Saturday, October 27, 2018

More Waiting.

Waiting.

And more waiting.

This has seemed to be the tune of Alex here's current state the past couple of weeks.  And, I'm not going to lie, it is incredibly hard.  Because what do you do when you wait?!  You think.  Your mind races.  You play out possible scenarios of what you are waiting for over and over again and you feel borderline crazy because your thoughts are all-consuming and it literally does not leave your mind for a second.  You find things to distract you (like your wild and crazy big kids or the 50+ photoshoots you have booked between now and mid-December (holy cats.)) but they are just temporary, cause your mind always goes back to the one thing you cannot get out of your head and one thing that literally has been consuming your life for the past 16 days.

Last week we got the initial amnio results that come out about 24 hours after the amnio...and then we had to wait another week for the microarray analysis and then another week after that for the full chromosomal panel/gene picture.  I got a call from our genetics counselor Thursday morning and I thought she was calling with the microarray results but nope (fake out!) she just wanted to chit chat about some things...so, more waiting.  She said we should get the results later that day or Friday so expect a call back.  Welp, Thursday came and went and then it was Friday.  Waiting.is.torture.

Friday morning, just as I was rolling into a newborn session, I got a call from our MFM office with the microarray analysis results...completely normal.  Nothing off or concerning with that test; looks just like a healthy baby's should look.  I'm not going to lie, I was shocked -- because with everything our little Clark has going on, surely it had to be related to a chromosomal or genetic issue...but every test result we've gotten back thus far has negated that.  We still had to wait for the full panel to come out next week (which could show something that the microarray did not show since it's literally a picture of his 46 chromosomes so visually can see if there are any issues (like if part of one attached to another...which wouldn't show up on the earlier tests), but again, no answers...more waiting.  My head was spinning -- I text Mike immediately the results and was like WHAT IS CAUSE THESE PROBLEMS WITH OUR LITTLE BOY?!?!  He didn't have an answer either and was probably just as frustrated as I was.

Literally seeing on the ultrasound screen all of Clark's issues and not having a cause for them or reason for why they are happening is terrifying -- and back to my mind racing.  My medical knowledge is decent but limited to my ER watching days so I do admit I resort to reading posts in Facebook groups, messaging friends who have had similar situations happen with their kiddo, or Googling...because to me, it does help.  Yes, I've read some really devastating things, but also some really miraculous things that do give me a bit of hope in our situation, despite everyone thus far telling me he's got a fatal prognosis -- which both of these things have contributed to that mind racing effect and a bazillion 'what ifs' that race through my head, but the good what ifs and the not so good what ifs (is it any surprise to anyone that I'm not sleeping??!  That I feel like an exhausted zombie most days??!?!). 

I did text my own OB the results (because it takes days for the results to officially get sent to her via fax and snail mail medical services -- which, side note, WE ARE IN 2018!!! HOW IS EVERYTHING NOT DIGITALLY ACCESSIBLE THROUGH ONE SYSTEM?!?!??!) and she asked if the infectious panel was back yet -- not yet.  Although the ones they've drawn on me have all come back negative so I'm thinking the ones on Clark will mimic that when they come back too.  Since I had been doing my own research, I asked her about doing a fetal echo -- they have been able to see the majority of Clark's heart and there aren't any noticeable defects or issues...but part of his heart (like his aorta) hasn't been able to be seen because of all of the fluid surrounding it.  She said our high risk OB can definitely order it or she can too -- usually it's done around 24 weeks.  Not that I think he might have a heart defect, but might as well check everything out!?  And could all of this fluid and skin edema/swelling and hydrops and cystic hygromas and clubbed feet and clenched hands and everything this sweet little boy has could all be related to a heart condition?  Or another condition with one of his organs that 'appears' normal on the ultrasound but really isn't??!  Is this all just bad bad bad luck?  I don't know.  Truly, I don't know -- just ideas running through my head and wanting to checkout anything we possibly can now...because who knows, maybe we could find something out that could help him?!  I know they tell us there's nothing that can be done for what he's got (minus waiting...and waiting...) but maybe?!

