I spoke to the genetic counselor yesterday morning. There is no concrete answers but the general consensus of every one she brought the case to is autosomal recessive polycystic kidney disease which is what they thought at the end. To get concrete there would have to be molecular testing which I assume is expensive and takes quite a long time.
In order for my Little M to have had such a severe case J and I both have to carry the polycystic kidney disease recessive gene, (hence the name). Which means every time we conceive there's a 1 in 4 chance our baby will get this. It is her opinion the early loss, between Little T and Little M was just a normal early miscarriage, (HA.) but she didn't have an opinion on whether Little T could have had this too. Little M was fine in my womb, he didn't have any issues other than he couldn't survive out of my body. Little T died all on his own, so it could have been something else completely.
There is no prevention, there is no early detection. All my blood tests and ultra sounds looked fabulous until around 18 weeks. Then the blood tests came back bad and it was discovered I no longer had amniotic fluid. Should we get knocked up the recommendation is to be sent to the high definition ultra sound office at around 11 weeks to see if the kidneys seem bright. For reals. Bright. And then decide if I want an amnio or whatever other awful tests they have available. Otherwise it's wait and see. I'd have to get around halfway through my pregnancy before finding out how the genes tumbled.
I'm really really struggling with this. 1 in 4. I'm just....sad. Yesterday I was mentally going over the odds, my wants, the strength of my relationships, every thing just pressing down on me. I mean honestly, how many babies can I kill before my face melts off and I turn into a screamy soul thing in the depths of hell like on Constantine? Metaphorically. As an atheist with Buddhist leanings I don't technically believe in hell. Although, if it meant I got to hang out with Gavin Rossdale....He was pretty whiny in that movie though.
I went to change the laundry, next to the loathsome Guest Room and I was overwhelmed with despair at the thought of never having another child. I went in to wake G from her nap and she said with a quizzical look on her face; "I'm having troubles waking up mama." and in that sweet moment I knew I want to keep trying.
I am not one of those girls who dreamed of being a mother her whole life. I was pretty adamant I was not a breeder. Until I met J, at which point I was.....fine with it I guess is how you describe it. 'It'd be nice' is how I thought. G changed all that. Of course she did. I enjoy my time with her to the fullest, I miss her when I go grocery shopping without her, I don't get overwhelmed about how much she needs me. This sounds judgmental to those who don't feel that way, and I promise it is not. I understand struggling with what you're doing and how you "should" feel, I don't think ill of those who desire or have to work, who need time away from their children. I'm jealous actually, at some point my kid will not need me as much and I will flounder. But right now I am lucky to have the support of my in laws damn near all the time, so even though J has been killing himself working I still get my hour of exercise every night. Between that, playdates, and naptime I'm feeling my needs are pretty balanced with hers. After the first hormone/post partum psychosis/sleep deprivation filled year, motherhood has made me very very happy.
At this moment, right now, I'm not wiling to give up my dream of having another child. I will do what I do best, and allow my new reality to infiltrate my being, and then shove it to the side to be staunchly ignored until circumstances force otherwise. Aka being pregnant. At which point I will have an anxiety attack lasting right around the entire duration of being pregnant. But for now LA LA LA I can't hear you!
Now I need your help. I am the shittiest family member ever, I admit to this, I don't talk about these things with them. I beat back any inquiries with FINE, I'M FINE. They have no idea about any of this and they deserve to know. So I'm emailing them. My dad, mom, sisters and grandparents, although I may leave out the still trying part because I still have trouble feeling like I deserve the right to try. My problem is the subject line. "Autopsy Results" seems.....heart attacky. So I need something that kind of prepares them for shitty blunt news but doesn't make them think I'm about to throw myself off a bridge. Any ideas?
My friend has decided to go Pollyanna on me and texted me; So there's a 75% chance it'll be fine? Which is a nice way to go I guess. So I've been daydreaming about my 3 perfect chance babies. I could get pregnant with triplets, deliver at 37ish weeks, we've got room, it'd be fine.
I have no trouble with reality right?
Subscribe to:
Post Comments (Atom)
is this the wrong time to suggest that you title the email "Don't Panic"?
ReplyDeletegod, i hope not.
Haha! Generally don't panic leads to panicking. But thanks. :)
Delete"good news, bad news"? 75% is a big majority. Not nearly big enough, but still majority.
ReplyDeleteFuck that recessive gene.
We'll all be holding our breath for your triplets.
Hahaha, thanks. :) wouldn't that be interesting?
DeleteYou're not killing babies!!!! If anyone suggested J was killing babies, you'd be (rightfully) upset. Don't give yourself crap you wouldn't tolerate anyone giving J. Really.
ReplyDelete1 in 4 isn't that horrible, and at least you have an answer. Not necessarily the best answer, but certainly not the worst.
I think Results would be sufficient.
Hmph. You are right of course.
DeleteResults is a good one.
Hmmm. When I have to send an email, well, I won't say "like that," because I haven't had to send an email "like that," but an email ... in that general ilk, I typically stick something like: Sad news -- [topic] in the subject line. So, you know, Sad news -- genetic anomaly (or issue, or something like that), and then, in the body (of the email) goes the detail. Or maybe "worrisome news" because, sure, 3/4 of the time, but ... still.
ReplyDeleteI'm sorry you're facing this. I don't know if you know Julia's blog at Here Be Hippogriffs (http://julia.typepad.com/) but she went through all sorts of trouble (understatement) as she and her husband tried to add to their family, because he (the husband) has a balanced translocation. Not to cut to the chase, but she has been pregnant 13 times and has 3 kids, and her youngest are twins, so -- you can do the math. In a weird sort of way she was one of those who helped me keep going when I was hoping to have a child because ... considering what she endured, surely I could keep trying (her twins are a year younger than my son, so doing the math, again, she *was* enduring when I was trying. Except for her oldest, whom she had before she knew all this stuff, every other pregnancy she had experienced had ended in miscarriage). So anyway, I don't know if you would find it helpful or not, but if you want a blog that details gentle persistence in the face of horrid happenings, Julia's is a good one.
