“We found out we were pregnant with our first child right after the Fourth of July in 2018. I had just finished all of the requirements for getting my doctorate degree in occupational therapy, my husband, Matt was in the process of changing careers to his dream job, we had our dream house with the perfect room for a dream nursery – the timing just felt perfect to add our first child to our family. We were over the moon.
Throughout the next nine months, I had a relatively uncomplicated pregnancy. Caroline was an extremely active baby and loved to kick and roll. Matt and I joked that she would be a wild one. We said we would have to enroll her in soccer and gymnastics immediately because of how much she loved to kick and flip inside my belly. When I was 32 weeks pregnant, we invited our entire family to view a 3D ultrasound of our precious girl. The ultrasound technician talked about how perfect she was. She opened her eyes, smiled, and even yawned. We could tell she had my lips and Matt’s nose. It made us even more excited to meet this precious girl in just a few short weeks.
When I was around 37 weeks pregnant, I experienced extreme back pain in the upper part of my back on my left side. I was admitted to the hospital where they did a renal ultrasound to check out my kidneys. It was found that I had hydronephrosis, which basically meant that the baby was pushing on my kidneys or ureter and causing pain. This is a pretty common pregnancy symptom and one that the doctors were not too concerned about. We were confident that Caroline was okay at that point because, while we were in the hospital, her heartbeat was strong and she was still extremely active. I was cleared to go home and stick it out until delivery. A few days later, I stopped feeling her move. Because she was usually so active, I knew something wasn’t right. I went into my OB’s office and they found that she had a strong heartbeat and smaller movements were felt when doing a kick count. They determined that everything seemed fine and that the decreased movement was due to her size and inability to move around inside my belly. They sent me home.
Ten days later, on March 9, 2019, I started having contractions. I waited until they were regular contractions, and then me and Matt took off for the hospital around 6 a.m. The nurse immediately noticed that Caroline’s heartbeat wasn’t ‘reactive.’ From my understanding, we should have seen spikes and dips in her heartbeat as contractions occurred. It just stayed the same the entire time. After trying some things and talking with the doctor, we determined I needed to go in for a c-section to get Caroline out because something wasn’t right. By 11:30 a.m., I was being wheeled back to the operating room. By 12:20 p.m., she was born.
I knew it was bad from the start. We heard her cry, but it wasn’t a normal cry. They showed her to me from the operating table but didn’t let me or Matt touch or hold her. They wheeled her off immediately and allowed Matt to follow. Once I was in recovery, Matt came back and told me what he knew.
‘She had to be revived because she wasn’t breathing after her birth,’ he told me.
Her color was bad and she had no motor movements. She was requiring a tube to breathe, IVs in her belly button, and a ton of other wires, tubes, and monitors to keep her alive. Everyone was in shock. The doctors were still trying to figure out what had gone wrong. Matt and I were in disbelief that our perfect baby was struggling to stay alive. The doctors decided to transfer her to another hospital across town with a more intensive NICU. She would be leaving us that very night. I was unable to go with her because I was still recovering from the c-section. The second time I got to see her was through a hole in the transport unit as they wheeled her out to take her away. We were briefly able to lay our hands on her, pray over her, and tell her how much we loved her before she left with strange people to go to a strange place without us. It was terrifying and devastating.
That began our stay at Northside Forsyth’s NICU. We spent 74 days in this NICU. MRI and EEG results revealed that some sort of injury seemed to have occurred in utero approximately 10 days before I delivered. They believed it was some sort of totally random cord accident where the umbilical cord was clamped just long enough to decrease oxygen and/or blood flow to her brain. This left her with a severe, global brain injury and a diagnosis of Hypoxic Ischemic Encephalopathy. Caroline was able to have the breathing tube removed 10 days after her birth. However, for the next month and a half, she was unable to come off the other oxygen support, continuing to need extreme support to breathe. She also did not have the suck/swallow/gag reflex, requiring a feeding tube for all nutrition.
Because she couldn’t swallow, she required constant suctioning (sometimes every 20 minutes) to prevent secretions from going into her airway. She still presented with what they called ‘non-purposeful movements’ and required special splints and therapy to prevent contractures in her upper and lower extremities. She was on a variety of different medications to help make her comfortable and prevent agitation. We knew it was bad, and we were right. It was really bad. We consulted with several doctors and one of the top pediatric neurologists in our area. We were told that her prognosis included never being able to breathe or eat on her own, an extreme risk of aspirations-potentially causing multiple cases of pneumonia, never being able to sit up on her own – which would eventually lead to her being wheelchair-bound, frequent hospital stays, a shortened life expectancy, possibly never being able to see or hear, and on and on and on… We prayed for a miracle, but we knew that leaving her hooked up to machines to keep her alive while she was also suffering was not a miracle. We decided on May 4, 2019, to take her off the breathing support and let her pass peacefully, surrounded by those that loved her.
