I can't believe it's been a YEAR. One year since our worlds were completely rocked and that we learned the meaning of Trisomy 18 for the first time. One year ago tonight, 10/21/08, things were perfect...halfway along in my pregnancy I was feeling my baby squirm and kick and roll around all the time. I had called all my friends and family to remind them that tomorrow, 10/22 would be my ultrasound. We would be finding out the sex of the baby and would call them right away, as soon as we had the news.
Dan had taken the day off so that we could go together, and so he could stay with Jackson when I went to my 20 week checkup at 9:30 that morning. I went to that appointment and was greeted by the big stork sign that meant the dr. wasn't in - he was delivering a baby. But since I had no concerns, no specific questions for the dr., and was just there for a routine check-up, I could see the office manager/practitioner in his place. Little did I know, this was the last time that anything about my pregnancy would be considered "routine." My appointment was quick - weight, urine, blood pressure and then my favorite part...listening to the heartbeat. As always, it sounded perfect. If Jackson was ever with me he shouted "choo-choo" when he heard it because of the loud, steady rumble that echoed from the doppler.
I was in and out of the office in about 15 minutes. Not a care in the world.
When I got home, Jackson was taking his morning nap so Dan and I spent some time doing yardwork and a final fall cleanup outside. It was a gorgeous cool day. I was chugging all my water so I could have a full bladder for the ultrasound.
The 3 of us headed out for my 12:30 appointment. We had figured Dan would play with Jackson in the waiting room while they took me back for the first part - the quick boring part where they just look things over, do some measurements, and tell you everything looks good. Then, they'd bring him in for the fun part - where they tell you the sex of the baby and point out all the perfect little parts of their body. We were armed with the ipod full of Thomas movies for Jackson to enjoy during that part. But unfortunately, the first part wasn't quick and the second part wasn't fun.
The first part took an unusually long time and the woman wouldn't tell me a single thing. The instant the first black and white image of my baby showed up on the screen, tears streamed down my face. I cried tears of joy and a had huge smile because of how sweet that baby was. I remember saying out loud, "Hi sweet baby." The tech was clumsy and awkward and silent. She kept typing, it seemed like repetitively, to mark things like "Gastro", "Foot", and "Brain" over and over again. The very first thing that I thought was a little odd was how many times I felt like she took pictures of, and labeled, "Foot".
I finally asked her if she knew the sex of the baby and she just said No. She finally let me go to the bathroom and went to get Dan and Jackson. When Dan came in he immediately knew it had taken longer than it should have, but I didn't seem to care because I just wanted to find out if Jackson had a sister or brother. I naively hadn't even given a second thought to whether or not the baby was okay. I always felt the kicks, the heart rate was perfect at every appointment, and for 20 solid weeks we hadn't worried about the baby for one minute.
I expected the second part to take the same amount of time as the first, but it would start with her telling us if we had a boy or girl, and then it would move on to pointing out the cute button nose, the strong beating heart, the spot-on measurements of a baby this age, and so forth. I expected that we would leave armed with our first set of pictures, and that I'd be dialing my phone on the way out to share the news with all my family and friends. But 5-10 minutes later, I left in tears, not wanting to call anyone. The tech was very fast, basically saying that there was no way to find out the sex of the baby. When I told her I didn't understand, she said the baby was too small and that sometimes it's just too early. I was perplexed because people always find out at 20 weeks, that was exactly how far along I was at that time, that's how far I was when I found out with Jackson, and it didn't make sense that it was too early. Her response was "that's not a 20 week old baby." I felt completely helpless. I was disappointed that we hadn't found out, I was confused about why, I was embarrassed that I was so upset, and I felt like I had been cheated out of what was supposed to be a huge celebration. The woman had no idea why I was crying, and the only thing I could say was that I was disappointed. My expectations had not been met and I was hurt by that. We walked out empty handed - no news and no pictures.
