it is a heart-lung bypass machine. It takes blood from the heart, through a machine to be oxygenated (artificial lung), and goes back into the body for circulation. While on ECMO, the heart and lungs are given a break from supporting the body. That’s why Luca had heart function while on the machine. Luca was still very interactive with us. He opened his eyes when we talked to him, we just had to block the light. He kicked his little feet around and moved his arms. He squeezed our fingers. He moved his mouth and took a pacifier. We were with him around the clock at his bedside, reading to him, talking and singing to him, caressing and touching him, and helping the nurses as best we could.
To my sweet Luca: I carry your heart. I carry it in my heart.
Thanks for reading and continuing to think of and pray for our family.
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LUCA KNOWS HEART 