For two weeks, we convinced ourselves that everything was fine and shared the gender with our family. We even picked a name, Nicolette Danielle. Nicolette for me and Danielle after my sister and best friend. Even more interesting was the combined meaning of her name, Victory of the people and God is my Judge; Two very strong names for a baby that was fated to be stubborn and headstrong if she inherited any ounce of her parents. Finally, the doctor's office called to report an abnormality in the scan. I pushed for clarification. "There's something wrong with her brain." Our whole world changed. Nicolette was diagnosed with severe unilateral Hydrocephalus, a condition in which the brain cannot properly drain the Cerebral Spinal Fluid and thus, creates enlarge ventricles and increased inter cranial pressure. The condition is best described in Michelle Higgins blog (http://www.fetalhydrocephalus.com/hydro/Default.aspx). We were referred to Dr. Margaret O'Hara at Maternal Fetal Associates of Kansas. She turned out to be a compassionate, strong, knowledgeable and practical doctor who's knowledge and tactful delivery of Nicolette's condition paired with known statistics ending up giving us the strength to proceed with the pregnancy and meet Nicolette in October.
Nicolette's condition progressively worsened over time. Her measurements followed a bittersweet progression, bitter because they grew studiedly and sweet because the growth was predictable.
I have attached a table of venatical measurements. I'm including them because I figure, if you found this blog and you're not a family or friend, your unborn child received the same diagnosis. I want to caution you, ventricle measurement and head circumference do not predict outcome. Furthermore, Nic's Hydro is secondary to her Cyst, but hopefully, these measurements give you something to compare your child's measurements to and can give you some kind of peace.
At 24 weeks, we opted for a maternal-fetal MRI completed at Wesley Medical Hospital in Wichita, Kansas. Cevin and I went and ate at Cracker Barrel, a personal favorite. We promised each other we would do something fun and normal with each major doctor's visit. This helped over the course of the next 13 weeks, especially because the news regarding Nic's dx continued to get worse and worse. Back to the MRI, the process was grueling; my vomiting never went away. I had the reincarnation of nurse Rachet! I threw up repeatedly in the machine, and sat in it hoping the results would somehow help my daughter. After an hour, I needed the imagining. The results we did collect terrified the staff. We were told her brain was "incompatible with life" and "I'm so sorry; it would be best to get genetic counseling and try again later". To make matters worse, the tech told my husband I still had two hours, so while he went to get us sodas, I was told to abort my unborn child. My husband found me bailing uncontrollably and wondering around the hospital parking lot like a mad woman. This was the worse day.... But we carried on, and upon reviewing the results with Dr. O'Hara, I asked the best question we asked the entire pregnancy, "What would you do if this was YOUR child?" Her reply I honestly believed saved Nic's life again, and again, and again. She grabbed my hand, looked me straight in the eye, and said, "I'd go to Children's Mercy, and I wouldn't look back."
End of Pregnancy, Part I... (Nic is over her baby gym time)!
