Rainbow baby story – Lyla Grace
All of my life, all I ever wanted was to become a mom. Even at 3 years old I was the toddler choosing to snuggle babies over playing with their friends whenever one was around for me to hold. I dressed up as a mommy, played house with my baby dolls, & told everyone when I grew up I wanted to be a mom.
At 13 years old I was diagnosed with a brain condition called Chiari malformation & my hopes & dreams were about to be turned upside down. I had my first brain surgery on 1/31/00 without any ability to google doctors or medical conditions at that point. We went in blindly trusting. I was told if I didn’t have brain surgery I would most likely become permanently paralyzed or die. We naively put me under the knife with a cut happy young surgeon, praying this was the answer to my debilitating symptoms that was preventing me from living the normal life of a teenage girl.
Without my knowing, he did a complete hack job on me! He removed far too much bone at the base of my skull, shaved down my top two vertebrates to slivers of what they once were, removed the main neck muscles that hold up your head, completely shredded the protective lining of my brain called the dura (a later surgeon told me it’s supposed to be the consistency of a thick rubber swim cap & that mine is like a soggy Kleenex!), & then he left an avocado sized amount of glue at the base of my brain! Yes, glue! It took me 6 months after that surgery to reteach myself how to walk again, & to train new smaller muscles in my neck to hold my head up, but aren’t meant to do that. It was hell on earth & the pain was crippling.
I never really recovered from that surgery. I spent the next 6+ years mostly couchbound & doing high school from home. I never had a boyfriend, never went to a high school dance, & had been left alone by a majority of my friends since I wasn’t “fun anymore”. How was I supposed to fulfill my lifelong dream of being a wife & mom when I was in dire pain 24/7, couldn’t even sit up most of the time, & wasn’t interacting with anyone my age?
I finally started improving health wise just before I turned 20 after finding some naturopathic doctors to help me. I lived in a neighborhood filled with young families, & all the neighborhood moms & kids had become my best friends & I spent all my time with them. I desired to be a mama so desperately but wasn’t sure how that would happen thinking no one would ever want to be with someone who had been through so much. Those mamas & kids got me through the next few years as I became apart of their families & the desire to have my own babies grew exponentially as I saw them living the lives I had always dreamed of.
Then in 2010 at 23 years old I very quickly went downhill. It started with a tingly foot, I began falling, then I couldn’t move the entire right side of my body, & couldn’t even hold a fork. I was admitted to the hospital where they suspected a stroke which was then dismissed, & all the neurosurgeon at that hospital could tell me was that “it was all in my head & I needed to see a therapist”! He said there was nothing wrong with me.
How was I ever going to even find a husband in this condition let alone have my body be at a state where it could even get pregnant & carry a baby?! Another top neurosurgeon quickly saw me & immediately called me after my MRI telling me there was a massive cyst compressing my brain stem to half the size & I needed to have another brain surgery within the week. How that other surgeon missed something so serious is beyond me. After a decade of suffering from my botched surgery, we found the problem! Or we thought we had.
March 5, 2010 I underwent my 2nd brain surgery, this time surrounded by both family & friends from my church young adult group that I was heavily involved in. The massive cyst on the MRI turned out to be all the glue the first surgeon left behind…apparently glue was everywhere & like nothing my surgeon had ever seen as chief of neurosurgery at UCLA.
The first thing he said to me when I woke up from surgery was “let’s just say I’m glad you’re breathing…I’m glad you’re moving your limbs…hopefully you will walk again.” A very narrow escape from death & now I know why the surgeon I had seen a few weeks prior while in the hospital “missed this very obvious defect”, as Dr. Lazareff was the only man who God had given the skill to be able to get me through that surgery alive.
I spent another 3.5 months reteaching myself to walk yet again, this time with far more motivation & an end goal of going on a life long dream missions trip to Swaziland in Southern Africa. I booked the trip in faith not knowing if I’d be walking or even able to go, & God massively showed up! 2 weeks before we were leaving on a month long mission to the other side of the world I started walking again!!! It was HUGE! That trip changed me & seeded an even deeper desire to be a mama. Spending day in & day out with hundreds of orphans grows that desire to mother, protect, & hold tight those sweet babies that you’ve wanted your whole life.
