As I sit in my bed, after excusing myself from the mellow Saturday family hang-out downstairs, I am reflecting on “my story”. It’s easier said than done. Not only do I need to make physical time to write, away from distractions, I have to re-engage in the last year + of life-altering events. I have to figure out how to turn that heavy tight knot in the bottom of my stomach into a cohesive story that can both explain the facts and allow the reader to feel things they don’t necessarily want to. No one wants to feel what losing a child is like. This is the story of finding my rainbow.
A quick summary on my background. At 32, I had a mostly uncomplicated pregnancy and birth. I’m married (to my husband Daniel) but we were not trying to have kids at that time. We were still unsure on if and when. The best word I can use to describe that pregnancy was naive. I was naive to how lucky I was to have a smooth pregnancy and a healthy thriving baby at the end. We named our first born Romi who is now 5. I call her my unicorn because she’s the most magically perfect presence in my life. To think that I wasn’t sure I wanted a child is weird, because she is the best thing to ever happen to me!
Since turning 35 years old, I’ve experienced 1 chemical pregnancy at 5 weeks, 1 missed miscarriage at 9 weeks that led to a D&C, 1 infant loss at 30 weeks, when I was 36, then another chemical pregnancy at 37, 7 months after my baby died. My miscarriages were not devastating to me at the time. I can absolutely understand why many women mourn and grieve those losses. It just wasn’t how I felt, but I think I tried to over-control how I felt. They were unplanned pregnancies so I did try not to attach myself. I had the capacity to know how to protect myself by compartmentalizing my emotions and separating them from the reality of a pregnancy ending. I didn’t see them as babies, but as embryos. This is how I dealt with the difficulty. The D&C was harder than the chemicals, but I found peace in both situations. I accepted that it was a timing issue, with a little one still in diapers and planning an out-of-state move. I was thankful to learn first-hand the delicacy of pregnancy, and decided to voice my story publicly on Instagram to reach others who may feel alone. That was all I needed to heal at the time. My focus was not on the baby’s soul, the future, the love or the miracle of conception and life. Sometimes I feel like my lack of emotional investment in those failed pregnancies is why the Universe gave me Solana, my daughter who passed away after birth at 30 weeks gestation. Part of the reason why I wanted to get involved in Project Rainbow is to work on my vulnerability in sharing difficult truths, and that’s exactly what I’m doing by sharing my story in this post. I need to say vulnerable truths in order to process the losses and grow.
In February 2023, at 36 years old, we found out I was pregnant with our double rainbow baby. This time, I had zero doubts or hesitations about the timing of the pregnancy. I was ready to fully commit to growing our family. We were cautiously optimistic, very much aware of the risks of miscarriage. We were focused on seeing that heartbeat on the monitor. As if the only vital sign that matters is a heartbeat! That is not further from the truth! A heartbeat is a small puzzle piece of the baby. It does not determine life viability on its own. The public narrative of pregnancy and birth (especially regarding abortion politics) is heavily focused on heartbeats and heartbeats only. A million other things need to be functioning perfectly in order for a baby to be born. We all take all those tiny miracles for granted.
At the 8 week scan, our baby Solana looked great. The clinic wanted me to have the next ultrasound at 20 weeks, which I was not okay with waiting that long. I requested a 12 week scan, due to my history of miscarriage. This 12 week scan is the one that changed everything. I’m thankful I requested it, because the results helped me process and prepare for the next few months. The scan revealed a “large cystic hygroma” on the back neck area. The midwife gave us a grim diagnosis. She said that our baby had a 10% survival chance and a 90% risk of a severe genetic disease or death. We waited for her to leave the room to feel our emotions. This time around, unlike all my other experiences in the OB-GYN’s office, the emotions were very intense and negative. It’s nothing I could try to control anymore, or automatically feel peace with. My husband and I cried and cried. We googled and researched. We imagined our baby dying for the first time and it felt impossible. I imagined getting an abortion if we continued to get more bad news. Just thinking about terminating a highly desired pregnancy is like torture. I would never want that, but I would do it if I knew the pain and suffering would stop, both for the baby and for myself. I was deeply thankful to live in a state where abortion was an option – so thankful that it brought me to tears, for myself and all women who are faced with crisis pregnancies. Not all crises are medical – they can range vastly from medical to financial to environmental to psychological. Only the woman, her family and her doctor can understand each nuanced situation.
