Trip to St. Louis to visit Baby Ben

We went to St. Louis to visit Baby Ben in the hospital the first weekend in May and got to see him when he was 5 days old. Ben is Mike’s sister Karen’s baby who was diagnosed with Hypoplastic Left Heart Syndrome in utero. We had been “on call” for the trip and thought it would be after his first surgery; however, after Ben was born they determined he wasn’t a candidate for the planned surgeries and was placed on the heart transplant list. While we were there Ben was pretty stable, recovering from a bowel condition.

I had never been to a Cardiac ICU at a Children’s hospital before, but it’s a pretty scary place. Only two people are allowed in the room at a time with Ben and no children are allowed, except siblings. There are many families camped out in the waiting room, with blankets and pillows for sleeping. Children’s is a very nice hospital and Karen and Greg are lucky to live so close since I’m sure some families travel quite far. We check into the front desk and get picture ID stickers in order to go up the elevator. They have wagons for the kids which Colin, Carson & his cousins loved, and a very nice roof garden.

While we were there, Ben had his eyes open quite a bit so we took lot of pictures. I got a chance to hold him, but while I was holding him his O2 levels dropped which happens sometimes and is quite scary. He has a PICC line in through his nose down his throat and another in his head where he can receive his medication and IV nutrition. He’s hooked up to lots of machines and monitors but otherwise lying fairly peacefully and sleeps most of the time as most newborns do.