I wrote the title to this blog and was amazed it has only been one week. What a week we've had. My reasons for starting this blog were partly selfish...I feel like writing is a good way for me to express my emotions. I also think writing will be therapeutic. But also, I have found great comfort this week in reading the blogs of others who have gone through the same thing I am right now. Who knows maybe one day this blog will be of comfort to someone else who finds themselves in the same situation.
The best way to tell Cal's story is to start from the very beginning. 9 months ago I found out we were expecting number 3. I was thrilled! I admit I am crazy about newborns and with Ivy being 3 I was ready to have a newborn again! Around 16 weeks they drew an AFP...a blood test that checks for certain birth defects. A week later my doctor called to tell me the AFP was positive for Down Syndrome and that I had a 1 in 240 chance of having a baby with Downs. Being the worrier I am from that point on I started to worry. Everyone kept telling me not to worry...that the chance of having a baby with Downs was small. (No one knew at that point that I would have a baby with a genetic condition that happens 1 in 40,000 births). So I told myself every night not to worry, but sometimes I'd wake up around 3 in the morning and not be able to sleep because I was worried. At 20 weeks we went in for our routine ultrasound. At this point we had decided not to find out the sex of the baby. We thought it would be a fun surprise. With a boy and a girl already we didn't care one way or the other. The ultrasound was going great. Everything looked good up until the ultrasound tech got really quiet. We asked her what she saw and she told us the baby had choroid plexus cysts located in a certain part of the brain. We obviously had never heard of these and asked her what they meant. She told us they can be found with certain chromosome abnormalities...particularly downs. This is when I broke into tears, started shaking, and felt certain we needed to have an amnio done to find out what was wrong with the baby. We also decided with all the chaos already surrounding this baby to just find out the sex. So this is when we found out we would be having a little boy. After the ultrasound we met with our doctor who informed us the cysts that were seen were found in babies who have trisomy 18 not downs (which is trisomy 21). He also informed us that trisomy 18 is incompatible with life and that if the baby did have this condition it would die shortly after birth. Early the next morning we met with a perinatologist. He did what is called a level two ultrasound, and to our delight told us the baby looked great. He told us the cysts are common (1 in every 100 babies have them) and that they resolve on their own around 30 weeks, and when the cysts are seen alone (meaning no other abnormalities are found on the ultrasound) that the chance of having a trisomy 18 is extremely rare. As far as our concern about Downs, he told us that 2/3 of the time you will see something on ultrasound that indicates the baby has downs and he saw none of those markers. So obviously we were feeling pretty good. It was at this point that I decided not to have an amnio done. The chances of something being wrong were so small that I felt like the amnio wasn't worth the risks associated with it. Looking back now I wonder why they didn't see any skeletal dysplasia during the ultrasound. Skeletal dysplasia is seen with Cal's condition. But then again would it have really been better to know then versus finding out now? I am still undecided on that one.
The rest of my pregnancy went smoothly. At 30 weeks we had a follow up ultrasound and the cysts were gone. While all this news was good news I still worried. I often woke up at night and couldn't fall back asleep...I'd lay there and wonder is my baby ok? What will I do if he isn't? Its always in those quiet hours of the night that my mind gets the best of me and I begin to worry.
Well fast forward to 39 weeks. I'm scheduled for an induction and need to be at the hospital at 5 in the morning. Around 3:30 I start contracting on my own. We get to the hospital and around 7:30 my doctor comes in to break my bag of water. Marcus said I must have had 2 gallons of amniotic fluid (which now as we read is associated with Achondroplasia). By noon I'm dilated to 10 and ready to start pushing. At this point my fears and worries get the best of me and I start to cry. I'm so ready for this baby to be born but yet I'm so scared that something is going to be wrong. After two pushes he is born. He starts to cry right away and everyone tells me he looks great. They don't see anything wrong with him. Slight relief sets in but still that nagging feeling that something is not right stays with me. Marcus and I escaped just the two of us for dinner last night...we talked a lot about Cal, and he remembers feeling the same way I did. Even though they said he looked good Marcus just couldn't get rid of this feeling that something wasn't right.
Later that evening the on-call pediatrician came in to look at the baby. I will never ever forget that moment when he walked into my hospital room after checking Cal. I knew the moment he walked in something wasn't right. He told us (in the absolute worst way ever) that the babys bones in his thighs and upper arms were short. We asked him what that meant and he told us he thought the baby had Achondroplasia which is a form of dwarfism. This came as an absolute shock. I had been so worried all pregnancy about Downs or Trisomy 18 and now this doctor was telling me he had something completely different. I think Marcus and I were both in shock. He said they needed to do some x-rays and in the morning Marcus would need to take those x-rays to a geneticist at Primary Childrens Hospital. The geneticist would look at the x-rays and make a diagnosis. He told us he was 70% certain the baby had Achondroplasia but we'd have to wait until the x-rays were read to know for sure. He left and we both cried. We called our parents who immediately came back to be with us. My heart was broken...I felt certain I could not do this. We asked Marcus's dad to give Cal a blessing. He gave him a beautiful blessing. Marcus and I also received Priesthood blessings. Mine from my Dad and Marcus from his. I knew the moment those blessings were over that Cal had Achondroplasia. I think we all knew...and we all cried. I remember waking up the next morning hoping it had all been a bad dream. I couldn't stop thinking about all the other moms in the hospital holding their healthy babies. Their babies that didn't have a condition that happens 1 in 40,000 births. All I kept asking myself was why me? Marcus met with the geneticist at Primaries with his dad and mine and the diagnosis was confirmed. Cal had Achondroplasia
I think I've always had a vision in my head of what my family would be. Maybe its just me, but I'd think about my Christmas card. My 3 or 4 cookie cutter kids a loving husband....and so on. Which I realize now is silly. Cal may not be what I invisioned when I thought of that Christmas card picture...but I'm realizing now he is going to make that Christmas card even better. I've realized that when lifes challenges seem too heavy to bear on our own the Lord steps in and helps us. I've also realized that while this is not the road I ever pictured going down...that I can be strong and I can do this. Don't get me wrong I still cry almost every day. I will look at his sweet innocent face and wonder why...why does he have to deal with this? What will the kids in school say? Will people be mean? And I know that unfortunately there will be people out there who will be mean and who will stare and who will say stupid things. That for me is the absolute hardest part. But I've also realized I don't have to worry about all of that right now. I just need to take things one day at a time. Right now he is a beautiful healthy newborn. Who is loved by so many people. He will be a blessing in our home and I can tell he has an amazing little spirit that will bless our lives and the lives of many others.
