Everett's story--the diagnosis

{portrait by AshMae, see below for details or click on the picture}

I remember vividly the moment I learned Everett had congenital heart disease. The previous night had been sleepless, and Everett's eating and activity had continued to diminish. He was 36 hours old. I was pleading for help, but our nurse told me I was overreacting. "There is absolutely nothing wrong with your son," she said, but as much as I wished she was right I knew it was not true. Every person who walked into our small hospital room heard my plea, and finally an incredible doctor trusted my instinct, and thinking he just had an eating problem had a lactation specialist come to my room. She noticed that Everett was having difficulty breathing, and sent him to the nursery for an evaluation.

What she guessed was some kind of an infection, turned out to be Congenital Heart Disease. By the time the NICU doctor walked back into our room to draw a diagram of the heart and break the news, little Evie was barely hanging onto life and was being prepared for transport to UC Davis for recovery and surgery. My immediate question to the doctor was, "Can I hold my baby one last time before he is transported." I have seen that doctor's face in my mind over and over again as I ponder the events of that day. It's as if her eyes were saying the words she couldn't say, "You poor, innocent girl. You have no idea what's going on. You have no idea how bad it is." And I didn't. I had no idea how serious it was. Severe coarctation of the aorta, a VSD, transverse arch--his diagnosis was still just pictures in our doctors notepad to me. She kindly said that the NICU team was working hard to prepare him, but that James could go be by his side while they worked.

I thank God everyday for helping me be in tune to Evie's needs and giving me the courage to fight for my son's life. I also thank Him for sending inspired people who chose to listen to me, his mother, who had nothing but a mother's instinct to back her claim. We were so close to losing him that day.

After the diagnosis was made, there was a rush of activity. Grandparents were cleaning, making phone calls and researching Everett's condition. I was still recovering from a c-section and had yet to leave my bed alone, but I knew that I had to get up. The reality of our situation was slowly setting in and I felt like I was literally going to blow up. I HAD to be with my baby. Before anyone knew it I was up and out the door. Hobbling like a 90-year-old woman, yes, but I was going to see my baby before he left that hospital.

I made it half way down the hall when my eyes met my mother's. She had left the room to call my dad, and immediately got off the phone when she saw me coming (maybe for fear that I would fall over in my 90-year-old-woman state!) I instantly fell apart, reverting back to being her baby girl as I longed for my baby boy. I have never been so raw in my life, in fact, it's the closest thing to an out-of-body experience I have had. I was sobbing. I was hitting the walls and I was screaming, "Let me see my baby. I need to see my baby." My memory of that experience is all a little fuzzy, but one thing that has remained vividly, and nearly tangibly clear, is the love I felt for my Everett. I loved him so much that it hurt. Some things never change.

My mom was understanding, loving, empathetic and strong. She let me lean on her--both physically and mentally--and she helped me find the NICU and my baby boy. I'm so grateful she was there.

The NICU was filled with throngs of people trying to save Everett's life. I could barely see him through the masses, but as always he looked beautiful and at peace. Before I knew it, I was on the phone with our cardiologist who helped me understand more about Everett's condition. The only thing I remember about that conversation was asking him, in between sobs, how and why our baby boy was born with a broken heart. I thought I had done everything right. I religiously took my prenatals, I didn't drink, or smoke, or even drink caffeine. I had never heard of Congenital Heart Disease, but instantly assumed that this was something I had done to my child. Guilt flooded my body. I begged for clarity, and the doctor eased my anxiety. He told me that Everett's heart defect was present before I even knew I was pregnant with him (probably in the first 40 days of pregnancy), and was not caused by anything I had done. It was then that I learned that congenital heart disease is considered to be the most common birth defect, effecting approximately 1 in 100 children.

It's amazing how you go from never knowing something exists, to having it be the center of your world. I have spent the last seven months reading books, blogs and articles about heart disease, children with different defects and our specific conditions. It has become a passion and an obsession. And it's also become very normal. We've accepted and embraced our roles as members of the heart family. We feel safe there.

If I could have three heart wishes, my first would be that congenital heart disease didn't exist at all--that all babies were born with amazingly well-functioning hearts and lived happily ever after. You gotta wish big, right? If that couldn't happen, my second wish would be that no baby ever died from congenital heart disease. I would wish with all my might that the research, technology, surgery, etc. was so advanced that no sweet heart baby would have to leave their mothers arms. I ache for them, and I ache with them. Since that is still not possible, my third wish (and the one I'm working to make my reality) is that people become aware of congenital heart disease. My wish is for parents and family members of future heart babies to know they are in a community of people who love them. My wish is for people to be so moved and affected by the stories of my little guy, and the countless other heart children, that they donate all they can to help the CHD battle. And maybe when my third wish is accomplished, my second will soon follow. And maybe, eventually, my first wish will be granted.

Oh what a day that will be.

**The gorgeous portrait of Everett was done by my talented and amazing friend Ashley Mae. Everytime I look at that scar down his chest I remember how blessed we are. She has agreed to sell prints of that portrait for $10 and donate the proceeds to Congenital Heart Disease research. I love Ashley's work on this piece because that baby could be anyone with a CHD--my baby or yours. I can't wait to get the hard copy and put it up in my house. Here is the link to the print: http://www.etsy.com/listing/92584209/congenital-heart-disease-awareness Enjoy!