Like me, you've probably never heard about Holoprosencephaly until Archer came along and rocked your world, or maybe he just tossed a pebble in your serenity pond - either way... rude. I know that mine was thoroughly rocked, shaken and flipped around with his diagnosis. I mean, really... why not just put it into the blender and Set to liquefy!? That's just about how I feel now-a-days.
For all you uneducated people out there (please know I am totally just joking around here) there is an amazing website called Families for HoPE, Inc. that is full of oodles and oodles of information for you. If you plan on sticking around for very long, you might want to consider hopping on over there and taking a little look see, esp. in the medical info (esp. look at What is HPE?) It's pretty interesting stuff. I think I've already told you that our baby boy here has what's called: Semi-Lobar HPE (at least that's what Dr. R thinks). It seems that Archer is already beating the odds, so to speak (we're already 27 weeks!!!). I'm just hoping that he'll be among that 3% that make it to birth, and if we get 6 months to share with Archer after that then I will feel truly blessed.
You sweethearts are always asking me what you can do to help and my only reply is: please keep us in your prayers. That is what we need truly need right now. Maybe after he is born there will be something else... but for now prayers (and your love and suppport) are all we need.
Lately, I've been reading blogs dedicated to the lives of babies and their families that have dealt with and are currently dealing with HPE and it feels good to know that I am not alone. There are so many others out there that are going through and have gone through all this craziness that is HPE. But, honestly I don't know if it does me any good to read these blogs or if it scares me more to see what I could be facing over the next 'who-knows-how-long'. For me, the unknown is so so so incredibly scary. I worry about it ALL the time. And all this worrying I'm doing about the unknown future does me NO good. There isn't anything that I can do about it right now, and all it gives me is a headache, red eyes, a runny nose and do I see an ulcer in my future?! So, tell me... how do I spend the next 10 weeks NOT worrying? Seriously, I need an answer 'cause I've got nothin'.