Dan's first post on Lydia's blog comes the day before her 1 year heart surgery anniversary.
The night before Lydia’s first heart surgery she was just 10 days old…we stayed in her room with her for a while just holding her tightly until about 11 pm. We then wearily and worriedly walked down to the Ronald McDonald house in the hospital that offered a place for rest and refuge for family members and parents of children having procedures done. We had a tiny 7x10 room that has only a bed, nightstand and small chair in the corner. It wasn’t much but it was all we really needed. We fell asleep knowing that the next day was going to be the toughest of our lives, not to mention the toughest of our little girls life too.
We awoke the next morning with new energy and optimism despite the complexity of her procedure, Lydia was just over 6 pounds and her surgeon was 6 ft 5 inches tall and had hands like a professional basketball player. How was he going to be able to perform such a delicate operation on such a tiny little baby? We were blessed to know that he was one of the (if not the actual) top pediatric surgeons in the country. The walk to Lydia’s room was brutal, it seemed to take forever because I could not wait to see her, however, I wanted that walk to last as long as I could because I felt like if I wasn’t there to see her they could not take her away and she would not have to endure such an extensive surgery. Deep down inside I knew that was selfish and that this was going to be the best thing for her.
When we arrived at the room she was asleep, as newborns do; she had no clue what was about to happen to her. In fact, with all of the procedures and wires and tubes she had experienced so far we imagined that she must have thought “this is what life is supposed to be like” she did not know anything different. Our perfect little girl was about to get cut open and scarred for the rest of her life.
I picked her up and held her in my arms, she felt so light which was a good thing because the weight of having to not only make the decision to agree to the surgery but to hand her to the nurses to take her to that surgery weighed on us like a ton of bricks. I was unsure how Kinsley and I could have carried any more worry. After a couple of pictures and “We love you little girl” we were escorted to the waiting area room where we would be spending the next several hours waiting, hoping and praying.
As I am writing this I am looking at her, she is squirming in her sleep and it just dawned on me that one year ago I was sitting in a chair anxiously waiting to hear good news and thinking about nights like this one where I would be able to watch her sleep peacefully after a full day of laughing, learning and loving. I prayed that day like I never had before.
We had received lots of support leading up to that day from family and friends but no matter how much you get you always feel alone in this situation. One of the nurses attending the surgery would come out every so often to give us updates as to how she was doing. The anticipation of seeing her brought out so many fears and joys at the same time, happy to be getting news and updates but scared beyond belief as to what she might say.
It’s not easy to fill that much time AND take your mind of the events transpiring, but I did my best by giving myself a goal of finishing a book that I had started weeks ago I desperately wanted to get through. Former KC Royals 2nd Baseman, Frank White’s, auto biography ‘One Man’s Dream’. Frank had purchased his truck from my dealership and I had done several aftermarket items for him on it. Just a couple of days prior I had ordered some running boards for him. I called him yesterday and left him a message letting him know they were had arrived. He just happened to call me that morning to confirm he received the message and to wish Kinsley and I both good luck on Lydia’s surgery. What a great gesture that gave me new life and energy to get through the book and the waiting.
Around lunch time my boss, Phil Smith arrived to sit with us for a while and bought us lunch. It was really nice to have him there to talk to us and help take our mind off the situation.
It was odd but the entire time she had been in surgery the waiting room was devoid of any other person but us. We had it all to ourselves for virtually the entire time. I kept waiting for some obnoxious family with a dozen kids and family members to set up camp right next to us and crash our peaceful and tranquil time. But it never happened, I guess it must have been some divine intervention that kept people from bothering us and putting my nerves at the breaking point.
Someone once said “The light may get dim but it will never go out. As long as you have faith the light will be on.” I kept saying that in my head the whole time and did my best to keep my faith.
Phil stayed with us for a while after lunch and was just getting ready to leave when the nurse came out and told us that the procedure was done and was a complete success. We were overjoyed and overcome with emotion that everything was OK. Phil was happy for us and gave us each a hug and let us get prepared to see our brave little girl. It would be some time before we were allowed to see her and the anticipation was building with each minute. Kinsley and I had embraced and were so happy, we knew we still had a rough road ahead but it seemed a lot easier to navigate now.
When we finally walked back to see her we had no idea what she would look like or how she would be. It didn’t matter, our tough little girl had come out of open heart surgery at only 11 days old. She had already been through more in her little life that I could ever imagine. Once we walked in we could not believe our eyes. I will spare you the details but she did not look like our Lydia. She was very swollen and grey in color with tubes and lines and monitors all over. I was immediately filled with emotion and a feeling that rushed over me that I had never felt before that I cannot fully describe. I could not believe what I was seeing and no matter who you are, how tough you think you are or what you THINK you can and cannot handle. Nothing can prepare you for that, nothing. I stared at her seemingly forever and had only one thought that was a constant on my mind, “Thankful”, thankful for the miracle that I was seeing before me.
On a side note I would like to say with all sincerity that even though the cardiac team and surgeons did the work and fixed my little girl, the REAL hero’s and miracle workers at Children’s Mercy Hospital are the nurses in the NICU and PICU wards. Every one of them was loving, yet professional, empathetic yet stern and very energetic with our little girl. I want to take this moment to thank each and every one for their amazing dedication to their profession and most importantly to every child they encounter. The nurses are what make the difference at that hospital. With all of my heart I appreciate everything they did for our little Lydia.
The rest of that day I don’t really remember, I know our parents arrived later. I know we had lots of calls and texts with well wishers and prayers answered. I am certain Facebook stock went up a quarter of a point with all of the “LIKE” activity once we knew she was OK. It had been a long day, a stressful day but in the end the most successful day we had ever experienced.
Lydia will never remember that day, part of me never wants to show her the pictures we have nor tell her how tough it was. However, I do want her to know every day for the rest of our lives how proud I am of her and her mother for being as strong as they both were. I am confident there is NOTHING Lydia cannot do.
Many years ago a friend had me pick a song of inspiration and a word of encouragement for the year to get me through the tough things that get to us all from time to time. With everything going on I never got around to picking either one for 2015. In retrospect the song isn’t important but my word for that year that would encourage me to keep the faith is “Lydia”. It always will be.
