I’m so thankful that God has allowed Michael and me to share our journey, because it has allowed us to share our son with the world. I know that not every parent who loses a baby will have a desire to share like this. My hope is that what I share about our experience can somehow be a voice for those who have experienced the same pain and longed for the world to have a better understanding of what they went through. My hope is that through James’ story other families who are walking through devastating loss will somehow see a glimmer of hope despite living through the worst season of their lives.

Michael and I have both found that talking about James and his story is something that we love to do. I love it when friends ask me to tell them how his birth was or ask about what he was like. I even love explaining about his complications and every detail that wasn’t right. I just love being able to talk about my baby, but what is ironic is that because our situation is so sad, most people don’t ask or even acknowledge what has happened because they don’t want to upset us. No one wants to say anything that will make me cry and so a lot of times, talking about James is avoided. That’s totally understandable. I’m sure that some parents in our shoes would rather not talk about their loss and that’s understandable….. but for Michael and for me, it’s so important to us to share about our baby. So here I go…..

For those who are just finding out about our story, you can read a letter that I wrote to James right after we found out that he had severe complications. You can read that letter HERE. His 20 week ultrasound showed that he had a cystic hygroma, a heart defect, and severe hydrops. We decided to do an amniocentesis and within a few days we knew that I was carrying a baby boy with Down Syndrome. We knew the moment the doctor shared our devastating news that we would carry him as long as the Lord allowed him to live. That was the hardest and also the most rewarding decision that I have ever made in my entire life. I didn’t have a lot of strength or energy to blog about his journey while I was carrying him for the three months that he continued to live. However, I did share what I could on Instagram and you can read those posts HERE. Those were the hardest three months of my life. Loving a baby while each day knowing that it could be our last with him slowly tears you apart. There were days when I would sob on the shower floor and pray that God would take my baby and end his suffering, and then an hour later I would be crying in bed, holding my belly and telling my baby boy how much I loved him. The mental battle to try to simultaneously experience joy and sorrow was sometimes too much to bear.

For 11 weeks, Michael drove us to weekly high-risk ultrasounds that we didn’t even have to go to. We only kept those appointments because, as parents, it seemed like the right thing to do to check on our child every week that he was still living. There was nothing medically necessary about these appointments. Our Doctor graciously let us schedule our ultrasounds at the end of her work day so that we wouldn’t have to sit in a waiting room full of pregnant women, and so she wouldn’t be rushed and could spend as much time with us as we needed. We would see his fluid around his head, his puffy arms and legs that were very short because of his Downs. We would see his heart rate that never strayed far from the 130’s. We would check his diastolic flow from the umbilical cord and it was always strong. We would see the ever-growing amount of fluid in his abdomen. Each week it seemed to get a little worse. It got to the point where we couldn’t even see certain organs anymore. Some of them were compressed because of the fluid, and some were shifted and unable to be seen because of the pressure. Our poor little boy. How he survived almost two months longer than any doctor expected him to blows our minds. He was incredibly strong. Every time that we showed up for another weekly ultrasound, Dr. Troyer would say “You guys have a fighter!” and she was right.

Since we’re talking about our ultrasounds and the many many appointments that we had… let me just say…. doctors who call your baby BY NAME… even when they know your baby is going to die… even when they know that there is nothing that can be done… even when they could view your appointments as a waste of their time… are a GIFT. I cannot explain how much it meant to us that our doctors knew our baby’s name and used it constantly. He wasn’t just a baby with complications to them. They recognized that this baby was our second child and our son whom we loved. Dr. Troyer would say “Well, let’s keep getting to know your little guy” every time we came in for an ultrasound and I loved that. God blessed us with a team that treasured our baby just like we did. I carried James until I was 31 weeks pregnant, and so being surrounded and taken care of by an amazing medical team was a gift from God.

Everyone, including the doctors, were amazed that James continued to survive. We couldn’t explain it, because while his condition continued to worsen, his heart would continue to beat. However, after a while, we started to realize that because James was breech, that meant that his heart had gravity on its’ side. Despite his severe and irreversible heart defects his little heart just kept beating. As the end grew closer, we realized that a baby with a good connection to his momma can have a body that is failing in a million ways but if he’s strong, he can keep going for a long time….and that’s exactly what was happening with James. He was still living inside of me but he was slowly fading. I felt him move one night about a week before I delivered him. He didn’t move much after 24 weeks but he moved around enough that night for Michael to feel him and that meant the world to us. Every week that he lived inside of me seemed like a miracle but it also seemed to become more and more painful. I am so thankful for the time that I had with my baby while being pregnant…. but anticipating the loss of a baby each and every day is unbearably hard… especially when you know that your baby’s body is continually declining.

