Last week was a blur.
We spent the majority of it in the ICU with our baby Johanna. My friend Dorien told me that kids love to hear about what happened to them when they were babies, especially the big stuff. And there’s no way I’m going to remember any of this in a few months. So rather than write a normal journal entry, here we go with a letter to Johanna.
Memorial Day of 2017 marked the beginning of a wild week for you. On Monday night, we left Rockford and drove up to stay with our friend and fellow rocker Beth Kille.* Her family lives in Madison, and we wanted to stay a little closer to the Children’s Hospital. We gave her homemade chocolate cake and wine, which I drank while everyone drooled over your cuteness.
(*It’s important that you know that Beth writes great songs. She is a total badass, and you will love her music.)
Anyway, that night, I laid you to sleep in a big bed. You snorted and snored like a maniac. Maybe that sounds gross to you, but your snorts were adorable and a fun part of your personality. I watched you sleep until about 4:30 am, when I got you up, dressed you in clean organic pjs (a cool gift from Dawn Patch whom I worked with at The Old Town School of Folk Music…please take at least one class at OTS in your lifetime), and then we drove to the hospital.
You were in a killer mood, like always. I remember you laughing while I put you in a wintergreen hospital gown. I thought that was a good sign. A nurse banded your ankle. You liked that too. The doctors took you away at 8 am. I got to see you in the ICU at 11 am.
During that time, a team of anesthesiologists put you under using a mask. They hooked you to an IV and inserted a breathing tube. Dr. Van Beek King cut through the skin of your gums and lifted all the skin. She drilled your nose bones for about two hours, clearing out your pyriform aperture stenosis and turbinates. When she was done, she had tripled the size of your airways. She inserted nasal stents, sutured them shut, then stitched up your mouth.
You woke up angry and hungry. You and I hung out for a few minutes until your Dad showed up. Then we all moved to the ICU, where we stayed for a few days. Your favorite nurse was Lindsey, and your favorite time of day was when you got to take more oxycodone. You hated your stents, but I thought they made you look like one tough chic. I was proud of you for being less of a baby that I was.
This was just one surgery of the three you had to have that month, but it was by far the biggest. We all knew you had a long road ahead with your SMMCI syndrome, but we felt really happy to have such a big hurdle behind us while you were still too young to remember. Know this: you were the healthiest baby in the ICU. For 3 days, I watched kids with cancer walking through the hallways. Be glad for what you've got, kid. We're glad we got you.