The next doctor I saw was a perinatal high risk specialist. On that scan, they determined that it was NOT a cystic hygroma but an “enlarged nuchal translucency”. The fluid was still abnormally high behind the neck, but it wasn’t a cystic hygroma, according to this particular doctor. We were given a 90% survival rate and 10% risk of negative outcome. This was the best sense of relief at the time. We knew at that point we would not terminate and we would conjure up all of our strength to find hope.
I continued seeing the perinatal specialists for ultrasounds and continued regular prenatal care with the midwives. It was endless appointments with each one stirring anxiety, fear and hope like a cyclone in my heart. It was exhausting because every appointment was a little different in their findings and what they chose to discuss. The next one was better, but they discovered our baby Solana had clubbed feet. We even met with a pediatric orthopedic surgeon separately to discuss what steps are next after birth for a clubbed feet diagnosis. At this time, we were focusing on just the physical disability of clubbed feet. No other anomalies were overly concerning at that time. It wasn’t easy coping with this, but it was going to be okay.
Despite the uneasy pregnancy, we decided that we still needed to live our lives as normally as possible, so we looked forward to a vacation: a long RV road trip up and down Highway 1 off the coast of Northern California. I felt 2nd trimester energy, belly was not too big, and my family was together. We saw more family in CA and celebrated my pregnancy. Everyone knew of the complications, but everyone was optimistic. No one ever imagined our newest family member would not make it. After all, all of our family members; cousins, aunts, grandmas, etc. had brought all of their babies home. Hardly anyone even had a miscarriage. If they did, it was early. Everyone except my mother. She experienced a stillbirth in 1983, at 20 weeks, due to severely high amniotic fluid. (Oddly, I had this condition as well, which I will explain later) This loss was rarely talked about in my family. When she first told us, I do remember feeling like that was the most horrific thing anyone could experience. HOW is that even possible, to give birth to a dead baby, and move on from that. That could not possibly happen to me, I thought. When I think about my parents’ loss now, I imagine how I have a 3rd little brother. I call him Baby 83, because they never named him. I wish they would have named him and had at least one picture, or one blanket. I wish he could have been a small part of my life growing up, so I could learn deeper lessons about pregnancy, family, life and death. He wasn’t included. My parents did not know how to process that loss, so they moved on and focused on birthing and raising living children. Can’t blame them. The stillbirth and loss culture in the 80s at the hospital was cold and isolating back then. Nurses were not trained to give support or memorialize those babies. My parents couldn’t go online and find resources or others to connect with. They were never given testing options or answers. They pushed the loss way down and held it there. I was born a few years after my angel brother. I was my parents’ rainbow baby. Reflecting on that is sweet, and it brings a small sense of comfort to my experiences with miscarriages and loss. The rainbow after the storm has always been intertwined in my DNA.
When we returned from our vacation, everything with our baby girl got worse. They found several more anomalies. Reading through the list now is hard. So many things were wrong at that time, and it was terrifying. These included: overall swelling/ fluid retention, cystic hygroma, renal pyelectasis (fluid in kidneys), clenched fists (a typical sign of a genetic mutation), pleural effusion (fluid in lung cavity), polyhydramnios (excess amniotic fluid), possible chromosomal issues (we had not undergone testing yet). We were given the option for amniocentesis, which I did. Getting a long needle stabbed in the middle of your belly is not fun. We were brought back to fear and uncertainty. There’s something terribly wrong with our baby and we can’t help her. If you sit with that thought you may be able to feel a taste of our fears. This is around the time we named her Solana, which means “sunshine” or “a sunny place” in Spanish. Our daughter picked out the middle name Mika, named after a kid show character. We let her pick the name because we knew it would bring her closer to her sister that may not be here with us one day.
The next few weeks were an up and down of testing results and biophysical profiles via ultrasound. My amniocentesis results were all normal. I’m “low risk” for all the tested genetic disorders. It’s good-bad news, because we still don’t know what’s wrong with my child at this point. We agree to even further genetic testing which will look at the entire genome of both myself and the baby. This had only been done at this particular clinic twice. It was confirmed that Solana did NOT have downs, trisomy 13/18, Turners, nor X Y sex gene issues. More results came back that did find a small deletion in chromosome 5 missing 6 genes, but that was tied to pancreas issues. So that did not explain the anomalies Solana had. The doctors thought this was good news. Months down the road we did find 2 genetic mutations that both Daniel and I have (we each have 1), as well as Solana (she had both). These mutations coupled together could be the reason for her issues, as dysfunction in this specific gene has been linked to “Myopathy” in humans, but the data can not confirm it would cause fetal or infant demise. This is the only recorded case of this genetic mutation and this outcome. When we discovered this information, it was confirmed that this can indeed be passed on again, as a 1 in 4 chance, or 25% chance. But for all we know, Romi has this mutation and she’s fine. We still just don’t know for sure.
