"It just sucks. It just happened. There was no reason. We did the best we could. There's nothing more we could have done."
This is what Brian and I have been telling ourselves over the last few months. After our initial conversation with doctors, and getting a lot of apologies and shrugged shoulders, we began to try to accept our not knowing.
We just lost her. Maybe it was the polyps. Maybe it was an infection. Maybe it just happened. It just happened, nobody knows why. We'll do better next time.
I've found that putting aside intense inquisition into why my preterm labor occurred, I've been able to grieve... I don't know... more intensely? Effectively? With less fear and recrimination towards myself, my heart opens more. I can feel my love for my daughter more fully, alongside all the pain. I feel her closer, and I love her as she is - gone.
In the latest round of doctor visits and medical tests, I've never once asked the person across the desk if they know why I lost my baby. I just want to know how to reduce my risks for next time.
Those two threads can't be untwined, though. My passed baby, my future baby. My body then, my body now. And the list of things wrong with me is growing. So the list of things that could have caused our loss is growing. It's impossible not to wonder, not to feel angry and hopeless.
* chronic bleeding from cervical/endometrial polyps (risks to implantation, infection risk, irritable uterus risk)
* irregular, fluffy, polypoid uterine lining (risks to implantation)
* either septate uterus (miscarriage risk) or
* bicornuate uterus (risk for restricted growth, preterm labor, complicated delivery)
* positive test for antiphospholipid antibodies (risk of miscarriage, poor growth, placental abruption)
* possible weakened cervix (risk for PROM)
* history of preterm labor (risk for more preterm labor)
* and because I'm feeling it today: age 38 (increased risk of miscarriage, congenital defects)
I know that women facing much worse than this have gone on to attempt pregnancies and have healthy children. But when I look at this today, it just seems insane. It seems like a miracle that we even got to 20 weeks.
No doctor has yet looked at me and said that pregnancy is too risky. I know that my RE considers me a mild case. But I feel like a death trap. I can't imagine a baby inside of me making it to full term.
I don't know what will happen next. The APS stuff is new and means I can't take the estrogen-containing BCPs I was supposed to start this week so my RE can take out the polyps and maybe the septum also. There may be very little that anyone can do for me. Maybe Brian and I will just have to look at that list and decide yes or no. Terrifying.
More tests are coming. A retest of my blood for the anticardiolipin antibodies. Blood test for thyroid. Ultrasound to make sure I have both of my kidneys (!). They are talking about exploratory laproscopic surgery to determine the shape of my uterus, since my MRI results are inconclusive (see what I mean?). But I expect the testing to just complicate things even more.
Part of me wants to pull the plug - not think about it any more, screw this whole journey, if that's what it is. And part of me wants to stop TTA'ing and just get knocked up already.
I am free to do so. There's really no evidence that I need treatment for any of the above, or that any of those treatments actually work. As always, for me and for everyone else, delivery of a live, healthy baby is a crapshoot. The odds are in my favor. But what do the odds mean anymore?
Right now, today, the APS is worrying me the most. This site about APS was not especially helpful in my state of freaked-out-ness. Apparently I now have a chronic, life-threatening disease, and I need to get a MedicAlert bracelet, hire a therapist, explain to my family that I will not be able to do all the things I used to do, buy a t-shirt declaring my illness, and accept that I will never have a normal pregnancy. But all the doctor who ordered the test said was to take baby aspirin and stay off the BCPs. WTF?
I have always thought of myself as a healthy person. Today I can't imagine inviting a tiny, helpless person to grow inside of me. I'm so sad.
Wednesday, September 9
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4 comments:
I'm so sad for you, but I don't want you to give up yet either. This will be so hard for by the sounds of it, but we're all here for you.
xo
Oh Jenni. I'm sad to hear about all this. I'm sorry to hear that the MRI was inconclusive and that you went through that experience and still don't really have an answer.
'Women with much worse than this have gone on to attempt pregnancies and have healthy children.' They have. It is a crapshoot, a lottery. The odds don't mean anything really, all that matters is what happens to you and your children. Try and hold on to some hope for yourself. xo
I stumbled on your blog through a comment you left on Donna's blog. Our journeys are very different (I lost my daughter last year to early onset pre-e and HELLP), but your fears sound so familiar. Once you've been on the wrong side of statistics it's hard to imagine coming out of it positively. Know you're not alone- many of us have been there!
I'm so sorry for what you are going through. I think it is amazing that we walk around like a ticking time bomb until we have a pregnancy complication and then all of a sudden find out so much about ourselves. I have a couple of blood clotting genetic mutation issues and I feel very much the same way as you do. I now see every pregnancy for me as a 50-50 shot. Either the baby makes it or it doesn't. Forget all the other odds. For me, it's 50-50. People don't get that. People want you to think "positively" but how bout a little reality here.
I wish you a lot of luck. I know it's possible. Greater miracles have happened. It's time for you to have yours. I don't know why we are chosen to have to experience pain, but the only thing that can make it worth it is to have the miracle on the other side...
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