2 days after I returned from Africa I met my husband who had started going to my church’s young adult group when I was gone. We became friends & I loved his heart for the Lord, but I didn’t see myself dating him. After all I’d just been through I knew casually dating wasn’t for me anymore & I was convicted by the Holy Spirit to only officially date someone I could see myself marrying. Our friendship grew over the next 6.5 months & God started opening up my eyes to this amazing man before me.
I always wished he’d known me through my surgeries so he could have walked through those dark days with me & seen how much I’d overcome, but even still he knew my medical past & it didn’t matter to him. He wanted me however broken my body was, or could become. Although neither of us were prepared for what was to come. We started dating March 2011 & immediately fell in love! Things were finally looking up with my lifelong prayers of becoming a wife & mom finally at arms reach. We married October 18, 2013 & even though we couldn’t wait to have kids, we decided to wait at least a year so we could focus on our marriage & growing our bond as one.
7 months into our bliss filled marriage we were completely sidelined when my body pretty much shut down. I went from nannying two baby girls 45 hours a week, to barely being able to put one foot in front of the other. It was as if all the muscles in my body had shut down & were gone. In addition to not being able to walk, I was in debilitating pain 24/7 & had to lie down constantly. After about a month of testing I was finally admitted to the hospital with pain the ER doctors were unable to control & my legs complete jello.
It was in the hospital that I was finally able to see a new neurosurgeon who had been highly recommended to me, & who is the next man God used to save my life. He discovered that the cyst that my second surgeon had cleaned out had refilled with fluid, become stagnant, & was compressing my spinal cord. The damage to my body was likely already permanent. It was beyond devastating news as our desire to have babies was slipping away from us. But I knew I needed that surgery to prevent me from becoming a vegetable & to hopefully regain some of what I’d lost.
July 14, 2014 I underwent my 3rd brain surgery where the cyst was cleaned out & several holes were patched in my dura. The pain was so beyond debilitating I was almost put in a medically induced coma as the strongest of strong pain meds weren’t touching it. I spent the next few weeks moaning & screaming 24/7 & still unable to walk at all. 2.5 weeks later I started massively leaking spinal fluid out of my incision, so I had to go back in for a 4th surgery August 5, 2014 to repair yet another hole in my dura. All as the result of my first surgeon shredding my dura so badly & being the cause of all these subsequent surgeries. 6 weeks recovering in the hospital also with chemical meningitis, with my husband sleeping by my side as he worked night shift as a CNA while finishing his bachelors in nursing while I napped. God knew I needed a nurse for a husband! He is a complete angel & more than I could have ever prayed for.
I finally got to come home after 6 weeks in the hospital but nothing improved pain wise or with my body functioning. I couldn’t even move my right leg & minimally my left. I could barely get from the hospital bed in my parents living room, to the bathroom 10 feet away with my walker. A 28 year old with a walker is not something you see everyday & nothing I ever imagined my life would be as that 3 year old little girl who just wanted to be a mama. Things went downhill quickly & I was rushed back to the hospital by ambulance where they discovered I had now developed hydrocephalus (too much spinal fluid on the brain), since my dura was now patched & not leaking anymore.
I knew I would be having a VP shunt implanted into my brain & that they had to insert the tube all the way from my brain down to my stomach. I was worried how it would affect me getting pregnant in the future, but I didn’t have a choice. As jacked up as my body was, my desire to be a mom never once left me…I’d find a way to be that mama. My surgeon knew my desires, & even though I was totally wheelchair bound & in chronic debilitating pain, he had compassion on me & my dreams. He made the shunt tubing longer than usual so that if I were able to have babies down the line, it would have room to stretch with pregnancy. When he told me what he’d done for me I immediately was brought to tears…all hope wasn’t lost yet. November 4, 2014 I had my 5th brain surgery where they implanted a VP shunt in my brain to drain off & regulate my cerebral spinal fluid. 3 major brain surgeries within 3.5 months of each other. What a first year of marriage that was!!
