Thursday, October 18, 2018

Post Amnio Update

I thought I'd pop on and give a bit of an update after we got our initial amnio results back today.


We had our amniocentesis yesterday morning and were told we'd get the initial results today -- and these would just be the results of trisomy 13, 18, 21 and the sex genes.  Truly, after talking to the docs last week and this week and having another ultrasound yesterday, I was thinking our little Clark has Trisomy 18.  It all seemed to line up: clubbed feet, clenched hands, suspected heart defect, and severe hydrops fetalis (swelling).


This was a snap from Clark's ultrasound yesterday -- the yellow is all fluid.  Poor little fella has so much swelling in and on him, both inside and out.  This is the real major concern for us and the docs is alllllll of this swelling and the intense pressure it's putting on his heart, which we are told is why he's in heart failure.  His bladder was hard to be seen, which indicates he's not outputting much.  It's just so hard to see him like that all swollen like a little marshmallow and nothing we can do for him right now.

On the ultrasound yesterday we did see him kick!  Something we didn't see him do AT ALL last week so that was just wonderful to see.  And I'm optimistic he is kicking in there and hopefully I'll be able to feel his kicks (and Mike too!!) through my thick anterior placenta soon too.  I would so love that.


As far as the actual amnio went, truly I didn't feel ANYTHING.  I circled in white where they went through close to my belly button (and stupid college decision of getting my belly button pierced) and it was maybe a minute and they were done.  Super easy (for me at least) because truly I didn't feel it at all...like nada.  And, knock on wood, haven't had any side effects or anything afterwards.

So we knew we had a good day to wait for the initial results, which I was really suspecting Trisomy 18.  However, around 1pm today the genetics counselor called and said that the initial amnio results and I was legit shocked when she said they were all clear: no Trisomy 13, 18, or 21.  They now send off the full genetics panel on Monday and we don't get those results until next Thursday or Friday...so more waiting.  And truly, it's awful.  PURE TORTURE.  We were told last week that an amnio wouldn't change this little guy's prognosis (which we know, but we wanted to know what was the cause behind this if we could) because of his other issues which are the things that are so severe -- the edema (swelling) hydrops are wide-spread and putting tons of strain on his heart are the main things.  There are other little things that don't see life-threatening but to me (clubbed feet, clenched hands) do suggest perhaps some chromosomal disorder?! I just don't know, I'm just going off of my limited medical knowledge and speculating.  We were told as well that we maybe had 2-3 weeks left with our little guy, which gosh I hope they are wrong, which also I can't get that out of my brain and has led to my impatiences and urgency to find out as much as we can about our sweet boy.  It truly is the most difficult and trying this I've ever been through...and I know Mike would probably wholeheartedly agree too.  It just sucks.

Where do we go from here?! I'm not sure...we have a meeting tomorrow with the high risk OB to hopefully give us a bit more guidance and insight into what's going on and what's to come.  I have a million questions in a note on my phone to make sure to go over with him.  Cause I do freaking love my OB but this isn't her area, so I appreciate her support and having another wonderful OB I'm able to get into to talk to.

Truly, the outpouring of love and support -- from everything to text messages and emails to phone calls and random drop ins and surprise goodies and gift cards and meals -- has just been incredible.  Truly it is helping and I don't think I would be in the state of mind I am right now if I was keeping all of this bottled in.  It feels good to write it out and share because I can literally feel the love and support from our friends, family, and complete strangers (I do love social media and the internet SO MUCH!).  Our little Clark man is SO LOVED by so many and has already made such an impact on our lives and the lives of others.  I'm trying to savor each and every day we get with our sweet boy -- documenting his life inside of me until we can meet him face to face, whenever that may be.

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