Preemie Survivor Guilt

February 25, 2013

When we talk about the NICU, we can’t share our story without sharing the story of a little boy named Ethan. Ethan was born a day after Kylie and was 11 weeks early, while Kylie was 10 weeks early. I am the type of person that when going through certain experiences, I like to find someone immediately to be able to talk to about it who knows what it’s like to go through the same thing.

Ethan’s parents quickly became our friends as Kylie and Ethan had incubators right next to each other. Our feeding times were close to the same so we always looked forward to seeing them to catch up on our babies’ progress, share some laughs over the silly things they would do, and dream about our babies’ future. We would talk about their first birthday parties and how we should do them together as they were so close in age and were clearly turning into best buds. When Kylie would cry, Ethan would cry and vise versa. It was like they had their own little language and couldn’t wait to get out of the NICU and be home with their parents.

One day we came in to the NICU and Ethan’s dad was there. He said things had taken a bad turn over night but couldn’t really tell me much. I went to see Kylie and knew I’d get the full story that night when we saw them. We came back later that night and saw Ethan full of tubes; he had just had surgery. He had contracted a horrible disease called necrotizing enterocolitis  (NEC). This often-fatal disease attacks and kills the baby’s intestines. Ethan had surgery to remove the diseased bowel and they would know more details within about 17 days as to how bad the damage was.

We were devastated, but were so hopeful that he would be okay. Seven days later, we came into the NICU to find out that Ethan was not going to make it. Our hearts were broken. Seeing his family and his parents that we adored so much go through that is by far one of the most painful experiences of my life. We were so thankful and happy that Kylie was okay, but it was so hard to be grateful and excited about her milestones that day and the coming days when we knew they were in so much pain.

The NICU experience was not hard for us because Kylie did great.  She ‘graduated’ much earlier than expected and was never ‘sick’. Our experience was life changing and very painful because of the things we saw. We loved little Ethan and are still close friends with his parents. We are so grateful to have them in our life and are so blessed to have been the chosen few that got to meet Ethan and get to know him. He will be in our hearts forever.