I was partially paralyzed for the next 2 years (plus the 6 months before that) as I worked countless hours each day at physical therapy, therapeutic horseback riding, acupuncture, chiropractic, & any other treatments I could get my hands on. As bad of shape as my body was in, I trusted that there would be something that God would use to bring about some healing & restoration of my body. After nearly 2.5 years of being unable to walk on my own, all my hard work had paid off & in December 2016 I was finally walking again completely unassisted! Once we got my shunt level regulated my pain drastically decreased & things were FINALLY looking up!
We celebrated our 3 year anniversary in Kauai with a much needed getaway after the last 2.5 years of pure hell & decided it was time to start our family. All I ever heard growing up was how easy it was to get pregnant, so I naively thought that when we wanted to get pregnant that we immediately would. With all my body had been through my doctors didn’t think I’d ever be able to get pregnant, but we tried in faith anyways. 8 months later we got pregnant with our miracle girl! We were over the moon & it felt like we were finally on the other side of a very dark season.
Camille Joy was born February 11, 2018 & she immediately captured our hearts. That baby was the fruition of an entire lifetime worth of prayers, hopes, & dreams even in the most impossible of circumstances…God made a way. We decided when she was 18 months we were ready to try for #2. I was thinking it might take another 8 months, while also praying it would happen immediately. A few weeks into trying, we flew to Oahu for a family wedding & the pressure from the flight caused the pressure in my cyst to expand which compressed more spinal nerves & left me in terrible shape once again. It took about 4 months of getting my shunt setting adjusted several times, lots of ER trips for uncontrollable pain, & being unable to even stand most of the time from such severe dizziness & migraines exacerbated by being upright. Once again we weren’t sure if we’d be able to have another baby.
When my body started turning back around we actively began trying again just before the pandemic hit. All of 2020 we tried, and tried, and tried, and kept coming up short handed. We finally went to a fertility doctor in February 2021 where I was diagnosed with an isthmocele. An isthmocele is a very rare post c-section complication in which the uterine scar starts separating. Apparently this is one of the biggest causes of secondary infertility in post c-section mamas, & some women never get pregnant again after having one.
Once again, we didn’t know if our dreams of growing our family were shattered. The month between seeing the fertility specialist & waiting for a saline sonogram to check the severity of the isthmocele, I miraculously became pregnant! 19 months of continual trying & we finally had our second miracle! We were over the moon & our little family of 3 was filled with pure joy at the thought of this long awaited baby finally getting to join our family. Our 3 year old was in tears when we told her & immediately lifted up my shirt to kiss her future sibling.
That pure joy & bliss quickly started turning south. A few weeks in I developed severe pelvic pain that felt like I was being stabbed constantly. I also noticed my pregnancy symptoms disappearing. I started getting my hcg levels checked again after the first 4 looking great, & they were rising a lot slower than they’d like. Due to the isthmocele, there is a risk of the baby implanting in the scar which is considered an ectopic pregnancy, & can cause early uterine rupture & death to the mom & baby. Since my pelvic pain was so bad my OB had me come in to make sure the baby was implanted at the right spot. To our relief it was & so I was sent home & told to come back in a week & call them if there were any further symptoms.
Less than a week later I started very lightly spotting & the pain was so severe I could barely stand. My OB was still worried about an ectopic especially now with the spotting, so I was immediately sent to the ER. My husband was at work as a nurse & we were in the midst of the super strict hospital policies & so I had to go in alone. My hcg was checked as well as an ultrasound performed. That whole time even in the midst of so much pain & uncertainty, I had such pure faith that this baby would make it. I felt so deep in my soul that why would God get me pregnant after 19 months just to take this baby away. I didn’t even think it was an option.
When my hcg results came back, they had dropped nearly in half & the ultrasound showed no heartbeat. A nurse had compassion on me & let my husband back after he’d gotten off work & was waiting for me in the parking lot. We waited for the ER doctor to come in to officially give us the news as the ultrasound tech wasn’t supposed to say anything. We waited, we prayed, we cried, we listened to worship & begged God to let this baby live. When he came in he told us that it looked as if I was beginning to miscarry. I was in complete & utter shock. I was so sure everything would be ok. How was this happening after all we’d been through to get here? We waited for hours for an OB to come examine me & eventually left for home without seeing her. When she had first seen me she said she had seen miraculous things happen even with dropping hcg so to not lose hope just yet. At that point it seemed impossible, but we tried to muster up the tiniest sliver of hope we could until we knew our baby was officially gone.
