NICU Family Advisory Council

Before my trip to St. Croix, I attended the first meeting of our NICU's Family Advisory Council.  It's brand new, and it's a mix of families, nurses, and NICU administration. The goal is to support and advance the NICU's family-centered approach.  The first meeting was spent introducing ourselves, and there was really no time spent on any "business," but I'm sure that will come.  We had to submit pictures of our child in the NICU and then today, and tell a little about ourselves.  I have to say, though we live every single day with the effect of Charlie's prematurity- specifically his feeding issues and poor growth- I really thought I was over the emotions related to the NICU experience.  Even at the time, there were only a few occasions that I really broke down in tears (one of the first times I left at night to drive an hour home to our old house, the time they tried unsuccessfully to extubate him,  a month after his due date when he still wasn't taking a bottle).  Overall, I think I was pretty positive in general.  But hearing everyone's stories and being there to tell my own was much harder than I anticipated. 

Just looking at Charlie's NICU picture on the big screen had me in tears- much to my surprise.  He was just so tiny at 620 grams.  The message I told was one that I've recently realized makes me unique.  Most parents who tell their preemie story talk a lot about the shock of having a baby suddenly born early and the fear they had for their lives (at birth, or multiple other times throughout a  NICU stay with surgeries and infections.)  We had none of that.  I still contend that I was the happiest mother leaving the hospital without a baby.  We were told at 21 1/2 weeks that Charlie was IUGR (he wasn't growing the way he should), and there was a good chance that he would die before he was big enough to deliver.  We were sent home to wait.  At 28 weeks finally he was big enough that he could survive if he was born- the magic number was 500 grams, and I was sent for constant monitoring at the hospital.  THAT was the hard part- wanting to keep him in to get "older" and bigger and improve chances of survival, but not leave him in so long that the blood flow in the umbilical chord would be reversed and he would die. We stayed at the hospital for 2 weeks until Charlie was born at 30 weeks. 

I had weeks to get used to the idea that if Charlie was born, he would be in the NICU and not coming home, and I was thrilled to be off bedrest, so I was very happy once he was born.  I was just thrilled that he was born alive.  I never feared for his life once he was born as most NICU families do, I only feared that he'd die before he was born.  And though we had a long NICU stay (116 days), it was uneventful.  No brain bleeds, surgeries of any kind, no real issues with his eyes, no infections, etc.  We apparently drew the card for severe, long-term feeding issues, but we got lucky in many respects.

Then

Now

Everyone had a different story- at least two parents had lost a baby in the NICU, some have permanent brain damage or disabilities far far worse than what Charlie deals with, and some are now perfectly healthy, thriving children. The common denominator with all of us though was a deep love and appreciation for our Children's Hospital and the NICU specifically.   I look forward to a meaningful experience giving back through this committee.