Thursday is a bit of a blur. I went to Children’s but only had 4 hours until my medicine would wear off and I’d have to leave him again. I got to hold Simeon for 2 hours before he went into surgery. He laid on my chest and honestly, it was the best and the worst. Simeon wasn’t in my arms more than a few seconds before he reared up his head and face planted on my chest, rooting around and snorting like crazy. Then the snorting turned into an angry screaming cry. The nurses said he was hungry and that smelling me made him want to nurse– but I wasn’t allowed to try to feed him since he was about to have a procedure. Isn’t that rotten? I have this beautiful hungry baby but I’m not allowed to feed him. Even worse, holding my son was causing him so much frustration. It took a long time to get Simeon quiet and calm but the whole event left me feeling as helpless and aggravated as he did.
Then came his back closure surgery. I predicted that someone would need to drag me kicking and screaming away from my son, but there was a certain numbness to the entire experience. I felt outside of myself, like I was watching someone else lead their baby into surgery. It wasn’t a calm feeling and it wasn’t exactly peaceful. It was a nothing feeling– like it wasn’t happening at all. Right or wrong, I think I was protecting myself from how scary it all was.
My sister and I went back to my hospital room to wait for news. The procedure was supposed to take about 4 hours so I was thankful that my meds made me fall asleep for the first 2. Unfortunately, the surgery took much longer than expected. The surgeons had a difficult time closing the opening and had to try a few different techniques before they landed on something they felt confident would work. Simeon’s little baby skin was just too delicate to seal over the defect. It was almost 6 hours later when I received the call that Simeon had made it though the surgery alright and had returned to the NICU. That’s when I fell apart. I hadn’t connected with the situation when Simeon went in because it was too scary, but now that he was safely through I kind of went bananas and had a nice big weep-fest. I even scared the nurses who rushed into my hospital room thinking the surgery had ended badly. It was all very Grey’s Anatomy– nice and dramatic but with fewer good-looking people.
Greg and the family came back to my room where I demanded to see post op pictures. I wanted proof that he was safe and I wanted to see what his back looked like. As I asked, I could see my family looking at each other across the room. Greg patted my knee, “Let’s wait till after we get something to eat…” Uh-oh. I thought it couldn’t be too bad but seeing everyone so hesitant to show me pictures sent me into a panic. How bad were they? How bad did he look?
Then I saw them and I understood their hesitation– Simeon really did look terrible. He had been placed on a ventilator since the pain meds suppress his respiratory system, so he had wires and tubes coming out of his mouth. His closed eyes were puffy and red and the scar on his back looked like a giant painful star. I cried for my son. I cried for the pain he would feel, and for the fear I felt seeing my child like this. I know the surgery wasn’t an option, but I felt as though I had sent my warm, cozy child into surgery and he had come out battered and torn. I hated Spina Bifida.