This past week was pretty good. I was so happy after the Walk to Remember – it lifted my spirits for days. Plus, my husband came home from a work trip, and it’s always easier to deal with everything when he is home. However, the days leading up to the 5th of the month are always hard for me, since Luca passed away on the 4th of June and was born on the 5th. I always become extra emotional on those days of each month and last week it hit me pretty hard. There is really nothing that anyone can do or say to make those days better, except for just listening. I am so thankful for my husband, mother, and best friends who just hugged me and listened to me while I endured those strong moments of pain. I appreciate you more than you ever will know.
This week a year ago was also when I first found out I was pregnant, so that has been on my mind. How we were so excited and a little scared too! How life can change so much in a year. On this day of my life though, I look back on this past year and I’m so grateful that I was able to enjoy most of my pregnancy with Luca. I think about how he would be five months old now. Maybe he would be moving more and getting ready to crawl, making little noises at me, sitting up… Would he be sleeping through the night? Judging by his father, I think he would be a good sleeper!
Getting back to Luca’s story, I left off with the day I got the news that Luca would not survive and trying to find ways to not have to tell my husband before he got back home. Later that morning, the day after we had received the tragic news about Luca, my mom and I headed back to the hospital for the testing they had scheduled for me. I had to be there around 7 a.m. for an MRI, my first appointment. After that, I was to have another ultrasound with a radiologist, and finally an amniocentesis. All different techniques for the doctors to hopefully gain insight into what underlying condition might be causing Luca’s problems. This would hopefully help us to prepare for what was to come. I was still able to avoid my husband as he had boarded his last flight to get home to Okinawa. I was so exhausted from not sleeping, the early wakeup, and mostly from the worry and grief repeating itself over and over in my head. The medical staff administering the MRI were extremely nice. I wondered if they knew about Luca – that my baby was going to die. They were excited to hear about what it was like to live in Japan and commented on my very intricate Japanese pedicure as my toes stuck out of the end of the MRI machine. I laid there letting the machine do its work, listening to the loud beeps for about 45 minutes. I wondered if Luca was startled by them. I worried about laying on my back for so long. I let the tears flow down my cheeks as I thought about everything that had transpired in the last 24 hours. I was still in so much disbelief. They finished the MRI and I made my way back up to the Advanced Fetal Care Center where we had originally received Luca’s heart diagnosis. I checked my phone and Joe had made it to Okinawa. He was ten minutes from our house. I told him I needed him to stay awake and I would call him in ten minutes. I had to tell him.
A gift from the hotel we stayed at, which was affiliated with the hospitals.
I asked my nurse, who was such a kindhearted woman, if it would be possible to have a private room to talk to my husband. She said of course and led me down the hall to a room with a couch, a chair, and a full box of tissues. The feeling came back to me that I had the day prior when the doctor told me the terrible news. My chest was tightening and I felt like I couldn’t breathe. How do you tell your husband – your best friend – the worst news of his life? Here he was just walking in the door after days of travel exhausted and by himself after being deployed in a war zone and now this? I was so worried. I didn’t want him to have to be alone. I had never told him such an awful thing. I had never told anyone such an awful thing. And I couldn’t even be there to hug him or console each other. I pressed the button to FaceTime him and he appeared on the screen. He looked so tired, but happy to see me. I remember him saying that he could only talk for a few minutes because he was falling asleep. He had no idea. I told him that things were not going well. That the news was very bad. The worst news ever. Our baby was not going to make it. Our son was going to die. His heart could not be fixed. Nothing could be fixed. Like the conversations of the day prior, I can’t remember exactly what was said, just that I know I could feel the pain in my husband’s heart as I watched the news sink in. I wanted to reach through the screen and hold him. Let him kiss my belly. Just lay there and cry together. To see each other in that much pain, the tears streaming down our faces, and not be able to do anything about it or even be together was excruciating. I remember that the conversation was not too long, because really, what more could we say to each other? I wanted him to be able to rest and I also had to get to my next appointment, so we said our goodbyes.
I returned to the waiting room and shortly after was called in for my next appointment. A radiologist did another ultrasound for about an hour. I was so mentally and physically exhausted and completely drained from the stress and tears that I fell asleep for the entire ultrasound. My mom sat patiently next to me. I can’t imagine her not being there. She didn’t need to say anything to me, just her presence was comforting. I woke up at one point, but they told me to go ahead and rest.
