Luca’s Story – Part 8 – Labor of Love

I feel like I have been holding off on writing about Luca’s birthday, because I’m afraid of not writing it beautifully or perfectly enough.  It was the biggest day of my life, next to marrying my handsome husband, and I want to depict it well.  However, all I can do is be real.  Disclaimer: this post is about childbirth, so if that’s not your thing, don’t read on!  But, I must write about it, because this day was the most beautiful and special of days to me.  The entire experience with my husband and my beautiful boy will forever help to heal my heart.


 

In my last post, we had just found out that sweet Luca’s heart had stopped beating.  After the doctor gave my husband and I some time alone to process what we had just learned, she came back to discuss the next steps.  As I mentioned previously, most people don’t ever really think about the fact that even if your baby dies, you must still go through labor and delivery in the majority of cases. We had already discussed this scenario and decided that I wanted to be induced immediately, so that we could meet Luca as soon as possible and see him in his best condition.  The doctor told us she would notify the hospital staff.  In the meantime,  and we could go home and take our time to talk to our families and pack a bag, then come back to the hospital, so that’s what we did.

My husband drove us home.  We had arrived separately to the hospital for the appointment, but I was in no condition to drive myself at that point.  We called one of the military chaplains on the way home and he invited us to come to his office.  We stopped at the chapel on the way home to pray with the chaplain.  If I am being honest, I will say that at that moment, sitting with the chaplain and hearing his words did not comfort me.  I felt like none of his words were penetrating and nothing made sense.  We were trying to do the right thing… to pray for Luca and try to get through this and heal ourselves, but everything was just confusing and sad.  We got home and I sat on the couch while my husband called his boss.  We couldn’t call our families yet, because they were all sleeping with the time difference.  We went upstairs and began to pack a hospital bag.  How do you even pack a hospital bag when you know it will be the only time you’ll ever spend with your child?  I packed about 10 outfits because I had no idea what would fit him since I knew he would be so tiny. As we were getting things together, my nurse Katie, who had been helping us since we started going to the U.S. Naval Hospital, called us.  She told us that she thought the hospital staff coming on shift first thing the next morning would be a much better fit for our situation.  The midwife the next morning was one who I had requested, and Katie highly recommended that we wait until then in order to have the best experience.  I didn’t have to think twice to agree to her suggestion.  While I wanted to meet Luca as soon as possible, I wanted his day to be peaceful and perfect and I trusted Katie’s opinion more than anyone at that hospital.  It was vital for those surrounding us to be respectful and compassionate and Katie assured me that would be the case that next day.

We told our families that night and comforted each other as best as we could.  We notified our doula and photographer that we would need them the next day.  There really wasn’t much to say and I was too exhausted to talk to many people.  It was actually good that we stayed home that night because I fell right asleep and slept the whole night.  Katie told us that the hospital would be calling between 5-6 a.m. the next morning to confirm when we should come to the hospital.

The next morning, my husband handled all of the hospital coordination and we arrived to the hospital around 7:30 a.m.  I was completely overwhelmed walking into the building.  I remember a friend tapped me on the shoulder and gave me a hug as she spotted me in the entrance area and I know I must have looked like a deer in headlights… with my hospital bag and pillow under my arm getting ready to deliver a baby that I would never bring home.

At the same time, I was really excited.  I was so eager to see his sweet face and hold him and smell his sweet baby smell!  It was such a strange mix of emotions.  Looking back, I don’t think I cried as much that morning.  I think I had run out of tears.  My husband and I were both in “game time” mode and just ready to hear about the next steps.  After checking in, we were brought to our room, which was the same room Katie had told us she would try to secure for us – a nice big private room all the way at the end of the hall.  On the door hung the symbol of a leaf, signifying to all medical staff that we were experiencing a loss, so they could act accordingly.

As most parents know, labor is a lot of waiting around!  When we arrived, there was plenty of paperwork to do, and lots of discussion to be had.  After that, our midwife discussed induction options with us.  At 34 weeks pregnant, my body was not showing signs of being ready for labor, so induction was absolutely necessary.  Induction for the purpose of delivering a stillborn baby is completely different than an induction of a 40 weeks pregnant lady who just needs a little nudge in the right direction.  She told me I had two drug options: Cervidil and Cytotec.  Now, please note that I’m not a doctor or an expert, so I am simply describing all of this as I remember it and from my own perspective.  The two drugs had differences.  Cervidil was – generally speaking – a gentler approach.  The induction would take longer, but it was “less aggressive” and gentler on my body.  Cytotec would work more quickly and tended to be more aggressive (and therefore painful).  I had read and watched documentaries that talked about how terrible and even potentially dangerous Cytotec was (go ahead and google it), so I quickly chose option number one, Cervidil.  We told the midwife and she left to go secure that for me.  I didn’t think twice about it until she came back and told us that unfortunately, the hospital was OUT of Cervidil!!!!  You have got to be kidding me.  If you live on this island, then you understand how ridiculous and almost comical that is.  We have regular issues at the military commissaries (grocery stores) where they will be out of milk and yogurt for weeks.  I couldn’t believe it, but then again I could – typical Okinawa!  Because shipments from the U.S. are not frequent and take so long to get to Japan, she said she had no idea when the hospital would get more.  She offered to call nearby Japanese hospitals to try to get some, but warned us that the Japanese hospitals usually did not carry that particular drug.  I asked her to please call, but she came back with no luck.  My only option to meet my son any time soon was the Cytotec, so I nervously gave the go ahead to administer the induction.  I have to say that I truly appreciate how straightforward my midwife was.  She explained everything in detail and answered every question I had.  I never felt rushed or pressured to make a certain choice.  It was extremely overwhelming at times to make these decisions and a couple times I just asked her, “If you were me, what would you do?”  I appreciated her kindness and nonjudgemental feedback.

I believe they had to give me several times the amount they would have given a full term pregnant woman, because they really had to kickstart my body into labor.  When the medication was administered I wasn’t having any contractions.  By about 40 minutes later they picked up and quickly!  I went from zero to one thousand in less than an hour.  My midwife had warned me that it was not going to be pleasant.  She knew that before all of this I had wanted a completely natural birth.  She told me not to judge birth based on this birth, because the amount of medication I had to take would make it so much more intense and painful.  She wanted me to know that if I had another baby in the future, I could achieve my goals and not to be discouraged.  They were so right.  The contractions were so intense.  I wasn’t surprised so much by the pain of each individual contraction (hey, I knew labor wasn’t going to be a walk in the park), but I really had no gradual build in my labor.  It went from nothing to me being out of my mind so fast.  And, the worst part about it was that I had no break in contractions, they were one after the other.  I had no chance to relax and prepare for the next one, because it was already there.

