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Continued from Last Week We had a lot of up and downs during Anna's PICU stay. It was one step forward and two steps back. Once Anna's swelling went down, she looked terrible. Now, her eyes were sunken in, and her color was no longer yellow, it was orange. Her bili rubin was high at 26. That day that I walked in to see her, instead of being swollen, which I was having a hard time dealing with in the first place, she looked even more sick with the fluid off of her. There is a lot that goes into being in the PICU. Anna had her fair share of blood transfusions, respiratory therapists, CT scans, ultrasound, x-rays, tube adjusting, etc. There were a lot of lines that went in and came out. There were times that Anna's heart rate dropped dangerously low. A few close calls. I spent a lot of time singing to Anna, holding her hand, reading to her. Lots of conversations with doctors. I was there everyday as early as I could get there in the morning so that I wouldn't miss rounds, and usually stayed a few hours past nurse changes. If we happened to get a new nurse, I would want to stay to get to know her before leaving. I always had my cell phone close to me when I would not be in the hospital, and still called the hospital a few times when I wasn't there to make sure Anna was doing ok. I was always worried that something would happen while I was not there. I hated not being able to sleep in her room with her. I always felt bad leaving her, nervous. I made sure they knew to call me no matter what, no matter the time. Sometimes I wondered if maybe I should just stay up all night in the PICU with Anna, but I only did one night, and that was hard. This stay was wearing on me. Jason had to continue to work, and I was there all day on my own. I would get a visit here and there from friends, and family. It had to be hard for people to visit when it was such a stressful, uncertain and sad time for everyone. People didn't know what to say to me. Once in a while I would get a visitor that would offer to get lunch with me. I always appreciated that. I didn't like to eat in the cafeteria by myself, and you can't bring food into the PICU with you. I got Jason's mom to give updates because I was so warn down. It was hard to get calls, and try to explain the situation to people over and over again. On Valentines day our favorite PICU nurse decorated Anna's crib with hearts cut out from red and pink construction paper! I hadn't realized that it was Valentines day until I walked into Anna's room. She also had two new beanie babies by her side. She was always covered with her blankie that had a guardian angel medallion pined to it with a gold safety pin that we got as a gift for her during this stay (she still loves her blankie to this day.) Monday after Valentines day, I was tested to be Anna's donor. I had an appointment at Northwestern Memorial Hospital. I couldn't bare to have Anna alone that day, so I asked Jason's mom to stay with her while I was gone. I took a shuttle from Children's to Northwestern. They actually dropped me off at the University. I had no idea where I was. Luckily, I knew a student on the bus that happened to work in the liver unit at the time Anna was in with cholangitis. We talked about everything that happened with Anna since then on the way. When we got off the bus she pointed me in the right direction. There are a few building for the hospital, and they are not connected. This hospital is HUGE! After asking many people where to go, I found where I was supposed to be. I first met with the nurse practitioner, Lori. She was great! I had a regular physical exam, was asked a lot of questions. I had blood drawn. I met with a psychiatrist. They need to make sure you are not being pressured into doing this, and that your mental status about the whole situation is ok. The GI doctor let me know that I could die from this surgery. Well, you could die from any surgery. I knew this wasn't a minor thing, but I was ready to do what it took for Anna get a liver when she needed it. I knew I was putting myself at risk. I was ready. I also had a CT or an MRI (I don't remember which one it was). All the other testing had to be done the next day. There was a lot that went into the tests, it couldn't be done in one day. We didn't get an answer right away, and that drove us nuts. I believe it took a few days for a definite answer. The day I was told that I would get a phone call, I was a nervous wreck. I sat by the phone all day, didn't get up for coffee, food, or a bathroom break. I believe Jason was with me that day. It killed him that he had to be work through most of this. I can't imagine having to work all day, knowing that your baby is so sick. He had to work. There was no way he could loose his job, and he knew that after the transplant, he would need to take a lot of time off to care for the both of us. But, he was there that day, and I was glad. Every time the phone rang my heart would race. When we finally got the call, I remember I could barley say hello. It was Lori from Northwestern. I was a match! She asked me again, "are you sure you want to do this?" I said "yes, without doubt!" Jason knew as I was on the phone, he could see it in my face. It was a relief, and it was scary at the same time. To know that Anna was going to have such a surgery was scary. To know that Anna was going to get her liver, that we had it lined up for her when she was ready, was the biggest relief to us. Jason was worried for the both of us, but we were all ready. After I got the call, Anna's doctors came in. They knew already. They too, made