Those first two appointments were to look more closely at Luca’s little body – his bones, organs, and especially his brain – to see if the doctors could piece the puzzle together and understand what kind of condition he had. I am not going to spend time writing about the many developmental issues that our son had, I don’t like to focus on what was wrong, and in the broader picture of his story it does not matter. The doctors were successful that day in learning more about what was going on from those appointments, but if anything was going to tell us exactly what was wrong, it was going to be my last doctor’s appointment – the amniocentesis.
Baby Luca 29 weeks
After the MRI and ultrasound at Boston Children’s Hospital, we made our way back over to Brigham and Women’s Hospital to the office where I had received the terrible news. Just going in there made me feel nauseous. My mom asked me if I wanted her to come with me into the room and I said no. Looking back, I have no idea why I said no and I really wish I had asked her to come with me, because it was the worst appointment of the day. I think in hindsight, I didn’t want her to have to see me in pain and wanted to give her a break from it all. I also think I thought that since it would be a quick appointment, it wouldn’t be a big deal (yea right). They put me in my room and I waited there alone for a little while. I heard a soft knock on the door. It was the sonographer from the day before. She was the one who had called in the doctor who gave us the bad news, and who cried with me as if she was mourning my baby too. She was young and beautiful with dark wavy hair, and she was so nice and compassionate. She gave me a hug and said she would be thinking of me. Next, two young nurses came in to do some initial prep work. To be honest, these were the only people who I can’t say I liked in my whole experience in Boston. They came in all chipper and with a smile on their face said, “How are you today??” I wanted to slap them. Are you kidding me? My baby is going to die. I’m f*&^ing awful. Do not ask me how I’m doing today. Luckily they didn’t stick around long, or if they did I don’t remember. I recall from that appointment there being many people in the room – maybe four or five people? The room seemed so crowded. The doctor asked me if I was ready. I was not. I couldn’t stop crying. I was so nervous. They were about to put a giant needle through my belly and I was not ready for that and never would be. They had one person doing an ultrasound to watch where baby Luca was and another person would insert the needle. They had to take extra care to do this carefully and quickly and not get the needle too close to the baby. I had to sign a form stating that I was okay with all of this, since there is a chance this could make me go into labor or harm the baby. I felt like a terrible mother. The actual procedure of the needle going into me took probably less than five minutes, but I was so shaken up and felt like my baby’s sacred and safe space in my belly had been utterly violated.
After it was over, I made sure that both clinics had my correct contact and insurance information. I got copies of all of the records they had available, since I would have to take everything back to Japan and make sure that all of these bills were properly paid for while living 14 times zones away. My mom and I headed to the train station and made our way home to CT.
When we got home, my stepdad opened the door and hugged me. He is a man of few words and not someone who shows a lot of emotion. I cried for a long time in his arms, then we went and sat on the couch. He kept holding me and telling me how sorry and sad he was. I don’t remember his exact words, just that I felt so comforted in that moment. I was worried about what to tell my sisters who are 14 years old. He said not to worry, that he had already told them, because it is important that they know. They would be fine.
Later, I tried to reach my husband again, but got no answer. It was about 12 hours since he had gone to bed, but I still could not reach him. I was so worried about how he was doing processing all of this and being by himself. I messaged two couples who we are very close with in Okinawa and told them the news and asked them to please take care of my husband until I could get home. They said, of course, they would visit him and bring him food. That made me feel better.
The next morning, I was finally able to reach him. He had slept for something like 15+ hours. (I shouldn’t have been shocked, I guess. He does like his sleep!) I think this was his way of dealing with everything, not to mention he was so jet lagged from his trip.
