Now what?

I really don't know where to begin. I have been avoiding writing this entry, because I was afraid that if I saw the images of our ultrasound again that I would be transported back to that feeling of devastation and despair. I finally pulled them up today, and surprisingly..I was okay. I was actually a little disappointed in the quality and quantity to be honest.

I'll start at the beginning. The night before our trip, I took C, G, and E over to our friends house to stay the night, knowing it would be easier than bringing everyone over at 5am. By 6am Thursday morning, we were on the road. Larry drove the first two hours while while I stretched out (no car seats!) in the front seat and rested. When we arrived in Minot, we grabbed a quick breakfast and I took over driving. Five minutes out of Minot and I could hardly see the roads due to wind blowing snow across the highway. By the way, passing snowplows is one of the scariest experiences, ever. Eventually we made it to Grand Forks and took our exit for Fargo. Within minutes, the roads disappeared as we drove straight into a gusty blizzard. Finally, we arrived in Fargo and managed to only be 15 minutes late to our appointment.

I started out confident. I relayed all medical information to the sweet nurse, Mary, and anxiously awaited the ultrasound. Minutes later I was watching the screen as the tech quickly took measurements. I wasn't exactly sure what I was looking at, but I had a sneaking suspicion that something wasn't quite right. When she took his skull measurement, I could see that there was a shadow behind his head of nearly the same size. I hoped it was just his abdomen. In less than 10 minutes, she was done. That alone was concerning, as I was told it would take an hour. A few minutes later the genetic councilor came in and him and I went over a lot of information that I already knew about. I more or less wanted him there to help Larry learn about what was going on.

Then things took a turn for the worst very quickly. The Maternal Fetal Medicine Specialist got straight to the point and informed us that they found several things on the ultrasound that were very concerning. At first I thought he was just confirming the Down Syndrome diagnosis, but when he brought up the first ultrasound image, my whole world was turned upside down. He told us that the nuchal translucency (fluid behind the neck) had gone from 2.8mm to 13mm in just 3 weeks, and that it now surrounded his whole body. He brought up the image that confirmed my fears, the "shadow" behind his skull that I had seen during measurements was in fact the fluid. He then showed us that baby had pleural effusion (fluid pooling) on his lungs and informed us that all these accumulations of fluid were very likely the result of severe heart defect. Although it was too early to do an echo on his heart, he was able to pull up an image of one minor defect already evident, an EIF of Echogenic Intracariac Focus, or a small mineral/calcium deposit. All these signs, combined with shortened femurs were a sure sign that he did in fact have Downs Syndrome, but suddenly that was the least of our worries.

We could tell from the look on the doctors expression that things weren't good. He wouldn't come right out and say it was fatal, but he certainly eluded to that point multiple times. When I brought up doing an amnio then, he kind of dismissed it. When I asked if we could do it at my next appointment (19w), he again kind of dismissed it, saying "well, we can do it if you want to". His next statement is what brought it all home..."You should probably make an appointment with your regular OB in a few weeks to check for 'signs of life', and hopefully I'll see you in March for your next ultrasound". During all this time I stayed positive and upbeat, but grew progressively more quiet. By the time the doctor sympathetically shook our hands and gave his condolences, I was silent. However, it wasn't until Mary came back in and looked at me in that sweet pitiful way grandma types do that I lost my composure. I cried until I couldn't breathe, and she just held me. Under different circumstances, I would have loved to have that entire staff providing my prenatal care, they were amazing.

The next couple of hours were a blur. Larry drove around town, passing dozens of restaurants, both of us too distracted to pick a place to eat. When we finally did, I hardly ate and just shuffled through the motions. Soon, we were back in the car and on our way home, neither of us speaking. I curled up in my seat and cried and had silent panic attacks intermittently over the next few hours. We finally arrived back in Minot and I took over driving the remainder of the trip. Of course I hit yet another blizzard the minute we were out of town (did I mention that both times Larry drove, the roads were totally clear?). At least the terror of driving on invisible roads with idiots trying to pass kept my mind busy. Eventually we made it home and collapsed in bed..not that I slept or anything.

Just as with the first two times I was given bad news, I went through all the motions. First devastation, then grief, then acceptance, then positive faith. Only this time, anger found it's way in. I was so angry. Angry at God, angry at my body, and positively pissed at the 10 people who announced the pregnancies on Valentines! I literally felt like I was sent home to wait for my baby to die. Why did I have all those "signs", what was the point of me praying SO hard and totally changing my outlook on life, when not only was he not healthy, his prognosis was fatal? I was still seeing those stupid "52" angel numbers and would literally scowl and angrily look away. Why give me all that hope, and then just let me down?

Then something magical happened. I was laying in bed one night several days later and our little guy decided we was going to give a good ol' kick upside the uterus. It actually surprised me it was so strong. My anger melted away and was suddenly replaced with excitement. There was no way a dying baby could kick that hard, right? The next day, there was stronger, more consistent kicking. With each kick, my confidence that my baby was too stubborn to just lay over and die grew. I mean, he is made with my DNA after all, he probably has an extra chromosome just for stubbornness. So maybe, just maybe, he'll make it just to prove everyone wrong.

Where does that leave us now? Well, I am being optimistic, but realistic. I'm not praying for crazy miracles, I'm simply praying his condition improves. If he does pass, I hope it's peacefully and he doesn't suffer, but we'll cross that bridge if we come to it. For now I just wait for those little flutters and kicks that come every so often and talk to him about being my little wild child. I have no intention of going in for a 'signs of life' check-up and will continue to monitor him with my own fetal doppler until my next appointment. If for any reason my condition declines, I have cause for concern, or an emergency arises, I will absolutely get it checked out. However, I just prefer to relax at home with my family until March 18th, and we'll see where we go from there. I believe that if he can make it to 20 weeks, that his chances will improve a great deal and hopefully we'll receive more closely monitored care from there on out.

I continue to be so very thankful for all the prayers and well wishes we have received over this last month. I think that I would be much worse off if it wasn't for all the love and support that has held me up. Mavericks story has been shared on several boards, on my own facebook, and shared to others through friend, so I decided to create a page that will contain all current information and updates in one place as we take this journey. Please feel free to join us over at www.facebook.com/miraclemaverick.

Thank you!
-Lexi