Remember how I said I just felt something was 'off' this pregnancy, especially as my 19 week ultrasound approached?! I feel that way again, but about the cause and getting answers.  I feel like we may just be in this waiting and guessing holding pattern for a while and may not get any concrete answers or reasons for any of this until much later after Clark's born...and that is sooooo hard for impatient Alex here to swallow...because it just keeps my mind racing and the what ifs flowing.  And, it's impossible to stop.  I've tried, I can't stop thinking about everything -- and there are soooooo many other things too that have big fat ? next to them too which is nerve-wracking and, to be completely honest, terrifying.  I can't get Clark's impending delivery out of my head nor the after-effects that I know are to come.  And then, all of that aside, the 'future children' question -- is this even an option for us?  Do we want more kids?  Can we even have more kids?!  Will this happen again??!! 


The genetics counselor asked how I am mentally doing, because I sounded calm on the phone.  HA!  I literally laughed out loud at her -- I was like, "Welp, you can only cry so many hours of the day and at some point, you have to put your clothes on and get out there."  I mean, I *think* I'm doing okay?!  Writing helps.  Talking about it (when I want to) helps.  But there are things that set me off and it sends me into a sad, depressed state.  I've learned over the past 2+ weeks to try and avoid these things, but also have learned that IT IS OKAY to cry.  It's okay to be upset and angry and let my emotions out because dammit, it sure is not healthy to keep them bottled up and just keep avoiding them...because at some point they're going to boil over and explode probably greater than if I'd just have let them out when they crept up in the first place.

I'm going to be honest, I've been avoiding nearly everything I don't 'have' to do.  If I didn't have my scheduled photoshoots (which provide an excellent distraction, because I do freaking love taking pictures and it is therapeutic for me right now to continue to do that...plus, I have let all of my upcoming sessions know about what's going on so they know, which actually has been great because it's opened up some wonderful convos with them about similar experiences but also for others to not ask about 'how this baby is doing' as they may have innocently done at their session) and kid pickups and such, I'd probably never leave my couch.  I did go to Target last week (strategically on a weekday morning when I knew it wouldn't be too crowded) but DREADED IT -- I was so fearful of someone asking me how soon this baby is due (cause I am huge...measuring at 32 weeks at just 21 weeks) and what not.  I AM NOT ashamed of Clark man or that I am pregnant with this sweet little boy, I am just scared of the lingering emotions that seemingly can be set off to explode at any little instance and bursting into tears trying to answer this well-intentioned but unknowing person asking me about my baby.  So yeah, public places I'm dreading (because, as I've said before, why does a pregnant belly make it okay for anyone to unleash any uncensored question about said pregnant belly they want to ask?!?!?) going to and really have limited it.  We have so much planned coming up (Halloween parties and girls' weekend and dinner dates and such) and honestly, as much as I know it would be a good distraction to go, I am dreading it.  I'm just in no mood to festivate.  So friends, family, if you're reading this and I bail on something we had planned, just realize it's me, not you.


Welp this post was a gigantic rambling of word graffiti with punctuation...but it feels good to get it down. To get it out, to put on paper (digital paper??!) what's been zooming through my head.  Because maybe someone else can relate?!  Or maybe someone else is going through this but has it all bottled up and is seeing that it's okay to talk about it (or write about it) and is not something they need to be ashamed of or hide.  Bad things happen, shitty things happen and people don't talk about them much.  Why is that?!  Do we have to have this image (especially online) that everything is perfect and if something not so perfect comes along we hide it and pretend it doesn't happen?!  Perhaps.  But I feel like that's not real life -- and the real life things, even the horrible ones that take us places we never thought we'd be experiencing, NEED to be talked about.  They need to be shared and discussed and heck, even celebrated.  Because as not so great as things appear to be going with our sweet Clark, I am incredibly thankful this boy chose me to be his mama...to tell his story.  He's teaching me things I never knew I needed lessons in (cough cough, waiting and patience being two huge ones!) and hopefully touching others as well as I continue to share his story and this journey we are on.

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