Anticipating that time brought some of the worst anxiety and days of my life that I’ve ever experienced. My heart aches knowing that others have gone through or will have to go through making the decisions that we made and living the reality we lived. We had so much support from our friends, family, and the nurses at Northside Forsyth. People came to visit her, our pastors came to pray over her, and we just tried to make as many memories with our baby as possible. We were beside ourselves as that day approached. It was heartbreaking, gut wrenching, and just absolutely devastating. Little did we know that Caroline had other plans… The first night was rough after removing her oxygen support. We thought she would leave us for heaven at any moment. By the morning though, her color got better. Her breathing was more regular. And after testing, they confirmed that she was effectively breathing on her own! I truly believe we witnessed a miracle that day. She shouldn’t have been able to do what she did. All of the doctors were baffled. We had tried decreasing her oxygen before, and she had failed. The only explanation was that it was a miracle from God.
Fast forward, now that she was breathing on her own, we were able to consider the possibility of actually bringing her home. We made the plans to transfer her to the Children’s Hospital in Atlanta to undergo surgery for a permanent feeding tube. On May 22, 2019, the transport team showed up to take her to Atlanta, she received the surgery on May 24, 2019, and we went home on May 28, 2019. I’ll say it again… It was truly a miracle. Although our dreams came true when we brought Caroline home, we continued to be realistic about her quality of life and the needs she required, so we brought her home under the care of a hospice company.
The doctors told us that, just because she was breathing on her own, it didn’t change the outcome that they felt for her life and life expectancy. We were just happy for any additional seconds that we could have with our baby, and considered any moment beyond May 4th a miracle from God. We spent 10 days at home with our miracle child. We had so many great moments in those 10 days. We took our first trip to the Krispy Kreme drive thru. The next day, we spent an hour at the local Farmer’s Market. We even took a trip to one of our favorite places in the world… Costco. We took her on walks around the neighborhood. We gave her baths. We visited with family. We learned about the sleepless nights, the diaper changes, the blowouts. We knew we were real parents with a real baby, but for the first time, it actually felt like it. We got to experience some of the life that we were desperately longing for.
As happy as we were, it couldn’t deter us completely from her true reality. She was hooked up to a continuous-feed feeding pump with about a four-foot tube. She had to stay within the radius of this tube for 20 hours a day. She was on a strict medication schedule throughout the day and night. A portable suction machine followed her around everywhere. She continued to be at risk for muscle contractures and infections. While she was still breathing on her own, it was always an irregular breathing pattern, and she always presented like she was in respiratory distress. It was a hard life for my poor baby. She was suffering. We knew we needed help but weren’t sure what the answers were. On Friday, June 7, 2019, the hospice nurse was doing her routine visits to our house. While she was here, Caroline was really struggling to breathe, causing increased agitation. The nurse wanted to try another medication to help ease her suffering. Caroline had an immediate reaction to the medication and stopped breathing. I still had her Owlet monitor on her foot and watched as her oxygen saturation rates continued to drop. We administered oxygen at the house and she still did not recover. My baby was dying in my living room, so I called 911 and they stabilized her long enough to transport her to Kennestone Hospital in Marietta, Georgia. Matt was racing home from work and he arrived just in time to follow the ambulance to the hospital. This was the scariest moment of my entire life. In the emergency room at Kennestone, they intubated her again. Seeing her laying on an adult sized emergency room bed with a tube down her throat, IV’s in both arms, and countless wires coming from every part of her body is something that will haunt me for the rest of my life. I remember begging the Lord, ‘Please never let her suffer this way ever again.’ My heart couldn’t handle watching my baby endure such pain. Later that day, they transferred her back to the Children’s Hospital to try and extubate her. I honestly thought she would be able to come off the breathing tube easily and we would be on our way back home. That wasn’t the case. Her body was tired. She couldn’t recover. On June 9, 2019, exactly three months after her birth, Caroline passed peacefully in both of our arms.
‘It’s OK to let go, baby. Jesus is waiting for you and we promise he’ll take care of you,’ we told her.
We know she’s okay now. I felt that the moment I felt her life leave her broken body. Our lives are broken and holes have formed that will likely never be filled. Our days and nights continue to be hard without the baby we were desperately longing for, our sweet Caroline. From day one though, we vowed to trust the Lord’s plan for our precious baby’s life. And I’ll just tell y’all… He did some big things. Although her time on this earth was short, that precious, tiny girl touched more people’s lives than I ever could begin to imagine in my own 29 years. She brought people closer to Christ. She led people to pray that have never prayed before. She brought families together and grew all of our hearts in ways I could never imagine. She was an angel on this earth, just like she’s now an angel in heaven.
Her story has taught us all that this world is cruel. No one is immune to this cruelty or the threat of tragedy in their own lives. BUT beauty can be found amidst tragedy. Laughter can be had amidst tears. And LIFE can be found through death. We know her life has been made whole through the sacrifice that Jesus made, and that she is FULLY healed right now in heaven with Him. Through our pain, we’ve prayed so hard for comfort and peace, and that is exactly what the Lord has provided us. We’ve learned lessons that have taught us how to grow closer in our marriage, be more supportive to those around us, advocate for what is right, and how to accept the sunsets and embrace the sunrises of our lives. Thank you for reading the story of my sweet Caroline. I hope her story inspires you to refuse to let the tragedies of your life define you. I hope that you’re able to find gratefulness despite grief. And I hope that her story helps you feel closer to our family and to the baby that showed us that miracles do exist, and that God is near to those who believe.”
This story was submitted to Love What Matters by Danielle Biddy of Holly Springs, Georgia. You can follow her journey on Instagram and her blog. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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