July 19, 2012

All the chatter the other day on our Facebook page about the scars our babies now carry from their NICU stays got me to thinking. Are we sweating the small stuff by focusing on these physical imperfections?

This is a photo of my son’s scar from his NEC surgeries. If I think about this scar too much, it can break my heart into a million little pieces. This scar reminds me of how we almost lost him.

December 26, 2008 – the day they diagnosed NEC

At 10 days old and less than 3 pounds, Connor contracted NEC. Five days later, he underwent his 1st of 3 surgeries – he had 20cm of his intestines removed and was given 2 ostomies. After surgery, his incision was not healing properly, so they had to put a wound vac on him for 17 days. At 47 days after his 1st surgery, his ostomies were removed and his intestines reattached. (His 3rd surgery was for ROP.)

January 7, 2009 – wound vac 

With the amount and location of the removed intestines, he was at high risk for short gut syndrome and absorption issues, but today he’s totally fine. We are incredibly fortunate. He almost died when he got NEC, but he didn’t. We are amazingly lucky.

His arms, legs, and feet are peppered with little white marks – scars from IVs and PICC lines. The surgery scar is the most significant – this scar of his is roughly 4.5″ across on his 10″ wide abdomen. He will likely carry it with him his entire life. We talk about it when he looks in the mirror and asks questions. We tell him about how it’s a mark that will remind him he’s a very strong boy, and that he fought hard and didn’t give up.

In time, his scars may fade or even disappear completely. But there are other scars I worry might never heal…

As parents of NICU babies, I think we carry the scars of our experience… emotional and mental scars. I’ll never be able to have the birth experience I dreamed about with my son. I’ll never be able to make up for those days I was unable to hold him the way a baby should constantly be held. I’ll never get over the anguish I felt those 120 long days in the NICU.  I’ll never reconcile my sorrow in leaving him behind night after night and not taking him home with me.  I’ll never be able to forget the fear and terror I felt while watching him teeter so close to death.

The physical scars my son carries are meaningless, really… I don’t want to waste any energy focusing on physical imperfections.  In the grand scheme of things, he’s alive and with us today, and in my eyes, he’s absolutely perfect. After all that he’s been through, I can’t really ask for much more than that.

July 8, 2012 – 3.5 years old