(Her odds, by the way, were mathematically far worse than 1/4, but again, it really doesn't matter what the odds are, it's what your experiences are)
I will absolutely look into her blog, thank you.
DeleteAnd thank you for the subject ideas as well.
The title is from the last die hard movie!! Right?
ReplyDeleteIt is so extremely hard to think that there is still a chance that there could be a problem ... I understand "pollyanna's" view as our friends often do they try to lift us up and help but sometimes it hard to hear....I know every time I hear, oh next time you will - I want to slug that person in the face....but I say " yes next time...." hang in there I hope you get more answers ....
It is! I love me some Justin Long, even if it's whiny Die Hard Justin Long.
DeleteUsually I would absolutely agree with you, but this friend is magic so she is allowed her Pollyannaness.
I like the suggestion of Results. Or maybe "Moving Forward," which indicates you will be considering everything in the good and bad categories of the results, but with the intent to keep going rather than throw yourself off a bridge.
ReplyDeleteThe odds are... In your favor, yes. Decidedly so. And given what you've been through with T & M, it certainly seems like it must be time for thIngs to work out. But of course it's so different when you're talking babies and not black jack. The stakes could not be higher than the life of your child and that is absolutely daunting.
It's a beautiful tribute to G that you want to try again, and proof positive of your love for T and M that this is not an easy or uncomplicated decision. Wishing you the best of luck.
It does feel as though I've paid my dues, if only I was In Charge. :)
DeleteThank you.
I've had crappy pregnancies both times. One lived and one died, although I was told at 17 weeks to abort the one who lived because after very early pPROM it was thought she wouldn't live either. It was awful and I don't want to go through it again but...
ReplyDeleteNow that living baby is over a year old and we want another one. What to do? I kind of want to put my rose coloured glasses on and just hope everything will be fine.
Here's hoping your triplets arrive without incident.
My rose colored glasses may be vodka flavored and I wear them often. Reality and my desires are perpetually at odds.
DeleteGood luck to you as well.
I'm so sorry the news wasn't better, but at least you know. Are you both set on any children being genetically related? I don't mean that in a pushy "why don't you just adopt" way, just wondering if you had any other options. It would definitely be mind bending waiting so long to see if the dice rolled in your favor. Not sure about the email, but I doubt anyone will remember the title after they read the news. I really wish you had a way to fix this. You sound like a really great mom.
ReplyDeleteThe short not discussed it with my husband answer is sadly money related. As in we don't have much. Babies are expensive, but don't usually require a $20,000 down payment. I of course wouldn't dream of commenting on our future choices, but for now it's not an option.
DeleteThat sucks, I'm sorry. It has always made me so angry that something as profound as starting a family just comes down to money. What a fucked up world we live in.
DeleteWord.
DeleteI know Ive been MIA. I've been um... Busy freaking out and then giving birth and stuff... But I wanted to say that I am with your happy go positive friend of 75% chance of perfection... Especially since you know you want to try For another child. I know for me... I just didn't feel like I had a choice. I was driven. And the thing is... The desire has to outweigh the fear. I wish there was a better earlier way to find out. Sending you a giant hug and am also so glad you love being a mama.
ReplyDeleteGlad you stopped in, and I too don't feel I have much of a choice. Single minded is a good description. Thank you for the love.
DeleteI'm a big, big, big fan of the following two email subject titles: "Stuff" and "Hey!" It gives the reader that click-or-don't-click-I-couldn't-give-a-fuck idea, and I'm all over that shit.
ReplyDeleteSigh.
I'm so sorry you're going through this bullshit. People like you are the ones who should just bring babies home from the hospital by the bucketful. You love being a mama, and you're dedicating your life to doing it right.
Does it help that you have a few answers? Does it help to know it wasn't all just one big coincidence? I'd like to think that'd be a comfort, but I don't know.
You know, you always talk about your ability to put on that straight face and march straight through a situation without emoting all over the place. Maybe this is why. Maybe you were given that trait as, like, a side dish to the genetic thing that is fucking with you right now. I adore your "Oh well, fuck it, we're going to try to get another baby" mentality. You keep describing it as a short-sightedness. I prefer to call it "balls of steel" or just "determination."
You're not killing babies. People who kill babies don't take pictures and don't dedicate blog space and don't weep and have special necklaces. You're losing babies. And, hopefully soon, you're going to be making babies. Triplets. OMG, that'd be sweet. So effing sweet. You'd have to name them something really dorky, like "Curly, Moe and" fuck, what is the other one's name? Anyway, you get the point.
xx
I never dreamed of being a mother either. Though once I became pregnant, my life was centered around that very thought. And still is.
ReplyDeleteYour G never ceases to amaze me in her words. I miss B at the grocery store, too.
Not that stories help because we've all been on the crap side of things, but I have a friend who has a disorder as well-- she and her husband are recessive carriers and 25% of their babies would have it... their firstborn did. She died. Their second-born didn't. He lived.
When I found out she was pregnant, it scared the crap out of me for them. But at the same time, pregnancy is ALWAYS a gamble. Maybe more knowing your odds are that much greater to lose, but it's always a gamble. In my sick and twisted baby loss mother way, I almost know what to do when babies die now. Like that part doesn't scare me. It's knowing I'll have to live the rest of my life without them that crushes me. But do I feel it's worth the shot? Totally.
Life. It's something special, isn't it? Sheez.
You've probably already decided, but I would just title it something like "Pregnancy talk" or "Little M info". I don't know. It's all unfair.