From the beginning

Ok, so I am finally breaking down and doing a blog. I realize now I should have started this a while ago. I put it off because of the time it takes and I am just not the best writer, especially with the distractions of a crying newborn, a two year old that requires constant attention and talks non-stop :), lack of sleep etc... But I am going to give it a go.



So, it all started when Ben and I went in when I was 30 weeks to get a 3-D Ultrasound just for fun. We had come across the pictures from when we had it done with Kensley and realized we would regret it if we did not do it with this baby. We went in the Tuesday before Thanksgiving and Kensley came with us. We did not have a name for her yet. She was beautiful! She had chubby cheeks and nice plump lips. Kensley loved hearing her heartbeat. We thought the lady was just being sweet to Kensley because she kept going back to look at the heart and let her listen to the heartbeat again. I remember thinking for a minute that it was strange that she kept looking at the heart when we were only there to see what she looked like, but when she didn't say anything I just forgot about it. We left there more excited than ever about our sweet baby girl. The next day we had gone to my parents house in Snellville to get ready for Thanksgiving when I got a phone call from my OBGYN. They called to tell me that the lady who had done our 3-D Ultrasound had called them because she had seen a "mass on her heart". When I heard this all I felt was pure shock. I had been told all along that I had a perfectly normal healthy baby. I thought it had to be a mistake and the lady did not know what she was doing. When I asked the nurse at my OB what it could be she just said they had not seen the ultrasound and there were a million different things it could be. She set up an appointment for Monday with a Perinatal Specialist and told me to try to enjoy my holiday. That was on Wednesday....I had to go all the way to Monday knowing nothing and worrying about all the what ifs. It was not a fun Thanksgiving! I just kept busy and did lot's of cooking and Christmas shopping with my mom. By Monday we had convinced ourselves that it was nothing.

Monday morning finally came. This is when we finally decided on Kallans name. After the ultrasound we were sitting there waiting on the doctor to come tell us what it was if anything. I really wanted the name Annabelle and Ben wanted Kallan. Kallan is Gaelic for "powerful in battle". I looked at Ben and said "if it is nothing her name is Annabelle, if it is something it will be Kallan. She will need a strong name". Well, her name is Kallan. It was something. The doctor came in and told us our baby had 3 tumors on her heart and there was an 80% chance our daughter has a rare genetic disease called Tuberous Sclerosis Complex. We had no idea what he was talking about. We had obviously never heard of TSC. He went on to give us very non-specific information about the disease and then rushed us on to meet with a genetic counselor. I'm sorry if anyone reading this is a genetic counselor, but that was the biggest waste of our time ever. She knew nothing about TSC other than what she had read on an article she had just printed of the internet for us. We left the doctor having no clue what we were dealing with. It was the worst feeling. I remember Ben and I going to lunch afterwards and just sitting there staring at each other. Neither one of us knew what to say or think. The next week was all just a blur. We went back to my parents and Ben immediately went online to learn more. I was scared to learn more. I did not want to know. I heard that we could be dealing with learning disabilities, mental retardation and autism and that was as far as I could get. I did not want to know how bad it could be. The genetic counselor had told us she knew of one girl who had TSC that was an attorney now and lived a completely normal life. I just focused on that. I wanted to focus on the best case scenario and convinced myself that would be us. Ben on the other hand wanted to know it all. The good, bad and ugly. He stayed on the computer 24/7 and learned everything there was to learn. Watched videos and reached out to others with TSC. He was really good at realizing what I could and could not handle and only gave me little bits of information at a time. He continued to do this throughout the rest of my pregnancy and just let me come to terms with the diagnosis on my own.

We were told it was TSC on Monday. We had to meet with the cardiologist on Thursday. We went into the cardiologist expecting to just learn how many tumors there were on her heart and whether or not she is having heart failure. I laid there for over 2 hours while the doctor examined the heart. Finally, he was ready to tell us his opinion. He told us he only saw one tumor on her heart. Two of them were actually connected and the third on was just "feedback" from the ultrasound. This meant that instead of there being an 80% chance she had TSC there was more like a 30-50% chance she has TSC. He thought it was just a single tumor that would have to be removed sometime after birth. We thought this was the best news we had heard all week. We actually thought it was a "miracle"! We were so happy that we had a chance for it not to be TSC. We went home feeling so relieved and basically celebrated the fact that she had just one massive tumor on her hear and not three. It was a good two weeks, but in the back of my mind somehow I just knew that the celebration was going to be short lived. I think I knew all along it was TSC. I just did not want to face it yet.

So, two weeks later when I was 33 weeks we went to the cardiologist for a follow up appointment. We had to see a different cardiologist because we missed our original appointment because I was in the ER with dehydration from food poisoning. We went in hoping and praying it was still just one tumor. No such luck. The doctor came in and basically said there was another tumor there, she had Tuberous Sclerosis Complex, Merry Christmas. He could see the devestation in our faces and did not understand it. He said "What, it's a better diagnosis. She is going to live". We did not see it that way. We saw it as we had faith that our baby could survive a one time surgery. We did not want her to have to face a lifetime of struggles. To be honest we felt sorry for ourselves as well for having to deal with the struggles that this disease was going to cause. We felt like life as we know it is over. Now I feel so selfish for feeling that way, but you can't control your emotions. You just never think something like this will happen to you.

From that point on my life consisted of many doctors appointments. I had to drive to Atlanta twice a week every week for Perinatal appointments to check her heart for more tumors and heart failure. Plus I had my regular OB appointments. I went into complete denial that it was TSC. I was convinced that the cardiologist was wrong and if he was not wrong and it was TSC it was going to be the most mild case of TSC ever. Ben was the exact opposite. He was reading horror stories online and believed that Kallan was going to be living with us until we die. I guess this is just the difference in how men and women handle things.