Luca’s Story – Part 3 – A Broken Heart

I’ve been putting off writing this post because it is the hardest for me.  I had to stop many times, because writing this truly brings back the worst moments of my life.  Reading this part of our story might not be for everyone.  It is the most heart wrenching for me to remember and to tell.  Maybe you are pregnant and reading this augments the fears that you face during your pregnancy.  Maybe you lost a child of your own or a close friend or family member and this brings back your own grief and difficult memories.  Believe me, I get it.  I’ve learned that you have to take care of YOU before you can take care of anyone else, and that sometimes while you want to help someone else through their suffering, you may just need to take a step back and do what is healthiest and best for you.  After losing my son, I’ve realized that I have to be careful with what and who I surround myself with as I work through my grief.

But I also want you to know that while this is sad, this is all part of Luca’s life, and his memory is what makes me happy.  In the midst of my joy for him lies very deep sorrow.  But, I am so very lucky that God chose me to be his mom and I would not change a thing, because I love him for the exact little person that he was.  Because of my experiences facing this loss, I feel that I can truly appreciate happiness. They say that after a storm, comes a rainbow.  This chapter of our story, for me, is the worst of the storm, but after that storm came a beautiful rainbow- our son.

Continuing our story from Part 1 and Part 2, my mom and I returned to CT from Boston feeling heavy with sadness for my grandfather who had passed just days prior, and feeling terrified for the path ahead – our uphill battle to fight for Luca’s survival.  I spoke to my husband again the next day and he had spoken with his commanders who were working their hardest to get him home to Japan ASAP.  This was a huge relief, because it’s not an easy thing to leave a deployment early.  Not to mention, I couldn’t handle the stress of worrying about both my husband’s safety carrying out his deployed missions and my baby’s health issues too.  It was extremely difficult to talk to my husband based on his erratic work schedule, the time difference, and the spotty internet connection that we used to Skype or FaceTime.  Our conversations became more like business meetings.  We channeled our sadness into productivity in order to figure out our plans for the near future.  I would have to have Luca in the U.S., since only a handful of hospitals in the U.S. could handle the very specific surgery he required. So many questions had to be answered.  How long would I stay with my parents?  When would I move to Boston to be near the hospital?  Where would I stay?  How much would that cost?  Were there any programs to help with that cost?  When would my husband come to the U.S. to make sure he could be there for the delivery?  How much time off would the military give him?  Can we emergency PCS (PCS means when you move in the military)?  How do we begin that process? The stress was unbelievable.  I remember my mom trying to cheer me up with a shopping trip a few days after we got back from the hospital.  Instead of shopping (not that I could fit into anything at that point anyway!!!), I sat in the comfy chairs in the store with a mountain of paperwork trying to call my husband back five times, because that was the only time he could talk to me and we had so many things we had to discuss.  We kept on getting disconnected since his internet was so terrible.  Between his time zone, mine, and Japan (where all of our paperwork was being processed) it was very complicated. I carried my medical documents and military paperwork with me at all times, because I never knew when he might call me, so I had to be ready.  I would get so anxious and overwhelmed as we talked about everything.  My husband did his best to keep me calm as he handled his own stress, but it was a tense time for our marriage.

By the end of that week, we had managed to submit the necessary paperwork to ask the military to emergency PCS us to a location closer to Boston, or at least somewhere in the U.S. with access to a hospital that could handle Luca’s care.  That weekend, my family and friends threw a beautiful baby shower, which was one of the reasons I had flown home at that time.  While it was so wonderful to see everyone and such a happy occasion, I was so preoccupied with everything.  As I opened gifts, I thought about how I didn’t even know if my son would survive to be able to wear the tiny baby clothes that I received.  If he did make it, for the first few months of his life, he couldn’t even wear clothing because he would be hooked up to so many tubes and monitors.  I told my family and close friends the news that day and we all cried together.  Everyone was so supportive, but there was so much that was unknown.  Some said, “It will be okay!” and I honestly didn’t know if it would be okay.  That evening, my close family gathered together to have a small memorial for my grandfather.  It made me feel more at ease when I thought about him.  I knew he was watching over Luca.

The next week came and went and I was feeling much better as our next Boston appointments approached.  The bad news had begun to sink in and while I was still super stressed, I had a more positive outlook and was able to tell myself that Luca would be okay and believe it.  If his mommy and daddy could stay strong for him, then he would be strong too and everything would be okay.  I didn’t want to let my stress take a toll on my baby.  My doctors said that while I was considered high risk, Luca was perfectly safe in my belly and I could do everything as usual.  Whenever he decided to arrive would be when his heart would have to work on its own and the problems would start.  I went to the gym most days, took naps, and did all I could to take care of myself.