So, by the end of July, we still didn’t have an answer to why Solana was clenching her fists, retaining fluid in multiple places, and moving less. On July 27th, the biophysical profile ultrasound score was low, a 4/10, so they decided it would be best to admit me into the hospital for a couple days of monitoring. I was pretty scared, but somehow mustered up the hope and optimism that this was a good thing. My intuition still felt like Solana was okay. As I was monitored the next few days, the results were promising. Her heart rate was good, oxygen was steady and we could constantly hear the “swish” sound on the doppler. They said the swishing meant she was moving a lot. It sounded like a lot of swishing, which didn’t really make sense based off of how still she appeared on recent ultrasounds. I’m not sure if I believe the swishing means movement. It seemed like Solana was improving rather than declining. However, I had very high amniotic fluid (polyhydramnios) which essentially means baby is not properly intaking fluid and breathing. By the time I got a final ultrasound/biophysical profile, Solana scored a 8/8. We saw her arms and legs move a bit, and we saw her swallow/take breaths. The doctors were pleased and released me, despite the excess fluid, which had gone down but not to normal levels.
On July 31st, two days after I was released from hospital, a difficult call was answered from the doctor. I had a fetal MRI done and the results were ready. On the phone, he explained that Solana’s cerebellum appeared hypoplastic, or small. The MRI could see more fluid that the ultrasound could not. She had hydrops, which can be very dangerous, an overlapping finger along with the clenched fists, which is abnormal and a typical sign of a genetic problem. She did not have well-defined genitalia at this point, and normally a 30 week gestation fetus should. The doctor said that due to the underdeveloped cerebellum, she would be a special needs child. When I got off the phone, I fell to pieces. They wanted me to go in the next day, August 1st, to check potentially leaking cervical fluid. It was suspicious that it could be pre-term labor fluid. At this point, I was trying to just focus on that, the cervix check. I didn’t know it would be a full ultrasound with biophysical profile, which it was. I should have had Daniel come, but didn’t because it wasn’t clear that this next appointment was that crucial. I brought a packed hospital bag just in case, but really didn’t expect to need it. The ultrasound tech spent about 30 minutes with me and Solana trying to record a glimmer of improvement. The amniotic fluid rose dramatically. 5-25 cm is normal, and mine was over 50 cm at this point! That meant that Solana wasn’t breathing (intaking/outputting fluid) at least not enough. She wasn’t moving. Her score was a 2/8. They sent me to be monitored for a bit in the other room. I called Daniel to share the bad news and inform him they might need to admit me into the hospital again. He said he would finish up and be there later. I still did not express the urgency because I likely was in some denial. The doctors explained Solana wouldn’t tolerate a live birth so they needed to perform a C-Section. They explained that this would give her a chance at survival. If she stayed inside me, she may die, and they want to always prevent stillbirth if they can. Everyone was saying that this was how she was telling us she needed help. It was time for us to intervene. I broke down sobbing in front of the doctors. I knew how serious an emergency cesarean was. I knew that my baby was not okay. I had my nurse, an earth angel named Leah, call Daniel again to have him rush to the hospital. I didn’t understand how urgently they were trying to remove Solana from my body. I just wanted to believe she was stronger than they thought. I couldn’t imagine she would actually die, especially not if she got to the NICU. My hope was that she would survive this intervention and she would live on, to teach us how to care for a special needs child.
I never had a C-section so the surgery part was overwhelming. I’ve never even had a surgery besides wisdom teeth extraction. Everything moved fast, and the anesthesia was fine, but no one talks about the other medications they give you to combat the blood pressure rising. Those meds make you extremely shaky.
