Part of the shock of Eva's death is due to the fact that she seemed to be getting better every day. The hospital staff was fond of telling us how sick she was, even going so far as to tell us that she was the sickest kid in the PICU and maybe even the sickest person in the whole hospital. But, we always believed she'd be coming home with us. And, each day we visited her, there was some good news about her recovery and her progress.
Tuesday had been her best day since the second surgery. Her oxygen saturation was good, her heart rate was good, and her blood pressure was up and getting stronger. Her blood gases were fine too. The dialysis was making progress and it looked like her swelling was actually getting better and she had finally begun to pee. She had made a tiny bit of urine up to this point, but she had begun a consistent flow which meant that her kidneys were working again. Heck, she even opened her eyes while I was reading to her, something she hadn't been able to do since prior to her surgery.
So, when I left her that evening, I was in a great mood and felt really positive about how she was doing. I even left a bit early that night, thinking that she was in good shape and that it would do me some good to get some rest. We assumed we'd be coming to the hospital a lot for the next several weeks, so getting a good night's rest once in a while would be important. Before I left, the pediatric intensivist on call, Dr. Stotz, came by and talked to me about a general concern regarding her swelling. Her fluid retention was asymmetric, meaning that she was more swollen on top than on bottom. The concern was that this could be due to a blood clot, so they had planned to do an ultrasound to look for it and they could treat it if they found something. He also said they were going to use a clot buster to try and clear one of the lines she had going into her. The line wasn't working and they wanted to try and get it working instead of having to run a new line into her. I asked a few questions about the clot issue and the clotbuster, but they assured me that they could deal with the clots and that there wasn't any risk from the clotbuster.
I called the PICU at midnight just to check in on Eva. I really just wanted to know if they had found evidence of clots and if the clotbuster had cleared the line for them. Eva's nurse, Lisette, didn't know the results of ultrasound, but she said they were getting ready to give her tPA, which is the clotbusting medicine. There was no concern in Lisette's voice and I didn't feel worried about any of this at all. I had seen Dr. Shen earlier in the day and he said that he didn't think Eva had a clot issue at all. So, I went to bed with no fears or worries.
The phone rang at 12:40AM. My heart sank before I even looked to see who was calling. Nobody would call at that time except for the hospital. They had told us early on that they would call us in the event that her situation was bad so that we could be there with her. I answered, of course. The nurse on the phone told me that Eva was having respiratory issues and that it was affecting her heart. The staff was working with her and she might be stabilized very soon, but that we should come to the hospital. I couldn't get a sense for how serious the situation was, but the fact that we got called was enough reason for us to head over to be with her. We threw some clothes on and jumped in the car, leaving Audrey's mom to watch Naomi and Noah. We were silent for almost the entire ride, even when I ran a few red lights. I think we looked at each other a few times and I uttered something like "She will be okay" and "This isn't how this story ends", but I don't know if I even believed my own words. Things seemed bad and I was gritting my teeth in hoping that everything would be okay.
We sped through the hospital and up to her room, finding a number of people around her working. Dr. Shen was there as was a resident and Dr. Stotz and a whole pile of nurses, some of whom seemed to be doing absolutely nothing. Watching people just stand around while your child is dying makes you want to punch those people in the face. I wanted to scream at them, but I held it in. Everything at the hospital is a bit of a blur for me. They told us that they had done an x-ray and that there was air in her chest, making it hard for her lungs to expand. Since her lungs couldn't expand, she wasn't getting the oxygen she needed and wasn't getting rid of the carbon dioxide. Actually, they didn't even say that at first. They assured us that her brain was okay and that she was getting enough oxygen, but I can look back on those moments and know that this wasn't true. Her brain was starving by the time we got there and it only got worse. The next thing we were told was that they were trying to get her heart to keep beating; that they could get it to start, but that the issue with her lungs meant that it wouldn't keep a steady rhythm on it's own.
