Thursday, December 17, 2009

Up and down goes the parenting roller coaster ride

Two weeks ago, I got that dreaded call that no one wants to receive, while at work of all things.

My doctor's office called to say my AFP screening test came back with a higher risk for Trisomy 21 (Downs Syndrome).

Everything after that was much of a blur for me. I remember being completely calm and collected while on the phone with the doctor's office, asking as many questions as I could while scribbling down notes, asking about whether Trisomy 21 was the only thing that popped up on my test, that I realized these tests had a high incidence for false positives and how that averaged into things, what our next steps should be, etc.

I remember breaking down into uncontrollable sobs immediately after that (I had snuck off to a conference room that was rarely used, once I realized the call was not a good one, so that I could talk in private) and could barely get the news across the phone to Jon when I called him next. He had a different emotional reaction than me, but was freaking out just the same.

I remember sneaking to the nearby bathroom to wash my face with cold water, dry my tears and take as many deep breaths as I could to calm myself down enough to make it to my desk, pack up my bags, and get to my car to drive home. I remember stopping by and talking to a couple of co-workers to tell them a family emergency had come up, I wouldn't be able to make their meetings that afternoon, and could they please reschedule? and then walked away. I remember I had turned into a cold-stoned robot, trying not to think too much and just focused on getting the hell out of the building without breaking down.

I remember crying the entire drive home, one complete mess.

I remember crawling into bed, clothes and all, heaps of pillows and blankets surrounding me, bawling and letting it all out. Jon came home shortly thereafter to comfort and hold me. I remember we talked a little, but were both so stunned and in shock that it was hard to discuss much without me turning into a pathetic hopeless emotional wreck. I remember emailing a good friend of mine for some support and advice, who had a similar experience during her 2nd pregnancy. She responded with a few supportive notes throughout the night and into the following days which helped me get through the stressful times like no other.

I remember Jon and I picked up Logan together that night and went out to dinner as a family, hugging Logan just a little more tightly than we normally do.

Our doctor had referred us to a genetic specialist for counseling (to walk through our test results in more detail), a more detailed ultrasound (to see if they could see anything wrong with the baby that would indicate Downs) and if need be, an amniocentesis.

I had been ultra-paranoid about doing an amnio when pregnant with Logan and though I felt nervous about the idea of doing an amnio this time around, I wasn't as nervous about that as I was about the potential bigger impact these test results could mean. Suddenly, my perspective shifted in a whole 'nother direction.

Last week was our "D-Day" with the center. Unfortunately, our numbers weren't great. Our odds were 1 in 12 for Downs, and when I saw that looming 1 in 12 circled on the paper in front of me, my heart dropped, my stomach sank, and it was all I could do to keep it together. She said that for a 34 year old, the odds are 1 in 366 (or something) for Downs, so I was definitely well past the acceptable "normal" range and in the elevated risk category.

We went through all of our test results in detail with the genetic counselor. She also did a run through of our genetic history, which thankfully, didn't increase the risk any more than the tests had already shown.

We decided to do an amnio because I just needed to know and couldn't wait five months to find out whether we "lucked out" or not. We had already decided we were not going to terminate the pregnancy, regardless of the results, but we did want to be prepared if the baby ended up having Downs.

We had a detailed ultrasound done first - and everything looked perfectly normal there. The genetic counselor had told us that if all was good with the ultrasound, it could decrease our odds by 30-50%. So we were both feeling a lot better after the exam. But, with a 1 in 24 chance (if taking the maximum 50% decrease into account), I still wanted to go through with the amnio and get an actual diagnosis (I'm not one for surprises).

I was pretty nervous about the amnio, but the doctor was super fast and I hardly felt the pinch of the needle at all (side note: I have talked to several women who all seem to talk about the same thing about amnios: the ENORMOUS BIGGER THAN YOU'VE EVER SEEN needle that is AS TALL AS THE CEILING. I'll set the record straight by saying the needle looked pretty average to me, but for me, it was the vial that they were collecting the fluid in, which seemed abnormally large).

I had a little bit of cramping just after the procedure, when we were taking care of our paperwork and leaving the office, but nothing more than a little uncomfortable soreness after that. I took the rest of the day off work to lie in bed, watch TV and rest. I remembering being completely drained and emotionally exhausted - and actually fell asleep for a good hour or two that afternoon.

I was under strict orders not to move about too much, nor to lift anything heavy (hello growing toddler!). So Jon did all the heavy lifting (literally) that night, and the few days afterward as I recovered. I worked from home the next day as well - not because I was under doctor's orders to do so, but because I was still a bit distracted, what with the huge black cloud hanging over my head. I DID feel much better that next day though, and even did some light housework (and Christmas cards) to keep me preoccupied during the slow times at work.