Before we knew it, the birth was complete and they immediately brought her back to the NICU. The entire staff was calm. No crying baby sounds. It’s a weird and awful feeling knowing your baby is now here, but you don’t get to even look at her. You feel empty, numb. Your heart feels like it can’t beat, but at the same time, you must focus on breathing through the trauma of the surgery. Long deep breaths, as best I could. I remember over focusing on my own state, to make sure I would “make it”. Looking back now, it’s scary to think I was at risk just undergoing a major surgery all whilst imagining what was happening to Solana. The doctor gave us the first update, which wasn’t promising but she was still alive. She was hanging on a bit. Leah took a photo and showed us. My first reaction was WOW, MY BEAUTIFUL CREATION, followed by “she doesn’t look healthy, and she’s all wired up with tubes”, it’s so very unnatural. I could not even process all of that. Daniel wept, and I just laid there, shaking, becoming sadder by the second, but fighting to remain calm, for the sake of my physical survival. By the time the doctor gave the second update, he informed us there’s nothing else they can do for her. Nothing was working. How do you respond to that? I don’t think I said a word besides “okay”? Her heart was slowly beating and her lungs were barely breathing. It was only 1 hour of life in our realm. She spent it slowly but gracefully letting this world go, rather than fighting to be saved. Solana’s soul must have known that the future would be too painful for her and us. She knew her body wasn’t right. In order to protect her parents for an unbearable life of unknowns in the NICU and beyond, she simply let go. Her soul knew what was best. Even though this moment was gut wrenching, I was able to keep my composure all the way until I was able to actually hold her. The severe shaking suddenly stopped when they opened the doors to wheel her tiny body into my room. It was like a strange, peaceful energy surrounded her, and my spirit connected to her in that moment. Oddly, I felt happy to finally see her. But the reality was not happy whatsoever. When I did spend a few seconds holding her, admiring her features, I broke. I wept out helplessly and repeatedly, “WHY? WHY? WHY?” The neonatologist tried to actually answer “why” because I wouldn’t stop saying it. I don’t remember what his medically technical answer was, because it didn’t make me feel better. We wept and she slept. It was all too much.
It took me awhile to stop crying and just be in the moment with her. By the time our parents got there, first thing I said to my mother was, “Now I know what you went through.” I know it was hard for our parents to enter that room, knowing that grandbaby Solana was gone. Being a grandparent, you love your grandchildren deeply. I’m not sure how everyone went on to process their own grief and mourn this loss. Obviously the parents (us) have the most agonizing grief, but other family members may be devastated and will need to figure out their own way to mourn and process. People don’t share much about their personal grief journeys, but I wish they would. Grief is just love that doesn’t know where to go. Grief should be normalized so we can all be emotionally healthier humans. We should learn how to lean into not only our own grief, but that of our friends and family. “How are you doing?” is a question we don’t ask enough.
The next thing I remember is saying goodbye to Solana, forever. They allowed us as much time as we wanted with her in the cold cuddle cot in our room. I know some families will dress up or bathe them, etc. We noticed Solana’s skin and overall appearance was deteriorating. Daniel and I were not comfortable keeping her overnight. We both felt a stronger connection to her soul than we did her body. Nothing can prepare you for a nurse entering your room to roll your baby away forever, knowing that is undoubtedly the last time you will see them. At that point, you don’t realize how important those photos will become. Photos, memory boxes, tears…that’s what you leave the hospital with. Not your child. I invite you to imagine that feeling and tap into it when you talk to families that have been through this.
It was important for me to allow family and friends to visit the next day. Especially after I woke up viewing a full size double rainbow outside of my room’s window. It brought comfort, believing that was Solana telling us she was safe and with mother nature now. Our visitors didn’t know what to say, and I remember rambling out my thoughts, still unable to fully grasp my reality. Their energy spent with us was healing despite how uncomfortable we all were. Formulating text messages to friends to communicate what just happened was painstaking. I cannot imagine how Daniel felt as he was the one who made the initial phone call to the family. I know that call will scorch his heart forever. It’s amazing how strong husbands and partners are in these moments. With family and friends coming in and out of our room, I was in better spirits than expected. I was able to crack a few smiles and even giggle a bit. I think it was distracting me away from the depth and trauma of what just happened. I remember telling someone, “I feel guilty for not acting more sad.” Now I know it is because reality had not sunk in yet. I did not have the time to process. Everyone was showing me so much love and support. My 4 year old was smiling and healthy. I was being waited-on hand and foot because I couldn’t move much. And again, in order to recover and protect my physical survival, I think I pushed down mostly all of the complex emotions.
The depth of loss, grief, trauma and pain began to settle as I was wheeled out of the hospital empty handed. Notifying our parents we were discharged was hard. I knew I was not okay when Daniel called a family member to give an update, and this person’s response was “Wow that’s great! You got released pretty early! That’s awesome for you guys.” Of course he meant well, and he was glad we were out, but I was wrecked by this comment. How can he be positive? Why is he happy for us? Does he not understand what just happened?! I responded, “It’s not awesome. We are leaving without Solana” as my voice trembled. It is extremely important for people to acknowledge loss and the difficulty of it, before you try to spin it positive or encourage looking at the bright side. I don’t want to hear how awesome anything is. I want to hear how hard it must be that my baby is not coming home.
