Entropy and Loss

I've been avoiding this post. Heck, I've even had this written for several days and left it unpublished. More on that in a minute. Two and a half weeks ago, we went to see the MFM and start testing. Let me start out by saying that the appointment was wonderful. We saw a female doctor in the practice. She was very empathetic, never making us feel rushed while thoroughly answering every question we threw at her (and there were quite a few). She agreed to a test I asked about (TSH) and then suggested another on my list (structural exam) before I had a chance to even bring it up. We were placed in a consultation room that had a comfortable couch and chair, television, lamps, and bookshelves. With the exception of the obstetric and gynecological journals and textbooks on the shelves, there was no indication that we were in an ob/gyn/MFM office. No smiling/sleeping babies, no belly shots of pregnant women, no magazines telling you how to have your perfect pregnancy now. It was neutral and refreshing.

I think that, as a whole, we humans don't do well with entropy. We seem to constantly try to reign in the chaos, to make sense of the world around us and place things into categories. I think we all like some degree of order, structure, guidelines, predictability, etc. Often, we assign reasons or backstory to a situation so that it makes sense to us. Randomness scares us. Chaos is the stuff of nightmares. So, we assign people to categories or roles so that they fit our notions of structure. We invent scenarios to make sense out of what may seem random. Sadly, we don't always do this in the nicest way. That guy who tailgated me, cut me off, and zoomed off way over the speed limit is an impatient jerk rather than someone who might be on his way to his first or last time seeing a loved one. The mother with the screaming kid at the store is someone who doesn't discipline her child effectively, rather than someone who didn't get a lot of sleep because her child has night terrors...and the child is a spoiled brat rather than a kid who is tired and anxious because of terrifying dreams. Losing my job was really only the catalyst to finding my dream job and, in retrospect, was the best thing that could have happened. It was worth the scary, shitty, anxious time of having no job and very little money to find the happiness I have now. Categories, roles, backstory...even imagined or assigned, these things help us make sense of the world around us and help us assign meaning.

How does these two paragraphs relate? Well, those of you who know me know that I have a touch of Obsessive/Compulsive Personality Disorder. Not enough to be diagnosed, but enough to be a bit crazier than most people. As much as humans love order, I REALLY love order. Chaos makes me

anxious. I like things in neat rows (not literally...I don't line up pencils...usually). I like categories and data and numbers. I like it when things make sense. I like predictability, stability, and routine. I try to avoid the categorizations I talked about in the previous paragraph, but I do it, too. We all do. So here's my first confession...I'm scared senseless that my losses don't have order, don't fit into neat categories, that the data won't match up. I'm scared because not finding a reason for the losses leaves them without a category, makes them random. I don't do well with random. In a way, I don't believe in random. But if there isn't a reason medical science can find, then I don't know what to do. I don't know how to assign meaning to my losses, to my babies, if the only category for their deaths is "random" or "bad luck."

Here is confession number two. All of the blood tests with the exception of the genetic tests have come back. All of them are within normal ranges, so far as I can tell. We haven't talked to the doctor yet, but through the miracle of electronic health records, I have seen every test result. While this means there isn't anything "unfixable" wrong with me, it also means that our only chance of finding a "reason" for the losses is if there is something genetic or structural wrong. Those are much more serious and more likely to be "unfixable" (though some things are avoidable or can be worked around). So while there was a sense of relief every time I would look at the results and see them within normal ranges or "no mutation found," there was a sense of disappointment, too. 

It seems beyond fathomable that 75% of my pregnancies have ended in death, but there is no medical reason. I can't understand how I'm supposed to find hope enough to keep trying, hope that I'll ever hold another biological child if 75% of my pregnancies end in unexplained death. Those are really, really terrible odds. Not the worst, but pretty darn bad. Knowing that there is a 75% chance that a future pregnancy will end in death, is it irresponsible to keep trying? Is it cruel to subject babies to those kinds of odds if I get pregnant again? I don't worry about myself or J. We want to keep trying. We are not at the point that we cannot take having the hope dashed again, that the risk is not worth the reward. But I wonder still. I don't have good answers to the questions. There aren't any. All I can say to anyone else facing them is that you have to do the best you can with what you have. Right now, if there is no "reason," we are willing to take the chance on another pregnancy. If that baby dies, I don't know what we'll do, if we'll keep trying. Eventually, there comes a point where people simply cannot keep trying. We'll know when we get there and that choice isn't one anyone else can, or should, make for us. Thankfully, we are surrounded by loving people who support us and our choices. 

