It's not like I haven't been thinking about how to write this chapter of the story - the part after Isaac's birth. I have. I just don't know what to say. How can I describe how we felt when we finally knew the answer to 24.5 weeks of questions? How can I explain how our hearts broke when we had to see Isaac struggling to breathe? How do I say how hard it was to watch our family holding him knowing that was all they'd ever have? I don't think I can.
Thursday morning, I think it was around 5 a.m., the neonatologist who had been in the OR came into our room. He said he was certain Isaac had Trisomy 18. He hadn't seen it very much, but the condition has specific features: elfin ears, short neck, small facial features, clenched hands. CJay asked how long he thought Isaac might live. I don't remember the answer because at that same moment my mom asked me, "which one is that?" (Once we knew about the cystic hygroma, we'd all done our research - Turner's, Noonan's, Down's.) I didn't know which syndrome, but I knew one thing: it was lethal. We cried a little, but not as much as you might think. It was an answer. Not the one we wanted, but at least our months of limbo were over. At least we didn't have to wonder anymore.
It was a while before we got to see Isaac. Mom and CJay went down to the NICU before I did. I had to wait on Nurse Ratched to get a wheelchair and take her sweet time helping me up. Of course she tugged on my catheter and hit every threshold at mock speed on the way to the NICU. (Did I mention she pulled on my catheter?)
I could barely stand up to see Isaac in the incubator. I was in terrible pain, but of course I had to look at him. I had the same feeling I had when we first saw Isaac in the OR - is he mine? He was so small. The respirator was loud. Alarms were sounding. It was hot. And I could see more wires and tubes than skin. CJay said the nurse told them not to touch him. "He's mine! I'll touch him if I want!" I didn't mean to scream about it, but we should be able to touch him. We had waited like every other couple waits. We were shocked at his mere existence, and he wasn't even going to live. So I touched him. All three of us touched him.
I really don't remember many details of the rest of that day. After my dad arrived, CJay and my mom headed back to our house to shower and meet CJay's parents. I was glad Dad was with me when the doctor came to say that Isaac's lung were immature and he had crashed. We would have to decide when we wanted to take him off the respirator. I didn't know how to answer her questions or what I was supposed to ask. But Dad talked for me. He asked how long Isaac would live.
"Give us a number. Are we talking 50 days?"
"I don't think he'll live 50 minutes."
What do you say to that?
Dad didn't want me to call CJay right away. He told me to wait and let him sleep and shower so that he could handle what was getting ready to happen. He was right. It was better for CJay. The doctor came back a couple hours later to say the test results were back. Isaac had Trisomy 18. Like she had said before, it didn't change anything. Either way, his lungs couldn't support him. I wasn't afraid, just tired, angry, sore, and shocked. I couldn't figure out why it was taking CJay so long to get back to the hospital. In the meantime, Dad took me back to the NICU. I'll always be thankful that he and I had a chance to be alone with Isaac. We cried and stared at him and talked. My dad was stronger than I could be, and it was what I needed.
When CJay got back to the hospital, I told him the latest news. We went to the NICU together and were finally able to hold Isaac. I can never explain how such intense joy and sorrow can exist simultaneously. It makes no sense that we could know the outcome but still laugh and smile. Maybe some people can't, but we did.
We spent Friday holding Isaac. The NICU nurses brought him to our room and let us take turns holding him while a photographer from the organization Now I Lay Me Down to Sleep took pictures. It was bittersweet. After an hour or so, the nurses took Isaac back to the NICU. I wanted to take a break before we had to say goodbye.
It was almost 8:30 p.m. before we went to our private family room in the NICU. We took turns holding Isaac again. We took pictures and cried. Seth played music from his iPhone, and Isaac kicked and squirmed to the sound of the piano - what I had felt many times before. (CJay even told Isaac a dirty joke.) CJay and I changed his diaper and dressed him. It wasn't necessary, but it was special.
I had to be the one to say it was time to take him off the respirator. As his mother, I felt like I had to be the one to let him go. His color was getting darker, a sign that the carbon dioxide was building up in his system. Our NICU nurse and next door neighbor, Kitty, came in to take out Isaac's breathing tube. She had come to the hospital on her day off to be with us. I had asked her to be the one to take out the breathing tube. She was wonderful; I could go on and on about what she did for us.
Isaac didn't live long without the breathing tube. We were so sad, so tired, but Isaac was worth that. He was worth those 24.5 weeks of questions and worry and prayers and tears. I think people need to know that - he was really worth it.