Thursday, August 27, 2009


It's not easy to blog. I want to be creative and funny but I'm not creative or funny anymore. I want to say everything all at once and put our entire story into one blog and deciding how to break things up has been difficult. I don't know where to begin. I've decided to begin with today. Today Noah is seizing on a regular basis. It's hard to watch and it happens more often than I'd like. I want to know when it's going to get better. When will he get better? He turns a year old on Saturday. A year ago today Todd and I were going to a meeting. A meeting with 20 people in white coats all with IQs that made me jealous. They all looked at us as we sat down.  I think some had sympathy for us.  This is why:  they wanted to take Noah at 27 weeks because his tumor had gotten so large and was taking blood from his body. His heart was starting to work too hard to keep up. Our amazing surgeon explained the procedure. It was the first EXIT procedure for an SCT.  They wanted to keep Noah attached to the placenta while they tried to remove the bulk of the tumor and then finish delivering him.  Deliver him after he was intubated and had an IV.  We were numb. We met with neonatologists. They told us the worst case scenarios. The first 24 hours were crucial.  He could have brain bleeds.  He could die.  We cried. I got a steriod shot in my arm to help Noah develop his lungs (he had exactly two days to do this). We went home. It seems like a lifetime ago and in some ways it was and in many ways it was just the beginning.  This has been a tough year.  It has been a wonderful year.  It's been full of heartbreak and joy.  Mostly joy though.  I found out what true love is this year.  I also found out what "love at first sight" really means this year.  My little Noah is a true gift.

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