My husband began to make his way back to Japan from his deployed location a couple of days before I left for my next Boston visit.  He had several days of travel ahead of him as he had to take a very lengthy, convoluted route on both military and commercial flights to get back.  Simultaneously, my mom and I departed for Boston on May 4th to be there for all of my appointments on May 5th.

29 weeks pregnant – the day we left for Boston

As I’m starting to write about this day, I feel physically sick.  My chest is tight and I feel like my heart might explode.  It is not a day that I wish to remember.  On May 5th, we arrived to my first appointment at the Advanced Fetal Care Center at Boston Children’s.  I felt really good about the appointment.  The news had sunk in for two weeks and I was ready to learn more about what we had to do to fight for Luca’s life.  I began my second fetal echocardiogram (same as the last time) so that the doctors could hopefully get more images of Luca’s heart that would be helpful for them to plan his first surgery.  After, we sat down again with our doctor and learned more about everything we should expect moving forward.  Surgeries, complications, expectations, and more.  Afterwards, my mom and I grabbed some lunch and headed over to the adjacent hospital, Brigham and Women’s, to have a regular ultrasound and pregnancy checkup, and to meet my new doctors who would be helping to deliver Luca.  I was excited and relieved to be having a regular appointment where I could see my baby and focus on how beautiful he was and not hear so much about what was wrong with his heart.  We arrived at the Maternal Fetal Care Center (for high-risk pregnancies) and waited.  I talked to my husband a few minutes before I was called in and we shared our happiness and excitement.  We were both feeling positive after the first appointment.  He was boarding a 12-hour flight to Tokyo, so I wouldn’t get to speak to him until the next day.  We said our goodbyes and I was called in.  A sonographer began my ultrasound and there was my baby!  It was my first 4D ultrasound and it was INCREDIBLE!  I could see his little facial features – his tiny little lips and nose and fingers!  My heart was bursting with love – he was so perfect!  She said “Yes, he’s definitely a boy!”  I also remember her saying “Wow, he has some very nice living quarters” and that it was very roomy for him, because there was a good amount of amniotic fluid surrounding him.  I figured that was a positive thing… sounded positive to me, right?  She continued with the ultrasound and I was beginning to get annoyed because I had another appointment across the hall that I had to get to in five minutes. What more did they have to see?  My baby and I have been put through so much testing already, haven’t they seen all this already??  I asked her if everything was okay.  She said, “I’m just putting everything into the computer and the computer measures everything.”  Then she said, “I’m just going to go get the doctor.  I’ll be right back.”  I was never supposed to see a doctor at that appointment – why was she getting the doctor?  I started to worry a little, but not that much.  Maybe this was just part of the appointment?

  

A doctor I had never seen and wasn’t scheduled to see entered the room.  I don’t remember her name, but remember her being very serious.  She looked at the ultrasound again.  It seemed like she took an eternity.  I was getting angry.  What more do you have to look at?  My heart was starting to beat faster.  I said, “Is there something wrong?  Please tell me what is wrong!”  She stopped and took a deep breath and said, “I’m so sorry, but your baby has many more problems other than his heart.  He will not survive.”  I could not even comprehend what she had said.  I honestly don’t even remember what I said after that.  I just remember that I truly felt like I was going to have a heart attack.  I couldn’t breathe or speak.  My mother was with me, but honestly I don’t remember who or what was around me at that point. I do remember the sonographer was crying too.  It felt like the world was going dark and closing in on me.  They rushed me to another room to take my blood pressure, which was through the roof.  I was hysterical and inconsolable.  One thing I will never forget is as I sat there, I could hear another woman in a room nearby screaming and wailing.  I knew she had been given the same news.  I thought to myself, God, how could this be?  What did I do?  How can this really be real?  I wanted my husband and I wouldn’t be able to talk to him until the next day.  A nurse brought us to a private waiting area where we waited to be seen by other doctors.  We were called in to speak with a geneticist/OBGYN and the Director of Maternal Fetal Medicine.  They told me a very long list of all of the physical problems that they observed on the ultrasound.  It just seemed unbelievable.  My baby looked fine to me!  They said, “Your baby most likely has a chromosomal abnormality.  We do not know what it is, but we know that he cannot survive.”  Again, this time is very blurred to me now.  It’s hard to remember the specifics, but I will never forget the stabbing pain in my heart.  I do remember asking over and over again, “What do I do?  Tell me what to do?  I don’t know what to do!” Then the geneticist said, “Many women would choose to terminate their pregnancy.”  I did know that was not an option for me.  Were they serious?  I was 29 weeks!  And even if I was not that far along, this was my son!  I can feel him move!  I know his personality!  This is my baby!  I said no.  I would not do that.  Tell me another option.  They said I could carry him as long as I could.  He might not make it to his birthday and if he did, he would likely survive minutes, hours, days at the most.  We could offer him “comfort care” – keep him comfortable until he passed away.  I said that was what I would do.

