research

After Brian and I had a tearful discussion a few nights ago, we finally decided to share this blog with his extended family.  It was something we had to pray and work through as it would make our worries, concerns and fears so fresh again in addition to opening us up for criticism from anyone who could be offended by our sharing.   It’s been a hard to process the past few days.  If this is the first you have heard about our little William, at our 20 week ultrasound, he was diagnosed with having two Choroid Plexus Cysts on his brain.  The short of it is the cysts themselves are normally not harmful, but they are a soft marker to certain chromosome abnormalities ie Down Syndrome or Edwards Syndrome.   I gotta say, word travels fast.  In 48 hours, from sharing this with a hand full of people, I had over 400 hits on this blog which is crazy… and kind of leads to more anxiety for judgment.  Thankfully, we received some very encouraging emails or messages from his cousins and aunt.  I also have gotten so many others who have sent emails or notes of concern.  It’s been somewhat of a relief.  Thank you to those who have been so kind to us regarding the situation.  It’s refreshing to have a few “safe” places to voice our concerns and tears knowing we will be loved.  At this point, it is hardly a secret and since Brian's mom and other people we wanted to be the first to tell now know, we don’t care who knows. 
In my relationship with Brian, he is the data guy.  Whenever there is an ailment or health concern, he is all over the internet or reading books educating himself as much as possible.  Depending on the situation, I am less likely as I worry so much more… even if it’s about politics or the climate, I’ll lose sleep.  But since it has been all over the news that Rick Santorum’s daughter has Trisomy 18 (T18) or Edwards Syndrome, it really sparked my curiosity to read a little about it since I had never heard of it till I found out our son was at risk.  It’s horrible.  On every web site I looked at, CPC pictures and information was listed as a symptom of Edwards Syndrome.  In fact, it was associated more with T18 then Down syndrome, which to be honest would be a better situation then Edwards Syndrome. It was very discouraging and honestly I think I almost hyperventilated.  Also, I read that it is almost always standard practice that any ultrasound with a CPC diagnosis will immediately get a level 2 ultrasound, which our doctor didn’t order.  There has been one other woman that I know who’s son was diagnosed with CPC and had high level ultrasounds almost every 2 weeks in addition to other tests to ensure there was no other concern.  Our doctor isn’t hardly doing anything… it’s kind of frustrating.  The doctor in the practice I go to that I love is out on personal leave, so I have been seeing this other woman that is ok… but she hasn’t even had a baby so the credibility of her very black and white, legalistic view point kind of lacks a bed side manor in my opinion.  She even laughed at me discrediting my words when I mentioned I felt William’s flutters of movement in my first trimester telling me that it was just gas and I probably didn’t actual feel him move till well into my second trimester.  Not to be a total bitch, but this is my third baby, and I might not have a medical degree, but I know what it feels like when my baby’s kick, roll over and move in my body.  I wanted to walk out of the office and tell her to call me after she has given birth a few times, then we’ll do business…  Thankfully, she is leaving in May, so perhaps my favorite doctor will come back from leave or they will replace her with another woman who is just as great. 
Anyway, I have had a hard time with depression and anxiety for a while now.  Now I’m questioning how much I should be the annoying patient to push for further treatment.  In discussion last night, my very level headed husband asked what good it would do though.  Whether it did, did not confirm, or just left us with more questions regarding Liam’s prognosis, we still weren’t going to terminate his sweet life, which amazingly enough I have about 10 more days to do in the state of Ohio.  But I guess I just want to know.. which won’t change the concern, pain, how much I cry or most important, how much I love him. 
So if you are reading this for the first time, I hope us expressing our concerns is not offensive.  I admit I’m still leery about going around people who haven’t acknowledged they know wondering what they are thinking.  The entire situation is difficult and awkward.  I think I kind of liked it that no one hardly knew for a while because I feel like I don’t know how to respond now just as I think maybe others don’t know how to respond to me.  I think it’s easier to be a recluse and stay home with my boys because I don’t know how to process it all.  I also don’t want to cry in front of others so I don’t make them feel uncomfortable and well as myself, which I know I could happen. 
So this is where I’m at right now.  I don’t have much to say except I’m thankful for the friends and family who have been so great. 
I’m sure I’ll write again soon or at least after our next ultrasound.  If you are interested in reading our first blog regarding the diagnosis, click here.