I couldn't stand being in the room, staring at her numbers and not being able to do anything. So, I started to pace the floor, making sure to swing by her room over and over. At one point, I made eye contact with Dr. Shen, but his face registered nothing at all. I had wanted to see some glimmer of hope or some expression that would let me know that we would be okay. But, he had nothing for me. I kept walking away from the room, turning around, and wishing that I would hear good news as I approached the room again. I stardd at the monitors in the hallway, watching her numbers jump all over the place, and kept trying to will them to stabilize. Audrey was still in the room, several feet back from Eva, pacing as well. I headed back into the room to be with her and we continued to watch the situation unfold. I kept hearing people say things about her blood gases, about giving her more bicarb (helps balance the pH of the blood), about EPI (heart medication to strengthen the heartbeat), and all sorts of other things. I was trying hard to make sense out of what I was hearing and seeing, but I couldn't because it was happening quickly and I just didn't know what they were talking about.
I began to get the distinct feeling that this was a lost cause. I couldn't see it on anyone's face, but it just seemed like it was too late. I started to feel like all we were doing was torturing her, shoving more crap into her and pounding on her chest to try and keep her alive. And, I didn't trust that she was okay any longer, that she would have a chance at a normal life even if she survived this ordeal. We had to have been close to 45 minutes worth of effort at this point. That is far too long for the brain to go with limited oxygen, although I still wanted her to make it at the time and didn't care about the potential for retardation or handicap.
Then, I saw it. I watched Dr. Shen as he told them to stop. There was no conviction or confidence in what he said or how he said it, as if he didn't want to admit that it was over or have to be the one with the responsibility for calling off the effort. He said it to Dr. Stotz, who didn't disagree with him. The resident kept trying though, keeping her alive in some sense, as Dr. Shen came over to me. He fumbled through his words a bit, getting out something like "We've done all we can and I don't think I can save her...". I waited a moment and then I asked him, "Are we done?" and he said "I think so. Yes."
I think Audrey had already gone up to Eva's bedside. I caught up to her. They were still attempting resuscitation, but it looked like she was getting beaten up. Blood was coming out of her nose. I don't know if they stopped first or if we leaned in first. All I know is that Audrey got in close to tell her that we love her. I'm not exactly sure what happened in the minutes after that. Audrey began to cry. I became overwhelmed with rage and wanted desperately to destroy the machinery and equipment in the room. Dr. Shen disappeared; we haven't seen or heard from him since, actually. I think Dr. Stotz said something to us, but I don't really know. Lisette may have said something as well, but I'm not sure about that either. I did shout out "Can we please get this crap off of her?" in reference to all the tubes and wiring. They unplugged her, pulled up a glider for Audrey, wrapped Eva in a receiving blanket, and handed her to Audrey. Audrey just held her, crying and rocking her. I grabbed a chair and slammed it on the floor, severely spraining my back in the process. I punched the chair a few times for good measure and then collapsed into a glider right next to Audrey.
Eva's chest was never closed, so as Audrey held her, Eva's blood got on her shirt. While Audrey held her, crying while she told her how much she loved her, I seethed and cried and seethed some more. I still can't believe that this has happened, but it was frightening real during the minutes afterward. We sat side-by-side, with Audrey holding Eva, for a long time. I held her too. She was heavier than I expected. She was starting to get cold, but she didn't seem quite dead yet. It was like I was holding a sleeping child, but one who was very motionless. I told her how sorry I was and how much I love her. I held her close to my face, closer than she and I had ever been while she was alive. We only got to hold her in the NICU a few times and never again after she moved to the PICU. Holding her like we've held our other children only happened after she passed away.
After a while, Audrey let Lisette now that we were ready to clean Eva up. Lisette brought a washcloth, some blankets, a water basin, and a memory bag. The memory bag is something the hospital provides to the family of the deceased child. Lisette removed the rest of the stuff attached to Eva and used some warm water to clean her off. We then took the Play-do in the memory bag and made impressions of her hands and feet. We also made prints of her hands and feet using some purple ink. At first, I didn't want to do any of those things, but I realized that this would be the last experience I'd be sharing with her. Making prints of her hands and feet, washing the last bits of stuff from her face, and cleaning the ink off of her became very important moments to me. We cut a few locks of her hair as well. Dr. Stotz came by and told us what he knew about why she died, which wasn't much. He said we could choose to have an autopsy done and we could ask it to be limited to certain areas. We just needed to call some time later that morning with our decision.
We spent some time just cradling her on the bed. I laid my head down next to hers and put my arm over her, cuddling her like would if she had come home. It took a long time, but we said goodbye to her and headed home. I kept trying to get myself to stop crying, but I couldn't hold it together for long periods of time. We are doing better now, but only because we have two other kids that need us to not fall apart.