January 25, 2011

i wake up at 3am. i cant sleep. the words NUCHAL TRANSLUCENCY repeat in my mind. i get on the internet and look for every story i can find about thick nuchal translucency. i find as many good as bad. but, if anything, i just have more questions.

we get an appt to see Dr. Fuller at 950am. we stop by the 11th floor to pick up a copy of the report from the night before. in the time it took to go from 11th to the 14th floor, i was able to google a phrase that is on the report: cystic hygroma. before Dr. Fuller enters the room, i read "1% of babies are found to have cystic hygroma and not many survive to term." she enters. the look on her face confirms what i've just read on my phone. all i ask her, "it's not good, is it?" she shakes her head "no." i break down. the next 5 minutes are spent trying to make sense out of what is going on. she explains that it is not our fault. it's completely random. she is sorry. she didnt think this would have any effect on us trying to have another baby. she even stated that maybe "you knew in your heart" because of the fear i'd had in the few months of knowing i was pregnant. she gave us a card and sent us downstairs to the perinatal center to schedule an appt with a genetic counselor.

we walk down the LONG hallway of our dr's office. passing by, what i seemed to think was an abnormal number of healthy, pregnant women. women who had the "glow." here i am, with a pooch, but i am dark. the light has been shut off from my glow. i'd just been told that i'd never meet my baby. they were lucky. i was not.

we went to the 7th floor. i cannot control my emotions. i cannot even speak well enough for the receptionist to understand my name. anthony helps the lady with her questions. another woman comes out to chat with us. she begins to tear up at that site of me. she gets us in that day. we have an appt with a genetic counselor at 1245pm. and, i still really dont understand what this all means...

1245pm
we meet sandy. very kind-hearted, soft-spoken lady. she goes through our family history. nothing to really speak to. we have a healthy 4 year old. hmmmm. so, she gives us a small biology lesson of chromosomes and what i bring, what anthony brings...blah blah blah...we start asking questions. "what are the chances that our baby will survive?" she couldnt give us an answer. heck, i would have been happy with a 5% chance. but, she couldnt give us anything concrete. all she could give us was that our baby had a 50% chance of chromosomal abnormality or a 50% chance of some other birth defect. we ask about the birth defect category. there isnt really an answer for that either. it seems, it's a catch all for anything that may be wrong with the baby. thanks?

next steps were to try and find out about chromosome problems. to do that, i would have a CVS test (pretty much, a early-stage amnio). the answers to this test would tell us if the baby has any chromosomal problem. ok. sign me up.

now, the big question is, if it's not a chromosome problem, how do we find out what the problem is...well, you have to wait. we cannot really take a good look at the baby's heart until 18-19 weeks.

as time went by in our meeting, our counselor notified us that she suspected a heart problem. based on another finding that we'd ignored in the U/S results. apparently, along with a cystic hygroma, our baby had "soft tissue edema." she explained that this was fluid in the baby's chest. in her opinion, this finding was the most devastating part of the finding. great. we have 2 things going against us now. we hadnt researched about edema. we didnt know what questions to ask. so, we walked out of her office with a little more confusion and even more reason to believe that our baby was dying.