The next few days the spotting intensified & 3 days later on Saturday April 17, 2021, I was woken up at midnight out of a deep sleep in debilitating labor pains…I immediately knew what was happening, while also begging God to not let it be so. I could barely breathe I was in such excruciating pain, writhing & screaming for the next 6 hours, grateful it was the middle of the night so our daughter Camille didn’t have to see her mama like that. My husband rubbed my back, heat pad on my stomach, & countless trips to the bathroom as I lost more & more blood. Some dear friends took Camille first thing in the morning so my husband Davin could focus on me, they too had gone through a loss after their 1st child. 6 hours later I officially lost our baby who I named Lyla Grace. She was now with her Creator.
I still remember how it felt when my body passed hers, how much larger the gestational sac was than I’d expected, the complete utter trauma of seeing your dream in the bottom of a toilet. Such a cruel way to exit this world when she was so desperately wanted alive & in her family’s arms. I didn’t know it was possible to weep with such intensity that breathing becomes stagnant. Sounds & groans I’ve never uttered before. The devastation too deep to describe. To be paralyzed by the complete shock & horror of what you’d just endured. To not be able to flush that toilet knowing you’d never get to share your life with your baby, & everything you had dreamt up of your lives together that was now completely shattered. It was complete & utter torture. Nothing I would ever wish on my worst enemy. I have experienced immense trials & grief in my life but NOTHING compares to this. Losing a baby is the hardest, most trying thing I have ever had to go through, & I can only pray that God can use our loss to comfort others who will tragically lose their babies too. The only thing that has brought me the slightest bit of comfort is knowing that the first face she saw was Jesus, & what a glorious site that must have been.
After our loss, my OB told us to wait 2 cycles before trying again. On that next cycle I miraculously became pregnant once again! I was shocked, filled with joy yet absolutely terrified at the same time of losing this precious life. Hope, anxiety, & uncertainty all mixed together. Pregnancy after loss is ROUGH. It is not the happy go lucky, free spirited pregnancy that I had the first time. You know that with life also can come death. You’ve experienced it. You’ve lived the nightmare. & you’ve somehow survived. But here we were once again with a miracle inside of me. After a huge scare at my first ultrasound where we didn’t even see a yolk sac, let alone a baby or heartbeat, God moved mountains a just one week later there our baby was! He is truly a complete miracle!!! Exactly in the right spot in my uterus away from the isthmocele, strong heartbeat, & measuring great! We found out at 8 weeks that we were having a boy! A son! Our next miracle!
Even though things were looking great this time, I had such a hard time the first 18 weeks this pregnancy believing I was actually pregnant again. I’d have ultrasounds & hear his heartbeat & see the little baby moving inside of me, but it felt like a dream…like it was too good to be true. I explained it to my husband as though I were watching another mom have her ultrasound & being a witness to the life growing inside of her, but it wasn’t actually my body. There was a major disconnect. Thankfully the more I started feeling him move, & can now see his movements as I watch my belly, I know there is another life inside of me that I couldn’t be more grateful for. Still fearful of losing this precious baby, while at the same time soaking up each & every day that I am blessed with this life inside of me.
Joy, fear, excitement, anxiety all rolled into one. Hope for the future, while at the same time cautiously protecting my heart in case it’s all taken away again. I pray that isn’t our story once again…I pray this sweet boy gets to join our family on earth, in our arms, in our home, getting to live each & every day on this earth together for as long as the Lord sees fit. I know tomorrow isn’t promised, but today I am both remembering the little girl who is being held by Jesus & that forever changed my heart…while praising God for the little boy we still have with us. We will be meeting our son on March 19 at the latest, & I can’t wait to finally have another baby in my arms.
Pregnancy after loss is so complex. I’m learning each & every day what it looks like to walk through ALL the feelings & emotions, & I will continue to have grace with myself as I walk this journey…one…step…at…a…time
Photos taken by Kelsey Swann Photography.
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