The doctors knew that I had come all the way from Japan to Boston for these visits, so they said they would schedule me the next day for more testing.  We wanted to try to find out exactly what kind of chromosomal condition Luca had, so that hopefully we would know more about what to expect and be able to prepare as much as possible.  We also wanted to know if this was genetic or not.  The doctors scrambled to set up an MRI, another ultrasound, and finally an amniocentesis for the next day.  My mom frantically called to postpone our train tickets home and find a hotel since ours was booked for that night.

We met once again with my first doctor, the pediatric cardiologist from Boston Children’s.  He could not believe what had transpired.  He hugged me and told me over and over how sorry he was.  Many of the doctors I saw that day had tears in their eyes.  I will say that I am thankful for all of those doctors.  I am thankful that I was at some of the best hospitals in the world where they could see the problem and tell me immediately what was going on.  They explained my options and patiently answered my questions without pushing me in any one direction.  There is no good way to tell someone that their baby is going to die; however, they were professional, compassionate, and direct and I thank them for that.

That night I didn’t say much.  I couldn’t think or speak or eat.  I definitely couldn’t sleep.  I just kept thinking about my baby.  I told him over and over I loved him.  I prayed so hard to God.  To please help me.  Please tell me what to do?  I would drift off to sleep for a little at a time, then wake up and be horrified at the nightmare which was now my life.  It was like having to relive what that doctor told me over and over again.

My husband texted me around 4am.  He had landed in Tokyo and was waiting for his next flight to Okinawa.  He asked how the appointments were?  How was our baby??  He was eager to know everything and talk to me.  He also said he had heard back from the military regarding our request for an emergency move.  We were flatly denied because the military said that the issues were “only speculative at best at this time” and there “was no viable patient on which to report” since our baby was not born.  He was furious.  I would have been too, except that none of that mattered anymore.  I was obviously awake, but I could not bear to tell him the truth while he was exhausted and sitting in an airport by himself.  Actually, I didn’t know how I could ever tell the man I love that his son would not survive.  I told him not to worry about that for now and “let’s talk about that later.”  I lied and said that I was fine, but too sleepy to talk and we were unable to finish the appointments they wanted me to have, so I just had to go back to the hospital the next day and I would talk to him in the morning when he got back home to Okinawa.  I told him, yes, we are having a boy and sent him pictures of the ultrasounds. Thankfully he seemed satisfied with that response and I went back to sleep.

Again, I will pause at this point.  For me, this was the absolute most painful part of my journey.  My dreams of having my son were completely shattered.  I have heard, “At least you’re young.”  That is not at all helpful.  I don’t want A baby, I want THIS baby.  If you have lost someone unexpectedly in your life, then perhaps you can imagine this sort of pain.  For me this was a turning point.  I realized that nothing else matters.  All of the little things we complain about don’t matter.  The people who you love do.  My baby was still alive and I was going to make sure that he knew how much we loved him and cherish every moment we had with him.  I realized that I was not in control and could not fix this, only God could determine the future.  I prayed that whatever the outcome, Luca would not suffer.  And that he would know how much we love him and how much we wanted him.

This past weekend, we had great weather here in Okinawa. I went down to the seawall about five minutes from my house to sit and think about Luca.  Being near the ocean always helps me feel calmer and close to God.

When I was on my way home, two friends texted me that they were thinking of Luca because they saw rainbows!  It was certainly rainbow weather outside, so I looked around frantically for one.  Since Luca was born, I have seen SO many rainbows and they always remind me of him.  I prayed to God to please show me a sign that Luca is okay and happy and a very faint rainbow appeared right then!

It quickly disappeared after just seconds and I thought, please come back!!!  I looked down for a second and then looked up and saw THIS!

It was the most vivid, beautiful (double!) rainbow I had ever seen! Right in front of me!  The picture does not do it justice.  It made me so happy!  Here is another photo that my friend took from a different angle – she saw it at the same moment!

On top of all of these rainbows, I was taking a walk the next day and saw a butterfly.  I put my finger out and it landed on my finger!  To me, these are all small moments of peace, when I am reassured that Luca is okay and I will be okay. I am no expert on how God communicates, but I see these moments as incredible gifts that bring me much lasting joy.  These days, I take more time to myself, and to appreciate my family, friendships, and surroundings.  Luca has changed my life in so many ways and I give thanks for all he has taught me.

You, Lord, keep my lamp burning; my God turns my darkness into light. ~Psalm 18:28