Our story began on November 8, 2013. I still cannot even begin to tell you why I decided to
take a pregnancy test at 4:00 that afternoon, but something in my head told me it was time.
This time was different, instead of watching the 3 minutes slowly tick by for those little lines to
appear, I felt such peace. I kept myself busy, and didn't even look at the clock until after 5
minutes had gone by. But there on that pregnancy test was a very clear positive! I couldn't
believe my eyes. I could not wait until my husband Josh got home from work to show him. We were beyond excited! Yet even after I showed him, I still had a hard time believing it was true, until 4 weeks later, when we went to our first doctor appointment.
During our first appointment we watched with pure joy and amazement as the blurry black and white picture came into view. There was our little baby! Our little miracle! He or she was so tiny, only 8 weeks old, and looked like a little teddy graham. But in that moment we fell completely head over heels in love with our baby, who was growing bigger and stronger every day.
After our ultrasound we began to feel so confident about our future as a family of three. We could not wait to meet our little baby, and began to plan for the future. I started looking online at everything we would need for our baby once he or she was born. Josh and I would spend our evenings reading aloud names from our baby name book, and we even started talking about everything we would do with our little baby once he or she was born. We talked about creating the perfect nursery in our spare room, and eagerly shared our happy news with anyone who would listen. It felt like we were living in a dream. The future looked so bright!
My pregnancy was so normal. I had morning sickness when the books told me I would. I had headaches when the books told me I would. And I slept all the time, just like the books told me I would. But despite being uncomfortable at times, I LOVED being pregnant. Each doctor appointment was so amazing, because it gave me the opportunity to hear that beautiful heartbeat. I enjoyed every moment of being pregnant, and I was so eager to meet my baby in the near future.
During week 17, in February, my doctor scheduled us for another ultrasound. Josh and I were so excited. We had not seen our baby since week 8, and we could not wait to see how he or she had grown. But during that ultrasound we quickly realized something was not right. Once the picture on the screen became clear, the ultrasound tech did not say a word to us. She quickly zoomed in and out on different parts of our baby's body. After awhile of silence, I finally asked her if everything looked okay. The words that she responded with will haunt me for the rest of my life. She told us solemnly that she had some concerns, and wanted to talk with our doctor. After that we were sent back to the waiting room, nervously clutching one very blurry picture of our baby's head. This was not what we expected. Those minutes we waited were terrifying and awful. As I watched all of the happily glowing pregnant moms innocently sitting beside me, I felt like my world was ending.
Once we got into the exam room, my doctor told us that the amniotic fluid surrounding the baby was very low. There were many possible reasons for this, but it could be something as simple as the fluid had not filtered through the baby in awhile, or the kidneys may not have been functioning properly. She sent us off with a smile, telling us not to worry or lose any sleep. So we felt better. Maybe everything was going to be just fine. Maybe we were worried for no reason. I felt very hopeful, but there was still a small part of me that was concerned. The doctor scheduled an appointment for us to see a specialist the following day.
During our visit with the specialist the next day, we went back into that same dark ultrasound room. I shuddered as we walked through the door again, but would not allow myself to worry. I just wanted everything to be okay. Everything had to be okay.
The ultrasound tech we had was so kind. This time we were excited as she began to point out the tiny eyes, nose, mouth, ears, hands, and fingers. Each time she showed us another beautiful part of our baby's body, I felt my hope rise. Everything was going to be alright. Our baby had a strong heartbeat, and a head, and arms! After awhile she left the room and told us she was going to get the doctor. Josh and I sat in that dark room, our eyes were fixed on that ultrasound screen where the picture of our baby was still frozen. I felt such love for that tiny little baby, I could not believe that he or she was ours. But in the midst of that joy, I was nervous. So nervous. My stomach was turning at the thought of what the specialist would say.
In only a moment our life changed. When we entered the ultrasound room that morning we were first time parents, with a bright future dancing in our heads. But when we left a few hours later, there was nothing but complete and utter shock. "Incompatible with life." Those were the only words I heard, before my mind stopped working. Before everything went dark. The specialist went on to show us everything that was wrong with our baby. I didn't comprehend anything that he said in that moment.
