Tuesday, December 15, 2009

Frustrated and Overwhelmed (or, an overview of my shg)

I've been avoiding writing about this because I wasn't sure it was going to happen. There was a chance that due to illness and some bad timing that I might have been pregnant last cycle. Small, outside chance, but there. I didn't want to talk about it because I wasn't sure how I felt about it. One moment, I hoped a lot, another moment, I wasn't ready and the next I was worried about how it would be without having gotten all the tests done and taking baby aspirin.

Turns out I needn't have worried - except for a brief scare with a Target brand test and an evap line (no longer using those, that's for damn sure) which let me know unequivocally that I want to be pregnant again, despite the worries - my period showed up in normal fashion with enough warning on Friday. They had told me expressly that they couldn't do the shg if I was on my period, so I was concerned about the timing, but in this case, old Aunt Flo (gag me) didn't let me down. I was down to mere spotting yesterday and with a quick phone call, my appointment for this morning was confirmed.

I won't bore you with the details; it was fine. Not the most comfortable thing I've ever done in my life and I'd be happy to forgo it given the option of repeating the experience, but not terrible. Didn't enjoy the cervix pinch, but found it entertaining how teeny my uterus is in normal circumstances and I was amused to watch it being blown up like a balloon.

The doctor was the practice's RE, not my normal Dr. B. He briefly summarized the test results from my multitude of blood: normal, normal, normal, except for oh, yeah. I have a heterozygous mutation of MTHFR. That's all I know. He mentioned that it is considered controversial whether or not MTHFR mutations contribute to pregnancy loss, though he said he personally believes so, but also said that if I simply take a Vitamin B-complex supplement and folic acid supplement in addition to my prenatal, it should not be a problem. He also stated flat out that while he believes MTHFR mutations can cause recurrent loss, he emphasized that those are first trimester losses and is most likely unrelated to Gabe's birth.

He listened to my history and reviewed my chart and was fascinated to hear about my cervical ectopic (as opposed to befuddled, which is the normal reaction). He explained the procedure and on we went.

He quickly determined that the uterus looks just fine. Nothing structurally abnormal showed up, nor did I expect anything would. There was no evidence of polyps, fibroids or scarring that would prevent or impede normal implantation or placental development.

Then he decided to take a closer look at my cervix, and that's where I got thrown for a loop (though hearing that I probably don't have a relevant clotting disorder had already made me a little anxious, as after research I was fully prepared for that diagnosis and even welcomed it, knowing it would be treatable). He looked and said, "Ahhhhhhh-hummmmmmmmmm." I asked what that meant and he in turn asked me where my cervical pregnancy had been located and then pointed it out on his anatomical chart on the wall, needing only affirmation from me, which I gave to the best of my ability.

Specifically, he pointed to the top of the cervix, uterus side, also known as the internal os. Then he pointed out the damage on the internal os he was seeing on my cervix.

He said he couldn't say for certain that I experienced cervical incompetancy, nor that it was the defining factor in Gabriel's premature birth, but he suspects that is so. He said because it was at the internal os, rather than the external os, it would be harder to see via ultrasound and of course, we can't forgo the possibility that that pesky partial placenta previa (say that 10 times fast, dare you)wasn't covering it anyway. He said it might not be detectable through pelvic exam, where the external os would appear closed and long. And of course, we know from all the bleeding and the blood clot on the placenta that a weakened cervix is not the only problem that pregnancy faced.

Still. Awesome.

He said he is recommending cerclage for any future pregnancies, in addition to careful frequent monitoring.

I thanked him, felt relieved that I was able to have the procedure done before we began a real effort to conceive again, since it probably wouldn't have shown up without the procedure. I'm grateful that I don't have a blood clotting disorder that will put my future health in jeopardy. I'm thankful my thyroid is functioning, that I am not diabetic or pre-diabetic (very good for my weight), that my cholesterol is good, and that my blood pressure was better than perfect today. I'm thankful that there are some treatment options here.

But I'm also completely frustrated by this news. It does a few things. It brings me right back to the guilt I was feeling immediately after Gabriel's birth when I felt like my body failed me, failed him. I realize there is no logical difference between my blood and my cervix, but damned if it doesn't feel different. The one thing that had been mostly dismissed was an incompetent cervix, precisely because the pelvic exam I had at 12:00 pm that day showed no effacement and no dilation and I certainly went through plenty of contractions which were apparently opening the cervix. I'm right back there in the thick of that again and it hurts. If I didn't already have a therapy appt. scheduled, I would have called and demanded one, because it is eating at me.

