| Cece's Story |
Our little girl, Camila Christine (CeCe) Barnes was born on June 2nd, just one week before her due date. She was born on a Thursday, just like her big brothers and sister. CeCe is our fourth kiddo. My pregnancy with her was normal + routine with no concerns. We didn't find out gender, so we were very anxious to meet Baby. On June 2nd my husband and I went to my weekly OB appointment and everything was good. We got groceries, dinner, and went home to our other kiddos. After we got the big kids to bed I told him, we have to go to the hospital, Baby is coming soon. So my in laws came over to sit with the kids and off we went to the hospital.
My laboring at the hospital is typically quite quick - a few hours. When we arrived I was having contractions so I walked around, swayed, etc. My husband and my mom were with me. After about two hours I told the midwife I wanted my water broken. She broke it and I walked around a bit more. Soon I felt I was ready to push. Our baby girl was born shortly there after. She cam out screaming + healthy. She had lots of dark hair and looked just like her big sister. My husband and I couldn't believe we had another girl - we had boy, girl, boy, girl and were stunned! We were SO excited! Within minutes of the umbilical cord being cut the nurses noticed her blueish toes and fingers weren't pinking up. They took her from my chest to give her oxygen and very quickly realized her color was not improving and they feared something was wrong with her heart. The NICU team was then called. When the nurse came into our room she knew she had to get Camila to the NICU as soon as possible. They took her right away and I didn't see her again until almost noon the next day.
During this time apart, she was air lifted to the Stead Family Children's Hospital in Iowa City. The doctors and nurses started working right away to establish CeCe's diagnosis. It was confirmed that she did have cardiac issues and stents were placed in her veins going to her heart. Shortly after they saw internal bleeding and confirmed that she had lacked adequate oxygen to her brain for several hours. It was then decided she needed to go on ECMO. This had all happened before I even arrived in IC, however I am thankful my husband was with her the entire time. Numerous other tests + procedures happened, what seemed continuously after I had arrived in Iowa City. Our goal was to let her little body rest for about a week to gain weight and energy for her to sustain open heart surgery. However, blood clots began forming in the ECMO tubes, along with internal bleeding, distention, bleeding on her brain + so much more. It is hard for me to even remember every detail, setback, or unfortunate news updates we obtained from her care team as I felt like I was in a fog.
On June 4th, just shy of two days old, the ECMO machine was turned off, along with all of the other machines that were helping to keep our sweet Camila's fragile body alive. Daddy got to hold Camila for the first time, I got to see her little face without tubes, and we got to love on her as she took her last breath and as her heart beat for the final time.
Coming home that night was the hardest, most surreal night of my life. Waking up the next morning hoping it was all a bad dream, only to realize that it was, in fact, our reality was sickening. Big brother Oliver (7), sister Amelia (5.5) and brother Calvin (3) wanted to know why we had been gone. We had been preparing them that if we were gone when they woke up we'd be at the hospital having the baby. Our children were confused + wanted to know why we were home, but Baby wasn't.
The days + months following Cece's birth + death have been the most devastating days of my life. I am so thankful to have found NFTS as an outlet + support system through this heavy + heartbreaking time in my life. The support I have found within the group has carried me through some of the worst times. I am so thankful to be able to celebrate + honor Cece + keep her memory alive.
IN HONOR AND CELEBRATION OF CeCe, DONATIONS CAN BE MADE HERE. ON BEHALF OF THE BARNES FAMILY, THANK YOU FOR YOUR GIFT.