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Katelyn James

Two Babies, Two Very Different Births: a Mom’s Story of Love and Loss

“Both of my pregnancies were difficult for different reasons—but throughout this motherhood journey, both of my children have changed me in the most beautiful way.”

I was always the girl who didn't see herself as a mom. I never babysat as a teenager, I never wanted to hold other people's babies and just didn't seem to have that natural "mom" instinct that other women had. I was good at being a wedding photographer, educating photographers online and running my business—but I seemed to be missing that deep desire to be a mom that other women had. So naturally, I worried entering into motherhood would be a hard and scary journey for me. While my motherhood story isn’t typical and is far from normal, I’m now a proud mama to a 20-month-old baby girl and a precious baby boy in heaven.

My motherhood journey so far has been more joyful, challenging, rewarding and devastating than I ever imagined. Both of my pregnancies were difficult for different reasons, and both of my babies had struggles of different kinds—but throughout this motherhood journey, both of my children have changed me in the most beautiful way.

Evy’s Story

My first taste of motherhood started with my pregnancy with our baby girl, Everly. It was going so well. I felt great, I didn’t gain a lot of weight, I had minimal nausea and much to my surprise, I actually enjoyed being pregnant! Everything was smooth sailing until I hit the middle of my third trimester.

One morning, I woke up with excruciating pain in the knuckle of my right hand. After spending two days doubled over in pain with no relief, I had an ultrasound, an X-ray and an MRI that showed I had an aggressive tumor growing in my knuckle, caused by the growth hormones of pregnancy. Evidently this can happen to one in a million pregnant women!

An orthopedic hand oncologist scheduled me for emergency surgery to remove the tumor and attempt to save my index finger. Being a photographer, this finger is what I use to take all of my pictures, so the conversations about possible amputation were terrifying. It was also terrifying to think about staying awake during a three-hour surgery while being nine months pregnant with my first baby. But after lots of prayer and a successful surgery, I was tumor-free and ready to welcome our baby girl into the world a few short weeks later.

Some may hear this part of my story and think about how unfortunate it was that I had to experience all of this. However, I believe that what we walk through in life is purposeful and that God uses our pain for our ultimate good. Up until this experience, much of my identity had been rooted in my business and my ability to be productive. I needed that part of my life in order to feel satisfied and happy. When this tumor appeared in my hand, I was suddenly unable to type, photograph or edit for weeks. Everything work-related went on hold, and I learned throughout this whole adventure that my worth isn’t in my work. That was something that I desperately needed to learn before having my first child. My life was about to change and my priorities needed to shift in a big way—and they did! I learned throughout this experience that there can be good that comes from pain, and that lesson would prove to serve me well throughout the next year and a half.

Not only did I have a rare tumor during my pregnancy with Evy, I also had gestational diabetes. It was mild and diet-controlled but it caused my OB to completely eliminate my option to give birth vaginally. She told me if we opted for a vaginal delivery, we’d have to be okay with our daughter having nerve damage because of her size and that my pelvis wasn't made to give birth to a baby this big. This was about the time we realized we should have done more research on our OB and would not be using her in the future. I respected my doctor's opinion, but I wanted another one.

Thankfully, I met a midwife during a hospital tour that believed in me and my ability to give birth to a large baby. She felt my stomach for a few minutes and then looked me in the eyes and said, “You know you could definitely give birth to this baby, right?” I left the hospital tour encouraged and empowered. On February 18, 2017, after 26 hours of labor and 30 minutes of pushing, we welcomed our beautiful Everly James into the world, who weighed a whopping 9 lbs 10 oz. Turns out, not only can I give birth to a large baby, but I can deliver a large baby who came out with her fist by her face, making her head the size of a 11 to 12 pound baby!

I have never been so thankful that I became my own advocate instead of living in the fear instilled by my OB. I know that every story is different, but after all that I had been through, it felt absolutely amazing for something to go how I hoped it would. The moment they laid Evy on my chest, I knew life would never be the same. It was truly the most incredible feeling in the world. We have photos and videos of this moment that I will cherish for the rest of my life. I have never felt so accomplished and strong.

Fast forward to the summer of 2017. Evy is 5 months old and is diagnosed with hip dysplasia. The first doctor we met with said Evy needed surgery and a spica cast, which is basically a body cast for infants. Once again, that didn’t settle well with me, so we got a second opinion from a doctor who specialized in hip dysplasia in infants. He gave us a different option for treatment and Evy was fitted for a Pavlik harness. This harness was our only hope to avoid surgery and it couldn't be removed. That meant no more baths or cute baby clothes, very difficult diaper changes and frantically scrubbing spit-up off the fabric to avoid awful, lingering smells. We just needed our baby's hip to start healing and forming correctly in the socket.

