Two Years Seems Like A Life Time

It is very hard for me to read back through Molly's Caringbridge. I try to do it from time to time. I start at the beginning and get so far and can't do it anymore. It can make me feel exactly how I did at that time and I never want to feel that way again. I follow a lot of kids with heart defects and Heterotaxy and they seem to be right on point developmentally or pretty close to it. I sometimes wonder "what did Molly go through that these kids didn't that would set her so far back?" so I decided to read through her Caringbridge from beginning to end. It made me sad. It made me mad. But most of all it made me proud. Yes, she spent the first 8 months of her life in the CICU but even after she came home she was still on Methadone and Ativan. She still had her trach. She still struggled with gaining weight. But what I found when I was reading through her history is that the majority of her time at Children's she was sedated or at times paralyzed and sedated. I guess that was my answer. I knew she was on sedation but I didn't realize she was sedated as much as she was or maybe I chose not to remember or maybe I just look at her now and I forget. She is so good at making us forget all that she has been through. Tomorrow will be 2 years since her first open heart surgery. Two years ago tonight we stood in her room in Bedspace 2, talking to her surgeon, going over all that was going to happen the next day. I remember standing there listening to him talk to us, feeling like I was going to pass out. I had to leave the room and go into the bathroom, kneeled on the floor because I was sweating and couldn't stand. I splashed some water on my face and walked back into the room. After he left we spoke to a cardiac fellow. He was telling us that we should expect Molly to come back up from her surgery on ECMO. They were expecting her to be that sick. We were devastated. We didn't know what to think. Now that fellow is an attending and every time I see him I will always remember that night. Molly was on the schedule for 7am on June 25th, 2010. We arrived early to sign the consent forms and spend some time with her before. I did OK until they were getting ready to wheel her away. I lost it. I couldn't hold the tears back anymore. We rode down in the elevator with her, kissed her goodbye and they wheeled her in the OR where they would spend the next 8 hours working on her tiny, complex heart. She was very sick and they had to put her on bypass early because she became unstable. We paced and paced the surgical waiting room. When we saw the surgeon after it was over it seemed like he was walking in slow motion towards us. He did so much work to her heart. He performed a miracle that day. He gave Molly something that I could never do, no one could ever do. That was the day that she started her journey home. Yes, it was a long journey but without this day, this surgery, she would not be here today. This is the day that we will always be thankful for. This is the day that we will always celebrate. She did end up going back in for her 2nd open heart surgery 2 weeks later to have her mitral valve repaired again and a pacemaker placed but once we had that first one under our belts then second one...well, I was going to say was a little easier but it is never easier. No matter how simple the procedure. As a parent you want to be the one to fix the boo boos, hold them when they are sick, make them feel better. It's not easy to hand your child over to someone else knowing they are your only hope at making your baby well again. As much as I hate that we had to go through all of this, I'm so happy that it's behind us and the things that we are working on now are feeding, talking, walking, playing and living/loving life! We still have doctors appointments but they're not as frequent. She still takes medications but she only takes 4 (instead of the 22 she came home on) plus 2 inhalers. We still have the constant worry about her belly but we try not to let it control our life. We just put it in a little compartment in the back of our head. Everyone always tells me how cute she is or she has great hair or long eyelashes but what really melts my heart is when people tell me to look at her you would never know she has been through anything and that means so much to me. I want her to be proud of who she is and what she has been through because not everyone has the same outcome but at the same time I want her to feel like she can be like everyone else. She is everything to us! Because of her surgeon, Dr. Emani, the cardiac attending that took great care of the 3 of us, Ravi and some of the nurses that we love so much we have our miracle home with us today!! Thank you everyone for being a part of our journey for the past 2 years. You will always have a special place in our "hearts".