Despite our perinatologist feeling very sure that the likely outcome for Baby A was grim I decided to make an appointment at the Fetal Diagnosis Center at CHOP. It took a few weeks but they were wonderful. Their reassurances that they could answer questions and help us figure out what to do gave us such peace. They coordinated and scheduled everything for me so I showed up very early in the morning for an all day appointment. First was a special MRI (at PENN) that would check the babies thoroughly. Then I had the highest level ultrasound available and it took TWO HOURS. Two hours for a woman 22 weeks pregnant with twins is a long time to lie on your back... let me tell you. ;D We then had an echo of their hearts, a full physical to check my vitals, blood work and a genetic screen.
After about 8 hours of testing we met with the Fetal Diagnosis team. My Mom, Brian and I entered a conference room that seated about 5 or 6 doctors (I can't really remember). I don;t think I have ever felt more anxiety in my whole life. I simultaneously wanted to run out as fast as my pregnant body could carry me but I also wanted to jump in my chair and scream WHAT THE HELL IS WRONG WITH MY BABY? I opted to fake calm and sit smiling while all of these people introduced themselves. I only remember one of their names, Dr. Johnson, the head of the team. I am not sure that I even listened to anyone else's name.
Dr. Johnson was a soft spoken man with grey hair and a lovely smile. He had a way of putting me at ease when he spoke. He began by telling us that Baby B (Grace) indeed had only one kidney. They talked about the girls positions, confirmed they were both girls and then we got into the thick of it. He told us that she had a ventriculomegaly (enlarged ventricles), some poorly formed tissue in her corpus callosum and cerebellum and fluid in her frontal lobe. None of it was surprising. What he could tell us was that the ventriculomegaly was measuring better than it had just three weeks ago. An amazing sign. I smiled so big my face hurt. There was a chance this would correct itself and then we would only have these other minor structural issues to contend with. This was amazing news.
For the remainder of my pregnancy things went pretty good. I had some health issues related to carrying twins but nothing awful. On June 20th in 2007 the girls were born at 37 weeks. Abby was tiny at 4 pounds and 14 ounces (compared with her twin who was 5 pounds 14 ounces). Because her brain issues seemed to be improving we were prepping for healthy babies. Much to our dismay Abby was way smaller than expected and did not act like a 37 weeker should. I guess this was the foreshadowing of what was to come.