Julianne's First Year - Osteogenesis Imperfecta Journey
This has taken me a while to write. I’ve written down my thoughts various times in a small journal I keep by my bed, but I’m going to be honest, there have been a lot of times that writing it down has been scary because I know that the second I do, I have to relive some of that pain. So, I’m not going to judge myself throughout this letter and just let the words be whatever they need to be, because this is our experience and it’s perfect, and beautiful, and scary, and it’s ours.
My pregnancy and Julianne’s birth was all picture perfect. I was the picture of health throughout and honestly, the birth itself, I thought was not bad. As silly as that sounds (because it’s literal childbirth), everything ran smoothly and I remember thinking to myself, “hey, I could totally do this again someday”. I remember the exact moment she was born and Brian and I just looked at each other and started sobbing together. It’s a moment that I will never forget. Truly the best moment of my life. However, that precious time right after she was given to me, wasn’t very long lived. I was wheeled to our room in the Postpartum wing and right as we were settling in, a doctor came in to let us know that something had happened to Julianne during birth and her left arm was broken. He assured us it could be nothing and they just wanted to keep her in the NICU for now to make sure she’s okay. That is another moment I’ll never forget and one I sometimes wish I could.
Those nights, while Julianne was in the NICU, I felt lost. I walked across the hospital every 3 hours to feed and hold her for any amount of time the nurse would allow me to. By that next evening, we were officially on the “every parent’s worst nightmare” train and headed full speed toward the next really hard 2 months. Our NICU doctor let us know that in taking an x-ray of Julianne’s arm, they found a healing rib fracture. Meaning, she had a rib that had broken and healed in utero - a very strong sign of a genetic disorder called Osteogenesis Imperfecta (Brittle Bone Disease).
In the coming months after Julianne’s birth, we had fracture after fracture and it felt like we were free falling. A few days after being home we realized her leg was broken. One week later, she broke her other arm. A week after that, the cast that was on her broken leg then broke her femur. A couple weeks after that, her other leg broke. Then, that was followed by her other femur. By the time she was 2 months old, Julianne was basically living in a full body cast. Again, we were free falling.
The geneticist got her blood test results to confirm the Osteogenesis Imperfecta (OI) and she gave us a breakdown of how it happened. Basically, Julianne’s DNA in her COL1A1 was changed at conception. This collagen protein (COL1A1) produces collagen in the body, which builds bone. To have this change in DNA, meant that her collagen proteins are produced in poor quality which makes her bones weak and brittle, thus the fractures. It was a “spontaneous mutation” that had no relation to Brian or I’s genetics and had no reason for happening, other than it just does sometimes. This term, “spontaneous mutation” was extremely hard for me to grasp at the time because of my faith. I love and trust God, so to hear someone say there was a “typo” in my daughter’s genetics (yes, the doctor said “typo”) made me confused. I believe that He makes no mistakes, so that meant that He did this on purpose, which meant there was some reason for Him creating this specifically in her, which I didn’t understand one single bit. I knew I would understand one day, but at the time, I just couldn’t wrap my mind around it. All I knew was she was no “typo”, she was exactly as she was intended to be and she was perfect.
“For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.”
When Julianne was 4 months old, we were hit with our second big blow. Julianne was rushed to the ER with a neck and skull fracture. As they made me let go of Brian who went with Julianne for an emergency MRI and CT (COVID regulations once again killing us), I cried in the arms of a nurse that I had just met. She prayed over me and I walked out into the parking lot holding a baby blanket, completely turned upside down. That night in the hospital, switching off with Brian to sit with her, the idea of celebrating a one year old birthday party with Julianne felt like it was being ripped from our hands. That was as close to God and as angry with God that I have ever been. Going home that next week wasn’t the end of that nightmare but over the next few months, it became clearer that it was a purpose being fulfilled.
So, we spent this time of Julianne’s life, constantly trying to heal physically, emotionally, and spiritually. All the while, she continued to be our happy baby.
I spoke to the best neurosurgeons across the country who told me that Julianne had scar tissue on her neck fracture that was preventing her from healing, which meant that the only next step would be to do a spinal fusion. But, this procedure on a child as young as Julianne is, and with OI, wouldn’t be successful - we’d have to wait until she was at least 3 years old. Three years in a c-collar. Three years fearing that one wrong move would leave her with brain or spinal cord damage. This prognosis was given to us 8 weeks after her fracture (no healing shown on her follow up scans). Just 4 weeks later, a new scan showed almost COMPLETE healing. Four weeks after that, Julianne left her collar behind and a real life miracle was handed to our family.
Those months were the most difficult thing I’ve ever experienced, but also it was an intense transformation of my soul, my heart, my marriage, and my life.
Coming out the other side of all this, seeing a miracle shake our faith awake, baby girl today is a thriving little human (as she’s always been). She is receiving quarterly infusions that help strengthen her bones. She is working on her gross motor milestones, at her own pace, and kicking butt. She is talking and pointing. She is growing into her goofy and hilarious personality. She is becoming her own little self and it’s a pleasure to be here to see it unfold.
Julianne’s nursery floor has seen so many of my tears. But, a lot of those were cries of thankfulness. Y’all, I cannot express this enough, Julianne is the best and most wonderful gift that God has ever blessed me with. It’s crazy to me that I am any kind of worthy enough to get to be her mom. Mark my words, she is here for a very big and beautiful purpose. She changed everything about who I am, in ways that I never imagined. Her life has not only increased my faith, but it’s recreated it. My faith has been opened up into something that creates joy within me even when there is a storm going on outside of me. It’s a faith that was there to turn my eyes up when they were swollen with sorrow and allowed me to be held by God in my brokenness - which sounds easy until you are asked to let go of something as precious as your own child. Truly, I know, “whom shall I fear”. For He has overcome the world, He has overcome the grave, miracles I have seen, and now that I understand (I use this word loosely, because I know I’ll never truly grasp) the greatness and depth of that, I have been changed.
Julianne is turning one year old. This sweet girl that was knit together in my tummy and brought into the world on a roller coaster ride, is my ANGEL. It’s nothing but joy over here. Even on the days that seem harder than others, at the end of the day we are ALL joy and that’s because of her.
Happy Birthday, princess. We love you.
xo,
Mama
Gratitudes
Thank you to the doctors who were by our side this year, patiently and lovingly encouraging us and who had the passion in their hearts to treat our daughter as their own.
Thank you to our dear OI and OI parent friends who gave us courage and hope when we felt lost. For constantly being a sounding board, a safe place, a resource, and prayers we knew to count on.
Thank you, to my mom, Julianne’s “Lita” who spent night after night pouring her heart and soul into our little girl. For showing me, once again, the type of mom I need to be for her, the one mine is for me.
Thank you to all our friends and family who pray tirelessly, who send OI friendly outfits, who send messages and letters, who call to check in, and who just continue to send love her way. You remind us we are not an island, we are a village.
Thank you, Lord, for all of it.