When Carson and I were moved to our new room it was so nice to finally have a chance to sit and process things. Everyone was waiting for me to send pics so I would call them first and warn them that they were in for a shock. I called my mom first. She was watching Baylee for us, who was only 3 at the time, so I figured she was the first person to call. When I said the words 'Down Syndrome' it was so silent on the other end of the line that I thought she hung up. She really didn't have much to say to me other than not to worry because they weren't 100% sure. I didn't think about what these other people may be feeling or thinking when I started calling them. My boss was on vacation. At dinner with friends. Never occurred to me to wait. I guess I was just thinking if I told enough people that maybe it wouldn't be happening or something. I don't know. I just didn't want them to be startled when they saw his newborn pictures.
There aren't many pictures of those first few days of us. It was hard to smile-to pretend to be happy. I wanted those memories for when he was older and able to look at them and understand. I was afraid that he would put two and two together that his sister had pictures almost down to the minutes of her life and he had none... or few anyway.
A few people came to see us that first day. My parents came with Baylee (who was terrified of me being confined to a bed). My sisters and my best friend Sarah. My step-mom and my dad. When my sister Heather was holding him I confided to her that I didn't think that he could hear. Something about the way his ears were shaped and the lack of response to noises concerned me greatly. Mother's intuition I guess...
The geneticist finally came into my room at 11pm. Honestly. I was so surprised to see him. The hospitals were about 30 minutes apart from each other and I figured since Carson was born in the morning that he wouldn't come until the next day. I was a little disappointed that Mike had gone home to be with Baylee but that's what happens when you have more than one kid, right?
He was so nice and understanding. He asked honest questions without making me feel like it was my fault for Carson's anomalies. He took written notes. Pen and paper. He asked if he could take pictures, to which of course I agreed. He was in our room for at least an hour. I still have a copy of his handwritten notes. I look back at them now and again. He unfortunately was just as puzzled as everyone else. He mentioned all the things that made Carson unique-his wide-set eyes, the fat pad on the back of his neck, his palmer creases which were so significant in diagnosing Down Syndrome, his crooked pinkies and his misshapen ears, his high palate and his tiny penis. Yes. I said it. Because of that one symptom they were afraid that it wasn't Down Syndrome but Edwards Syndrome- trisomy 18 not 21. (If you aren't familiar with trisomy 18 I suggest you look up 99 balloons on YouTube.) He decided that the best thing to do would be to do a blood test to check the chromosomes and then we would follow-up with him periodically. I thanked him and he left.
That night was hard. Being alone. Being tired both mentally and physically. The nurses came to take him around 2 am to draw his blood. I wanted so badly to go with him but they told me it would just be a little bit and he would be back in the room. I dozed off for a while and when I woke up it was 5am. 5am and Carson wasn't in my room. Panicked I called a nurse to my room. She explained that they had trouble getting a vein so they sent him upstairs to the NICU so that the specialty nurses would be able to draw blood easier on him. About 2 hours later they brought him back in. He was covered in little round Band-Aids. He looked like a pin cushion. I don't remember now exactly how many punctures (upwards of ten) but let's just say I was pissed at how many times they tried before they decided they couldn't get a vein themselves. This poor kid wasn't even 24 hours old yet and he'd experienced more pain than I wanted him to in a lifetime.
Later that morning I got up and started moving around. A resident pediatrician came to check on Carson and assured me that he didn't see anything wrong. While he was there my phone rang. The caller id was one from a friend of my mother's. I decided to let it go to voice mail. Let me be clear here- I appreciate the thought BUT when I listened to the message it was a joke. "Your mom told me. I'm so sorry. If you need to talk I'm here." I almost laughed out loud. This was a woman whom I hadn't spoken with in YEARS. She didn't have a child with special needs and as far as I knew didn't know anyone with one either. What on earth could she have to offer me?
Mike showed up at noon ready to take us home. They came and took newborn pictures and then the woman came to administer the newborn hearing screening. He failed. Big surprise, right? She said sometimes babies had fluid in their ears and it distorted the results so I should make an appointment with an audiologist in 3 weeks to see if the fluid had gone. Great. Something else to add to the list of people to call when I got home. It was beginning to become overwhelming to me. They decided that they should call social services to come see us before we left and I was reluctant but apparently that isn't a decision you can make. If they feel they need to come-they're called. Lucky for me though I was discharged before they even made it to my room.
So we were off with our new little bundle with more questions than answers. More questions than we will probably ever have answers for.
No comments:
Post a Comment