During that time, my emotions were changing every second. They would change from sadness, to numbness, to anger. Sometimes I just felt so angry. I felt like I just hated everyone and everything. Why did I have to suffer like this? I wanted other people to have to suffer like we did. I hesitate to even write that, but it’s the truth. I don’t have those feelings of anger so much anymore, thankfully, but when I think about how I used to feel, it’s all very vivid. That night I decided I wanted to take out my pain on someone, so I decided to call the woman from the military who wrote my husband the nasty denial email when we applied to be moved back to the U.S. for the sake of our son. I knew it wouldn’t change a thing, but I didn’t care. If my husband had been awake, I probably would have asked him if I should do this, and he would of said no, since he is the rational one, but I called. The phone rang and she actually picked up. I screamed at her more than I have ever yelled at anyone in my entire life. She thought I was mad that we had been denied, but I angrily explained that it was her tone, lack of compassion, heartless words, and the fact that she didn’t seem to believe a bunch of Harvard doctors that was uncalled for – not the denial itself. I knew she wasn’t really listening to me, but I didn’t care. I cried and screamed that my baby was going to die and I hoped that she would think about that and the awful person she was every time she wrote any email to any family like ours. I didn’t let her respond because I didn’t want to hear anything she had to say. I hung up the phone and was shaking. Looking back, I know I shouldn’t have done that and that some of my words were pretty harsh, but honestly I can’t say that I really regret it.
I was supposed to leave two days later for my friend’s wedding in Naples, Florida. My mom was going to be my date. I didn’t know what to do. My husband told me to go. I wasn’t sure that I could handle it and wanted so badly to be with my husband and catch an early flight back to Japan. He told me to go and try to enjoy myself and relax. My flight back to Okinawa was just a few days later, he said, so why don’t I just go and be with my friend who would be a source of support. I called my friend, the bride, Allison, who is like a sister to me. She told me to do whatever was best for me – no pressure – but that they would love to have me and maybe it would be good to get away and sit on a peaceful, warm beach for a few days? I worried that my sadness and our situation would cast a shadow over her special day. Without hesitation, she told me absolutely not and that she was there for me no matter what. Friends are there for each other during the good AND the bad. If I needed to skip out on parts of the wedding weekend, it was no problem. I appreciated everything she said, thought about it, and decided to go.
I talked to my husband a lot those next couple of days. We decided we had to pick a name for our baby. Initially, we were not going to tell anyone the name until he was born, but I felt a sense of urgency with the diagnosis – that we had to decide on his name and tell the world. I wanted people to refer to him by his name, because he was a person, not just a baby that wouldn’t survive. We hadn’t chosen a name, but Luca Gabriel was a top contender and we decided that would be his name. We initially picked Luca because we just liked it; however, when I researched the name, I knew it was perfect. Luca is the Italian version of Luke (my husband’s family is Italian) and St. Luke was the patron saint of physicians and doctors. Our Luca had been cared for by so many wonderful doctors, so I felt it was fitting for him to have a name of someone who watched over those wonderful people who had helped us so much. We gave him his middle name, Gabriel, after the archangel Gabriel, since he would be our angel always. Gabriel also means “God is my strength” and as a family, we needed to remind ourselves of that every day.
The day before I left for the wedding, the geneticist called me. After the amniocentesis in Boston, she had told me that the majority of the findings from the amnio would take several weeks to get back. She said that some results might be available within about 48 hours, but maybe not. She also said that after all of my testing, we might not ever find out what Luca had. I wasn’t expecting to get any real news until I got back to Japan. When I picked up the phone, she said that the initial results had come back 99.9% positive for Trisomy 18, or Edwards Syndrome, a chromosomal abnormality. This meant that he had an extra whole chromosome 18 – three had replicated instead of two. She also said that this did not come from me or my husband. It was a random occurrence. A lightning strike. Really bad luck. She said she was so sorry. It’s hard to describe how I felt during that conversation. I was relieved that they had figured out what it was. I was devastated that this was just more proof that he would not make it. I was relieved that it wasn’t genetic, but it was all impossible for me to understand how something like this could just happen randomly. I kept the diagnosis private for awhile, because in my heart I could not help believe that this was somehow my fault. I didn’t want others to think that too.
Today, I went on a walk with my friend. The most beautiful butterfly followed us for awhile and brought a smile to my face.
It was so nice to chat with my friend. I got to show her Luca’s room and his picture, which always makes me a proud mama!
I’ve realized recently that helping others through their own hard times really has helped me a lot. In the beginning, I couldn’t worry about anyone but myself and just trying to get through each day. I’m glad that now that I’m feeling better I’m able to start being there for others like they have done for me.
My husband and I are soon going on vacation for the first time since Luca was born. It will be nice to explore a new place and just relax and be with each other. He is the one person who helps me get through all of this the most. As always, we thank you so much for reading about Luca and our journey. ❤