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Monday, June 29, 2009

We begin our journey with Kaitlyn


We were so excited to find out we were pregnant. Cautiously optimistic due to the previous miscarriage but thrilled none the less. The pregnancy started off normal and I quickly developed morning sickness. This pregnancy was off to a good start. (I never got sick during the pregnancy that ended in miscarriage) To me being sick is miserable but comforting?!

As the first trimester came to an end I started letting myself look into our future and see us as a family of 5. I was always convinced it was a boy, deep down suppressing my desire for a little girl. When asked what I hoped for I always replied by saying "healthy, as long as the baby is healthy," never admitting how bad I longed for a little girl.

At around 4 months my doctor asked me if I wanted to have the quad screen test. http://www.americanpregnancy.org/prenataltesting/quadscreen.html
I agreed. I had it done with the boys and had always figured I would rather know if the baby had any health concerns so I (we) could be prepared. Abortion was never an option for us. I got my blood work done that day and honestly didn't give it another thought. Time went on and I grew anxious for our 20 week ultrasound secretly hoping to find out it was a girl.

Side story: A few weeks before the ultrasound I went to the bank and spoke to the teller. She was quite pregnant. We engaged in pregnancy chat and I told her of my upcoming ultrasound. She proceeded to tell me of her good friend who was also pregnant who just found out her baby had Down syndrome. My heart broke for her and I got chills. It was in that moment that I began to feel so guilty. I had been so focused on wanting a girl I disregarded the whole purpose of the 20 wk ultrasound. It's a health screen, and growth scan; finding out the sex of the baby is merely a perk. Deep down having a healthy baby was always the most important thing, but I had let myself lose sight of that.

Within days of visiting the bank the doctors office called. My heart sank. I wasn't due to go in for a couple weeks...why would they call...oh my gosh, the quad test. I instantly felt ill. They asked if I could come in that morning. The doctor was leaving for a few days and needed to see me ASAP. I called my sister to watch the boys and Blair and I headed for the doctor. My mind raced the whole hour it took for us to get to the office. What did the quad test screen for again?... Where did I put the brochure?...Is this really happening?.....When we arrived we were informed that our baby had a 1/80 chance of having Down syndrome. We were advised to meet with a genetic counselor and a high risk OB for a special ultrasound which would look for any other markers for DS. After that I would be given the option for an amniocentesis, which would be the only sure way (98%) we would know if the baby had DS. After a few days of waiting we went to meet with the specialist and counselor. Before we arrived I knew I wanted the amnio. The idea of the procedure freaked me out but I had to have it done no matter the risk. I had to know! That was a horrible day! We left the office knowing it would take 2 long weeks for the results. The amniotic fluid was being sent to New Mexico where they grow the baby's cells in a dish, then analyze the chromosomes. That day the ultrasound had found a "bright spot" on her heart. We were told this was not consistent with DS, but never the less was enough of a concern to make an appt for a fetal echo cardiogram with a pediatric cardiologist. We scheduled the fetal echo for 7 wks later. Like I said what a horrible day! Did I mention we found out that day it was a girl! The sex didn't quite seem so important anymore.

The days drug on. I became obsessed over the possibility of a heart problem. I partially dismissed the DS. 1/80 is a small chance, right? WRONG! We received a phone call almost 2 wks after the amnio. She had Down syndrome. We were devastated. How could this be? I'm only 29. Those first few weeks were a blur. I spent most of my time reading anything I could get my hands on. I couldn't believe how ignorant and uninformed I had been about DS. Knowledge has become a comfort to me. We definitely have gone through many emotions in the last months, but after much prayer I know now that Kaitlyn is a gift from God. She was meant to have DS and this was meant to be our journey.

The beginning of May we had the fetal echo. The "bright spot" they had seen didn't seem to be an issue. Unfortunately they did find a heart defect that will require open heart surgery at around 4 months of age. The defect is called a complete atrioventricular septal defect (AVSD) http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/avsd.htm
This has been scary for me. I continue to read and gather information. DS blogs have become my greatest sense of comfort. I routinely get ultrasounds to monitor the baby. They estimate her weight at 4lbs 10oz. She's gained almost a pound in 2 weeks. The doctors say she looks good! My c-section is scheduled in 5 weeks. Our journey has begun with Kaitlyn. It has been emotional and scary but I can honestly say I cannot wait to meet her and be her mom. God definitely has a plan for her and I am so thrilled that He chose us to be her parents and live out His plan. Stay tuned as our journey continues.....