Monday, March 10, 2014

HPE Awareness Week & Remembering Chloe's Diagnosis

Holoprosencephaly is a big, confusion, hard to say, medical term that in all my years I had never heard until we were pregnant with Chloe.   Holoprosencephaly (HPE, once known as arhinencephaly) is a cephalic disorder in which the prosencephalon (the forebrain of the embryo) fails to develop into two hemispheres.   In some cases it can be a genetically caused disorder, but in Chloe's case, and other babies, as many Dr's put to us "it was a lightening strike of bad luck".  Meaning there's no reason why her brain didn't develop properly, it just happened. 
I remember being angry, confused, and just all around pissed at the world when we found out something was wrong with our Chloe, and it took me a while to come to terms with the fact that our first daughter wouldn't be coming home with us. 
We first thought she had cysts on her brain at 16 wks, and we knew something was wrong, but it wasn't until we were around 18 wks when we saw one of the high risk Dr's that he gave us a more of an idea diagnosis of what Chloe could possibly have.  I remember that day being so mad, I thought we had done everything right.  I recall having to take Chris to work after the appt and just being so hurt, and mad at the world.  Why did something like this happen to us, and to our daughter.  I had been so angry for those 2 wks, that I think it was that afternoon that I was finally done feeling that way.  I remember texting Chris while he was at work and telling him I wanted to give her a name, I was done feeling angry about her condition, and I wanted to do everything we could to make the most of the time we had with her.  Even though we knew we would still have tough days, from that day forward we let it all go and just let God take everything.  Which I know we should of done from the beginning but when your put into a situation like ours, or any tough situation, it hard to just let it all go and not be angry in the beginning.   I think it was that same day that we decided to make this blog, which had def been therapeutic for us, and I pray helpful for others.  We went to Dallas at 20 wks, for the fetal MRI where Dr Twickler had given us the for sure diagnosis that is was HPE, and I remember her asking us what our Dr's thought Chloe could have, and she was very impressed with what information we knew.  She had determined that Chloe's brain didn't develop, or divide, she had a primitive brain, meaning a sack filled with spinal fluid, a little of her brain stem, and cerebellum had developed, but that was it.  All of her movements were reflexive movements due to the brain stem, Chloe didn't know she was making the movements. 
Chris: it, as was said numerous times, was very tough for us. The empty feeling we felt in our chests was just the tip of the iceberg. Also as was said, this blog really helped me realize a couple things. One thing that I have come to realize is that writing takes me to a calm place, a place where I forget my problems as I let it out, a happy place if you will. The other is that I actually enjoy writing now. I've never really had an urge to put my thoughts on paper, or online,  for the world to potentially see.
Recently I decided to remove my Chloe bracelet permanently. It oddly was almost as therapeutic as writing on this is. I wore that bracelet every single day, never took it off, since I put it on. It was me holding on to hope that maybe she would somehow defy reality and come home. I say down, rubbed the bracelet, and laid it around her urn. I'll forever have a piece of her with me and I'm okay with it now. I feel changed, I feel almost human again, I feel almost like I did 2 years ago.