June

I have lupus, which was diagnosed when I was pregnant with my first daughter. It was a scary time. I was monitored very closely, given tons of prednisone to keep flares at bay and ended up delivering a beautiful, healthy baby girl at 36 weeks by scheduled c-section. My lupus, so far, is relatively mild and I was given no indications by any of the specialists that I couldn't/shouldn't try for a second child.

In the fall of '07 I had a very early miscarriage. Very shortly after, I found myself pregnant again. I was monitored very closely again, but a rheumatologist and perinatologist. This time my lupus was well under control. I was feeling great the pregnancy was going great as well. At my 20 week appointment with the perinatologist he was getting ready to clear me to be followed by my regular OB and they were discussed whether I could try for a VBAC. I had heard the baby's heartbeat two days prior at the OB/GYN, it was in the 140s. The perinatologist proceeded to do an ultrasound and I knew instantly there was a problem. I am a nurse and I could see that the heart was not beating correctly and that the rate was much too slow.

I will never forget the look on the perinatologist's face or the feeling of all of the life getting sucked out of the room. I was immediately sent across town the children's hospital to see a pediatric cardiologist. At that time they gave my baby the diagnosis of heart block. We enrolled in some research studies and were cared for by excellent and compassionate doctors and nurses. We couldn't have been happier with the medical care both myself and the baby received. We soon found out the heart block was third degree and that it was irreversible.

We were worried from the moment of diagnosis that the baby would not make it to term, but she remained strong. I delivered our lovely second daughter, June, by C-section in June of 2008. She spent a brief stint in the NICU for respiratory issues. Although her little heart beats as slowly as the high 40s and never climbs about about 80, she is thriving. Every fear we had has been set aside. She has a small PDA that will be closed in the cath lab this summer. Otherwise, she shows no signs of failure, maybe some slight cardiomyopathy. She has no physical or cognitive delays and probably no one but us would notice the little symptoms of her condition.

She continues to amaze her doctors at every appointment by how she's thriving. We are always prepared for the worst, but our Junebug has taught us to expect the best.