I was induced at 11 a.m. and made a commitment to myself that I would try my hardest to stick to my goal of working through everything on my own.  I told the nurse not to even mention an epidural to me – that if I decided I wanted one, I would let her know.  I wasn’t ruling it out, I just wanted to make my own decisions.  She respected my wishes.  I worked through the contractions as best I could for about five hours.  My doula, Amanda, and my husband were wonderful, helping me into different positions, playing my hypnobirthing CD, rubbing my back.  Amanda was so great at reassuring me and helping my husband know how to best support me.  At one point, she suggested that he take me into the shower because the warm water would help me to feel better.  I had just blow dried (and straightened) my hair that morning (hey, I had lots of time waiting around!) and the whole time I was in the shower I was yelling “DON’T GET MY HAIR WET!”  Poor husband!  Haha.

After five hours, my midwife came back and asked if I wanted to know my progress.  You’re damn right I wanted to know my progress!  Unfortunately, I was only three centimeters dilated (and I had started at one). I felt so frustrated and defeated.  I could not stand the constant pain – my husband later told me that the screen monitoring my contractions was just basically a flat line way up high, showing that it was just contraction after contraction after contraction with no dip or break. I told the nurse to give me the epidural.  Now.  She went to go get the anesthesiologist, but came back and said he was “unavailable” dealing with an emergency in the ER (there is only one on shift at a time here).  ARE YOU KIDDING ME?!  I told her she needed to (please) figure something else out, so she brought me morphine (or something similar).  The rules were much different for me because Luca was not alive – they did not have to worry about medication like that putting stress on the baby, so I was permitted to have pain killers.  I was also able to sneak a few snacks, since the likelihood of an emergency c-section was very low for me.  The morphine gave me almost instant relief.  I finally could take a breath and rest a moment.  It also made me pretty loopy!  When the anesthesiologist finally arrived, he was a serious dude and started giving me some spiel about how he was going to put a needle in my back and it would be painful, and I said something like “YOU DON’T EVEN KNOW PAIN!!!”  Men.  Didn’t even feel the needle.  Thanks, morphine!

The painkillers quickly wore off since that was supposed to be just enough to hold me over until the epidural.  The epidural gave me relief for a little while, then about 45 minutes later the pain started creeping back, particularly on my left side.  I just dealt with it for awhile, because I had no idea how epidurals were supposed to be anyway, but eventually I told the nurse that the epidural did not seem to be working.  She called the anesthesiologist and he said he could come try to adjust the epidural.  Before he arrived, my midwife let me know that she would have to check me again soon and if I had not made progress, we would have to talk about either breaking my water or administering Pitocin, another induction drug. The doctor walked in and had me turn on my side so he could try to fix the epidural.  It’s amazing how so many people get to see ALL PARTS of you when you’re in labor and you just don’t care!  At that very moment, my water broke.  Everywhere.  Like, we’re talking out of the movies, people.  I literally had no idea what was going on, but then my midwife happily exclaimed, “Your water broke!”  I was mortified that this young doctor man had witnessed what looked like a category 5 typhoon went through the room.  But, on the bright side, the Cytotec had worn off and my water breaking naturally meant that my body was taking over now.  I was getting closer to meeting my baby!

I definitely need to take a moment to talk about how amazing my husband was during my labor.  He took care of me all day catering to my every need – rubbing my back, holding my hand, massaging my feet and hands, reassuring me.  He put my socks on and took them off about 1,000 times.  Fed me ice chips.  He remained calm through everything and didn’t hold it against me when I got cranky.  He will always be the very best husband and daddy in my book and I can’t ever thank him enough. ❤

Whatever the anesthesiologist did seemed to help for a little bit, but then the epidural wore off again.  I guess it just wasn’t meant for me, because all the pain came back eventually.  After some more time passed and things were getting intense, the doctor suggested I turn onto my left side because the pain was more severe on that side.  Perhaps the epidural medication would go to that side if I moved that way.  My husband helped me slowly but surely roll over.  It felt like that took forever to move, because it was so painful to change positions.  As soon as I got onto my side, I could feel my baby drop immediately and there was a lot of pressure.  I just knew he was ready to arrive!  Of course I started freaking out, and my midwife calmly confirmed that I was ten centimeters dilated and ready to have my baby!

Maybe I’m the only one, but at that point when I realized I was about to give birth, I started to panic.  I just wasn’t sure I could do this!  I hadn’t done this before!  How would I know what to do?  I was feeling every contraction (thanks for nothing, epidural!), but to be honest, I am really glad that the epidural did not work out.  It wasn’t what I had wanted, and now, I was really able to feel the slow build of each contraction and work directly with my body, breathing through each contraction and making progress each time.  And because this was normal labor and not me on drugs anymore, there was a nice break between each contraction where I could collect myself and get ready for the next one.  It was like my body was telling me to just let it do what it was supposed to do.

Those last 30 minutes were really intense, but truly amazing and powerful.  I think having that experience really helped me to cope with our loss and bond with our baby.  After just two or three pushes, I heard my midwife say as he was being born, “Here he is! Grab your baby!” and I did!  I picked him right up and put him on my chest and it was pure love.

Ruotolo Family-049

Kristi James Photography


It is my hope that somehow my blog can reach others going through similar struggles.  I want them to know that they are not alone.  Stillbirth affects about 1% of all pregnancies and about 24,000 babies are stillborn in the U.S. each year.  That is 10 times as many babies who are lost each year to Sudden Infant Death Syndrome (SIDS), another terrible cause of infant death that is much more well known and widely discussed (cdc.gov).  Additionally, around 1 out of 2,500 babies are affected by Trisomy 18 (www.ncbi.nlm.nih.gov).  We can be glad about the fact that most pregnancies result in healthy babies, but let’s also not forget the thousands of families who quietly struggle through this type of loss on a daily basis.

I will pause for now, because I feel that I need a whole other post for the time that we spent with Luca.  It is my wish that by writing about his birthday, people will learn that while it was a very sad day, it was also incredibly joyous.  I love when I can share my birth story with others – to celebrate Luca, or to simply be a normal mom and compare the ups and downs of labor.  To be continued… ❤

 

 

 

 

Luca’s Story – Part 7 – Running Out of Time

I’ve been pretty busy lately and I’ve been meaning to write another post for weeks now.  I can’t complain about my busyness though as my time has been filled with two great vacations with my wonderful husband and great friends!  We had so much fun skiing and exploring northern Japan in Hokkaido, and I also had a blast with some amazing girlfriends in Taiwan.

 


In my last post, I talked about preparing for Luca’s birth and deciding on a hospital.  While preparing for his birth, we also decided to prepare ourselves as much as we could for his death.

Writing the word “death” is sometimes hard for me to do, because each time it reminds me of the permanence of the loss of our son.  It also is a reminder of how our society these days is just not that comfortable talking about death.

My husband and I read an incredibly helpful book that helped us tremendously.  I was desperate to read about how exactly I should handle this; I wanted for someone to tell me what I should do.  One of the best resources I found was the book, A Gift of Time.  Nothing can prepare you for the death of your child, but I can honestly say that reading this book prepared me as much as possible.  I want to do a full blog post reviewing this book in the future, but in short, it is written for families who are expecting and have been given a fatal diagnosis.  It talks about many important decisions to consider and ways to plan during that very difficult time, as well as interviews with families who have gone through this, their feedback, and what they were glad they did or wished they had done.

