We found a wheelchair and made our way back down to the NICU, laughing a bit over David’s bad wheelchair driving skills. We scrubbed in like pros and went in to see our sweet Violet. We told the nurse her name. She smiled and wrote it on her name tag over her bed “Violet” with a little heart. Violet looked a little better. The swelling was down. The nurse was emptying the fluid out of the container before shift change and said that she had drained well over 100 ml of fluid since she’s been there. We talked to Violet and again, every time she heard our voices her numbers improved. I cling to this fact about her life outside because it means that she knew us – without a doubt – she knew we were there and that we loved her. My heart would just break in two if I thought she didn’t know us.
We couldn’t stay long because the NICU shut down at 6am for shift change, so we told her we’d be back and went back to our room. I pumped a few drops of milk and sent them down to the NICU with David. When he came back he said that there were a bunch of doctors and nurses around Violet and that it looked like she was in crisis. I chalked it up to being shift change and rationalized they were exchanging info about her status. That ended up being so far from truth as we found out a few hours later when then neonatal doctor came in to give us an update. He told us that they suspected Violet had Down’s syndrome and had done some blood work to confirm. He wanted to know if we had known. We did not. He asked if we’d had an ultrasound. We told him we’d had one at 20 weeks and that everything was normal. He asked if we had any other children. I said “Yes, a 5 year old daughter.” He asked if she was healthy. I was so offended at the time. I felt like he was blaming me – that perhaps I was incapable of producing a healthy child. Then has asked about my prenatal care with the midwives. Again, it felt like he was trying to place blame somehow, but as David and I replay that doctor’s responses we are beginning to wonder if he wasn’t afraid. Perhaps he’d never seen a baby like Violet before – living, but with her extensive health issues. He went on to tell us that she was a very sick little girl. The flurry of activity David had seen earlier was Violet crashing and needing resuscitation. She did not respond well to the hemoglobin procedure and her oxygen saturation was poor again. The fluid was off her lungs but they were not improving function. He didn’t seem to know what was causing the problem, but they were going to run all kinds of ultrasounds and scans and stuff on her heart and brain. My memory of what he told us is so obscure now. But I remember the severity; the heaviness of what he was saying and how it felt like all the air had been sucked out of my lungs and the light out of my vision. I remember him looking me right in the eyes and saying, “Do you understand what I’m saying to you?” I nodded and said “yes.” Did I? Did I have any idea what he was telling me?