Sage was getting the charcoal and we realized our time was running out with her here. We called the pastor (we are not necessarily religious people but welcome anyone sending positive healing energy our way) and family. We went home that morning to prepare for our gathering that evening. We looked in Sage's closet to find a dress for her baptism. I had the choice between a cute white little dress and an equally cute but larger green and white gingham dress with white daisies on the waist. When we held them up, standing in tears in her room, we couldn't image her fitting in the tiny white frilling frock. She just seemed so huge in the NICU. When we got the NICU she was actually undergoing echocardiogram testing and we had to wait. We finally got to go and dress her in the first and last dress she would ever wear. It was HUGE on her!! Because she was roomed next to tiny 1 lb babies, her 6lb 14oz body dwarfed them and made her seem so much bigger. We all gathered around her, blessed her, and were blessed by her. We all felt her presence around us, content to be joined with something bigger than us once more.
The charcoal worked. In one night Sage's levels were below the required levels, she was at 12! The donation process was back on track. We were so excite we could hardly contain ourselves. It is kind of morbid when we reflect on it, excited because our daughter would die sooner? It is really odd how we shift our focus when we have a goal that looks different from what we initially plan on. That morning, Saturday, we called Now I Lay Me Down To Sleep to make our apt. for the photographer to come take our family portraits that evening. That night would be our last night with Sage as a family. Her tests were all being completed and she was being run through the donor registry for a match. She was scheduled for her surgery in the morning.
We brought her post-surgery outfit and prepared ourselves. The photographer came and it was an amazingly beautiful experience. She posed Sage and took hundreds of shots. The nurse even got into the experience, posing, directing, and enjoying the time as much as we were. I told her she has missed her calling and had a second career all lined up. She also helped put together the memory box, remade numerous foot and hand prints, and made a foot print imprint on clay. We also took a lock of hair. The most beautiful lock of hair ever.
Late that night our time was over. It was time to take our older daughter home and get ready for the next day. With our bags of "parting gifts" from the hospital we hugged the wonderful nurses and the amazing organ donation nurse. It was the hardest walk out of the NICU we ever had, we knew we were never coming back...at least not for Sage. The thing that will stay with me is the looks we got, some looking with sympathy and apparent hurt, some looking with disbelief, and others not able to look at all towards the shattered couple cradling a teddybear and a backpack of their dead baby's clothes. Clothes that smelled like her, like betadine and pampers. Clothes I still press to my face hoping to catch a faint whisper of her skin. It is fading fast and I can't burn it into my memory enough. Yet, I digress.
We were told that surgery could take place from anytime between 2 am until late the next day but hopefully after 6 am. That night neither of us could sleep. We held eachother and cried, much like we had every other night since Sage had been born, 4 days before. We received a series of phone calls telling us that it would be a little longer to start the surgery, a few more hours, just hold on a bit longer. The phone rang and we got the best news we had received during the entire time. Sage had been matched with a baby boy who needed a heart and a little girl who would be dead without a new liver in 48 hrs. Sage was a perfect match for both. Her surgery would take place take place around 10am, unless they get bumped by a trauma. Of course, we did get bumped.
My mother and I wanted to go see Sage after the surgery, something that we were informed wasn't normally asked for. My dear husband wanted to but didn't want to remember her as being cold and pale. I was hesitant about that as well but didn't want to miss the opportunity to at least see our daughter without tubes and wires. I had to hold her at least once without worrying that she would crash. The nurse called and said that we could come at 2 pm to see Sage. We walked into the lobby and the OPO nurse came out to meet us and bring us back to the OR. They had set up the physician charting room just for us.
(When we walked through the OR doors my dad's cousin was there to greet us with a big warm hug. She is intimately involved in this for reasons other than family ties. She had a 6 week old daughter who died waiting for a heart. She also happened to be on staff at the hospital where all this took place. She just couldn't stay away, she had to be there for Sage, she had to let Sage know she had someone who loved her there in the OR with her. I can't begin to say how much that meant to us and our family. )
We were led into the small room just off the OR and in a small isolette was my daughter. I couldn't look at first, not wanting to see a blue or discolored rendition of my once pink little girl. My mom peeked in and said, "it's ok, she looks beautiful". She did. She was dressed in her outfit we brought, wrapped in her blanket with her signature pink hat. They had placed her in a warmer and she still had a bit of pink in her. I just wanted to hold her and snuggle her. It was heaven finally holding her close like that. It was everything and more. I finally let her go to my mom who snuggled and talked to her. Slowly she started to lose her color and warmth. I didn't want to have memories of her blue anywhere in my mind. It is a cruel tradeoff. I finally said it was time. The nurse from NICU and the OPO nurse had bought Sage a bear and a bunch of daisies. They gave it to us and we made our way out. That was the last time I saw my daughter. As long as that week felt, I realized there never is enough time.