When he finally arrived in the exam room we had no idea what he was going to say. He gently began to explain that our baby had Limb Body Wall Complex (LBWC). He showed us a few very gruesome pictures and explained that our baby had many anomalies. I can not even remember all the specifics, but we were told that the abdominal wall never formed completely, leaving the intestines and other body parts (kidneys, bladder, stomach) exposed on the outside. In addition, our baby had scoliosis (the spine was very curved and resembled steps as it was very ridged), and on the ultrasound they could only see one leg with a possible foot. He told us the other leg was either not formed, or tucked behind the body at a different angle. The heart, he told us, looked like it was possibly on the outside of the body, or only covered by a thin layer of skin. But the reason our baby would not be able to live outside the womb, is because the chest cavity was smaller than normal, due to all of the abnormalities on the lower half of the body. The smaller chest cavity meant that the lungs would not be able to form properly, and would not be formed enough to allow our baby to breathe on its own outside of the womb.
It did bring a small amount of comfort to know that there was absolutely nothing that we did wrong to bring this awful condition on our baby. There was nothing I ate, drank, or did to cause it. The specialist told us that LBWC is very rare, and they honestly do not know exactly what causes it to occur. But our chances of it ever happening again are very, very low. Normally in this situation, I would have miscarried during the first trimester. But our little one was a fighter. The doctor gave me a 50% chance that the baby would pass inside the womb before birth. He said it could happen at any time.
Our doctor told us that we have two options. We could choose to terminate the pregnancy, or we could continue to carry the baby for as long as it's little heart continued to beat. We were blessed to find out that the specialist was a Christian, and he approached the situation from that perspective. He told us that he would not recommend terminating the pregnancy, because it would damage us spiritually. The best option was to continue to carry the baby (they were unable to determine the gender of the baby on the ultrasound).
Josh and I both knew that we only had one option. We strongly believe that every life is a precious gift from God. It does not matter that our baby was not formed normally, we were given this baby, and it is not our place to end it's life. We knew what we had to do, and we decided to continue to love that baby for as long as we were given.
As we drove home after that appointment, the tears began to fall. Everything that we had ever hoped for was suddenly taken away. No longer could we dream about precious baby cuddles, now we faced the reality of empty arms.
I cannot even begin to tell you when my feelings began to change. During the first weeks I wanted desperately for the pregnancy to be over. I could not imagine how I would emotionally be able to handle being pregnant with a baby that I knew would not survive. I felt angry that I would not be able to keep my baby, when so many of my friends and relatives were preparing to bring their babies home forever. But most of all, I could not understand why all of this was happening to us. This baby was our first, it was suppose to be such a happy and joyful time, but all I could do was cry.
But over time I began to realize that my baby was a gift. I may not be given a long time to spend with my baby, and so I decided to make the most of the time that I had. The remainder of the 15 weeks were very bittersweet. We grieved and processed the reality of losing our baby, of losing so many hopes and dreams that we held in our hearts. But we also felt overcome by peace. We truly felt the peace of God that transcends all understanding. He also filled us with His love and His strength. Those weeks became the best weeks of my life. I would spend hours talking to my baby, telling him or her every detail of my day. I taught my baby how to bake cookies, how to fill up a tank of gas, and how to go grocery shopping. I would sing aloud in my car each morning on my way to work, and I could feel baby kicking and moving along to the beat. My favorite time was at night, when Josh and I would read books to the baby. We read Fairy Tales, Bible Stories, and many of our favorite childhood stories. Then late at night I would wake up, and baby would be curled up all safe and warm on my side, and I could not help but smile in amazement. Those weeks were not easy, but I found such joy in every kick and movement. I grew more and more in love with our little miracle each and every day.
Our baby truly was a miracle. The doctors told us that due to the baby's complications, we would probably feel very little movement, if any at all. But I felt movement almost every day. Towards the final weeks of my pregnancy, Josh and I would both feel baby moving and wiggling around all the time! It was the greatest feeling on earth. The doctors told us that baby was in the breach position, and would not be able to change positions due to a short umbilical cord. But just one week later, baby had moved into a head down position. The doctors told us that the heartbeat could stop at any time, but our baby had a strong heartbeat at each and every doctor appointment. I also believe that it is a miracle that our baby survived and fought to make it past the first trimester, and that we were blessed with 35 beautiful weeks together before the birth. Our baby truly was a miracle!
During those months we began to prepare for the birth and the death of our baby. Yet we still believed that a miracle could happen. And so we prayed each and every day for that miracle. We still hoped desperately for the best, but we wanted to also be prepared for the worst. Our planning involved meeting with a neonatal doctor to discuss our birth plan, visiting the cemetery to pick out a gravesite, touring the hospital with a bereavement coordinator, and sitting down with the specialist to review all of our options. There were many decisions that we never dreamed we would have to make. It was so very difficult and painful. It was the most difficult time of my life. We faced so many unknowns. It seemed like the more that we planned and prepared for the future, the more we really did not know. I hated feeling so out of control. As the mom of this baby, I just wanted to make everything better. I wanted to fix my baby, and have a bright future ahead. But as time went on I realized more and more that I was out of control. There was nothing I could do to change the situation. The only thing left was to trust in God, and to enjoy every moment I had with my baby.