One of the things that many families suggested was planning aspects of their child’s funeral before the birth.  Not necessarily planning the entire thing, but thinking about general aspects of that day, so that you could be prepared when the time came.  I honestly could have never imagined making such decisions.  There are probably people out there who might think we are giving up on our baby to plan such a thing, but I disagree (and to be honest I don’t want to hear anyone’s opinion on this if they have not gone through it themselves).  I truly believe that planning that special and sacred day for Luca was an act of good parenting.  I sat on the couch listening to music, crying through each song as I read each lyric and thought about what would be most appropriate for him.  I spoke to our minister back home about what a funeral service for our baby would be like.  I had not attended many funerals at my church, thankfully, and really did not know what to expect.  I found myself getting frustrated at times, because people helping us with this process would ask us what we wanted – what kind of headstone or what aspects of the memorial service did I want to include?  How was I supposed to know what to do??  My mother helped us tremendously by visiting each of the cemeteries in town and helping us choose the most beautiful spot where Luca would be laid to rest.  While it was so difficult to talk about those things, I have zero regrets that we took the time to do that.  I would have never been able to make all of those decisions just days after Luca passed.  Additionally, planning all of this from the other side of the world was hard enough.  I did not want his funeral to be thrown together at the last minute.  I wanted it to be a beautiful celebration of his little life where each song, photo, flower, scripture reading, and more would be exactly how we wanted to honor him, remember him, and pray for him.

Another idea from the book we read was taking photos – as many as possible.  Pregnancy photos, family photos, and birth photos.  Families said that while the photos might be hard to look at early after the loss, it was the best decision many of them made.  That they couldn’t have possibly had enough photos of their baby.  I wanted to commemorate my pregnancy with Luca and remember the time that he was alive and well in my belly, so I asked my friend Mindy to take pictures for us.  I hadn’t really thought about maternity photos until we had received the fatal diagnosis, but I knew that we had to have them after that.  Mindy had offered to take pictures for me at my baby shower, but that was obviously canceled, so instead she insisted on taking these photos as a gift to us to remember Luca.  It was the best gift ever!  Another friend of mine, Kathy, did my hair that day and also insisted that be her gift.  Our military family here is like no other.  Our friends took such great care of us each step of the way.

The day of the shoot turned out to be spectacular weather.  It was the end of May and the middle of the rainy season and most days were disgustingly humid and overcast or raining.  That day, the humidity lifted and the sun came out without it being excruciatingly hot – that never happens here! We went to Toguchi Beach, a gorgeous beach that many photographers frequent since it has stunning views of the sunset and beautiful rock formations.  Mindy made me feel like the prettiest pregnant mama.  Her and our friend, Brette, who assisted her, spent hours with me and my husband snapping so many photos.  She is so talented and I am forever grateful for these stunning pictures we have to commemorate our time with Luca and our time here on this incredible island.

During those last few weeks, we continued to have many meetings.  Almost all of the people helping us along had never dealt with a scenario like ours, yet everyone was so gracious and willing to help in any way.  We continued to meet with our doula and I kept practicing my hypnobirthing for the big day.

I also decided to meet with a lactation consultant.  With all of the traveling I had to do and everything that had happened, I never got to take a breastfeeding class.  I knew it was unlikely that I would get to breastfeed Luca, but there was a possibility.  If there was even a chance – even if only for an hour – I wanted to be prepared to know what to do and how to comfort my baby.  She was incredibly knowledgable and came to our meeting with more information that she had researched specific to Luca’s diagnosis.  We talked about normal breastfeeding tips, and also about breastfeeding for bonding and comfort care.  She taught me ways that I could bond with Luca through breastfeeding even if he wasn’t strong enough to feed that much or at all on his own.  This was so important to me to have this knowledge, even if I never got to use it.  I found Christy through The Birth Education Center of Okinawa.

I continued to go to weekly appointments at the U.S. Naval Hospital Okinawa.  They told me I could come in as often as I liked, but wanted to see me weekly.  Every Thursday, my husband and I would get to see Luca’s beautiful face on the 4D ultrasound – it was amazing!!!  This one was my favorite and also makes me laugh because my friends thought that he had thick black hair, but it was really just the shadow haha!

IMG_0028

At that appointment and the ones prior, my doctor would gently explain to us each time that Luca’s heart was becoming weaker.  Fluid was slowly seeping into the chambers… a tiny bit more each visit.  I know she hesitated to tell me this, but I’m glad she was honest.  I pretended not to hear her, but I knew it was a possibility that he would not make it to his birthday.  I asked her if he was in any pain and she said he was not.  That as long as he was inside of me, I was protecting him from that pain and helping him to live.

The week after that ultrasound was the first week of June.  On June 2nd, I went to a farewell lunch for a friend.  Someone asked me at the lunch if I was feeling the baby kick a lot (a typical conversation starter with a pregnant lady of course). They knew our situation and I explained to her that because of Luca’s condition, I had more amniotic fluid than normal and because of that I could not really feel him move as much.  Truthfully, every day was scary because I felt like as the days passed, I could feel less and less.  It was stressful and I would be happy if I could just feel him even just a couple of times each day.  That evening when my husband came home from work, I told him I was really concerned that Luca had not moved.  He comforted me and said I’m sure he’s fine, but let’s just go to the hospital for peace of mind.  By the time we arrived, I was hysterical.  I was sure my baby was no longer alive.  I could barely breathe.  My husband told the nurses what was going on and they rushed me back and immediately checked for a heartbeat.  The nurse (who ended up being one of my labor nurses) was wonderful and immediately said, “your baby is fine, your baby is fine!  That’s his heartbeat!”  We were so relieved.

IMG_0029.JPG

33 weeks – one of the last pregnant pictures I have

We went home and felt more relaxed, but the next day was the same and it was hard for me to feel much of anything.  I thought I could feel something periodically, and convinced myself that he was still okay.  The day after that was Thursday, June 4th, our next scheduled appointment with the doctor.  We were excited to see Luca’s little face again.  We didn’t wait long – we never did, because they tried to schedule us at the end of the day, so that we wouldn’t have to face many other pregnant moms or babies.  They called us back and we waited for the doctor.  The doctor came in shortly after and right away put the monitor on me.  She knew that I never wanted to waste any time in doing that.  It was almost as if I knew that his heartbeat wouldn’t be there.  I just had this feeling when she brought the monitor towards my belly.  I felt calm, but also a deep sadness that today would be the day and it was.  “I am so sorry.  There is no heartbeat.”  My fear had come true – I would not ever get to see my son take a breath. I would never get to see his eyes looking up at me.  “Did he feel any pain?” I asked.  “No, absolutely he did not,” she said.  I knew that was what mattered most, but my heart still shattered.  She let us be for a bit and my husband and I just held each other and cried.  It wasn’t the same sadness as when I had received the diagnosis.  To me, that day was the worst.  That day I felt sadness, anger, and utter despair.  That was the worst of it for me.  This day was just sadness and the beginning of acceptance, and love.  Love for my husband who was able to be there with me to hold me as we helped each other along.  And so much love for my sweet baby who was now at peace and with God.


