It's never good when the doctor calls . . .

NOTE:  I considered not blogging this, because so many of you know me in real life away from the anonymous internet world.  And I don't want to talk about it outside the anonymous internet world right now.  But this is my outlet, my safe place, and I trust the people I've shared this forum with to keep things this way.  If you know me personally, let me restate - unless I bring it up with you directly, I do not want to talk about this.  I am very emotional about it right now, and I need the people I interact with every day to help me keep my sanity by acting normal.

So my midwives' office has a policy.  Abnormal test results are ALWAYS reported by phone as soon as they are available.  And normal test results are ALWAYS reported at the next standard appointment. This means 2 things.  1) Don't bother the poor nurses by calling to ask about your test results - either they are normal, or they aren't back yet.  2) If you see their number pop up on your caller ID out of the blue - freak the fuck out.

I didn't even freak out when I saw the number pop up today.  I knew exactly what they were calling for - I was 100% positive I had failed my glucose test and this was going to be a phone call to tell me I had gestational diabetes.  My heart wasn't even pounding when I answered the phone.

Yeah.  Fuck me.  Gestational diabetes is the least of my worries right now.

At my appointment last week I had the 3rd and final part of what is considered comprehensive early screening.  Blood work and an ultrasound at 12 weeks combined with additional blood work done between 16 and 18 weeks not only give you the results of your risk for trisomy disorders (that comes from the 12 week blood work), but also give you the results of your risk for neural tube defects (that comes from the 16-18 week blood work).

Turns out my alpha-fetoprotein (AFP) is elevated to a level that puts this baby at a high risk for having a neural tube defect.  I wasn't even sure I was hearing my midwife correctly.  What the fuck?  We saw the baby at 12 weeks and everything looked good.  Now you are telling me that I'm at high risk for brain and/or spinal cord defects.  I started taking notes, because my brain just wasn't processing.

Things we know right now:

1) Most importantly (and what I try to keep reminding myself):  These tests are designed to catch as many cases of problems as possible.  As a result they cast a wide net, and are known for flagging normal pregnancies as high risks.  We knew this when we opted for these tests.  (It's the difference in screening tests vs. diagnostic tests.)  It was a risk we were willing to take and now we are living with the results.  There is a very high chance of everything being okay with this baby and the elevated AFP not being a sign of anything at all.  Unfortunately, we need more testing to know for sure.

2) The most common course of action for a test result like this is to repeat the test.  FUCK me.  Another blood test and another week of waiting for results.  Results that will either say that I'm not at high risk for an NTD (and conflict with the current test) or will confirm that I am high risk (but not with any more or less certainty than what we already know).  So I go Thursday morning for this test.  It feels like an exercise in futility to me, but what do I know?

3) The results of the next blood test determine the course of action.  Which could be nothing.  Or could be a consult with a high risk specialist and a comprehensive Level 2 ultrasound.  The anatomy scan we already have scheduled for 9/6 is also a comprehensive Level 2 ultrasound, but if we are referred to a specialist for possible NTD concerns, the ultrasound would be performed and reviewed by people even more trained at how to detect these specific problems than a standard ultrasound tech.  (Although glaring severe deformities should not only be detected by ANY ultrasound technician, but would have likely also been seen at our 12 week ultrasound.)

My midwife was very reassuring.  She told me at least 5 times that these results do not mean that my baby has these problems.  Just that we need to do some more digging.  She also mentioned possible problems with the placenta causing elevated AFP - and Dr. Google confirms that while elevated AFP doesn't always indicate a NTD, it can be a predictor of placenta and growth problems that will occur later in pregnancy.  (So if it's not an NTD, I'll still have plenty to worry about . . . )

So I think no matter how my second blood test comes out, I'm going to ask for the high risk consult.  Best case scenario, this next test comes back normal and I have conflicting results to worry about.  I'm just the type of person who wants all the information when it comes to stuff like this.  And I don't think I'll find conflicting blood tests very comforting to sit on for the next 22 weeks.  Given that we don't know for sure what causes elevated AFP, I would rather err on the side of caution.  I've made it this far, and this is our last pregnancy.  I'm not leaving anything up to chance.  There are already enough things in pregnancy out of my control.

As I said to the few friends I shared this personally with tonight . . . After I passed my loss milestones and had a perfectly wonderful NT scan, my midwives referred to my pregnancy as any other low risk second trimester pregnancy.  Intense cervical pain and pressure, anterior placenta, a heart beat that couldn't be found at 17 weeks, and now increased AFP.  This is my low risk second trimester.  After my luck of having 4 consecutive 1st trimester losses.  I'm trying really hard not to play the "why me" game.  I'm trying really hard not to feel sorry for myself right now.  But this just fucking sucks.  I'm tired.  And I feel really close to emotionally breaking.  And I just get to sit and wait some more . . .