Luna’s Story

Hi! My name is Francesca. My daughter Luna Celeste was born on January 28, 2019, she was my third live birth. I have a 13 year old daughter and a 5 year old son. While pregnant with Luna I had the worst morning sickness, the worst out of all my pregnancies I would joke and say “Wow.. she has to come out with some sort of superpower, the way she’s kicking my ass she has to be something special.” And, she was just that.

My pregnancy was normal. I was 39 turning 40 and of course because of my age I had to be observed. But, I was OK with that. I had to schedule extra sonograms because my umbilical cord was slightly off centered on my placenta and the doctors wanted to make sure that Luna was growing properly and getting enough nutrients. But, it wasn’t anything to be concerned with.

My sonograms were always normal. Her heart rate was normal, she was gaining weight and all her organs where forming correctly. Nothing seemed to be a concern. The rest of my pregnancy went smoothly and we were all awaiting her arrival.

On delivery day everything seemed fine. They prepared me for surgery and everything was going well. I was a little nervous getting the spinal and was having a little bit of anxiety. But, I knew it was just nerves.  As soon as the umbilical cord was cut, I felt like an outer body experience. The room went silent. I remember telling my husband “go by the baby, go see what’s going” But, he just sat there frozen, almost as if he knew something wasn’t right.  He finally, got up to check on Luna . At this point I couldn’t see anything. I hadn’t heard Luna cry yet but then finally she let out 3 little cries and I felt a sense of relief. That would be the one and only time I would hear her cry. I thought OK she’s good and soon I will be able to hold and admire her. When the nurses were finished weighing her and getting her vitals the pediatrician approached me. I was still laying on the operating table and she said, “your baby has to go to the NICU and she’ll probably be there till you’re discharged.”

I was taken to the recovery room without my baby. My first meeting with Luna was emotional. I saw her in an incubator and immediately broke down. I couldn’t hold her, kiss her or bond with her as I wanted. I felt so helpless. The neonatal doctor suspected that her lungs were having a hard time transitioning and told us not to worry.  He said they would be giving her medicine through an IV and that it should help open her lungs up.

We left her in the NICU and I was brought to my room (not by choice). I remember time passing really slow. I was getting concerned. The doctor hadn’t given us an update yet on how Luna was progressing. I sent my husband back to the NICU to check on her. He came back and told me that the doctor would be coming up to let us know Luna’s status.

When the doctor walked in, I knew right away something wasn’t right, he had a certain energy about him. He told us that Luna had an issue with her heart and that she was in critical but stable condition and she would have to be transferred to a different hospital where a team of neonatal  cardiologists would be treating her. I was in so much shock that the words “critical” just flew over my head. I didn’t really comprehend the severity of her condition.

They transferred her to New York Presbyterian- Morgan Stanley Children’s Hospital. My mother and husband met her there and I stayed with my mother in law at the hospital recovering. When Luna arrived at New York Presbyterian they told my husband that she had an issue with her coronary arteries and that they would have to do more test in the morning. By this point she had been intubated and on a breathing machine. I didn’t sleep that night, all I did was PRAY! I prayed so hard! I remember asking God to protect my little girl and to keep her strong, to give me strength so I could be with her. It was torture having to be away from her not knowing what was wrong.  I had so much hope that things would be fine.

The next day my doctor told me I was being discharged because the doctors at New York Presbyterian needed me there with my husband making decisions for Luna. I just had a c-section 24 hours earlier and by the grace of God, I was strong enough to get up and walk around. I honestly didn’t even think about the pain. That morning I received a call from my husband telling me they were going to need to do a catheterization of Luna’s heart to get better images of it. That’s when I started to panic and felt something was terribly wrong. When I arrived at the hospital she was still not back from the procedure. I met with the nurses who were amazing by the way. They told me once Luna was back I would have to leave the room until they got her situated and then I would be able to see her.

Luna returned from the procedure and there was a team of doctors there to discuss her results. We were seated in a room, me, my husband, my mother and my mother and father in law. They told us that Luna had a very rare and severe congenital heart defect, at the time they didn’t tell us the name of her condition. It’s called Coronary Ostial Atresia it’s so rare that if you google it there’s hardly any information about it. The cardiologist explained that her left coronary artery was non existent and her right coronary artery formed on the heart itself so there was no oxygenated blood pumping to the heart. The only option of survival would be a heart transplant. When I heard “heart transplant” the floor from underneath me felt like it dropped and I was in a dream. They went over our options and we discussed putting her on ECMO. ECMO is a machine that pumps and oxygenates blood outside the body allowing the heart and lungs to rest. This procedure is very invasive. I didn’t want to put her through this, but my hubby wanted to buy time so I agreed that if it were to come down to that, that’s what we would do.

We were able to hold her when the night shift team came in. This would be my second time ever holding her.  It was a whole process moving her since she was hooked up to a bunch of machines. It took 4 nurses to finally place her in my arms. I felt complete, we talked to her and showered her with an abundance amount of love. We were so grateful for that moment. I held her for about an hour and a half and then handed her back to the nurse. My husband and I never left her. We planned on sleeping right next to her never leaving her side. It was around 11pm and we were talking to the one of the doctor regarding the ECMO procedure when all of a sudden I see the nurse panicking.  I immediately asked what was wrong. She told me Luna’s blood pressure was dropping. I felt like I was in a movie. I was watching her numbers on the machines start to get lower and lower. She went into cardiac arrest and I lost it. My mom had to escort me out of the room while the doctors and nurses worked on Luna.

40 minutes later the doctor confirmed that Luna wasn’t breathing on her own and that her heart wasn’t beating. She had also lost a lot of oxygen to her brain so ECMO was no longer an option. We had to say goodbye.

We were able to hold her and that was the first time I was able to hold her on my chest without any wires in the way. That was everything! I placed her on my chest and felt the warmth of her body on mine. I didn’t want to let her go. How was this happening, why was this happening. It was all so surreal. We had our private time with her. We made molds of her hands and feet and a memory box.

Leaving the hospital without my daughter felt like I was abandoning her. I will never forget that feeling of emptiness. It felt as if I was suffocating. I had lost a part of my soul.

It’s been a little over a month and my heartache runs so deeply. All the expectations we had were gone. All we have is the beautiful memory of the 2 days we had with her and I am grateful for that.

Her condition couldn’t have been detected in utero it was so unexpected and so rare. Before Luna’s birth I didn’t  know what a congenital heart defect was. I needed to understand what this was and so I started to research on my own and was blown away to find out that CHD is the #1 birth defect in the United States. In honor of Luna

my husband and I created 4 Luna’s Heart Inc. A nonprofit to help raise awareness for congenital heart disease and to provide support, comfort and healing to families suffering from infant loss.

Although I am very much heartbroken I am trying to live my story graciously. I had my plan but god had his. I will continue to have faith in god, my spirituality and belief that there are no accidents or coincidences in this universe, everything is in divine order. Luna blessed us with 2 beautiful days she came and fulfilled her purpose. She touched so many of us. And she will be forever loved. She’s our Angel now. Until the day we meet again I will forever hold her in my heart.

In the last couple of months I have grown as a human in ways that I thought were never possible. When life puts you in an unimaginable situation where you think you won’t survive, but surviving is your only option. You learn a lot about who you really are and what you’re capable of. Going through this grief process has been heavy. It’s been a roller coaster of emotions. From being angry to feeling completely defeated, to confused and trying to find understanding, to being positive and finding strength and turning pain into power. Grief looks different for everyone and you can only take it day by day. Even sometimes moment to moment. It’s about feeling what you feel, releasing it and then bringing yourself back so you could be present for yourself and your loved ones.

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