On top of the emotional and physical burden of infant loss, there’s deciding and coordinating cremation arrangements, planning a memorial service, picking up my daughter’s ashes, endless episodes of crying, therapy sessions, genetic counseling, talking to my 4 year old about death and her angel sister, filing our taxes and claiming Solana, expressing and donating breast milk, relationship changes, marital changes, spiritual healing, the list goes on. I could write a book about navigating this chapter of my life. Part of my journey to healing is connecting with the spiritual metaphysical senses in myself. Science still hasn’t given us a clear answer as to why this happened, so I’m going to keep seeking answers from the Universe or God, however you call it. This reading is from The Soul Collectiveness Psychics, speaking on the idea of Spirit Babies…
Spirit Babies and Their Soul Contracts
“The grief and guilt associated with this type of loss can be absolutely unbearable. It is so difficult to move past the point of sadness and hurt to understand why something so awful happened. The way the universe works is both beautiful and haunting. Before we are reincarnated, our soul contract will be agreed upon, including the date of conception, date and time of birth (including c-section and induction), when we pass and the family we are born into. We have lessons and of course free will. As heartbreaking as it is, sometimes the souls that come through were never destined to stay. They make the ultimate sacrifice of love – to support their parents in learning important life lessons of unconditional love and strength.”
That passage is what guides me to move forward. Accepting that this was a significant lesson for Daniel and I. We have been given the experience as a way to shape us into new form and be better humans. This has deepened our hearts and souls, deeper than the sea. Compassion, empathy, strength, perspective, desire to connect stronger and help others. Solana gave us this. When i was underwater in grief, i wrote this poem:
The grieving passes through me like energy through water
Creating the waves of the sea
I am deeper now
There’s no swimming back up to surface
I swim through the depths and make it’s weight my home
Fast forward to March 2024, after deciding we could be strong enough to try for another baby, I get a positive pregnancy test. This is the first time I’m sharing this, but a couple days later I started bleeding. It was a chemical pregnancy – a miscarriage at 5 weeks. I was super sick (stomach flu type symptoms) during this 4-5 week window and I strongly believe that is why the pregnancy was lost. Because I was so sick and it happened so fast, I was able to recover and process the loss quickly. It was not easy, but I powered through. I didn’t want to tell anyone because it was just too much. Even after this “blip” as we called it, we both agreed that it wasn’t a fair last shot, and we needed to try again. We needed to see if a pregnancy would actually stick. It was a hard decision, knowing the risks, especially with the 25% chance of a genetic problem, but we felt a strong spiritual pull to try again.
Low and behold the very next month in April, I get another positive. It was 8 months since Solana, and the doctor said I should wait 9 months before becoming pregnant. I thought that it would be close enough to where I could have a vaginal birth, but out of an abundance of caution, they still recommend a C-Section. The risk of uterine rupture at my previous c-section scar is too great. I’m not happy about this, but I’m also thankful they do take uterine rupture so seriously. Everything seems scary now, in pregnancy and childbirth. Small things I was unbothered by with Romi and Solana, now are taken into consideration. I’m doing things differently.
The biggest change I’ve made is working on my mental and emotional health. I’ve never needed to seek help in those areas until now. Not only do I have a therapist, I’ve attended group support sessions, sound baths, hired a doula, attended post-partum rituals, received accupuncture, begun volunteership at a local Grief Center. So many things I’ve never done – proof that I’m growing as a person. Announcing this pregnancy to family and friends was challenging, but we ended up recording and sharing a video of ourselves explaining our feelings and boundaries. This was helpful to us all and everyone has been supportive, overall. I highly recommend doing this if you are in a similar situation.
Being pregnant after loss, especially infant loss, is strange and difficult. Every single day you wake up fearing that something is wrong. Every time you see the doctor, you try to prepare yourself for terrible news. Every time you talk about it, you can’t be excited. I imagine that the “pot of gold” baby at the end of this phase, will be absolutely the most rewarding and beautiful moment of all time and space. Completing our family will be worth every painful hardship. This baby will never replace Solana. This baby will be an addition to our story. They will feel Solana’s spiritual presence just like we do. They will grow up knowing who their sister is, and why she is an angel. This story that we have the privilege to write, will be our legacy and the reason why we’re here.
Thank you for reading, with love –
Laura (currently 30 weeks pregnant with a baby BOY!)
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