The week before I was induced, I was showing signs of pre-labor. Without going into a crazy amount of detail, you should know that this time frame was incredibly hard for me. Physically, I wasn’t doing well. I was 80% effaced and dilating. I was at risk for developing Mirror Syndrome because of the severity of James’ complications and mentally, I was a wreck. I knew that the end was coming but I didn’t know how or when or what it was going to be like. It was around week 30 that my body started to change and we started to see some red flags arise. I have never prayed and begged God for answers and wisdom as much as I did that last week of April. I was induced on May 1st and I prayed for peace that surpasses any understanding. Walking into a hospital…. the same hospital where I delivered a healthy baby just 14 months prior… should have been traumatic. Putting on a hospital gown and seeing a bassinet in the room but knowing we wouldn’t have a breathing baby inside of it should have been incredibly hard for me…. but it wasn’t. Only having a contraction monitor on my stomach, but no heartbeat monitor should have been hard to handle, but I was okay with it. Seeing midwives and nurses that had helped deliver Evy should have been traumatic because this time, my story would be ending so differently. I had such a peace…. it doesn’t make any sense…. unless you believe in a loving God. That’s the only answer. This is too emotional and too devastating of a situation to just chalk up the peace that I experienced to me just “pushing through” and “being strong”. When I think back to that morning, the worst part was honestly standing in the waiting area of the hospital with another couple who was also being induced that morning. The mom smiled at me and said “Whew! I’m ready to get this baby out! I bet you are too!” and I had to refrain from thinking about what we were about to experience. That woman had no idea that we were about to deliver a baby without a heartbeat while she would be meeting her 4th baby. Her other children would be coming in to meet their new sibling while my daughter would be meeting and also saying goodbye to her brother. Somehow, I just smiled at her and nodded without falling apart.

They started pitocin around 9am and thankfully I progressed quickly and easily. They broke my water and literally nothing happened. There wasn’t any water to break. Our poor boy’s amniotic fluid levels were so low, but just the act of attempting to break my water intensified contractions and I was at the unbearable, can’t talk, trying not to scream or break Michael’s hand part of labor. It was happening fast and while I’ve always wanted to experience a natural birth, this was NOT the time for that. Maybe one day I will have a pregnancy that will allow me to experience labor that way. :) I got an epidural, and Michael went to grab lunch in the lobby with our families. Fast forward to about 40 minutes later, and I could tell that it was time. Both with Evy’s birth and James’ birth, I have felt pain through the epidural but the relief that it gave allowed my body to relax enough to get me to the place of pushing extremely fast. The nurse came over to talk to me and check my progress, and I knew it was serious when she told another nurse to go get Michael from the lobby right away. They called my OB but grabbed a midwife to be with me in case my OB wasn’t there in time. Michael rushed back into the room and our best friend Jill was with him to take pictures. I saw her and held her hand and cried. I think it was hitting me that I was about to finally meet this sweet boy that we had spent months loving through ultrasounds….. but I also knew that he wouldn’t be alive. It’s hard to explain what it feels like to be in that position. It was all so overwhelming. I pushed for about 15-20 minutes. It wasn’t pleasant delivering a breech baby feet first, but I’ll never forget hearing Michael say “Oh Katelyn… you can see his face” as soon as he was out.

That was my miracle.

I literally have written in my journal “Jesus, just let us see his face. Please just let us see his little face.”

His swelling around his head was incredibly severe. On the ultrasounds, it looked like there would be so much fluid in his face that it would be impossible to see facial features. Because of this, we had had numerous conversations with both of our doctors about how to be prepared to see him because it could be alarming. We were prepared to meet our baby and love him no matter what he looked like. We knew that it was very likely that our baby may not even look like a baby, and every week our ultrasounds pointed towards that being true. I struggled with this so much…. I also struggled that he turned breech around 22 weeks and never flipped back around… leaving me with a way more complicated delivery. I prayed things like “Really God?! With all that we’re going through, you can’t allow him to just flip over?! Why does it have to be EXTRA complicated?!” However, what we didn’t realize is that when James’ turned breech, his face was pressed up against the placenta, and because he didn’t flip or move for weeks and weeks the pressure of his face up against the placenta pushed the fluid away from his face. This is why we were able to see his precious face. I cried over him the moment that he was born and thanked God for giving me that miracle. It was evident that his body was never designed to live outside of me…. but he was so beautiful. He had the cutest face… He had the softest little hands and feet….he had beautiful lips just like his sister…. but most importantly, he had the tiniest amount of red hair!

Labor was 6 hours instead of 26 like it was for Evy and I’m so grateful for that. I remember feeling heartbroken, relieved, joyful, and thankful the moment I held James for the first time. You would think that going through the pain of labor only to deliver a baby that isn’t living would be terrifying, but it wasn’t. It was a Holy moment. I cried… Michael cried… but then we enjoyed getting to have time with our baby. Michael bathed him, I put him in a tiny outfit, we brought Evy in to meet her brother, and then our families came back to meet him. Again, you would think that having your family meet your baby after he’s gone would be incredibly sad, and it was at moments… but more than anything, it was a sweet time that I’ll always remember as being joyful. I actually remember feeling very excited for our families to meet him and see him. I was proud of him, I was proud of myself, I was proud of Michael. We had physically come to the end of the hardest season of our lives and we finally had our amazing baby in our arms. We took pictures, we took videos, and then everyone gathered around my hospital bed and Daddy prayed over us.

