Dear Grace,
It was two years ago today on a dark stormy night, Yankee Stadium lights gleaming in the background out the window of Columbia Presbyterian Hospital. You arrived in the early morning hours on July 24, 2010. Mom was able to hold you briefly before you were taken away. That was the only time we were able to hold you without the tubes and wires that consumed your life over the next 31 days. Dylan, your four-year-old brother, could not wait to get you home.
Although you were making progress, by the 11th day, your mom knew something wasn’t right. It was becoming difficult for you to breathe and the doctor’s decided to intubate. I begun to think to myself, was that the last time I would hear you cry? For the next seven days only movements, no noises, no crying. You remained in this state for about seven days. The doctors were trying to delay the inevitable as long as they could so you would be able to withstand the demands of open heart surgery.
On the morning of August 12th your Mom and I awoke to a phone call asking us to get to the hospital as soon as possible as they were going to prepare you for surgery. The moments before I can not remember, but watching you being wheeled away, I cannot forget. I remember thinking to myself would I ever see my daughter again? How would I explain to her brother that his sister wouldn’t be coming home?
The next 7 hours were spent with the incredible Dr. Bacha to repair what he described as a huge hole in your heart. Dr. Bacha explained that during the procedure you had suffered a collapsed lung but you made it out of surgery; however the next 48 hours were critical. Your mom and I left the hospital that night to get a few hours of sleep hoping the phone wouldn’t ring during the night.
On the 32nd day we brought you home. Since the day you came home you have been improving. After just three weeks your feeding tube was gone. Another few months and you were being weaned off your heart medications. After one year, you were off your other medications. After a year and a half you were walking and now you are beginning to talk and climb. It has been the best two years of my life.
I will never regret the split second decision your Mom and I made to keep you when the prenatal test came back positive for Down syndrome. You love to sing, dance and play dress-up just like every other 2-year-old girl I have ever met. For the first two years I have yelled at you, cried with you, changed your diapers, fed you food, gave you ice cream and cookies, played with you, teased you, helped you, laughed with you, smiled at you and punished you. You are your brother all over again, just a whole lot cuter.
Love, Daddy