When we got home we put Jackson down for his nap and I called my mom and cried. At the time I was still disappointed that we didn't know the sex, and I was embarrassed that I had made such a big deal of it. I didn't want to call everyone to tell them we didn't know, but I knew that everyone would start calling to find out. Sure enough, only a few minutes later, the phone rang. But it wasn't my sisters or my friends. It was my doctor's office. It was the practitioner I had seen that morning, calling to say that there was something wrong. They had seen the ultrasound pictures and we should come in to talk to the dr. I asked if I should make an appointment or come right then. She said I should come right then. I told her my husband was home but our son was sleeping, so should he come with me. She said we should definitely come together. Right then, with my hands shaking as I hung up the phone, I knew it was bad. I called my mom again and I remember barely being able to talk. I wasn't bawling hysterically, I was just very very quiet.
We woke Jackson up to take him with us and when we got to the dr. office, I immediately felt like "that girl." The feeling was so distinct and I can remember all of it like it was yesterday. The minute I gave the receptionist my name they all looked at me knowingly, sympathetically. They shuffled around and scurried to get things in order. Rather than one nurse greeting me to take me back, there were two, plus the practitioner, and they held my hands and gave me tissues. The first thing I told Dan was that if they gave me tissues and treated me like that it must be bad. I gave him my planner and asked him to take notes because I knew I couldn't write. The dr. was very calm and very sweet and didn't beat around the bush. He said there were 3 things wrong - omphalacele, club feet, and choroid plexus cysts. He explained each in detail and explained how each one in isolation wouldn't be that big of a deal - each could be fixed. But the fact that they were all showing up together caused concern. They immediately thought it was a genetic or chromosomal disorder, and they immediately made it clear that it was out of their league. They already had a little note for me with the name, address, and time of an appointment that they had set up for us with a geneticist in the area.
We headed back home, put Jackson back down, and got back on the phone. This is when I think I started bawling. With each call I was greeted by someone excitedly answering to find out the sex of the baby, but in my tired sad voice I was telling them that something was terribly wrong. Dan immediately got online and even though you're not supposed to, started doing research about what little we knew. I did a couple quick searches too, just to see what might come up when you look for all 3 of these issues together. Trisomy 18 was the only common thread that we found. But Trisomy 18 was, of course, worst case scenario. I almost overlooked it, and got mad at myself for the classic case of looking online and immediately assuming the worst. I remember pacing the house talking to my sisters and best friends, crying and questioning, hanging up and calling someone else. But sweet Dan had been sitting so quietly, just waiting. All of a sudden I realized that we had hardly talked to each other. So I put the phone down and we just held each other. We cried and cried and cried. I remember all of those nights for the days and weeks to come, where I'd think we were doing so well, but then night would come. And when it got dark and when we were alone we would just cry. And I wondered if there would ever come a night when we wouldn't cry ourselves to sleep.
And now, a whole year later, I still cry myself to sleep. But not because of fear, not because of the unknown, not because I'm scared. Now it's because I miss my baby girl. Because what I thought was my worst case scenario was actually my reality.
Last year, on October 21, if I had thought "what will I be doing next year at this time?" those thoughts would have most certainly included an 8 month old baby who'd be babbling and scooting around and smiling like crazy. But October 22 changed all of that. October 22 this year will be spent at the cemetery, with arms that ache to hold the sweet baby that we saw on the screen for the first time one year ago. Even though the doctors only saw her imperfections at that time, one year later we know there are no imperfections. She is perfect and whole and in the presence of the Lord Almighty. And we can praise Him.
He created her inmost being, He knit her together in her mother's womb.
We praise Him because she was fearfully and wonderfully made; His works are wonderful, we know that full well.
Her frame was not hidden from Him when she was made in the secret place. When she was woven together in the depths of the earth,
His eyes saw her unformed body. All the days ordained for her were written in His book before one of them came to be. (Psalm 139:13-16)
