Saturday, June 18, 2011

About me and Sofie...

For those of you new to this story, I wanted to take a moment to tell you a little bit about me. You see, I am just like you. I am 34 years old, have a wonderful husband of 3.5 years, we have 2 dogs, and live in the house where my husband grew up, in a wonderful community. I am a critical care social worker at a local children's hospital where I serve in the Pediatric Intensive Care Unit. I am just like you. This year we had our first child, a beautiful baby girl, named Sofia. Throughout my pregnancy I grew increasingly excited to meet her with every passing day/hour/minute! My bond with "Sofie" was unlike no other. Our worlds were about to be changed forever. We could not wait to welcome her to our family. Her room was perfected & her wardrobe was plentiful!  I am just like you.
Except things didn't go as we had planned. The day that we delivered Sofie did not bring the joy-filled moments we had expected. After a very fast and exciting experience of labor, came words, phrases, moments...a life that we could never have planned for. Upon her final push into the world, everything in the room changed. Smiles turned into concern, color flushed out of everyone's faces...Sofie wasn't breathing. After resuscitating her and putting her on a ventilator, we learned that she would need to be transported to the very children's hospital where I am employed. I was devastated. Not only did I not get my baby girl thrown onto my belly, I did not get to hear her crying voice for the first time....I hadn't even gotten to see her. I didn't even know what my daughter looked like.
The doctor from the children's hospital quickly came in to give us more earth shattering news. They were concerned about brain damage. This was not the life we were supposed to be living. Someone screwed up!  Why couldn't they just give us back the life we are supposed to have...rewind and then bring in my healthy baby girl!
But it is our life...our new life. After 20 days in the NICU with no progress for my sweet Sofie, we were faced with any parents' worst decision. Sofie's brain damage was so severe that she had very little brain function...even her primal brain stem functions were abnormal. She was never able to "wake up".
We had to make the decision to allow nature to continue it's course and allow her a natural death away from ventilators, tubes, and wires. On day 20 we took Sofie home with the help of hospice care and the palliative care team at the hospital. We brought Sofie home for 14 hours after which at 4:20 am on her 21st day, she left this world peacefully.
I am just like you, but I have lost a child. Maybe you have as well. Maybe you know someone who has.  Maybe you have never been anywhere to close to such devastation, I do hope that is the case. The point is...I don't look different, I still get up in the morning and go to work, I still go to the grocery store, I still do laundry, yard work, and go out with my family and friends. I am just like you, only I am the mother of an angel. My world is forever changed because of my love for my sweet Sofie. I continue to live my life...for her...I continue to grieve, grow, sob, wonder, plead, & heal. This is my journey...I am learning how to be a parent to a daughter in heaven. I am the face of infant loss, a parent's pride, of tragic heartache, and endless hope. I am just like you...