Everything had been going good, baby was growing right on target, and continued to have a strong heartbeat. In fact, we had a doctor appointment that Monday afternoon, and everything looked great. We scheduled an ultrasound for the following Friday, just so we could see our baby again. We were at 34 weeks and 6 days.
At about 7:00 that evening I went to the bathroom and noticed I was spotting a little bit. It concerned me because I had never had any bleeding throughout the entire pregnancy. But after awhile it had stopped, and I thought everything was okay. An hour later I began to feel a strange tightening pain in my lower back. It started off just being a bit annoying, and I thought it was because I had done too much that day. But over the next few hours it got stronger and stronger, to the point where it was very uncomfortable and even painful at times. I was freaking out, it was way too early for the baby to be born. I was just not ready yet. I was suppose to have 5 more weeks left with my baby safely inside of me. But I finally got up the nerves and called the doctor at 12:30 am, and he told us to come to the hospital. By the time we reached the hospital I was having semi painful contractions that would come and go at very regular intervals. I was so nervous and worried, it was too early for the baby to come. I was not ready. I still had so many things I wanted to teach my baby, and to share with my baby. I was not ready for it to be over.
As I entered the hospital I felt an overwhelming sense of peace wash over me. God had been faithful to us throughout this entire journey, and he would be faithful now. Whatever happened next was in God's hands. So we entered the hospital with a baby in my stomach, and peace and sorrow in our hearts.
The doctor told me I was dilated to 4 cm, and that they would wait one hour to see if I was still progressing before we decided what to do next. While we were waiting, our little one decided to give us a little show. He or she was moving all over the place inside of me! Despite being uncomfortable and in pain because of the contractions, I was smiling and laughing at the beautiful sight on my stomach. That little one always knew how to bring joy to my heart!
One hour later I was now dilated to 5 cm, and it was time to move forward. We had decided beforehand on having a C-section, so that we could give our baby the very best chance of being born into this world alive. They began to prep me for the surgery. It was 4:00am, and every single person in my family, and in Josh's family had made it to the hospital. It was such a blessing to have them all there for love and support.
During the prep time we met with the on call doctor, who happened to be such an amazing
doctor. We also met with the neonatal doctor, who would be present at the birth. He asked us
what we wanted for our baby. I told him that the only thing we wanted, was to have our baby
placed in our arms as soon as possible. We wanted to hold our baby alive for as long as
could. He explained that they would quickly examine the baby immediately after her or she was born, and then hand the baby to us. He also explained what we should expect as the baby
would likely not be able to breathe normally. But through all of this, we still had hope that a miracle could happen. But either way, we knew that it was time to meet our precious baby!
Our little one was born into the world at 5:16 am on Tuesday, June 17, 2014. It was the most beautiful and perfect baby that I had ever seen! (although I may be a little biased!) Our baby was 3 pounds and 5 ounces, 10 inches long. I was so in love with that tiny baby! The doctors very quickly cleaned and wrapped the baby up, and placed him or her into Josh ' s arms. Due to the severity of the baby's condition, there was no way they could determine the gender at birth. So we sent the placenta to be tested to find out.
Josh was able to feel the baby take two small breaths, and then they handed the baby to me. I whispered into the baby's ear, "your mommy loves you so much sweet baby". Those words will echo in my memory forever. I know he or she heard me, because I also felt the baby take two shallow breaths. It was more than I could have ever asked for, just knowing that my little one could finally hear my voice in the real world, and that he or she knew what it felt like to be held in the arms of mommy and daddy. We had 19 perfect minutes to spend with our baby alive, before he or she entered into heaven, safely in the arms of Jesus. Those were the greatest 19 minutes of my life. It was in those minutes that I knew we had made the right choice. I would cherish the short time that I had with my baby forever. No matter how hard it was, I would never trade those moments for anything.
Our baby was absolutely beautiful! Even though he or she was born at 35 weeks, it looked like a full term baby. Those two perfect little eyes were closed (we never saw them open) so peacefully. The baby had a tiny noise, and such a perfect pouty bottom lip, which Josh said came from me. Also, the baby had long arms, with ten tiny fingers. Our baby had the darkest head of hair, and there was so much of it! Nobody could get over that full head of curly dark hair, it was so beautiful. The nurses allowed me to help wash the baby, while I was in the recovery room. They treated our baby with such love and respect. It was as if our baby was no different than a normal baby. It meant so much to me that they loved and honored our baby.
