Yesterday I took you into your follow up appointment. Oh how I wish you didn’t have to endure a long day of exams, wires being put on and taken off, and countless hours waiting to be seen. As we got ready to go this morning just you and I at the hotel room I often gazed upon your face as I tried to keep it together. As I bathed you I looked at your little body and knew that by this afternoon you would be stuck with wires for the next 24 hours. I put my hands to your chest and I prayed for your heart. “Jesus, you are in control.”
As we went in for your echocardiogram I entertained you for 35 minutes as they performed an ultrasound of your heart. You didn’t like the cold gel on your chest but you loved when I talked about how handsome you were. You kept your eyes on me almost the entire time almost as if to ask if everything was ok. I wanted to assure you that everything would be, but all I kept seeing was some of your very lowest heart rate numbers flashing on the computer screen. As I softly spoke to you and held your tiny fingers every muscle in my body ached with worry. You didn’t know though, did you? After all, isn’t this my job? To carry the burdens along your bedside no matter the cost. To soothe you and hold you when you are frustrated at your arms being pinned behind you. I was there yesterday and I always will be.
As we finished I knew that we had a few hours before we would know any results so I pushed you in your stroller down to the food area to get a snack. As I reached for a small bag of trail mix emotions came over me that I could not contain. I wanted to collapse and cry right there in the middle of the masses. I went to the chapel on the 3rd floor and there I picked you up into my arms and began to sob. You must have felt my pain because you laid your head on my shoulder and snuggled deeply into my neck almost as if you were trying to now console me. Oh how quickly the roles reversed. Your gentle touch was now comforting me. I sent a message to family letting them know that we needed prayer and floods of texts came back with encouragement and prayers. You are loved little one.
We went back up for your EKG and results and waited for what seemed forever. They finally called us back and more wires were placed on. You hate the feel of those little blue stickers all over your body, but you did so good today. I soothed you as I had to take all 12 of those stickers off of you one by one. You were so patient. I was so proud of you. The doctor came in and reassured me that everything was ok. Your heart rate is low which may mean that your accessory pathway is beginning to fail, but your underlying heart rate is still above the criteria for a pacemaker at this point. You continue to have multiple issues paired with your switched ventricles. These issues make it difficult for the doctors to confidently decide what steps to take next. We had to up your medication due to the fact you are growing like a weed. Sixteen pounds already my love! We connected you to your holter (5 lead) with wires. You will have to wear these all the way home and for the next 24 hours. The sight of you with anything taped to your chest makes me sick to my stomach. Oh how I wish I could switch places with you.
As we left the hospital I felt sheer exhaustion hit. No clear answers, no knowledge of what happens next, no definitive timeline. I was emotional and drained but I ended the day with you in my arms. Sure you were coming home with wires, but you were coming home with me. So, tonight and everyday after I will continue to enjoy you every little chance I get. I will fight for you, I will be exhausted for you, and I will submit my deepest worries to the One who knows the very depth of every detail of your heart. I will continue to write your story for I know that it is one that needs to be told. Some day you will read this and when you do I want you to know that with every step we take there is something much bigger happening. We may never know what is to be with your very special heart, but for now little one I will follow Jesus into the hospital with you. I will smile at the lost and the needy in the elevators. We are in this together.
I love you.