sure that I was ok with all of this. They wanted to schedule the transplant for April 3rd. They wanted to give Anna time to fight off the infection that was running through her little body, or the transplant would be too risky. Although, if things got worse with her condition they warned me that it could be her only chance, and it would be done on an emergent case. This was scary for us. To think that things were that bad, and if they had to do an emergency surgery, that would be even more risky. Anna had more up and downs, and they kept pushing her transplant up and up. Everyone was praying for Anna. One day, she started waking up a little here and there. Then, one day, she was back. She would smile through her breathing tube. She reached for me. Then, she started to breath over her vent. It was like a miracle. Everyone, including her doctors, were shocked. Her breathing tube was pulled on the 27th of February. Now that she was doing so much better, they didn't want to take any chances. Anna's transplant was scheduled for March 6th! They bumped it up, and it was because she was doing well, not because it was emergent! This was great! She was put on oxygen, and moved to the 6th floor the next day. The first two days after leaving the PICU were the hardest. Anna was having withdrawals from her sedation medications, and she was crying constantly, for two days straight! I was crying right along with her. All I could do was hold her and try to comfort her. Try to get her to rest. There were a couple times that I was able to get her to sleep for a little while. There were also a couple times that I needed to leave her with someone else. It was so emotionally draining to see your child like that. Although, as soon as I would leave I felt bad, and would come back right away after grabbing a snickers bar, or a bottle of pop, or a bathroom break. After those two hard days, Anna became herself again. We spent some nice quality time together before our day came. I was especially glad to sleep in the same room as Anna once again, to not have to leave her every night. Here are some pictures of Anna during this time. I never felt up to it, to take pictures of her in the PICU. It seemed weird to me to take pictures. Jason's parents were the only ones to take pictures of Anna during her hospital stays. Now, I regret not having more pictures, but I am very thankful for the ones that we do have. These are from a visit from when Jason's parents came with Mary to finally see her baby sister. During her time in the PICU, we didn't let her visit but one time, and only for a short while.     I was to leave for the hospital early the morning of transplant day. Jason spent the night with us in Anna's hospital room. Neither of us really slept. I was worried for Anna. I hated the fact that I couldn't be there to see her off to surgery. I wouldn't know what was going on, if everything was ok with her. I was worried for Jason. It was going to be hard for him to have the both of us in surgery at the same time, having to travel back and forth that day. Jason came with me to the hospital. I gave Anna so many kissed and hugs before leaving. That was one of the hardest things to do. Saying goodbye. When I finally worked up the courage to leave, the nurses on the floor were so supportive. They all hugged me, and told me what a great thing I was doing for Anna. That made me feel good. It was still dark when we went out to the shuttle that was to take us to Northwestern. As we pulled up to the building, I started to get nervous. We got to pre-op, and I got into my gown, got an IV, and epidural. The rest would be done after they put me out. We met with my surgeon, Dr. Abecassis. He asked me, once again, before being wheeled down to surgery, if I was sure. I was so sure. I hugged and kissed Jason goodbye, told him to take care of Anna. "Give her kisses from me when you get back." He promised to be back when I woke up. Obviously, I wasn't there for the rest. Jason and I have talked about the experience many times. I know that after I was wheeled in, he went right back to Children's. My surgery was going to start right away, and Dr. Superina (Anna's surgeon) was there to make sure of my liver, to help prepare it for Anna. They took Anna down at about 11 am to prep her for her surgery. Mine was done at around 1:30 in the afternoon. Jason didn't get all the updates that he was promised, so he was not sure what time my liver got there, or what time Anna's started. They called when I was in recovery, so Jason came to see me. I slightly remember this visit. I remember Jason calling me his hero. That, I can remember. I was very out of it, he told me, but I did ask about Anna. She was still in surgery at that time. I told Jason to go back there, I would be fine here on my own, Anna needed him there with her. Anna was done at around 8:00 in the evening. When she was done, both surgeons came out to talk with Jason. They let him know that everything went very well. Anna's new liver stated producing bile right away! Her old liver was horrible, very hard and diseased. This new liver, although a little large, looked great! Of course the first 24 hours were critical, but they were very optimistic! When I heard the news I was so very relieved. I got phone call from Jason after he talked to the doctors. Oh, What a relief! Jason came to be with me for a little while that night. I was in so much pain, and so medicated that a lot of this is a blur to me. I do, remember the calm that came over me when I heard that Anna was doing well, and to see that look in Jason's eyes. 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