I fall back asleep for about and hour before breakfast comes in. I can't eat..much. We get up and slowly get ready to head down to NICU because they are doing rounds at 9 and we need to be there to hear what they are seeing, thinking, diagnosing. I hate that i didn't sleep in NICU with her. I hate more that she didn't sleep in my bed with me.
We got down to NICU in time to see/hear the team talking about her. About 6 interns/docs standing around her unit, speaking softly in terms we don't understand. "mumble mumble MITRAL VALVE...mumble mumble VSD...mumble mumble TRISOMY 18." Wait..that one we know! We had both just been staring at our girl in her box, just feet away, but we were unable to get to her. When we heard "looking like Trisomy 18, we'll know more in 24 hours." It was like we could each feel each others heart drop into our stomachs. He looked into my eyes...and whispered..."wasn't expecting to hear that again." It was like we were running a marathon, and someone had put out trip wire. We fell flat on our faces. As soon as they dispersed, I ran to her side. We talked for a moment, Cana and I. She was sleeping. I told her i missed her, was sorry i didn't stay with her longer in the night. I held her hand. Touched her feet, her head, her ears. She looked different in the morning. As soon as they said T18, i could see it so clearly. Up until then, i just saw tiny features and crooked ears. That was a rough moment.
We met the new nurse, Amber.
We left to get something in our stomachs, some coffee and a bagel. We sent out a text with what we'd heard, and then offered that visitors were not welcome until further notice. We ate outside of NICU and then headed back in. Around the corner from NICU was the milk station. I wondered if I'd be able to pump and i wondered if I'd need to. I had that thought 15 times in those 2 days we were there. When we got to our girl, a Dr. Ivory and another nurse asked us to meet. They had the results from Cana's heart echo from the night before. We sat in a tiny office within the NICU. Dr. Ivory started out by drawing a heart, and how it was supposed to work. I smiled. He noticed. I stopped him and pulled out the drawing/write up that Dr. Arne had given us in July at my first echo. (I remember Dr. Ivory was very relieved. He said later that that meeting with us could have been so much harder on HIM and he was proud of us and proud to know us and told us we were very brave and that if it was he and his wife having to go thru this, he thought they would live it the same way. It felt so good to know the dr. who is overseeing your daughters life..is a Christian. We could see he was touched by our faith. It strengthened us to know God would use us in this.) As we looked at the paper together, Dr. Ivory confirmed everything Dr. Arne had drawn. I had made it my mission to understand the workings of each abnormality as best i could and it seemed to help me.....to let go, to see that we'd given her every chance. There was no mention of T18 at this meeting. The genetic testing would take awhile.
We stopped back by the computers on the way out, Dr. Ivory showed us Cana's echo, confirming what we'd seen back in July. I asked Dr. Ivory if he knew/met the Cantrell's. Charlie and Ali's Cate had been there just a few months before, but in the cardiac picu. (i think.) Dr. Ivory lit up. He said "Cate!" I smiled. Charlie and Ali's strength was before us as was their brokenness. In their sacrifice and surrender, they taught us so much. Dr. Ivory mentioned their blog, asked how they were. It was strengthening to have a connection to the Cantrell's thru Dr. Ivory.
After this meeting, we stayed with Cana at her station in NICU. I asked if I could hold her and Amber (our nurse) had to help because of all the stuff hooked up to our girl. Mostly it was the line from her belly cord and the oxygen. I sat in a chair and held her for almost an hour, Mitch stood and watched as he only wanted that time to be mine. I've never shared the video below. it's one of my favorites, minus my singing. :) It's the song i sing (or hum) to travis every night at bedtime. I realized during pregnancy that when i would rock travis at night, it would probably be the only time i would have both travis and cana "on my lap" together. So i couldn't think of anything else to do when i rocked her for the first...and last time. Her oxygen levels would drop a lot during this time...because i would try to hold her closer or i would feel I was moving too much and the o2 would come out of her nose. I panicked a lot, just trying to enjoy her but i was worried i was hurting her (suffocating). She would cry out when the o2 would drop.
After that hour, we left NICU and found our friend Kelly.We took her in to meet Cana. We didn't stay long. During this time, I asked Mitch to text a few and let them know it was ok to come out to meet her. Kelly came back to our room with us for a bit to rest and then my mom came out. We filled her in and went back to NICU and we met Dr. Nelson. He asked us to meet with him and Dr. Ivory about what our next move would be. So mom went in to see her granddaughter and we went to a meeting room outside of NICU.
It's this meeting that i can hardly remember...i have huge holes in my story at this point. I'll just share what i can recall. We sat across from Dr. Ivory, Dr. Nelson and what i believe was like an HR person. It was a big meeting table. There was a phone, a big white dry erase board. Not much else. They told us their specialist was 99% sure it was T18. But that the testing would take a few days. There was no surgery that would save her. They would do whatever we wanted. The technology was available to us but we already knew we wouldn't be putting her thru any. We asked if we should wait for the genetic testing to come back before we made any decisions. They said no. They knew. We asked what would happen next. With comfort care, they said it was up to us when to turn everything off. They would give us a private room to have our time with her and I asked how long we would have with her after the machines turned off. Dr. Nelson said prob. a few hours. Maybe 3, but there was no way to know for sure. I asked if she'd have any pain. He said with comfort care, they would make sure she didn't. (this meeting was much longer than i explain it here, but like i said, there is a lot i can't remember.) Mitch and I asked for some time to talk about what we wanted. They left us in the room. All i could think was "oh crap..people are coming up here to meet her. We need OUR time with her. We have to call everyone and tell them not to come out." I felt so bad. We decided that whoever was there already, we would take them in to meet her...and we would call Fr. Bill Young, seeking wise counsel, to make sure we weren't giving up on her. That just because the technology was available to us, didn't make it God's will for her, for us. I went out to see who was there, and mitch called Fr. Bill and called those we thought may be coming out. I walked out to see Patsi, Bethany and Derek and Elizabeth. Patsi and Bethany are dear friends (mother/daughter), Derek is Cana's Godfather, and Elizabeth is my best friend. My mom was still with Cana.
*mom told me later that Dr. Nelson went in, and told my mom that she must have done something right with me, because my faith was admirable. Praise God.
We brought Patsi, Bethany, Derek and Elizabeth in to meet her and bless her if they wanted. We explained what we would have to do. Asked them to understand we would have to ask them to go so we could have our time with her. Fr. Bill arrived within 20 minutes and we went in to see her.
*i will post this today and leave the remainder of our journey WITH Cana for tomorrow..or later. if you are still with us, thank you. I know this is a long story/read. I'm honored if you are following along.