Ramona is 6 years old. She is bright and wildly creative. She goes to kindergarten. She reads and writes, colors and sews. She plays the piano and speaks Spanish. She belly laughs. To a casual observer she is just an average little girl. But Ramona has had 13 surgeries. Three of those were open-heart surgeries. She has an absent parathyroid gland, is behind with her gross motor skills, and has a compromised immune system. Our life with Ramona is filled with uncertainty but also great joy. We have learned, and are still learning, to grieve her illness while celebrating her just as she is.

After a second trimester miscarriage and years of infertility, I had all but given up on having a biological child and my husband, Andy, and I were starting the adoption process. When I realized I was “late,” I sighed and resolved to take my 612th (probably negative) pregnancy test. At 4:00am the next morning I stumbled into the bathroom, did my duty with reasonable accuracy and sat down on the side of the bathtub to wait. I briefly looked away and when I looked back I saw TWO LINES. I actually rubbed my eyes to make sure that the early hour wasn’t causing me to see double. TWO LINES. I staggered back to the bedroom and woke Andy with the news. We were so shocked that we laughed at the joy and absurdity of it. And we worried. We worried that I wouldn’t stay pregnant. We tried not to get our hopes up. We told the news of our pregnancy slowly and seriously.

Just ten days after our positive pregnancy test, I got a phone call from the adoption agency telling us that a little boy had been born and was available for adoption. We had less than an hour to accept or decline. I called Andy at work and we made the decision over the phone. The next morning, after a flurry of phone calls with the agency and our lawyer, we brought home a beautiful three-day-old boy, our son Simon. In the months that followed, my anxiety about the child I was carrying gave way to excitement. We found out we were having a girl. We picked out names and planned another nursery. We imagined our life with not one, but TWO babies. Our prayers had been answered and we were about to be an instant family of four!

Like many new moms I dreamt of a perfect pregnancy, a peaceful birth and pleasant mornings spent nursing and cuddling. The daughter I imagined was a magical combination of our best qualities. She would have Andy’s dark hair, our fair skin, his green eyes and intelligence and my creativity. She would be a sharp-witted heroine, a Nobel prizewinning underwear model. But the pregnancy was not what I expected. I was often sick all day and became so swollen that I could barely fit my husband’s shoes on my feet. We were planning a homebirth, but when my water broke at 38 weeks the labor failed to progress and we headed to the hospital. After lots of Pitocin, contractions and pushing, our Ramona Mae was finally born via emergency C-section.

When they brought Ramona to my bedside, the first thing we noticed was her exotic, dark appearance. We laughed that two of the palest people on earth had spawned a child who looked positively Mediterranean! She was such a sweet baby. She was sleepy and slow to nurse but peaceful, cuddly and bright-eyed. APGAR scores were both nines. She was pronounced healthy and sent home with us a few days later.

The Dynamic Duo

A few months later, Ramona continued to be sleepy and slow to nurse. Her periods of alertness were decreasing and her weight had plateaued. She sometimes slept 12 hours at a time. I brought her to the pediatrician’s office 11 times in those first two months. They told me she was cold and suggested a hat. They told me I was not nursing enough and suggested I recommit my efforts. They told me that not all infants meet their milestones right on time. They told me not to worry and just to enjoy my baby. But my intuition told me something was not right so I sought out another opinion.

The second pediatrician was more responsive. She listened to my concerns and noticed that Ramona was turning a bit blue when she cried which I thought was normal for some babies. She ordered an echocardiogram, a detailed picture of her heart, to rule out any heart or lung problems. I honestly wasn’t overly worried. I suspected a milk allergy or a tongue-tie. But I took her in a few days later and they did the echo. The technician could not give me any results but did ask me several times if I would be home on the following Tuesday morning when the cardiologist came back into town. And could I be available to take her call first thing in the morning? That should have been my first clue that something wasn’t right.

Part Two is here.