formats

One of the things I’ve been looking for in my search for ventriculomegaly, is background or “signs” leading up to our diagnosis. I think the first thing I asked was “Did I cause this?” So for background purposes, this is the story of this pregnancy so far.

I am 36 years old – so in obstetric terms, I’m ancient. Not really, but I am AMA (Advanced Maternal Age). I will be nearly 37 when this baby boy is born. I didn’t even want to be pregnant – in all honesty. I have 5 beautiful children, and mentally I was so done. I closed the chapter on my baby birthing years with the fabulous delivery of my son in 2010, the day after my 33rd birthday.

I was in the midst of an epic weight loss battle – and for once, I was winning. Around May of 2013, something clicked for me nutritionally, and I found out that eating a high fat, lower carb diet rich in nuts, avocados, coconut, eggs, full fat dairy, animal protein, all the veggies I could handle and limiting my grains and fruits would catapult me closer than I ever thought possible to my goal.  By December 2013, I had lost 55 pounds, with a mere 50 to go, and I was feeling great.  I was looking forward to January, simply because our new insurance would kick in, and the first thing on our list was a checkup, followed immediately by a vasectomy referral.

And God laughed.

Apparently, losing a large amount of weight, eating a very clean unprocessed diet, and working out even moderately would be enough to trigger SUPER FERTILITY!

So, a few days before New Year’s, it suddenly dawned on me that I was feeling run down, HOT, and I was “late.” I knew.

I am ashamed to admit that I cried for days. Like, ugly cried. My kids were scared to death, and that made me feel worse. I went through the motions of the holiday. I went back to work. I started bleeding – and I felt…relieved.  Then immediate guilt. I apologized to everyone – my unborn, my heavenly Father, my husband… I mean what was wrong, really? So it was horrific timing. In the end I realized it was just fear and selfishness on my part. Obviously, He knew I could handle this – albeit badly. The bleeding stopped.

My first appointment was the day of Snowpocalypse 2014, the day the south stopped.  I met with my new OB at a completely new practice thanks to the limitations of my new insurance, and I didn’t like him at all. The short of it was that I was old, fat, and destined for a repeat c-section that I should just schedule now. Oh, and he was “sure” I was a diabetic, so we ran tests to see how “bad” off I was. He took forever, so I made it as far as my office unable to get home. Things were going ‘super awesome.’

Not surprising to me, I was not a diabetic. My hA1c was normal, so things were looking more promising. Maybe I could avoid the major hassles of gestational diabetes this time. I wasn’t as optimistic, but my mom sure was. I spent so much time “praying the diabetes away” when really it would prove providential.

My 12 week genetic scan was uneventful – my Nuchal Translucency measurement was 2.1mm. I had never had a reading over 2mm before, but the Perinatologist assured me that there were no other markers for any problems, but I should probably take a Harmony test to be sure. Harmony tests are new – it’s a blood test that looks for placenta DNA and can separate it from mom’s blood and look for the 3 most common Trisomies 13, 18, and 21 (aka Down Syndrome). I had my blood drawn, and the courier never picked it up. I didn’t find this out until a few weeks later, and in the interim, the government had decided I couldn’t use my private insurance anymore, I had to use Medicaid, and Medicaid wouldn’t cover the Harmony blood work. I took this as a sign to “let it go” and I didn’t pursue any further genetic testing. My 19 week “big ultrasound” showed a very healthy baby boy. Measuring and looking perfect! I also failed my 1 hour glucose test so badly that I just went straight to the monitoring – which I was already doing on my own. I soon started on insulin for fasting blood sugar control.

I met again with the Maternal Fetal Specialists at 22 weeks for a baseline growth scan. These would be repeated monthly to track growth as I have a history of large babies, and Gestational Diabetes certainly doesn’t help. At 21w5d, he was measuring 21w5d, and all was well. See you in a month.

On May 30, 2014, I was 25w5d, and I think he was measuring 25w2d – but my memory is a bit foggy on the details, because this is the day I would get up close and personal with a completely new part of my son – his lateral ventricles. You have 4 ventricles in your brain – but I was fixated on two large ones, side by side, as my Perinatologist pointed out all the structures that could be seen. It slowly started to sink in that there was a “problem” and this wasn’t just a detailed show and tell special. Once the left and right vents are formed in the first trimester, their width is fixed at around 6mm – with a cutoff of 10mm for “normal”.  After what seemed like 59 million measurements, we were told that the left and right vents were measuring 12mm to 12.5mm. Mild Ventriculomegaly.

The worst part for this “Type A” personality, was the “see you in 2 weeks so we can see if they are growing or stable”…say what? No one could tell us what was causing it, what it meant, what it would do – other than it “could” be Down Syndrome, it “could” be the early stages of hydrocephalus, it “could” progress, it “could” remain stable, he “could” be developmentally and/or cognitively delayed…the diagnosis of “could”.

More ugly crying.  I questioned, out loud, “And what was the point of alllll of this?!” I might not ever get an answer, and I’m learning to be ok with that.