Almost 8 years ago, we were on top of the world overjoyed with happiness to welcome our handsome baby boy but at the same time, our world came crumbling down when we were told our baby had a severe heart condition along with many other medical issues. It’s not the best feeling in the world when your baby is taken away from you on the day you give birth. That’s what happened to me. I was in a shared room with my baby for a minute until the doctors/nurses took him away because he had some issues. They told me he would be in the NICU and that I could visit him anytime I wanted. I didn’t want that. I wanted my baby. I wanted to hold him and feed him and experience #teamnosleep again…but there I was…alone…in a room with another new mother and her newborn. Talk about cruel and unusual punishment.
Luke had his first open heart surgery when he was 3 months old. It seemed like a lifetime ago. Now, we are back on this journey again as Luke awaits his next heart surgery.
I wanted to write all my thoughts and feelings about what was happening and what was going on at the time but so much was happening that I couldn’t gather all those thoughts and feelings in one place enough to write anything down. But, they are definitely fresh in my mind. We took many pictures from the first day we met Luke, to the days in the NICU, to taking him home, to him having all his surgeries and being in the PICU. We didn’t document through journals (I wish I did) but through pictures and videos. We saw our older boys grow up while Luke had all of his surgeries and we saw all the milestones Luke was able to reach when doctors told us otherwise.
We are back on this journey and my thoughts are all over the place again. I can’t remember being this anxious before but I feel it all now. I am a complete ball of nerves and I have no idea where or how to put my mind at ease.
Luke just had his MRI under anesthesia this past Tuesday and I was a wreck. He has had a CT scan before his first heart surgery but that was so long ago and Luke was a baby. He was funny getting out of the anesthesia when he was a baby…imagine a drunk sailor but in baby form…that’s exactly what he was like except he couldn’t talk and drooled the entire time. This time around, Luke took a little longer to get out of the anesthesia state but when he did, he was a jabbermouth. He knew how to sweet talk all the nurses. They absolutely loved him. It also helps that he’s super cute. (oh I’m not biased at all. haha.) Luke sweetened them all up to the point they gave him an early birthday present AND he got to pick something out from the prize box. He was a lucky kid.
Now that Luke’s MRI has been taken and the cardiologist has had time to process and review the results, we have our next appointment to discuss the results as well as the next steps in Luke’s heart journey.
Wish us luck.
#Lukesheart #heartwarrior #1in100 #heartofalion
Luke Riley 