Five Years Full of Ups and Downs

Five years ago today was the scariest day of my life. I thought I was prepared for what was about to unfold but I had no idea. My emotions were in check. I was confident this is what needed to be done. Molly was sick and there was no turning back. I held it together pretty well...until they came to get her. At that point it hit me that this could be the last time I see my baby alive. And that is when I lost it. I didn't want to cry. I wanted to walk her down to the OR with confidence but it all went out the window. I was scared and so sick to my stomach. I wasn't prepared for any of this. This isn't what I had imagine my life was going to be. I never knew fear like this. I was desperate for prayers even though at that point I had lost any bit of faith I had had because why would I be dealt this hand? Why was I picked to know this life? Did I believe in miracles? Not up to this point I didn't.

We gathered our things and with tears in our eyes we walked Molly down to the OR with her nurse, anesthesiologists and respiratory therapist. It is a day and feeling I will never forget. As I type this I have a lump in my throat. We went as far as the OR doors. We gave her a kiss. She was wheeled to the left and we went to the right. We met up with our parents and that is where we stayed for the next 8 hours. Updates were vague but our fear and anxiety was very real. I couldn't even tell you what we did to past the day but I can tell you that the look on the surgeons face when he came out to talk to us was not a pleasant one. He was tired and not 100% hopeful. He explained what he did and why she was placed on bypass early. He told us that her chest was left open and it was very touch and go for awhile. She was stable but critical. Stable and critical?! How are those words being used to describe MY baby? Those are words used on the news or in the movies. Not about someone I know personally. But critical she was. We went up to see her but we didn't allow anyone else. No one needed to see her chest open. We were so afraid that she would catch something and she was already so so fragile. The next two weeks were a nightmare and I know this because there are no pictures during this period. Her chest was left open for 8 days. She just wouldn't tolerate it being closed. She had a very tough time recovering and they couldn't figure out why. They had a hard time figuring out how to pace her with the external pacemaker. One night, around 2am,  we received a call that we should come down. She wasn't doing well. Her heart rate was 200. We rushed down there so sick to our stomach. Begging out loud not to lose her and for her to hang in there until we got there. By the time we got there they had stabilized her. After many tests it was decided that just two short weeks after her first open heart surgery she needed a second one to repair her mitral valve and implant a pacemaker. I wasn't as nervous going into this one and I'm not really sure why because we were told that if this didn't work they didn't know what else they could try but I was more certain this was going to be it. I didn't have any reason to believe that but I just did. We did it all over again two weeks later. Except this time when her surgeon came out he seemed much happier. Her chest was closed, he actually cracked a smile and we all took a giant sigh of relief. She was still critical and her journey at Children's was far from over. We still had months and months and months to go before we would be able to take our baby home. There were still countless procedures ahead of us but we had no idea at that time.

Fast forward 5 years and this is never what I thought our life would be like. In all of the days spent at Children's, I never thought we would have a smart, trach and g tube free preschooler. She has come so far. She has gone from 22 meds to 3. She still has a pacemaker but no longer relies on it. We went from bi-monthly cardiology appointments to every 9 months. Her trach and g tube were removed. She walks and runs like everyone else. She is smart and sassy. Sweet and brave. Of course, she struggles with some things but we are working on all of it and I am confident that she is going to do amazing things in life. Five years ago I didn't believe in miracles but after our journey and all that she has been through, how can I not? Five years ago I didn't know why I was dealt this hand and now I know why. Molly was brought into my life to show me what it means to be brave and to show me all of the good in the world. To show me what a miracle looks like. To show me that there is so much more to life than hanging out, going to the movies, going on vacations. She has shown me the meaning of life and I wouldn't have it any other way. She means everything to us and I want her to always know that! <3 I can't wait to update in another 5 years!