Happy Hearts Day everyone! What is Happy Hearts Day you ask? Well this is a story that I have only told in bits and parts, but today I will tell you how Happy Hearts Day came about.
March 17, 2005. My husband and I were sitting in a hospital waiting room, waiting for our name to be called. We were told to be at the hospital early that morning, only to be told there was a delay and they would not be ready for us until around 3:00 that afternoon. We still had many people to speak to while we waited. We spoke to a multitude of nurses, anesthesiologist, and many other specialist. Ash was there with us, clueless as to what she was going to have to endure that day. I can remember watching her, with her little pink pacifier in her mouth, walking around the waiting room, playing. We colored, we read stories, we talked, we laughed. we cried. The conversation I had on the telephone about a month ago was running though my head. I had waited 3 weeks to have this conversation. I sat on the other end of the phone, trying to keep my composure. I was being told that my little Ash was in need of surgery, quickly. Her heart was not well and her right ventricle pressures were increasing. She was only receiving 20% blood flow to her left lung, and it was not growing. It had taken the surgeon 3 weeks to come up with a plan on how they were going to proceed withAsh. I was told that he had never performed the surgery he was planning on doing and he wasn't sure it was going to work, but he thought it was really worth a try. I sat there listening to this as if I was in a dream. "Wake up, wake up" was all I could tell myself. After a moment, I returned to reality and told the doctor go for it. My other option was to watch my little girl slowly wither away. I would not allow this, so I told this Doctor to go ahead and try the surgery that he had never done. He wasn't even sure this surgery would work, but I was willing to try anything at this point.
Now, back to March 17, 2005. Our name was called. We walked back into the pre-op area, which was buzzing with people. There were many other children and families back there, all with the same looks on their faces. We went through many questions and Ash was hooked up to some machines. She was checked over and over again. The nurses were explaining to my husband and I the process that was going to take place. We were confused. I look back now and am amazed that I was able to stand. Then it was time, it was time to let them take Ash from us. We were giving her to the one man we were counted on to save our little girl. We walked down a very long, quiet hallway with my little one in my arms. We were carrying her favorite blanket with us and of course her pacifier. The two anesthesiologists turned to us and said we will take her from here. We were standing in front of two very big doors, with the words OR on them. I gently handed Ash over, feeling my eyes fill with tears as I did so. I thought, am I doing the right thing. Should I let them take her. Something inside me said "let go" and I did. I let her go. My husband and I were sent back to a very little waiting room. We were told the surgeon will be in shortly. In he came, very calmly. He sat down in front of us and explained everything that was going to take place. He once again explained to us that this type of surgery had not been done before. He said the entire process would take about 4 hours. And then he was gone.
There we sat, in silence. What were we going to do for hours while we waited to hear the fate of our daughter? We sat, we walked and we sat some more.
4 hours came and passed. No word. Where was he, he said 4 hours. We were now approaching 5. No word. I went to the information desk to ask and the nurse said there was still no word. I thought about a few months earlier when we found out that Ash had a genetic syndrome that was very rare. This syndrome was called Alagille Syndrome. Still fresh off the news, I was not sure really what it was. I thought did I do something to deserve this? Why my child, why not me? Finally after about 6 hours, out walks the Surgeon. I ran to him. What was he going to say, he looked tired, not as calm as he did when I saw him before. He explained that there were some complications, and it tool longer than expected, but she was stabilized now and will be in recovery soon. The surgery went well and we would talk soon. We then were back to waiting. We waited another hour before we could go back to the CVICU to see Ash. It was time. It was time to see her.
We walked in and I actually heard myself gasp when I saw her. Ash did not look the same at all. She was about twice her normal size, due to water retention. She had so many tubes and wires coming from her I didn't know what to do. I walked over slowly, I stood on one side of the bed and my husband on the other. I soon noticed she was still receiving a blood transfusion and was instantly sick to my stomach. I walked away for 5 minutes to regain my composure. I though Wow! There was no way to prepare myself for what I was seeing. But here it was hitting me in the face. Again, I heard a voice say "you can do this, you will be fine." I walked back to my daughters side and never left.
The next two weeks were a roller coaster ride for all of us. Ash went through many difficulties in that intensive care unit. It was the hardest thing, to this day, that I have ever gone through. We made it. At the end of 2 weeks we were sent home. We knew in six months we would be back here, again handing our daughter over to these same people to continue the process of healing her heart.
One year later Happy Hearts Day was formed. We decided we needed to celebrate the day, that my little girl was given a gift. I believe this gift came from God. God gave our surgeon the talent to be able to perform not one, but two very complicated surgeries on Ash. We celebrate this day to thank God for Ash and all the blessings she has brought our family.
I know this post is very long, but I felt a need to write it today. I will post our celebration tomorrow. I think back to that time in our life and am thankful to be where we are today. Although Ash has many issues we need to deal with, the Doctors at Lucile Packard Children's Hospital gave new life to her little heart and I am thankful for that everyday.
Blessings to all of you,