Ever since we found out that our baby had LBWC, I wondered what it would be like to hold a baby who was no longer alive. It scared me a little bit when I though about it. But honestly, the only thing that I saw when I held my baby, was my baby. My baby was so beautiful, and just looked like he or she was sleeping so perfectly in my arms. I felt such deep love for that little one, a love that far surpassed anything else that I was feeling that day. Josh and I had spent much time grieving and crying over what we were going to lose during the past 4 months. So on that day of our baby's birth, we felt so much joy and happiness that our baby was finally there in our arms. It made that day so incredibly special.
The whole day we had our family and close friends come up to visit. It was such a blessing to be surrounded by so much love and support. Josh and I decided that we wanted to keep the baby with us overnight. So after a few hours of sleep we were awakened by a thunderstorm. From our hospital room we had a spectacular view of downtown, and we could see the lightning illuminating the buildings in the distance. Josh crawled into the bed beside me, and we spent the next hours snuggling and enjoying our baby together. We memorized every detail of our baby's face and body. I did not want to forget anything.
But the next morning came too quickly, and we realized it was time to say goodbye. We truly knew our baby was not with us any longer, we were only holding the body, and that our baby was safely in the arms of Jesus. But it was still so very hard to let go. We knew that after our baby was gone, we would be left with nothing. My worst nightmare come true, I would have empty arms.
My mom's brother, my uncle, is a licensed funeral director. We were so extremely blessed that he
was the one who came to take our baby to the funeral home. We were able to place our baby safely in his arms. It was the hardest thing that I ever had to do. It will forever be the hardest thing i have to do. But I also felt such peace in that moment. I knew that it was time for our baby to go, and that we had loved on our baby with every second we had been given.
My mom's brother, my uncle, is a licensed funeral director. We were so extremely blessed that he was the one who came to take our baby to the funeral home. We were able to place our baby safely in his arms. It was the hardest thing that I ever had to do. It will forever be the hardest thing i have to do. But I also felt such peace in that moment. I knew that it was time for our baby to go, and that we had loved on our baby with every second we had been given.
On Sunday morning we had a memorial service for our baby. It was a beautiful sunny day, and I could just feel my baby smiling down on us. We were supported by our close family and friends. It was a beautiful service filled with many tears, lots of sorrow, but also hope. At the end of the service we released 55 white balloons in honor of our baby. It was such a beautiful reminder of the miracle we had been given, as we watched them wiggle and dance their way up into the blue sky.
Exactly three weeks later we got the phone call from the doctor. Our little baby was a girl! Finally after all of the weeks upon weeks of waiting, we knew we had a daughter. We named her Caroline Joy. The name Caroline means "song of happiness". It just seemed so fitting. Because despite the awful diagnosis, the pain, the heartbreak, the anger, and the sadness, she brought me joy and happiness. There was never a day that went by throughout my pregnancy where she did not bring joy to my heart! That tiny girl was my miracle baby, in so many ways. She gave my life meaning and purpose. I am so thankful that I allowed myself to love, despite the pain and sadness. Because in doing so, I also felt incredible joy. That joy will continue to fill my heart, even as I deeply mourn the loss of my baby, my heart.
As difficult as this journey has been, I would not trade it for anything. Although if I could change the final outcome I would do so in a heartbeat. But my little Caroline was a miracle to me in so many ways. By choosing to give her life, I was able to experience that first hand. I was able to fall more and more in love with my precious little girl each day, and I was able to hold her in my arms. I would never give up those precious moments when I could kiss her little cheeks, comb her silky soft hair, and hold her precious fingers in my hands. Those are memories I will hold onto forever. My Caroline was able to touch so many lives during her short time here on earth. But the one life she had touched the most is mine. She taught me how to be brave, she taught me how to cherish even the smallest miracles, and most of all, she taught me how to love. Caroline taught me how to love with all of my heart, even though I knew it would lead to incredible pain and sorrow. By choosing to give Caroline life, I was given the greatest gift in the world, my precious miracle.
Thank you for taking the time to read Caroline's story. I hope that it touched you in some small way today.
Amalia (Caroline's Mom)
Copyright © 2021 Limb Body Wall Complex - Continuing The Journey - All Rights Reserved.
Powered By A Mother's Love