Thursday, March 15, 2012

It's been a busy week

Dear Avery,
    So much has happened since I last wrote to you.  It's really hard to believe that it has already been 4 weeks since your birthday.  It still feels so fresh--I miss you Princess.
     Your daddy and I went to a geneticist last Friday to learn more about your diagnosis.  We still don't have any definite answers, but the doctor's best guess is that you did in fact have Thanataphoric death seeking Dysplasia.  They only had my amniotic fluid for testing since we denied an autopsy while we were at the hospital.  They didn't test the FGFR3 gene which can distinguish more efficiently between the different dysplasias.  There is a chance that there will be enough DNA left for them to figure it out for sure, but nothing they do is going to bring you back. 

     Your chest was too small sweet baby.  Nothing that they can test for will ever change that.  There is still a small chance that your condition is an inherited trait that could also be passed to your brothers and sisters.  If that is the case, there is a 1 in 4 chance that each of your siblings could have the same thing. Answers or not, I am happy with our decision to leave your body untouched. I found so much comfort in the fact that we were the last ones to dress and swaddle you at the hospital and then again before your funeral.  No amount of testing could be worth more than those precious moments that we had with you.

     On Saturday we went went to the St. Patrick's Day Parade.  It was our first time really going out since we lost you and I had a lot of anxiety about it.  What if people didn't know that we lost you?  What if I got upset and had nowhere to go?  What if I just wanted to cry in the middle of all of those people?  I was just wary of the whole experience.  In the end, I am really glad that we went.  It was nice to be out of the house with friends and it was a good day overall.

     Your Aunt Kelly went to the doctor on Monday to see your new cousin for the first time.  We found out that she and your Uncle Brian are having a healthy baby girl!  We are very excited about the new addition.  It brought back a lot of memories and some tears though since you girls won't get to grow up together.  Please watch over your Aunt Kelly and your little cousin as she continues to grow and prepares to meet us.

     I went back to Dr, Link on Tuesday for my postnatal checkup.  It was hard to be in the office knowing that I wasn't going to hear your heartbeat on the doppler.  Everyone there was so kind and they all wanted to see your pictures.  I am healing really well, so Dr. Link released me to start exercising again.  I am definitely ready to get rid of this squishy stomach, but I am strangely attached to my newly acquired "tiger stripes."  I am sure I am the only woman in America to actually smile because of stretch marks, but they make me think of you and the time that you were in my tummy and that makes me happy.  There is something comforting about the fact that I will always be a physically different person because of you.  (However, I might need to graduate to a tankini this year!)

     It has really been bothering me that your grave is still unmarked.  I went to look at headstones a couple of weeks ago, and none of them were special enough for you.  I am going back to try again tomorrow, but even then it will take up to 3 months to come in and be placed.  I decided to make you a temporary marker so that people who pass by will know that you are there.  I'm pretty sure that it is against cemetery regulations, but I painted a colorful sign and wooden tulips and placed them out at your grave on Wednesday--hopefully the grounds crew will let them stay there for awhile.

     While I was sitting at your grave crying, another lady showed up at the cemetery.  She walked around to a couple of graves and placed flowers on them and then came over and sat down with us.  She asked about your story and then she shared her story as well.  Her son was in a bad accident when he was 17.  The driver of the car was trying to make it fishtail and ended up flipping off a cliff into a small pond.  Two kids, including the driver, made it out, and two kids, including her son Matthew, drowned.  As I did the math, I realized that Matthew and I would have been the same age.

    The lady's name is Judy.  She lives in Mt. Washington, but she works in Louisville on Wednesdays.  Every Wednesday, she stops by the cemetery to bring flowers to the graves that look like they have no visitors.  I know that she will be coming to visit you now too sweet baby.  We sat and talked for hours before I left to come home.  Thank you for bringing her into my life sweet girl--I needed to talk to her yesterday. 

                                                  I love you Sunshine,

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