Where to start? Well, first of all, we’re all just fine. Darwin is happy and healthy, Leah is happy and getting rounder by the day, and I’ve started my new job (!!!) and love it. But of course there are other things happening in our lives and in the lives of those we love as well. I’m in this place where my family that I love and lives all the way on the other side of the country is going through something that sits squarely on the hard/sad/frustrated/angry/overwhelmed side. I’ve been holding onto information about our sweet nephew for a while, trying to decide how to talk about it. It isn’t my story, but it’s affecting me deeply, so I’ve decided to toe the line between not sharing information that isn’t mine to share, and lightening this load by writing it down.
Our nephew is three months old. When we learned of his birth, and soon after that he was not well, I had crushing doubts that we would still have him with us at this point. His due date was two weeks ago. He’s eating, gaining weight, being cute. He has a big brother who adores him. Darwin loves to point out photos of baby “Pen-ley” on the photo app we have for them. He also had a brain bleed sometime in his first few days of life that resulted in several neurosurgeries, the latest of which was today. Everyone says the NICU is a roller coaster. He was days (hours?) from discharge when they discovered what would turn out to be the reality that his first surgery was not successful at relieving the fluid buildup in his brain. He showed no symptoms, and it was only an MRI at the point when they were ready to discharge him that brought the problem to light. My heart breaks for my brother and sister-in-law. They have been his parents and his advocates, while also loving and parenting their 3 year old, and working. If this had happened before I was a parent, I think my reaction would have been different. Now I think about it and just cry.
So there. That’s what I’ve been holding onto for the last three months. I’ve spoken about it with a few friends, but not at length. This doesn’t go into the details that should not be shared because, like I said, most of it isn’t my story to tell. For those of you reading…have you had a NICU baby? What was the most helpful/least helpful thing to hear/receive as you were taking care of your child? Please don’t share loss stories, I can’t handle that at this point, but I would love to hear your success stories for those with NICU graduates.