Throughout, Jon seemed much more optimistic than I was. Since he viewed it as a 94-96% chance of the baby being just fine. I asked if he'd go to Vegas on those odds, and he said yes he would. However, my stomach dropped anytime the 4-6% number popped in my head. I've always been a 98-100% kinda gal myself.

There were several moments throughout these last two weeks where I'd have a hard time just swallowing without that big lump in my throat and the tears welling in my eyes. I'd look at Logan and my mind just COULD NOT COMPUTE how we'd live with one brilliantly quick and witty child and one who was developmentally and cognitively disabled. It was one of those biggest fears you always dream about but that you never think could happen to you. And, I wasn't sure I was prepared to handle it.

I was afraid I wouldn't be able to care for, and be a good mother to, this child who would so desperately need me completely. I was worried about how he/she would manage in a world so intolerable and misunderstanding of people with disabilities. I was worried how Logan himself, would cope. And, I was worried about how this would affect Jon and my lives - for the rest of our lives.

I knew we'd figure it out and we WOULD do it, with the love and support of our entire family around us, but at that moment I just couldn't picture it.

The waiting game is always so tough, but as much as possible, we've been keeping busy and trying not to think about the potential outcome. It helps to have a fast paced lifestyle like ours, busy with social engagements and a growing toddler, to keep your mind off things. And, I finally resigned myself (to Jon's relief, I'm sure), that there was absolutely nothing I could do about the outcome. I could cross every toe and finger on my body, knock on wood and say a prayer every night - but the reality was, our baby either had Downs, or our baby didn't. Nothing I could say or do in the next week was going to change the test results that were sitting in front of some lab technician. And if anything, stressing about it would only make things worse on me, on my body, on the baby, and on our family.

So I kept it out of my mind most of the weekend. I kept myself in the calmest state possible, all things considered.

But when Monday rolled around, Jon asked the big question. "Are we going to get THE CALL this week? We're supposed to get it this week, right? When do you think they'll call?"

I don't know. They said 7-10 days. So if they're talking calendar days, then it's sometime between Tuesday and Friday of this week. But if they're talking business days, then it's into next week.

There was a part of me that did a great job at keeping it out of my mind. But there absolutely was another part of me that kept a watchful eye on my phone throughout the day Monday.

No call.

All day Tuesday, no call.

Then Tuesday evening, just as I was wrapping up a meeting at work, I got a call. My phone read out a number that I vaguely recognized, but not really. And without realizing it, I thought THIS IS IT.

I answered the phone as I waved a good-bye and a "Sorry, need to take this" look to my boss, and walked to a nearby quiet area.

The news, thank goodness, was all good.

Everything after that was much of a blur for me. I remember hearing the lady on the other line (from the genetics center) tell me in this happy cheery voice that our test results from the amnio just came back and that our baby does NOT have Downs. I remember she also said that all other major chromosomal abnormalities had been ruled out (since it was a full DNA test, they looked at all chromosomes, not just the 21st chromosome).

Bottom line, everything looked great.

I remember calling Jon after that and in a foggy haze, still in shock and uncontainable excitement, I breathed, the tests are good, there's no Downs! The baby is healthy and fine. He asked me to repeat it again, and I did.

I remember him saying something about getting drunk that night but I was quickly fading from pure relief.

I remember finishing up the day at work as if I hadn't just received the world's biggest and impactful news of our lives. I remember picking Logan up from school that night and hugging him just a little more tightly than I normally do.

I feel like we have escaped the Big Bad Wolf by the skin of our teeth. And I feel our lives will, in some way, always be impacted by this experience. I feel like the last two weeks has all been a dream...yet a harsh wake up call on the difficult decisions and tough realities of parenting that we will continue to face down the road.

Several more times, no doubt.

As it is now, we are relishing in our current relief and bliss of all good news, and looking forward to an exciting holiday season ahead. I am now half way through my pregnancy (Did you hear that Internet? Halfway through. Already! Can you believe it?!) and enjoying the tickles and flutters of another active little boy growing inside me.


Chelsea said...

You poor thing. I'm crying right now, I can't even imagine what you've been through in the last few weeks. Thank you for sharing your experience.

Arlo said...

Yikes! No kidding about the roller coaster ride! Sounds like an absolutely hellish couple of weeks :( So glad to hear that everything worked out well.

Elizabeth said...

Holy crap. You had me teary and goosebumpy and now I'm SO HAPPY that Baby is going to be a-okay.

It's a harsh reality for the likes of me...what with my reality that if I do have a baby, it won't be until I'm closer to 40.