Ronnie, 2 days old, holding Nona's hand

7 days post-Norwood

4 months ol

4 days post op BT shunt

7 months old with sisters Seneca and Viviane

Ronnie opening his first Christmas present

Ronnie was born by emergency c-section after his heart rate dropped to 80 and did not recover. His Apgar scores were 9, and through my morphine haze, I vaguely remember catching a glimpse of him wrapped in a white blanket, those dark blue eyes trying to gather all that was happening. Daddy went with a nurse to the nursery to get him all cleaned up and meet me in my room. Our family was complete, two girls, one boy, and everything was fabulous. That's when everything changed.

Within moments of arriving at the nursery, Ronnie's extremities and lower half turned blue. We all know the story now, but very few of us knew anything then. "Your son is very sick, and he may not make it" were the first words I recall hearing in recovery.

The next few hours were a blur of moments with doctors saying things I did not understand, followed by horrible stretches of silent fear. Ronnie was airlifted to Hope Children's Hospital. Prior to his departure, his team of paramedics brought him to my room so we could say goodbye to him. We were encouraged to touch him, take photos and say goodbye. He was six hours old.

Then, everything changed again. Ronnie was settled into the NICU in his new "digs" and his nurse spoke with us and was talking about how beautiful he was. We asked "so, then he made it there?" and she responded that he was there, he was bathed and he was stable. A cardiac team would round soon and discuss his condition, order labs and tests and contact us soon with their diagnosis. Ronnie was over an hour away from us, and in a different state.

"Your son has interrupted aortic arch, aortic stenosis, and a good sized ventricular septal defect. Do you understand?"

"No."

Thanks to internet searches, talks with family members in the medical field and my own sense of urgency in understanding my son and making the best decisions for him, I started to understand everything. We decided the best thing to do would be to go with the pros on this one, and their best course of action was ours.

When three days old, Ronald had the Norwood procedure. I would love to describe this day to you, but I suffered a massive nervous breakdown and have only two clear memories of that day. One is of eating a strawberry, the other is of the scrub nurse telling me something, and all I could focus on was a spot of blood on her that I knew came from my son. Ronnie did very well; following his operation he was settled in his room and my husband tells me that we were able to see him once more.

Oh my God the swelling! All the machines! All of these medications! My son! What have you done to my son! I wanted to scream, I wanted to cry, but I could only stand at his bedside and hope beyond hope that these doctors and nurses knew what they were doing. I could only hope that they understood that this child was so very important.

Then, the swelling was gone, and the machines were turned down, and then turned off, and then the medications started disappearing. The tubes came out, the chest was closed. This little person appeared, and he was beautiful. And he came home 20 days after he was born, a length of time that was torturous for all involved, yet surprisingly short compared to others.

All was fine until October when his feet started to turn so purple they nearly looked black. Ronnie had a cardiac cath on October 20th, and admitted after the results showed that he had outgrown his Sano shunt. On October 22nd he had a modified B-T shunt and he was home 5 days later. This time around we all did much better, and I even have some memories of that period in time.

Now, Ronnie is growing, and smiling, and developing like a cardiac patient . . . slowly but surely, and he is my hero. His cardiac team has decided to do a Rastelli procedure on Ronnie when he is big enough, and we are all optimistic.

During Ronnie's B-T shunt surgery, I read an essay called Welcome to Holland, and for the first time I realized that I was not alone. When Ronnie came home, I started joining CHD baby support groups and learned about other families who were living with the same emotions as we, and now I feel as if we have this huge group of friends we haven't met standing behind us, and we do the same for them. I cannot express how sites like this help people cope, learn, and grow, hopefully someone far more literary than I will.