Thursday, January 21, 2010
Piper’s Story, Part 1
Almost exactly a year ago, I was finally starting to get over my morning sickness. At 16 weeks, I had my first doctor's appointment where I didn't lose weight. Things were finally starting to get a little easier, and I was starting to get excited for the rest of the pregnancy. We were able to feel the baby move quite a bit; we were so excited! I "knew" the baby was a boy, but we weren't going to find out for sure until he was born.
We had our standard 16 week blood screenings. Obviously nothing was going to be wrong. It was just one of those things you do. We didn't think a whole lot about it.
Until, a few days later, I got a phone call from my doctor. I was in a meeting at work, so I missed the call. He had called at the beginning of a busy "surgery day", so I couldn't get a hold of him to get the specifics. I was horrified. But part of me kept saying that surely nothing was wrong (he had already explained that the quad screen only gave the statistical probability of a chromosomal abnormality, and that there was no guarantee with the results). Finally, at about 8 that night, he called us back and said that our baby had a 1 in 277 of having Down syndrome. Since I was 26, it was about 3 1/2 times what our risk should have been for our age alone. Although daunting, 1 in 277 seemed like a fairly low chance. Our doctor wanted us to come in for an ultrasound so that he could measure the baby again. If we were more than a few days off in the baby's age, the test results would be invalid. So, the next day, we went in for the ultrasound. He didn't see anything obvious, so he referred us to the Perinatologist (a high-risk doctor) for further testing.
It took another week before we got into that appointment. The whole time I kept telling myself that there was undoubtedly nothing wrong, but was unable to shake the feeling that something wasn't right. That week brought lots of nerves, tears, uncertainty... Finally, nervously, we made it to the new doctor's and waited for the ultrasound. The technician took a couple hundred (yes, hundred) pictures of the baby. It was absolutely amazing. The machine that they had took the most unbelievable pictures. They measured every part of the body that they could find. Everything down to the length of the nasal bridge, pinky finger, leg bones, arm bones, various air and liquid sacs... They said that the baby weighed about 6 ounces, which was really cool to have a general idea of how big "he" was.
I couldn't believe that was our little baby. We had waited six and a half years to get pregnant, and that was our baby. We could see her profile-- her little nose, her sleepy little eyes, fingers, toes. She even had a round little tummy that I just wanted to kiss then and there. We sat in awe, watching as one picture was taken after another, somewhat in disbelief, for what seemed an eternity.
The tech finished, and went to show the pictures to the doctor. The doctor came in and remeasured a lot of the pictures, just to be sure.
Once the doctor was done, she told us that she was almost certain that the baby had Down syndrome.
A new kind of disbelief set in. Everything turned into a blur. Like we were watching someone else's life. We were told that we were going to have a little girl, and my heart broke. Suddenly I realized that the journey we "chose" was not the same as the one God had chosen for us.
The doctor told us that we should do an amnio to confirm. (I'll have to get into our decision to do that in another post; there's a lot of debate regarding prenatal testing these days, and I don't know if parents are always given the chance to make a decision on their own. We were blessed with amazing medical staff who believed that we needed to be prepared for the arrival of our special little girl. And that's all we wanted.) A few days after the amnio, our initial FISH results came back positive for Ds.
I won't lie. I was horrified. I had no idea what we were going to do. I kept saying that God should have given kids "like her" to someone that had more experience. Why us? How were we going to handle this?
It took a few weeks to get over the shock. We slowly started coming out of the haze and started our research. We started looking into the possible problems that these babies had, so that we could be prepared for whatever came our way. I didn't give much credence to the things that we "shouldn't" have to deal with. I wanted to know exactly what we were up for.
We kept our regular visits with our OB, and added growth checks for the baby every 4 weeks with the Perinatologist, too. On top of it all, we had several more appointments at the OB because, at about 18 weeks, I started having contractions, which didn't subside at all until she was born.
Suddenly, the remaining 20 weeks of my pregnancy couldn’t possible get over quicker, but at the same time, I wished I could stay there, in that place, forever.
I remember telling my mom once, early on, that I just wanted to hold her and tell her that everything was going to be okay. I lied. I really wanted to hold her so that I knew everything was going to be okay.
...and it is.