Nevaeh’s Rainbow was created in 2011. We donate care packages to families with babies in the intensive care unit in Wisconsin. We also provide memory boxes to families that have had to say goodbye to their infants too soon.
My daughter Nevaeh Grace was born at 30 weeks. Throughout my pregnancy, I experienced many complications with her, but we never expected her to be born early, further adding to her complications.
At 20 weeks, we found out my little girl had Down syndrome as well as a condition called duodenal atresia. Because of the atresia, she was not able to swallow amniotic fluid, so I quickly had an over abundance of it. It started to put pressure onto my cervix, and at 21 weeks I started having contractions. I was put on bed rest with weekly checkups and non-stress tests. Everything was looking up, the contractions had stopped, and although she would need surgery when she was born, she was expected to be healthy.
At 30 weeks I went in for a routine non-stress test. During the middle of the non-stress test, a group of doctors and nurses rushed in and started turning me on my side and putting an oxygen mask on me. I was so scared! No one was even explaining to me what was going on! They informed me that Nevaeh’s heart rate was dropping, and they were admitting me into the hospital for an emergency c-section.
All I kept thinking was that it was way too early in my pregnancy! I was so worried about my baby. It all seemed so unreal to me! To make matters worse, my family lived four hours away, and my husband was stuck in rush hour traffic. I felt so alone and so scared. My doctor assured me that babies born at 30 weeks have a good survival rate. At the time I did find it a little comforting, but I knew the road ahead was going to be a long one!
My husband arrived in the knick of time to welcome our beautiful, precious, little baby girl into the world – weighing in at 2 pounds, 2 ounces. I remember I was worried because she wasn’t crying when she was born. But they held her up, and her eyes were wide open, looking straight at me. She was so calm! It was like she was telling me not to worry, everything would be ok.
To the doctor’s amazement, Nevaeh did better than they expected. She was completely breathing on her own and was just on room air. I was so proud of my little girl already, and I knew that I had a fighter on my hands! The next few days are quite a blur to me. That night I almost died and they had to call a code blue on me. I still am not sure what happened – if it was an overdose of medication, or an allergic reaction of some sort. All I know is I quit breathing, and I am very thankful I was wearing an oxygen monitor on my finger as it saved my life.
Nevaeh went through good phases and bad phases. It seemed like she would take one step forward, and two steps back. On the day she was going to go in for her duodenal atresia surgery, she ended up with pneumonia. Then she got sepsis, and an infection in her PIC line.
They decided they were going to do emergency surgery to put a central line in, and for the sake of not putting her under anesthesia twice, they were going to do her duodenal surgery at the same time. I remember holding her, telling her to be strong, and that everything was going to be ok.
After surgery, they told us that they had some issues with getting Nevaeh on the ventilator. Her blood pressure had dropped to 10/5. We were just very thankful that she made it through the surgery, and could be on her way to recovery and eventually come home with us!
That night I got a call that Nevaeh’s breathing was not good. The next few days seem like a dream – or a nightmare for that sake. Because her blood pressure dropped so low, it damaged her kidneys. She wasn’t passing any urine, and was essentially filling up with fluid. Because she was so small, dialysis was not an option.
On July 11, 2006, we were called into a conference room by a social worker and told that there was nothing more they could do for our daughter. They told us she was not going to make it. We were completely devastated. I had so many questions – what if she hadn’t been born premature? What if she wouldn’t have gotten pneumonia or sepsis? It all didn’t seem fair! Why wasn’t God answering my prayers for a miracle?
Ultimately my husband and I decided not to prolong her suffering and remove her from the ventilator. It was the hardest decision I ever made in my life. I sometimes still question it. Would she have made a miraculous recovery? Did we fail her as parents by giving up on her? Were the doctors possibly wrong? It’s been six years now, and I have finally forgiven myself, and have found peace with our decision. I know it was the last thing that I did as a parent for my daughter.
The six weeks that my daughter spent in the NICU, were the loneliest of my life. Having no family close by, and a husband that had to still go to work to provide for us, I was often at the NICU all by myself. I am so thankful for the wonderful nurses and volunteers who kept me company. I remember nurses bringing in blankets or stuffed animals that were donated by people. I found comfort in people’s generosity and gifts. It gave me hope in a time that it was so hard to have hope. I vowed I would always pay it forward, and try to comfort a mom in need – like I once was. That is why I am so grateful to be a part of Project Sweet Peas.