On Thursday night we knew that Madden was struggling. We sat with the Dr's and discussed our few options and the very slight chance that Madden would survive long enough to make it home one day. They told us the first surgery to place the artificial heart had to be perfect, we needed luck...we needed a miracle. This surgery would be 12 hours long and very trying on a little body that had no reserve. The list of complications were endless and the risk was incredible high. We were given a 10 - 15% chance that Madden would make it. It was a chance, there was still some hope. Even the Dr's were hopeful. We were also told that Madden had very high chances of going in cardiac arrest at any point. I knew we needed to let Kaelin know because he still believed Madden was coming home. In my heart, I knew.
Rocky and I both left the hospital to pick up Kaelin and explain to him that Madden was very sick and didn't have great chances of making it home. My 11 year old son cried his sweet little eyes out. We broke his heart. Kaelin was devastated. We took him to the hospital so he could spend some time with his brother. He sat and read him stories and talked to him while we were there, telling Madden how much he loved him and how he wanted him to come home so Kaelin could show him the world. I took Kaelin home late that night and picked up Ryker from my sister's so we could all be together.
I told my family to all be at the hospital by 9am the next morning so everyone had a chance to spend time with Madden.
Rocky spent the night at the hospital and text me through the night letting me know how our baby was. He asked if he talked me into this next step. He asked if we were grasping at straws. He asked if I truly felt Madden was done, I had felt it for days.
Early in the morning, a little after 6am, I prayed to God to take Madden into his arms if he wasn't going to get through this. I didn't want to put him through another surgery if we were just making him suffer more and prolonging the inevitable that Madden wouldn't be coming home with us.
At 7am Rocky text me and told me to come to the hospital as quick as I could. He told me he thought Madden was making the decision for himself. Madden was telling us he couldn't fight anymore.
I jumped up, got the kids ready, text my family to come as soon as they could and raced to the hospital. We had a team of people in Madden's room trying to get him stable when I arrived. I looked at Rocky and I could see in his face that he too knew that Madden was done fighting. He was tired.
Dr Conradi came into Madden's room and asked Rocky and I if we could sit and talk. He started out by telling us that when he went home the night before he did a lot of thinking about Madden. He tried to piece everything together without any emotion and he came to the conclusion that Madden's chances were too low to put him through anything else. He felt that Madden would not survive. The surgeon in the morning on cardiac rounds confirmed this for him. He asked the group of people involved what they were thinking. Why they would put Madden through something else when the chance he would make it was less that 1%....way less. Dr Conradi told us that the surgeon would not take Madden to surgery because he was too unstable. He also said that with how much Madden had deteriorated overnight he knew he would not survive. This was the end of the road. Rocky and I both knew. We knew Madden was showing us all that he was ready to fly with the angels. We just weren't ready to accept it.
He explained to us how the day would go and how the hospital would give Madden a dignified and peaceful death. We told him it was important for us to have Madden baptised so they arranged that to happen. He asked us if we would consider an autopsy. Immediately I said no. I felt that Madden's little body had been through enough and I didn't want anymore cuts, anymore tubes or anymore pain. I wanted peace for his small body.
Our family all arrived and we all spent the day in the room with Madden telling him we loved him and that we were so proud of him. We had him baptised and we got hand and foot casts made. We tried to get a few hand and foot prints as well. In the early afternoon the Dr came in and asked if I was ready to hold Madden. He also told us that the "move" may be too much for him and he may not make it through. This is how fragile my baby was. They lifted him up with all his tubes and wires and held him while the bed was pulled out and a couch was put in its place. I sat on the couch and my baby was placed in my lap. I held him, kissed him and talked to him. He was perfect. So handsome. So sweet.
Madden was slowly deteriorating through the day and we could see it. We asked everyone to say their goodbyes to Madden so that Rocky and I could have some time alone with him. Everyone kissed him and said goodbye. It was heart wrenching and beautiful at the same time. After everyone was gone Rocky and I traded places and Rocky was able to hold our beautiful boy. Madden began to tell us the time was coming to say goodbye.
Dr Conradi came in and increased Madden's sedation so his passing would be peaceful. He gave us some more time. He then came back in and removed the breathing tube from Madden's nose and turned off all the pumps which included all the life support medication. He turned Madden so that Rocky and I could both hold him while his small soul left his body. Madden took 3 small breathes in our arms and peacefully passed away. He was ready, he was just waiting for us to say it was ok.
Madden spread his wings and flew with the angels at 5:35pm on August 31st, 2012.
We got to hold Madden for a while after he passed. We hugged him and kissed his cheeks and cried. We talked to him and told him we were so proud of how hard to fought. We then got to bath Madden and get him dressed for the first time. After he was bathed and dressed we got to really hold him, the way parents are supposed to hold their babies. It felt so good to snuggle that little body even though we knew his soul had already left us. We cherished our time with him.
The staff from the unit came in and also said goodbye to Madden. They cried with us and hugged us. They asked for service information and told us they would like to attend.
Before Madden passed away the Dr came in to ask us again to reconsider the limited autopsy on Madden. They didn't understand why this had happened and wanted the information for learning. The potential for this autopsy to save another child's life is very much there. We agreed that an autopsy could be completed with the condition that Madden's special heart is returned to him so that it is with him for eternity.
Just about 2 hours after Madden had passed the charge nurse came in to let us know that the autopsy test we had agreed to needed to be done within 2 hours of the time of death. It was time to say goodbye. It was time to leave the hospital for the last time. I wasn't ready. I never would have been ready, We cried. We hugged him and kissed him some more and then laid him down in his little bed and said goodbye to our small prince, our sweet angel.
We then gathered up as much strength as we could and walked out of the hospital leaving our baby for the last time.
We know Madden is in a better place. We know that this was his choice. It doesn't make this any easier.
A friend wrote on my wall "An angel in the book of life wrote down your babies birth, and whispered as she closed the book 'too beautiful for earth' ". This gives me comfort. Madden was too perfect for this world. He touched so many people while he was here. Madden will forever be in my heart.
I love you as big as the sky small prince. I will miss you forever and always carry you with me in my heart. You are a true hero. xoxox