 

Teaching preschool here in Okinawa brings me so much joy.  The other day, I was in Luca’s room and decided to take a few of his books to school to read to my kids.  I picked a big colorful ABC book and when I read it aloud to my kids it was the first time I had opened the book.  I smiled when I read aloud and saw, “A is for angel” and “R is for rainbow!”  How perfect!  It made me really happy to do this, because in a way I feel like reading to my sweet students sometimes feels like I’m reading to him.

Before I end this post, I have to mention that I received a wonderful message from a friend the other day.  She told me that she was at a party and was chatting with a woman and then asked her if she had children.  The woman said that she had three children, but one, a son, was in heaven.  My friend asked her lots of questions about her son who had been stillborn, and the woman was very thankful for my friend being willing to talk to her and not be uncomfortable.  My friend told me that reading about Luca had “opened [her] eyes to how ignorant [she] was in reacting to such an event.”  This is really the best possible thing that can come out of this blog.  It is truly my hope that Luca’s story can make people realize that life has value no matter how long or short that life is.  Allowing someone to talk about a child they have lost, even for a brief moment, is such a gift.  I am so glad and grateful that my friend took that step out of her comfort zone and spoke to this woman about her experience. ❤

 

Luca’s Story – Part 6 – The Gift of Time

Grief is confusing.  It’s tiring, yet therapeutic.  It is lasting and very unpredictable.

I felt so much better in this new year… and then this past week just kind of sucked.  I’m much better now, but my point is that you just never know how the day will be until it’s there.  Things like having a routine appointment at the hospital here and walking down the stairwell, triggering thoughts of struggling down those same stairs after they told me Luca’s heart had stopped… trying to escape without anyone seeing me so emotional and gasping for air.  Having one of my sweet preschool kids eagerly ask, “Akachan?  Akachan?”  (“Baby?  Baby?”), because she remembered me being pregnant and loved to say “hello” to the baby in my belly.  (While that made me a little sad, it did warm my heart to know that she remembered my Luca!)  Having to explain what happened in my limited Japanese to one of my schools that I started teaching at again (hadn’t seen them since I was pregnant) and receiving only a blank stare of confusion and horror.  Going back and forth on the phone 12 time zones away between TRICARE and the Boston hospitals… praying that I submitted all of the correct paperwork to make sure all of Luca’s costly medical bills were covered and dealt with (they finally are and that was a huge relief).  And that was just this week.

Time does not heal all wounds.  Parents who have lost a child do not “move on” – they find ways to move forward.  Those moments were all triggered by things out of my control, yet I am becoming better at handling them.  It still surprises me, though, that you can feel like you are doing SO much better and having many happy days, only to wake up to an anxiety-filled, very difficult day the next day.  One day at a time is what I tell myself.


I really want to get back to what this blog started as… and that was to tell Luca’s story.  (If you would like to read the previous “chapters” of Luca’s story click here.)

After my U.S. trip came to a close, I survived the journey back to Okinawa and finally got back to my husband about four days after he had returned to Japan early from his deployment. It certainly wasn’t the romantic post-deployment reunion we had in past deployments.  When I arrived at the Naha airport, I was utterly exhausted and didn’t even have energy to cry even though I wanted to.

My husband took a couple days off from work, so we could spend some time together and reconnect after being apart for over a month while receiving so much bad news that had yet to sink in.  We had a lot to talk about and figure out, but tried to balance that with just relaxing and being together and enjoying the little baby in my belly.

Once I recovered from the jet lag, we went to a barbecue at my friend Laura’s house the first weekend I got back.  I honestly did not know if we should go.  Our friends who were going to be there knew our situation and I just didn’t even know how I was supposed to talk to people and figured no one would have any idea how to talk to us with this enormous elephant in the room.  My husband encouraged me to go, so we went.  I’m so glad we did, because my friends were so supportive and did their best to say the right things, listen, and put a smile on our faces.  I remember sharing the name we had picked and feeling so proud.

The last two weeks of May, we made an effort to do some Okinawa adventuring with Luca.  Even though it was getting hot outside and I was getting bigger and slower by the day, we were determined to take Luca to some of our favorite spots.  The Okinawa aquarium is a place I always imagined taking Luca someday, so we took an outing there.  My husband had never been!

IMG_0130

Exploring Sesoko Island

IMG_0131

IMG_0132

IMG_0129

Ice cream on a hot day

The next weekend, we signed up for glass blowing at one of the local Ryukyu glass stores… something Okinawa is famous for.

IMG_0135

It wasn’t quite as difficult as it looked!

IMG_0134

IMG_0137

The finished products!

IMG_0136

Okinawa soba for lunch!

We wanted to make memories together as a family.  Every minute counted as we just did not know how much longer we would have with our son.

The rest of our time was spent coordinating meetings and a birth plan.  Before I ever found out about Luca’s condition, my birth plan was all about the birth – my goal was to labor naturally, while trying to limit intervention as much as possible.  I actually didn’t even really need to put that in my plan, because the Japanese clinic was completely aligned with my birth goals.  However, all of that changed when we were given Luca’s diagnosis.  Our birth plan became less about labor and more about answering questions like what memories did we want to create with Luca for the short time he would be with us?  What kind of care did we want for him during that short precious time?  We met with my doctor at Yui clinic the day after I got back and told her everything.  Because Yui is a small birth clinic, I wasn’t even sure that she could keep me as a patient.  However, on the other hand, Luca needed comfort care – not complicated medical equipment.  Dr. Fumi said we could absolutely have our baby at Yui if we still wanted to.  I was thrilled to hear that was an option.

Early the next week, we met with the doctor who handles high risk pregnancies at the U.S. Naval Hospital Okinawa.  I will be completely honest, I went into that meeting with my guard completely up, ready to attack like a mama bear.  I had not had great experience with military medicine previously and I was really concerned that they would want to dictate how Luca’s birth would go.  Or tell us we would have to be medically evacuated to Hawaii.  The military is so used to saving lives every day, that I was convinced that they would want to take my son away from us and try to save him when I knew his life could not be saved.  Thankfully, my preconceived opinions were wrong.  The doctor sat with us for over an hour.  She listened to our story from start to finish, answered all of our questions, cried with us, and hugged us.  She was truly amazing.  She then brought us to meet with one of the neonatal doctors.  He started our meeting by asking if he could pray for our son.  He also cried with us.  There were so many hypothetical situations that could occur, and we wanted to try to plan for each of those situations as best as we could.  These are situations that you would never ever think that you would ever have to face.  We asked, if Luca survived for minutes or hours – God willing – what would they do?  I wanted to know that they were not going to tear my baby from me and hook him up to machines where he would be alone.  If we were so lucky to have that time, I wanted him to know the love and comfort of his mom and dad and pass peacefully in our arms.  We also wanted to ensure that he would not suffer.  The surgeon explained everything to us.  Both doctors agreed that letting Luca be with us was not only possible, but encouraged.