Thankfully, after several months, the Pavlik harness and the Rhino brace worked, and Evy's hips started forming correctly just months before she took her first steps. As a new mom, this season was hard for me. It was difficult to see my baby be so uncomfortable, but I learned very quickly that babies are resilient and strong. Evy was such a trooper and despite all of the extra work and worry that we experienced as parents during her first year, we look back and have fond memories of this time. Michael and I had to be a team and rely on each other more than we ever had before. We had to learn to roll with the punches—a lesson that every parent has to learn at some point on this wild journey.

Right when we felt like we were really getting a handle on being parents to a child with hip dysplasia, we were surprised to find out that we were pregnant again! We never planned on having a 9-month old and being pregnant at the same time. I was still nursing, so this was quite a shock to my body—but nothing was as shocking as what we were about to live through.

James’s Story

Our 20-week ultrasound was one of nightmares. We found out that day that our life would never be the same. A high risk doctor sat down next to me with her hand on my knee and told us that our baby was very sick and would likely not survive. A few days later, after an amniocentesis, we found out that our son’s hydrops, hygroma and heart defect were all caused by Down Syndrome. The doctor gave him four to five weeks to live inside of me. We spent several days in shock. No one can prepare you for news like this. We didn't know what to feel, what to say or what to think. The only thing that we knew for sure was that God didn't make a mistake when he formed this baby inside of me. This wasn't an unfortunate pregnancy. This was our second child and we loved this precious baby. We may not have known what to say or what to feel, but what we did know was that I needed to carry this baby for as long as God allowed him to live.

This was the hardest season of my life. After our 20-week ultrasound, our sweet baby fought hard for more than 11 weeks. The doctor kept saying, “He’s well-connected to his mama, and that’s all he needs right now.” While those 11 weeks were excruciatingly painful, I look back on them with joy and fond memories. We made a conscious decision to allow ourselves to love this baby and press into the pain instead of trying to avoid it. We decided to love our sweet baby as deeply and intentionally as we possibly could before we lost him. We named our baby "James" after his grandpa and my maiden name. It also seemed appropriate that the verse James 1:2-3 says "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance." We were in the midst of the greatest trial of our lives.

Carrying a baby who is moving and growing inside of me but also dying was just devastating. On May 1, 2018, I delivered James at 31 weeks. I knew that this day would be incredibly hard. How was I supposed to go through the pain of labor without the promise of a baby at the end? My husband and I prayed for his birthday to be joyful despite the pain, and by the grace of God, it was. God had carried me through the greatest physical and emotional suffering of my life, and while my heart aches for my baby boy, I know that he was never meant to live life outside of me. All he ever knew was love, and I don’t regret one minute of the journey that I had with him. I was chosen to carry him for reasons I may never know here on this earth and I consider this one of the greatest privileges of my life.

I learned so many things during this journey as James’s mama. I learned that deeply loving a baby that you’re losing is the hardest thing. We named him, we loved him, I sang to him, we bought a Doppler and listened to his heartbeat and we talked about him. When he was born, I held my precious baby for several hours. We took pictures of him, our family met him, we took molds of his tiny hands and feet and saved a tiny piece of his red hair. Those were my only hours to ever hold my baby boy and I will always cherish those memories. I have learned that carrying a baby, no matter what their story will be, is one of the greatest privileges in this life. I have also learned that joy and grief can exist simultaneously. I will forever be a mama to a sweet boy with Down Syndrome and I will never stop sharing his story.

My story of motherhood is different than most, but I know God has given me my story for a reason. Every single victory and hurdle that I’ve experienced has been purposeful. If I could say anything to a new mom experiencing challenges and heartbreak in their motherhood journey, I would say this: You were chosen, hand-picked and perfectly designed to be the mother to your children, whether you’re caring for your babies here on this earth or sharing the stories of your babies in heaven.

A friend who experienced a similar story 10 years ago told me, “You will smile again, Katelyn. I promise.” And she was right. In the midst of great pain, it’s easy to lose hope and feel like life will never be good again. It’s true that life will never be the same, but life can be good again. I’m living testimony of that truth.

To those who have experienced loss, I am so sorry and I understand your pain in a very real way. For those who have experienced healthy pregnancies without complications, you have witnessed a miracle and I hope you cherish your babies even more than you did before you read this story. To those who are walking through a difficult season of any kind right now, my encouragement to you is that this is just that—a season. You will smile again and you will find joy again. Love your babies and celebrate their lives, no matter how short. You will never regret that.

Katelyn is a wife, mother, wedding photographer, educator and amateur (but enthusiastic) decorator. You can find her on her website or follow her on Instagram.

Published October 2018