It also strips away any illusion of control over the next pregnancy. While I know we never really have control, and while I feel I'm seeing the best doctors I can and that they are taking me seriously and working towards a common goal with me, I had hoped it would be a lot more straight-forward. I knew straight-forward (say Factor V Leiden) wouldn't be easier, but at least I had some control then, a plan then, something concrete to do to make things better.

Now I'm back to a murky set of facts: damaged cervix, likely cervical incompetency; lots of bleeding, possible early abruption, possibly placental malformation, possible complication of placenta previa; quickly descending preterm birth, maybe including PPROM but not sure; blood clot on the placenta, likely indicating abruption but with no indication of when the abruption occurred. The only thing we can do about these? Watch closely, wait tensely and cross fingers/pray. I will get the cerclage, though there are dangers associated with it and it scares me. I know I'll have a direct line to my OB and to MFMs if there are signs of preterm labor or issues with bleeding again. But . . . that's all illusory. There is no foreknowledge really to be gained by that, no real control given to us via that technology, only the reassurance that today there is a heartbeat and this hour the cervix is fine and hope that the next hour and the next day bring the same thing.

I understand that is really always the case, but it works for other people. They exist blissfully unaware of what is on the other side of the veil and how little control they have in any of it because they are on the good side of it all. The veil was ripped from my eyes and I know exactly what it looks like on the other side and it's fucking scary as hell to face that again and have no guarantees.

Naively, I wanted a guarantee. I wanted someone to tell me 'Hey, you've been through enough. This time you'll get your baby and can take him/her home with you.' or 'Now we know what caused it all, this time it will be fine.' I wanted that security, but I know it's not really there or really true.

I'm going to have a take a bigger leap of faith - when my faith has been sorely tested and stretched thin, when I've been in the smallest and worst of the statistics - and close my eyes and jump and pray to whatever being is out there that I survive it all, whatever comes. And I don't like it.

5 comments:

MSC from GP said...

Oh darling--did we write the same blog post, like one week apart?

Last week I was also facing my wall of fears and a similar giving up of control, so I understand where you are coming from. The reasons behind our loss are very different, but difficulty accepting that our pregnancy innocence has been lost remains eerily the same.

((HUGS)) to you. I'm sorry--I wish I had more than that.

Lucky said...

You don't know me, but I'm from the Bump. Getting pregnant after a loss is terrifying, and I've never experienced what you have. All of my losses were first trimester. Once you conceive again, Pregnant After a Loss is a great home.

As for the MTHFR. I'm homozygous C677T. Because of this (and other factors,) I saw a high risk doctor. There is a lot of doubt about MTHFR contributing to pregnancy loss and Lovenox is also a fairly controversial treatment. I took loads of folic acid and baby aspirin. This treatment was successful for me.

If you ever need to talk or have questions (I've had my MTHFR diagnosis for over a year) then you can contact me via my blog.

I think about you and precious Gabriel often.

HUGS!!!!

bkb said...

Hugs. I am glad you have a fantastic team of doctors that took the time to truly focus on you as opposed to your experience with the ectopic. It sounds like you will be well monitored and you will receive a cerc (I'm assuming both an internal and external stitch). That does not make a future pregnancy any less scary but you can feel good that you are doing everything possible to provide a safe home for Gabriel's siblings.

Boo said...

I just stumbled on your blog while surfing through blogspot. I've never experienced the blessing of being pregnant, so I cannot respectfully say that I know how you feel. All that I can offer is my sincere admiration for how beautifully and courageously you are moving forward into the life that you must now live without Gabriel. Perhaps, like the angel he is named for, he will stay by your side.

Lulu said...

I'm a lurker from BOTB, and I've been following your blog, along with some others, for a while now.

I just read this post today on my reader,and I wanted to let you know of a website I discovered five years ago, when we found out my Grandmother was Factor 5 positive. I did a lot of research, and came up with the website http://www.fvleiden.org/. The site has, along with all the info and other things, a message board, with (at least there used to be) several knowledgeable people who had done a huge ton of research into FVL and the associated thrombophilia disorders (MTHFR included, I believe). The message board gets sent out in emails once or twice a day, if you chose the digest option. I learned a lot from those people when we first got the diagnosis, and we were all so scared and worried and uncertain of what it all meant for our family.

Not sure if you've been to this website or not, I just wanted to make sure you know it's there.

Good luck. I've never been in your shoes, but I DO know that I would never wish it upon anyone.

Please check out the site if you haven't already. It is an excellebt resource.