This part of the road is particularly agonizing as we try to find order and meaning in the midst of unyielding chaos and questions. But still, we stay on the path. Sometimes staggering beneath the weight of it all, sometimes bearing it with more grace and dignity, but always forward. Even when we seem to be taking a step back, it is still a step that influences our journey forward. 

What to Expect When You're Testing

One week from now, I will (hopefully) be back at the high risk doctor with J for our testing. While this is not the topic of the blog post, a few people have asked, so I thought I'd share what tests the doctor plans to order. We'll both be doing a genetic karyotype to ensure neither of us is carrying a genetic disorder that could cause miscarriages. The rest of the tests are just for me, lucky girl that I am. They'll run an Antinuclear Antibody test to check for autoimmune disorders; MTHFR, which is a genetic mutation that leads to clotting disorders; Factor V Leiden thrombophilia, another genetic disorder that leads to problems with clotting; Proteins S and C levels, which are associated with excessive clotting; prothrombin/INR time tests, which look at how long it takes my blood to clot; and finally, homocysteine levels, which is associated with B12/Folic Acid deficiencies and clotting problems. I am also going to ask for a thyroid panel while we are there...as well as anything else they can/will do. Notice a trend? Lots of clotting disorder tests on the books.

We know Bunny died due to two large subchorionic hemorrhages. We know we had a threatened miscarriage with Luke before the actual miscarriage, but we don't know why. We know Puff was born with a tight nuchal cord, but we don't know why. Nuchal cord at his gestational age is incredibly rare. My research put the statistics at under a 6% likelihood, with NO statistics available about nuchal cord causing death at that gestational age. We also know that with *only* three miscarriages, the tests are unlikely to reveal anything. I have been on a prenatal vitamin since June of 2014 and took extra folic acid with at least Luke and Bunny, so a deficiency isn't likely as treatment is taking extra folic acid. I have been on an 81mg aspirin regimen since my early 20s due to my history of hemisensory migraines and family history of heart problems. According to my ob/gyn, that is the typical first line treatment for clotting problems, so that is unlikely also. Neither J, M, or I have any symptoms of genetic abnormalities, so that, too, is unlikely. I also started progesterone right after we got the positive test with Bunny.

So yeah, there are lots of things that are unlikely, but possible. The losses were all so different and I know that both my ob/gyn and MFM think that they are probably not related. However, J and I agree that we can't wait for another loss to do testing. I know the doctors think we are likely to go on to have a healthy pregnancy. We simply aren't willing to risk the life of yet another of our children. Insurance will pay for testing after three miscarriages, we're getting the testing after three miscarriages. If nothing comes of it, we'll at least have that knowledge. If something does, then we'll either be able to do something to improve our odds of a healthy pregnancy or we won't but we'll know what we're up against. No matter what, we want as much information as possible to make the best, most well-informed decision possible. From here, we can work with my ob/gyn and MFM to make a plan for the next pregnancy.

In several different conversations with friends about the testing, the same awkward moment comes up. People don't know if they should hope the tests find something or not. I can understand both viewpoints. On one hand, finding something means that there is something wrong with (most likely) me and my friends are likely afraid I might blame myself. On the other hand, finding nothing means that we have no idea why we lost 75% of our pregnancies and those stats don't forecast happy days ahead, no matter what the doctors say. So here's my hope. I hope we find something. Even if it is something that can't be compensated for, fixed, or eradicated, at least I'll have a reason. At least then, the losses won't be random, "bad luck," etc. Maybe I'll blame myself a bit, but I have a cognitive understanding that I didn't know about the problem and couldn't possibly have done anything about it. I understand that I did as much as I could as soon as I could and I honored my babies by getting the testing so that we could do as much as possible for a better ending next time. To me, the worse of the two options is not knowing, having to face the possibility of trying again and again just to end up in the same dark hole until we finally have to stop. I know that is the most likely outcome, not finding anything, and it is the scariest for me. But regardless, I have to try. I have to give any biological children we might go on to have the best chance I can, even though it means facing down and likely living through, one of my worst fears.

While hope isn't exactly is strong supply at this moment, it comes and goes. But hope is always there or we wouldn't go for testing at all, we wouldn't keep trying, we wouldn't keep fighting. Maybe it is more accurate to say that my hope is more hard-fought than ever before in my life. It isn't that it isn't there, but rather that I've been able to take it for granted in the past. Now that I have to fight for every scrap of hope for a healthy baby, I feel the loss of that innocence, of the free and limitless supply of hope I used to have. But hope remains, and so we walk down the path that will lead to our redemption, not knowing what the road holds, but trusting in the One who holds us.