What if he survived a week?  Could we take him home?  The doctor said yes.  He explained how we could do that and about the feeding tube process, since Luca would most likely not be able to eat very well on his own.

We then spoke to our nurse Katie (my amazing nurse who I have spoke of before).  She leads the Resolve Through Sharing program at the hospital and works with bereaved families. She showed us the hospital room that she would try her best to put us in when the time came.  It was a large room at the end of the hallway and would ensure privacy.  She said a special symbol of a leaf would be placed on our door to let the hospital staff know that we were experiencing a loss.  Katie gave me her cell number and told me to text or call anytime and that she would do everything in her power to be with us on the day of the birth.  She also showed us a memory box that the hospital would put together for us to remember Luca.  My husband and I were just blown away.  We were so pleasantly surprised by the care and compassion being shown to us.

One last question we had to ask was, what would happen if our son could not make it to his birthday?  This is something that I have honestly never wondered, because why would you? What do you do if our baby dies?  Well, you still need to have your baby.  My doctors and most doctors encourage a vaginal birth for the sake of the mother’s health.  C-sections are major surgeries and doctors do not want to subject women to that unless medically necessary.  Many mothers who have a stillborn baby think that idea is torture.  Why should a woman who lost her baby be forced to go through all of that pain for hours or days when you have already been through so much pain and suffering in your heart?  I actually saw it from a different perspective.  Both my husband and I still wanted a natural birth even if Luca couldn’t make it.  I wanted this not only for my own health, but also because I felt that experience would help me to work through my grief.  I wanted to have that beautiful experience with my baby.  And no physical pain could ever compare to the stabbing pain in my heart.  On the other hand, I told my husband that under this scenario, I would not rule out an epidural because I just didn’t know how I would feel under these circumstances – God forbid.  Baby boys with Trisomy 18 have about a 40% chance of not making it to their birthday.  It was hard to face that a stillbirth could be a reality for us.  I prayed for Luca and tried not to think about it.

The doctors all said that we as Luca’s parents could make every decision.  We really walked away from the hospital meeting feeling that the hospital and doctors were all on our side.  I knew before I even asked my husband that we had both decided that the military hospital would be where we would have Luca.  I was disappointed to not have the birth at Yui, because I loved the staff there and I know it would have been a great experience, but I was too concerned about the language barrier when we had so many unknowns about how Luca’s birth would go.  I wanted to be somewhere where we could communicate quickly and easily.

It was around that time too that we decided we would tell everyone what was happening.  We had told some close family and friends, but many family members and friends still did not know the news.  I thought about it for about two weeks and then decided that it was best to just email everyone, because I could not bear at that time to tell people individually. At that point too, it was so hard when people would come up to me excitedly and ask, “How is the baby???” Or for the 100th time, “What is your nursery theme???” On the other hand I worried about what people would think.  I worried that people might blame me for Luca’s diagnosis.  That this somehow had to be my fault.  In the end, I wrote this email to our friends and family near and far:

Dear Family & Friends,

It is with a very heavy heart that we write this letter to you.  Please forgive this email, but we just don’t have the energy at this time to call everyone.  We wanted to give you an update on our baby boy.  As some of you know, our baby was diagnosed with a rare heart condition a few weeks ago. While this was scary enough, we had hope that with multiple surgeries he could live a healthy, normal life. A week and a half ago, we learned that he also has a rare chromosomal condition. The combination we are dealing with is extremely rare and these diagnoses together are unsurvivable. Whenever he decides to arrive, our sweet baby boy may live minutes to days at most. Our hearts are completely broken, but we will cherish every second that God gives us with him. We already know he is perfect.  We ask for you to please pray for our family and beautiful baby. There are just no words to describe how difficult this is and we are just trying to take one day at a time as we accept this reality.

We know it’s hard to know what to say to us and want to let you know that you can talk to us about our baby. Sometimes we may be sad and upset, but mostly it helps to acknowledge our baby boy and what’s going on otherwise this is a very lonely process. In the coming weeks and months, we will be needing an unbelievable amount of strength and courage.  If you can, please pray or hope for these qualities for us.  We will need them.  We are so lucky to have the wonderful friends and family that we have. We couldn’t get through this without you all.

We also wanted to share the name we have chosen for him – Luca Gabriel Ruotolo. Luca means “bringer of light” and was also a saint known for healing. Gabriel is after the angel Gabriel, also meaning “strength of God.” We will have our sweet Luca here in Okinawa, so that we can be together as a family, and will live in Okinawa until our tour is finished towards the end of 2016.

Again, we appreciate your love and support.

Love,

Jessi & Joe

I’m glad that we did that because there is no way I could have brought myself to tell everyone in person.  People wrote us so many beautiful and supportive messages that I read to this day.

It was also hard to carry out daily life at that point.  Some people were just too afraid to talk to me, and even in some cases acted like I was not even pregnant anymore.  That was so painful. I stopped going to crossfit, which had been a regular thing for me, because I would have had to tell my gym friends in person and I couldn’t handle it.  The alternative was not to tell them and have everyone ask about the baby.  I couldn’t handle that either.  I tried to get in and out of the post office and grocery store as quickly as possible, or shop off base so I wouldn’t have to run into anyone.

My close friends, on the other hand, helped me through.  It was the best when people just acted normal and acknowledged my pregnancy despite the circumstances… like if a friend saw me and exclaimed, “How is Luca today??”

One of my best friends who was also my neighbor here in Okinawa had a little baby girl who was a few months old at the time.  I think because I was so close to Hope, it didn’t bother me to be around her daughter, Cara.  In fact, it made me happy to hold her sweet little baby who always smiled when I held her.  Her husband was away for a few weeks at the time and she asked if I would want to come help give her little girl a bath.  I helped her with this routine several times and while it was sad to think that I wouldn’t be able to do this many times with Luca, it was therapeutic to share those special moments with them.  I knew I could be myself around them – happy or sad – and it was okay.  Cara will always have a special place in my heart because one of the very last pictures I have with Luca still safe in my belly was this one. ❤

IMG_0138

Me, Luca, and Cara 🙂


My husband and I were on a walk – I don’t remember if it was before or after Luca – and we talked about whether it was good or bad that we found out that he would not survive.  Would it have been better to live in blissful ignorance?  Now, I can definitively say that we are glad we had a month to prepare our minds and hearts.  And to prepare the best birthday for Luca.  That time truly was a gift.  I appreciated being pregnant so much more and did not take a second of that time for granted. ❤

 

Luca’s Story – Part 5 – Mother’s Day

I hope everyone had a wonderful Thanksgiving!  I have to admit, that was a hard day for me… but it got better.  Waking up on my most favorite holiday and preparing the food without Luca here to celebrate with us was painful.  I cried a lot.  But, my caring and patient husband helped me through the day, and we were so fortunate to spend the holiday with some of our closest friends who really are such a source of comfort for me.  We lit a special angel candle for Luca and our friends included him in their Thanksgiving prayer.  I also made some butterfly cookies to include with the desserts.  I am so very thankful for these friends who always remember Luca, yet also treat me like a normal person.  I treasure these friendships where I can talk openly about my son if I want, and not be stopped by silence.  Thank you, thank you. ❤

My mom surprised me recently with new plants for Luca’s grave!  For fall he had pumpkins, but he needed something new for Christmas and a cold New England winter.  She hired a gardener who planted tulip, crocus, hyacinth, and narcissus bulbs for spring in the shape of a heart – I love it!  They also planted two miniature evergreens for Christmas.

