"There is no foot so small that it cannot leave an imprint on this world."

I don't really know where to begin... I am having a baby girl. We are planning to name her Aven Hope. I love her. We are at week 31. I don't know how much longer I will get to keep her.

On July 9th at when I was 15 weeks pregnant. I received a call from my doctor telling me that our baby had tested high risk for what is called Trisomy 13. I didn't even know what that was. I guess part of me wishes I still didn't know anything about Trisomy 13, but then I wouldn't know part of what makes our Aven so very special and I wouldn't want that either.

This is the first thing I never read about Trisomy 13 and it was basically what my doctor told me over the phone that day:

"Trisomy 13, also called Patau syndrome, is a chromosomal condition associated with severe intellectual disability and physical abnormalities in many parts of the body. Individuals with trisomy 13 often have heart defects, brain or spinal cord abnormalities, very small or poorly developed eyes (microphthalmia), extra fingers or toes, an opening in the lip (a cleft lip) with or without an opening in the roof of the mouth (a cleft palate), and weak muscle tone (hypotonia). Due to the presence of several life-threatening medical problems, many infants with trisomy 13 die within their first days or weeks of life. Only five percent to 10 percent of children with this condition live past their first year."
http://ghr.nlm.nih.gov/condition/trisomy-13

Out of everything my doctor said that day on the phone what I remember most were the words: "Most babies don't survive."

I can't describe or even begin to describe what it is like to be told and to come to realize that the baby you are carrying might not make it, that your baby might die. It is a pain unlike anything else. A deep, deep feeling that overcomes you and reaches a place inside of you that you never knew existed. I have 3 other children. This one was to be our last. This little girl I thought was going to make our family and my heart complete - not leave a hole that can never be filled. I have come to realize over the past couple months that my little Aven will and does make me complete but just in an entirely different way then I ever would have wanted or chosen for myself, for our family or imagined would ever be possible for us.

The closer I get to the end of this pregnancy and to the end of the journey here on earth with my little Aven growing inside of me the more I have come to realized what a gift she truly is.

We (my husband, family and I) have been very private with this matter to up until this point. Very few people know that anything is wrong and this is way that we wanted it to be. Also, those that do know I haven't always been the best at updating and telling you what is going on. Some call, text, or try to talk to me and sometimes it is easier to just not talk about it with you because when I feel I feel too much and it is too painful. So I have tried to keep this as private as possible. I guess I thought it was easier that way. It is so hard to talk about. So hard to go through. All the aching pain, all the tears, all the times I have thought that this would be the day that she would leave me and my heart would break forever, and all the days that I have tried over and over again to just enjoy the journey, this pregnancy, and the time I have with her - I thought have been better spent in private because it would have been too hard for everyone to know. It would be too hard for you to see that part of me, the deepest, most inter reaches of my heart and soul, all my struggling, my imperfections in dealing with this.

But the past couple weeks, I have felt something different tugging at my heart that Aven's story needs to be shared. There are some really brave people out there who have share their Trisomy 13 stories and their hearts and their precious babies with others and I have read them. They are sad, they are heart breaking and yet heart healing at the same time. I have seen their love for their babies and I have thought to myself that reading their stories and seeing their babies, as sad as it is or difficult it has been, has helped me feel not so very alone.

There is a quote that says: "There is no foot so small that it cannot leave an imprint on this world." I feel this about our Aven. The thought that she could die and leave us so soon and that no one would have had a chance to know how wonderful, how precious, how special she is to me and that no one would ever know how much I love her is worst then the thought of having everyone know. I want Aven to be remembered. I want her to be a part of your life, a gift for you, just as she has been for me. And even if she doesn't leave an imprint on your world, she has on mine and so I am going to try to share her with you. I know it is not going to be easy. I know it will hurt. But I love her and I want everyone to know that. I want to you know about my baby, my little one, my Aven Hope.