Our time with James was incredibly sweet. Someone once said that one day I’ll be able to look back on this season of my life and have fond memories of it. That seemed crazy to me back when I was pregnant and barely hanging on…. but I’m already able to see how it’s true. Having to say goodbye to his earthly body less than a day after getting to “meet” him for the first time was so hard. I just can’t explain how it feels to say goodbye, to know that your baby is never coming back, and that that was the last time that you’ll see him. It was the most emotional part of the entire experience. However, a few hours after we said our goodbyes, we once again felt such a sense of peace. We knew that our son was in heaven and because of the Gospel, we know that we’ll be able to see him again. The sadness will continue and our family will always feel like there is someone missing, but we have seen God’s goodness and His grace in a way that a lot of people NEVER experience in their entire lifetime.

James 1:2-4 says to consider it pure joy when you face trials of many kinds. It’s hard to understand a verse like that in the midst of normal life. Little trials that are annoying and frustrating seem pointless…. but when you experience tragedy, it almost seems easier to realize that God has a purpose in it, because there is no other explanation. There isn’t any other type of hope that can come from losing a child. After experiencing a stillbirth and the journey that we just walked through with James, I can honestly say that we have never known the Lord more intimately than in our most desperate moments the past 5 months. It’s made me realize that there is so much more of my life that God desires to be a part of. There is so much more that He’s asking me to trust Him with. I’ve learned what it means to truly believe in the promises of scripture instead of just having them memorized in my head. I’ve realized that the type of love that I have for James is unlike any type of love that I’ve known before. I’ve learned to trust that God has a plan for me even when it would be easier to believe that He has just forgotten about me. I’ve had to live my life with absolutely no control over my future and that has taught me to trust God in a way that I’ve never experienced before. Michael and I are experiencing our marriage in a way that I think God intended it to be years ago, but pride and shame and tension got in the way. Our families are loving each other in a deeper way because little problems seem pointless after walking through the pain of the last 5 months. We’ve developed a new appreciation for life and healthy babies. We will never take a good doctors appointment for granted ever again. We understand the pain of other parents who have lost babies in a way that those who haven’t walked this road will never truly grasp. Lastly, we have learned that percentage chances of horrible things happening to us mean nothing. My hand tumor during Evy’s pregnancy happens to one in a million pregnant women. The chances of being 30 years old and having a baby with Down Syndrome is a 1 in 3,000 chance. What we have walked through isn’t about chance…. it’s about purpose.

Our lives are not our own. We don’t exist just to live, work, and try to survive what life throws at us. That would be such a SAD life, and there has to be a bigger story for the world. Life has to exist for something more. God is writing a story in everyone’s life but it’s up to each one of us to choose to allow Him to change us. Allowing God to transform us, teach us, and carry us through losing James is ultimately going to be a turning point in our life. We’re going to look back on this season years from now and realize that we became more of who God designed us to be because our son existed. James’ life is a part of the story that God has allowed us to walk through and it was and continues to be purposeful.

We had a small, intimate memorial service for our baby boy at our home a couple of weeks ago. Our family and some close friends gathered on our property and we planted a weeping willow tree in memory of James’ life. We spread some of his ashes, we sang and worshipped, we prayed, we thanked God for our son, and then Michael and I read letters to James. We both promised to share his story for the rest of our lives no matter how hard it was. Today, by publishing this blog post, we’re starting to fulfill that promise and it is our hope that lives will be forever changed because of our baby boy.

Below you’ll see a few pictures of me when I was still pregnant with James. We took some final maternity photos after realizing that our time with James here on this earth was about to end. Then you’ll see some pictures from James’ birthday in the hospital. We have hundreds of pictures with him but we have selected only a few to share with the world. Then you’ll see a few pictures from his memorial service and while it may seem like we were only sad in these images, there was also so much joy in our tears. At the end of this post, I’m sharing my letter to James and then Michael’s. There is no better way to share how we both feel about our little guy than to share those words.

If you’re still reading all of this…. wow. I’m sorry this is a novel, but I appreciate you loving us and being invested in our baby’s story. It means so much to us to be able to share about him and we’re grateful that God has given us this space on the internet to do so. There will be more posts in the future… more stories and more about our experience as we work through this next season. I’m hopeful that we can eventually help share ways that other parents in our situation can survive and even thrive in the midst of their tragedy. Eventually, we’ll have a film of James’ life that shares his whole story and we’re excited to share that one day. Enjoy these images and getting to know our baby. :)