It gives me a lot of peace to know that Luca’s grave is being so well cared for back home and is looking so beautiful.


 

If this is your first time reading about Luca’s story, you can read the previous posts here.  It’s been a little bit since my last “chapter” shall I say… We left off towards the end of my Connecticut trip before I flew south for my friend’s wedding.

During the last few days at home in CT, I packed and got ready to leave for the wedding, which was in Naples, Florida.  I packed up everything for the wedding and then everything else so that my bags would be ready for my trek back to Japan, since I had to depart the day after we returned from Naples.  It was so hard to pack up all of the gifts that everyone had given to me at my baby shower.  I kept almost everything, except for some things that I had purchased on my own while at home which I returned. My mom went to the Carter’s outlet for me to return a huge bag of clothing, because I could not bear to step foot in that store.  I’m sure that was so hard for her too.

My mom and I headed to Naples early the Friday before Mother’s Day.  I was going through the airport security area and looking pretty large (I think I was about 30 weeks at that point) and this woman stopped me and asked how pregnant I was.  I answered and she said, “Ohhhh, I wouldn’t be traveling THAT pregnant” with a super judgey face.  Sometimes I really want to slap people.  I didn’t respond at all, but really wanted to tell her how my husband was DEPLOYED and my baby boy was DYING and I’m about to take 30 hours of air travel to JAPAN in a few days, so maybe she should lay off and keep her mouth shut.  Experiencing the loss of my son has definitely taught me to be more gentle and understanding (something I need to work on daily) – that you never know what someone is going through, so do not be quick to judge.

Anyway, when my mom and I arrived to Naples and saw the gorgeous bride-to-be and stunning waterfront hotel, I was glad we had made the trip.  I was honored to be one of Allison’s bridesmaids and was so glad that I could be there for her most special day.  Before I had arrived we talked about how we would handle the weekend.  We agreed that I wanted her to tell her parents and the bridal party about my situation that way people wouldn’t ask too many questions about the baby.  At that point, it was just days after we were given the fatal diagnosis and anything would set me off.  It would have been very painful to have people go on and on asking typical pregnancy and baby questions at that particular time.  Allison’s friends and family are wonderful people and the wedding was small, so I truly felt like I was with my own family.  Even though I was tired and my feet and back hurt, my mom I and danced the night away (thank you, bride, for providing us with flip flips!).  Looking back at the photos from that day, it makes me smile to remember the fun we had that weekend celebrating the bride and groom with little Luca in my belly, even in the midst of such a difficult time.

The day after the wedding was Mother’s Day.  My mom desperately wanted to find a way to cheer me up.  I could tell she was heartbroken for me and wanted to try to put a smile on my face.  But, it just wasn’t an easy time for me to smile.  She surprised me with a pair of glitzy sandals from the hotel gift shop that were exorbitantly priced – she tried everything to make me happier. The bride and groom hosted a lovely farewell brunch for everyone, and then my mom and I decided to treat each other to the spa for Mother’s Day, since we were staying until the next morning.  The spa attendant was a friendly, young guy and looked at me with a big smile on his face and said, “This must be the happiest Mother’s Day ever for you!”  I tried to smile back at him and hold back the tears.  I turned away and pretended to browse.  He began to tell my mom about the baby girl his wife just had and how life changing and special she was.  Thankfully, we were taken into our separate rooms shortly after.  I had a facial and the woman talked non-stop about my belly and baby and wanted to know everything about him and our plans.  I could barely keep myself together and just stopped responding to her until finally she got the message that I did not want to talk.  I felt badly that people were just trying to be nice and friendly and saying all the things that any mom-to-be would want to hear, but to me it was just a reminder of the nightmare I was living.

That night, I emailed my closest friend in Japan who was planning my shower.  I asked her to please cancel my baby shower, which was planned for less than two weeks later.  She had worked so hard and I had been looking forward to that day so much – spending the day celebrating my baby with my friends who were like my family – but there was no way it could happen now.  I asked her to please send this message to the guests:

As some of you know, our baby was diagnosed with a rare heart condition a few weeks ago. While this was scary enough, we had hope that with multiple surgeries he could live a healthy, normal life. A few days ago, we learned that he also has a rare chromosomal abnormality. The combination we are dealing with is extremely rare and these diagnoses together are unsurvivable. Whenever he decides to arrive, our sweet baby boy may live minutes to days at most. Our hearts are completely broken, but we will cherish every second that God gives us with him. We ask for you to please pray for our family and beautiful baby. There are just no words to describe how difficult this is and we are just trying to take one day at a time as we accept this reality. We appreciate your love and support. 

I couldn’t sleep, so I tried to be productive.  I emailed Dr. Fumi, my doctor in Okinawa to set up an appointment for Joe and I to meet with her and talk about everything.  I messaged my friend who is a nurse at the military hospital to set up a plan of action in case we wanted to change hospitals.  I wanted to consider all of our options.  Thank goodness I had her, because it was nearly impossible to contact the OBGYN clinic from the U.S. with the time difference.  I contacted my doula to set up a meeting with her to tell her the news and develop a plan.  My mom woke up and asked if I was okay and told me to please try to sleep.  I said okay, then snuck into the bathroom and sat on the floor researching birth photographers. I messaged three of them, explaining our situation and asking if they would be interested.  I was shocked by two immediate responses from the two photographers I wanted most.  One photographer said she was sorry she would not be available during the dates that I needed, but that she had lost her own baby years ago.  She offered to meet with me and be a shoulder to lean on any time I needed her.  That was one of the first times I realized that I was not alone and it was so comforting.  The other photographer messaged me right back and said it would be her honor to photograph our birth and baby and that she would not accept any payment for it.  I could not believe it.  I would have paid any amount of money for these photos, but she would not accept.  This was one of the greatest gifts anyone could give to us.

Getting all of those little plans worked out were ways that I felt that my husband and I could be good parents to Luca.  I knew I wouldn’t get to make many parental decisions in his short life, so I wanted to work very hard to make sure that everything was planned as best I could for the day of his birth.

Two days later, after saying goodbye to family, I began my very long journey back to Okinawa. It was a pretty tiring journey for a 30 weeks pregnant lady (or anyone for that matter), but I was so looking forward to getting back to my husband and my own bed.  I still cannot believe that we got through so much while being so far apart from each other, and I knew that just being physically together would make things a little easier.


