THe Hawkins Family Update

In my last post (a whole 3 months ago!), I shared our exciting news about our pregnancy.  Shortly after that post, we found out we are having a precious little girl.  The ultrasound tech noticed some scar tissue during the scan that needed to be looked at again as the baby grew.  We were reassured that it was probably nothing and that this was just a precaution.  We joked that it wouldn't be a normal Team Hawkins appointment without at least one speed bump.  And we left our 21 week scan bubbling with joy and an appointment card for a follow-up scan at 28 weeks.  Joey left for his work rotation at the beginning of May, I headed up to Alaska to visit some favorite friends for a week, and life went on as usual.  I eagerly awaited my 28 week scan to get another look at our little lady.  I wasn't worried at all.

Since Joey was/is out of town, my step-mom came with me.  As the tech did the ultrasound, she talked us through different body parts we were looking at and different measurements she was taking.  I noticed that the head was measuring 2 weeks ahead, but I've heard so many stories of the vast differences in growth rates that I didn't think anything of it.  She showed us the heart, the kidneys, the bladder, the stomach, little legs kicking around, little hands waving, confirmation that this is a little lady, and a nice long look at the spine.  She mentioned that she was having a hard time finding the scar tissue and wanted to confer with the perinatologist (high risk pregnancy doctor) and look at my old scan to see where she should be searching.  She came back a few minutes later with the perinatologist who told me that they couldn't find the scar tissue.  She scanned through the screens of the ultrasound and said, "Are you looking at the screen?  This shouldn't be here."  She went on to explain that the left and right ventricles of our baby's brain were measuring twice the normal size.  She used words like "concerning" and "serious issue."  She then told me that she wanted me to meet with the genetic counselor again to talk about testing options.  We had met with the genetic counselor after my previous scan due to a normal variant in the baby's heart called a bright spot.  At that appointment, we decided not to do any testing and were encouraged not to by the counselor as it had a higher likelihood of false positive than anything actually being wrong.  At this appointment she again said that the testing available wouldn't tell us anything we didn't already know and would only rule out things that we had already ruled out.  At this point I was told that the preliminary diagnosis for our baby's condition is something called hydrocephalus (water on the brain).  I was walked through the various outcomes of hydrocephalus ranging from a simple brain surgery after birth (simple brain surgery, that sounds like an oxymoron) to developmental delays to motor skill delays to, well the list got a little scarier from there and we're not crossing that bridge of worst case scenario.  She explained that we can only guess outcomes at this point and we'll have to wait and see as the pregnancy progresses and as the baby develops.  One thing I held onto as we met is that she emphasized this was not a question of survival for our little lady, more a question of what life could look like.  I left the appointment with another scan scheduled for two weeks later and a very vague view of what was wrong and what could go wrong. 

I am now almost 32 weeks pregnant.  At my last perinatologist appointment, the diagnosis of hydrocephalus was confirmed.  At 30 weeks Baby Hawk's head was measuring about 4 weeks ahead.  I've been told to expect to deliver around 36 weeks most likely via c-section.  Between now and then I'll see either my ob/gyn or my perinatologist every week (starting next Thursday).  At each appointment we should get a little more or an idea of what delivery and post delivery will look like for both me and the little lady.  And each moment between now and then, I try to concentrate on the things I know and not dwell in the things that might happen.

This is all a lot of information for one update, but at the same time I feel like I lack so much information.  For the sake of time and in an effort to actually get a post up, I'm going to end this update here.  In the next few days, I hope to post some about the processing we've been going through.  We've decided that this blog will be our way of getting information and updates out to friends and family.  The tricky part is actually doing the updates.  I know that as time goes on and appointments become more frequent, there will be a lot more information to get out.  But for today, I'm going to enjoy the sunshine and try to stay cool in my non AC apartment!