On the first week of December I had an appointment with the Pediatric Neurologist, had another follow up ultrasound, and had to meet with the Neonatologist. --> At this point the novelty of seeing my baby via ultrasound has already worn off.
As I wait to have my name called to go inside and meet with the neurologist I looked around me. I was surrounded by children with special needs. I cried. As I sat there crying all I was thinking about was that my daughter could be like anyone of these kids. I was not ready for that... I may be a special education teacher, but as a parent I was not ready for that.
We met with the neurologist and he showed us pictures of the scans. He reconfirmed the presence of the brain cysts and the partial agenesis of the corpus callosum. He then added that my daughter has an enlarged cisterna magna. In my head I was thinking, 'What the heck is a cisterna magna? What does it mean if it is enlarged?". I then started crying... I remember how the neurologist was trying not to look my way as he continued to discuss brain stuff and throwing all these brain jargon that I didn't understand... I wasn't really listening anymore.
In between sobs and trying to get my composure back I asked the doctor what the prognosis was or the the outlook... he says he does not know. I asked him what the treatment plan was.... he says that nobody really operates to take out cysts in the brain. If my daughter has excess brain fluid a shunt can be placed to drain it, but at this point he does not really know what the treatment plan was medically. But he did say that there was early intervention and therapy and special education. I already am aware of such things... but I never imagined having to be in the receiving end of those services.
After the Neurologist appointment I had an ultrasound. I was curious about their approximation of my baby's weight. Ever since I took a leave from work I made sure I got enough rest and ate enough. My goal was to have the baby weigh at least 5lbs at birth. I figured that it has been three weeks since i was told that the baby was 3 and 1/2 lbs... I was hoping that she gained a significant amount of weight since that time.
Same old poking and prodding during the ultrasound and when I asked for their estimated weight, the doctor said that the baby is only about 4lbs. He then added that my baby has severe Intra Uterine Growth Restriction (IUGR.. at this point i was not aware that it is one of the early signs for WHS). He checked my placenta to see if the baby was not getting enough nutrients, but there was nothing wrong with my placental function. I can sense the concern in his demeanor. He then said that I might be scheduled for an induced delivery or a C-Section so they can get the baby out and figure out what was wrong (she was breeched.. if she turns they will induce labor, if not they will perform a C section).
I then sat with the OB and the Neonatologist that afternoon and we started discussing birth plans. They toured us in the NICU, discussed how to check in and determined that the big day for delivery is on the 9th of December.
On the way home that night I felt what I think was an adrenaline rush... I was thinking "Okay, let's already get this baby out to finally figure out what's going on, and to finally get this over and done with.
Little did I know that there is no "getting over and being done with it".... not this time. My journey has begun.