 

One thing about living overseas in the military is the post office.  Particularly the post office at Christmastime.  Things can take forever to ship here, so it’s very exciting when they arrive!  However, it’s nearly impossible to surprise your husband with a gift, since the contents of each package are listed on the customs form on the box. Grrrr.  My husband went to get a package the other day that I was sure was a pair of shoes I ordered; however, it was really a very special Christmas present I ordered for him.  He came home and said, “I don’t think I was supposed to see that!” It didn’t matter because I was so excited that his gift had arrived that I had to give it to him early anyway.

For months, I have been tracking down the two outfits that Luca ever wore – the outfit he had on when we had him at the hospital and the outfit that he was buried in.  Both prints were not being manufactured anymore, but I was able to get one of them from another mom on base.  The other one was more difficult to track down, so my mother helped me out.  She went to Just Hatched in my hometown where it was purchased and explained the situation.  The very nice owner did not have any of that outfit left, so she called the manufacturer (Kickee Pants) and they sent three of the little outfits that Luca wore at the hospital!  I sent all of that to this amazing Etsy shop to have this little memory bear made.  I call him our “Luca Bear.” Isn’t he the cutest???  This little bear made my week! (And my husband loved him too. 🙂 )

IMG_0795

There are so many ways to remember a loved one and we are happy to have this to remind us of our little love. ❤

 

Luca’s Story – Part 4 – Sharing the News & Receiving a Diagnosis

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.

IMG_0793

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

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.

IMG_0791

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. ❤

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.

DSC_0036

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

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?

IMG_0016  IMG_0017

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.

IMG_0780

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!

IMG_0781

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!

IMG_0783

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!

IMG_0782

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

Luca’s Story – Part 2 – Something is Not Right

A few days ago, I was at the gym and saw a woman I recognized, but couldn’t remember how.  I heard her mention that she was going to “go light” because she had a baby in May and was still getting back to working out.  I then realized that we had worked out together a few times while pregnant.  (Actually, I think the last time I saw her she was pumping out pull-ups while prego – badass!)  I told her that I had had a baby too, just a month after her, and was getting back to working out as well.  She was so friendly and asked about my baby.  It felt refreshing just to chat like a regular mom for once.  I told her I had a little boy and his name was Luca.  I knew that this could become awkward if we continued this conversation, but I selfishly went on because I wanted to talk about Luca.  I was excited that I could talk about my baby.  Finally, she said, “He must be getting to such a fun age now!”  My heart stopped.  After pausing, I replied, “I’m sorry to tell you this, but my baby actually passed away.  But, it’s okay, because you really made my day by allowing me to talk about him.  So, thank you.”  She was obviously shocked, but she looked at me and said she was so glad that I could be with him for the brief time he was here on earth.  It meant so much to me that she was willing to talk to me and hear about him and not run from the conversation.  So many people are just horrified when they find out what happened, have no idea what to say, and end the conversation quickly and walk away.  I appreciate anyone who is willing to let themselves be uncomfortable for a few minutes and listen to me talk about my son, because the discomfort I feel is for a lifetime.


At 25 weeks, we went to our doctor for our last checkup before my husband was to deploy a few days later.  In the U.S. (or at least at the military hospital here), most pregnant women have a big ultrasound around 20 weeks (the anatomy scan, of course!); however, our Japanese clinic does a comprehensive ultrasound around 25 weeks.  We were very excited to hopefully find out the gender before my husband had to leave for awhile.  The subject of gender during my pregnancy was always kind of funny (and frustrating) because my doctor NEVER wanted to give me a straight answer.  She always said, “Maybe boy!”  This frustrated me to no end, since I am such a planner and needed to know!!!  I needed to pick out nursery colors!!! Come on!!!  My husband would always fight back his laughter when Dr. Fumi answered.  One time I asked her, “Well, when will we know for sure?”  She answered, “The day of the birth!”  When talking to my Japanese friends and those who knew Dr. Fumi, they said that this is what she always said, most likely because she did not want to take the chance of being wrong… and that even if she said “maybe,” it meant that she was pretty sure.  Another Japanese friend told me that when she was pregnant years ago, she asked to find out about the gender, but the doctor refused, saying that it was basically disrespectful to the baby’s spirit to be asking that question before the birth.  So interesting, yet so frustrating!

11100668_10100308079298483_8784697015915152540_n-2 11102794_10100308069977163_451799009457012318_n

Out exploring at 24 weeks

Our appointment was going well. We saw our midwives first, and then were eventually called for our ultrasound with Dr. Fumi.  Honestly, the only thing on my mind was excitement and seeing our baby on the ultrasound and hopefully confirming the gender.  Dr. Fumi was always very quiet and serious about her work, so it was not alarming when she acted that way and took a long time scanning me, particularly since this was scheduled to be a longer ultrasound.  I’m no doctor and barely ever knew what I was looking at on the screen, but after some time it occurred to me that she was spending a very long time looking at his heart.  I asked her if everything was okay – fully expecting her to say yes.  After a very long pause, she said, “I think there is an abnormality with baby’s heart.”  My own heart stopped and I felt like all of the blood was draining from my body.  I do not remember what I said next, but that I was crying and felt like I was having a panic attack.  Dr. Fumi said, “I want you to see a pediatric cardiologist.”  She told me not to worry and that she didn’t know for sure that something was wrong, but she wanted to check and be on the safe side.  So many things were running through my mind.  I had no idea how serious the problem could be.  My husband was leaving in just a few days.  I was leaving to go visit our families in the U.S. a few days after that.  I told all of this to Dr. Fumi.  She said, “If I were you, I would go see a doctor in the U.S.”  Okinawa is a very tiny island.  There is only one pediatric cardiologist on island and she is Japanese.  I only had three business days to try to get in and see her and naturally she was extremely busy.  Dr. Fumi tried her best to get me an appointment and she told me the doctor agreed to see me a few days later on her lunch hour, because that was the only time she had available. However, my translators were not available at that time and the big hospital I would be going to was all Japanese.  I spent an entire day frantically trying to find someone to come with me and translate and finally a friend said she could come with me.  That night, my husband and I went out to dinner with some friends and I got a call from Dr. Fumi in the middle of dinner saying that she was sorry, but the cardiologist cancelled my appointment, because they were not confident that my American military health insurance would pay the bill.  I was devastated, but there was nothing I could do.  I didn’t have time to fight it. We immediately went to plan B, which was to see a doctor in the U.S.  My parents had already been working on setting up that appointment and through family connections and the grace of God, we had an appointment a week and a half later at Boston Children’s Hospital – the number one ranked children’s hospital in the U.S., and specifically, the number one pediatric cardiac and cardiac surgical center in the U.S. While this was great news, a week and a half seemed like an absolute eternity for me.  I needed to know NOW if something was really wrong, but we had to wait.

I spent those last few days before my trip to the U.S. gathering my medical records and my doctor was able to translate her suspected diagnosis into English.  I read her note and it said “hypoplastic left heart syndrome” (HLHS).  My husband begged me to stop reading online.  He tried to convince me to not worry because we didn’t know anything for sure yet, but I couldn’t help myself.  When I researched, it said that HLHS was rare and the most serious of congenital heart defects, requiring multiple surgeries just after birth.  I tried not to think about it, but I was so worried. It was “rare,” so it couldn’t possibly happen to us.  Meanwhile, my friends were asking me how the appointment was… what was my nursery theme… did we find out the gender yet?  I wanted to scream.  None of that mattered anymore.  I just wanted a healthy baby.

That weekend, my husband deployed.  We really had no other option.  We did not have proof that anything was wrong with our baby and we doubted that someone could replace him just days before a deployment.  It was one of the hardest goodbyes I’ve ever had with him.  I packed and a few days later flew to New York City.  My sisters and mom met me there and we spent the weekend shopping and sightseeing.  They wanted so badly to cheer me up, but I was always worrying in the back of my mind.  It was beautiful cool spring weather and it did help to have that time with them when I couldn’t be with my husband.

IMG_7461 IMG_7480 IMG_7484 IMG_7497 IMG_0778

My grandfather was not well at the time, so I was glad to arrive to Connecticut and visit him finally.  He was 92 years old and the most wonderful, happy, uplifting person in my life.  He has always been so special to me and even walked me down the aisle on my wedding day.  I was so glad to see him, but also shocked because I had not realized how sick he truly was until I got home.  Cancer had taken over his body, and my family hadn’t wanted to tell me how bad his health was, since it had happened when I was dealing with my own bad news.  When I finally saw him, we had the most wonderful visit.  His mind was as sharp as ever and he was so excited to see my big belly and know he would be a great grandfather.  He said he wanted his great grandson to call him “G-G” – short for great grandfather.  So cute.  My husband was even able to FaceTime us and say hello.  I kissed him goodbye and said I would be back soon.  I was looking forward to spending a lot of time with him during my visit.  Less than two days later he passed away peacefully.  I was so sad, but also thanked God for giving me one last opportunity to spend time with him.  My mom said that before I arrived, he would ask her nearly every day, “When is Jessi arriving?”  My other family members had flown to CT to see him too.  He waited for everyone to get there to see him and then passed away right after.  He had a long life filled with love and I am so blessed to have him as my grandfather.  I miss him every day and know that he would have been a tremendous source of comfort to me during this time as he lost his own young son.  It makes me happy to imagine him with Luca now… reading him Dr. Seuss books, of course! 🙂

jessijoe_0297 jessijoe_0302

The day after my grandfather passed away I headed to Boston for my appointment.  My amazing mother came with me.  She was already dealing with the passing of her father, not to mention my sisters were in school, but she insisted on going with me.  We took the train two hours to Boston and I was both nervous and a little bit relieved that finally I could get some answers. I would try to convince myself that everything was fine and this was probably all a mistake.  Dr. Fumi was just being conservative and the Boston doctors would say, “Your baby is fine!”  I prayed and prayed.  I rubbed my belly and told my baby I loved him and that we would be okay.  We checked into a hotel that night and the next morning called our minister and prayed with him before heading to the hospital.

When we arrived, I could not believe how enormous the hospital was.  At first glance, I probably saw 20 different nationalities – people who had traveled from across the world, like me, to come here.  My appointment was at the Advanced Fetal Care Center.  I was scheduled for a 90 minute fetal echocardiogram – basically an ultrasound where they can zoom in on the baby’s heart.  They take (what seemed like) a thousand images from different angles to see every possible view of baby’s heart.  They were so nice and put me at ease chatting with me and asking about the baby.  It also involved some waiting as Luca was not always cooperative.  At one point, he actually put his hand over his heart – not helpful!  My patriotic little baby!  My husband was texting when he could to see if we had any updates.  As they were finishing, I asked them what they thought.  The doctor told me he believed my baby had some variant of HLHS, but that another doctor would meet with us shortly to discuss everything after he looked through the images some more.  I was devastated and began to cry, but tried to keep it together.  I knew from my research that this was survivable and that I had to be strong for my baby and for my husband who was so far away.  I didn’t want him to worry about me more than he already was.  The doctor came in and after multiple attempts we were able to get my husband on the phone from his deployed location.  He began to explain to us what was wrong with our baby’s heart.

IMG_7552 IMG_7553

He drew pictures on a white board of the heart and explained that our baby’s condition was extremely serious, but that we were in the best possible place to treat him.  Our baby had single ventricle heart disease and a HLHS variant.  Really no heart is the same as another, so it’s hard to fit these diagnoses into one name or definition.  It’s difficult to remember all of the details of the conversation now, but I remember him saying that there were something like eight pediatric cardiologists at Boston Children’s and over the course of the rest of my pregnancy, they would continue to look at baby’s heart and determine the best course of action, which included determining which cardiologist was the best match to operate on our baby based on their particular area of expertise.  It simply blew my mind to listen to these doctors explain the ins and out of a tiny baby’s little heart the size of a grape.  It was so far above my head, yet I felt very confident that they would take care of us.  The doctor said that it would not just be him taking care of our son, it would be an entire “village” of people between the two hospitals: Boston Children’s and Brigham and Women’s Hospital next door.  He said we would get to know them all very well and we would all be a team together.  I would have the baby at Brigham and Women’s and then we would be transferred to Boston Children’s shortly after for the surgery and six to eight weeks of recovery.  He was also very real with us about the facts – one third of babies with this heart problem do not survive to see their third birthday.  At least three open heart surgeries were required during the first two years of life, the first one occurring just days after birth.

After some time, my husband had to get off the phone and go to work.  My mom and I continued to ask questions, but the doctor told us it was best to take a break and let all of this sink in.  He didn’t want to overwhelm us with too much information in one day, because it was a lot to handle.  We agreed and scheduled another appointment two weeks later for more testing and for me to meet my doctors at the adjacent hospital.  That afternoon we headed home to CT.


I have to pause as I tell Luca’s story because it is an emotional one to tell and cannot be told in one post.  If you have read this far, thank you.  It is impossible tell his story in few words, because so much happened during his little life, so I will take my time and continue as i can.  As I write, the emotions from those days come back to me.  But, it is very healing and I truly hope that perhaps Luca’s story will reach someone else going through something similar and let them know that they are not alone.

I’ve really felt Luca’s presence over the past two days.  It makes me so happy to feel him with me, but so sad that I cannot actually be with him.  Yesterday, it was while practicing yoga overlooking a beautiful sunset and a calm ocean.  Today, it was while watching a butterfly while I took a walk.

IMG_0109 IMG_0112 IMG_0130

I need to have that quiet time to be with myself every day or as often as possible.  It is then that I am reminded that Luca is with me and God is with me and I will be okay.

I call on the Lord in my distress and He answers me. ~Psalm 120:1