This will be my 3rd year riding with the Cardiac Climbers in the Courage Classic 2020 bike tour!! It's honestly something I look forward to the entire year. Although it won't be a large organized event at Copper Mountain this year due to COVID, our team is still dedicated to getting the miles in for our cardiac kiddos! On July 18th and 19th, I will be riding 120+ miles with a small group to raise money for the Heart Institute at Children’s Hospital Colorado!!! As a nurse in the Cardiac Progressive Care Unit (CPCU), it is an honor to care for babies, children and even some adults with complex cardiac defects who have had or will have surgery to repair their sweet, but broken little hearts.
Every year, every member of our team dedicates their ride to a special patient of the Heart Institute. This year, I have the pleasure of dedicating my ride to not one, but two special patients....Amelia Henwood and Joseph Staudinger!!!
I have cared for Amelia since she was a newborn at Children’s Hospital and now have the privilege of being her homecare nurse once a week. Amelia was born with Heterotaxy Syndrome which involves multiple heart defects, lung and intestinal malformations. Even though this sweet girl has endured multiple open-heart surgeries, cath lab procedures, GI surgeries, and required a tracheostomy, she, against ALL odds, has overcome the many life-threatening complications along the way. Amelia was adopted by the most amazing family when she was an infant who gave her a chance at life…because of them and the care she received at Children's Hospital Colorado Heart Institute, she is alive and thriving and just celebrated her 4th birthday!! She is a sassy little princess who walks around with a little spunk in her step and has the most precious little voice you've ever heard!
Baby Joe is an adorable 3 month old diagnosed with Down Syndrome and AV Canal heart defect (a whole in the upper and lower portion of his heart). He and is beautiful mom stole my heart during the two days I took care of him in January 2020. I was in awe of how well baby Joe recovered from his open heart surgery and his smile just melted my heart! I admired his mother, Brenda who was such a strong presence for her baby boy during his surgery and recovery. Brenda had to leave her husband and other 3 children in Montana, to bring Joe to Colorado for his surgery….something only a strong, faithful woman can endure. Baby Joe is back home now with his family doing well, growing and thriving!!!
We know 2020 has been a tough year for everyone but we are still committed to riding and raising money for our amazing Heart Institute. Now more than ever, we need to stand behind our patients and their families, the Heart Institute and Children’s Hospital Colorado. If you can, please consider making a small donation to help me raise money for children like Amelia and baby Joe. ALL money raised goes directly to the Heart Institute for state of the art equipment, research and education, and family assistance. Thank you so much for your support!!!!!
Here is a message from Amelia’s amazing parents Justin and Whitney……
"As foster parents, we fell in love immediately with Amelia and her adorable cheeks when we met her in 2016, a few months after her birth. Her resilient and headstrong spirit helped her endure the many medical and surgical interventions she faced immediately after birth and for the years to follow. Amelia has heterotaxy syndrome which affects her heart, lungs, and intestines and has led to a complicated medical prognosis. We were able to adopt Amelia into our family in 2017, after being told Amelia might not live to her first birthday. Amelia has taught our family how to live life to the fullest and every day we get to spend with her is truly a blessing and a bonus."
Here is Baby Joe’s story from the worlds of his loving mother......
“On October 9, 2019 our sweet baby boy Joseph was born…but that's not quite where his story begins. I remember the day I found out I was expecting. It was very exciting and I wanted to surprise my husband when he got home from work so I ran to the store to get a shirt for our 2 year old. The shirt was sparkly pink and said she would be the best big sister. I remember his face when he read it and he wasn’t quite sure what to think. I couldn't help but laugh at his helpless expression…and he broke out into laughter with me. We would soon be having our fourth child!
The day we went into the doctor, we were just over nine weeks along. We watched the screen as the midwife ran the doppler over my growing tummy. And there it was….our baby! But wait.. there were two little spots on the screen. The midwife said she would send us for a more accurate ultrasound since the device she was using quite the dinosaur. We left that day with giggles and excitement. We were so thrilled to know there was not just one baby but two!
The next appointment came before we knew it and we were eager to see our babies. This time when we looked at the screen there were a total of three, yes three babies!!! We couldn't believe what we were seeing. But as we focused in on the triplets, only one of them had a flicking heartbeat. So many different emotions run through you in this type of situation, but we pulled away that day saying that we were so grateful that we were blessed to have one baby that was healthy and on the way. Our next appointment would consist of routine blood work. Once the results came back, we were told our baby would possibly have Down Syndrome, which came as quite a shock to us. Although, the doctor was unsure if this blood work was reading DNA from our baby on the way or our other two babies that had not made it past 10 weeks. The rest of our pregnancy was healthy and everything went as planned.
A short nine months later, little Joe was born! He was so, so perfect from head to toe and as I studied my sweet boy I noticed his fingers. They were short and pudgy, a little different from what I’ve seen before, so I started asking questions. After those questions, things seemed to speed up faster than I could keep up. The doctor ran all kinds of blood work on my baby but he never cried. I remember putting my hand on his little chest as he was getting blood taken and I could feel his tiny heart racing underneath my hand…I wanted to cry. Why couldn't everything be okay so I could just hold my baby and love on him?
Shortly after that blood work, he had an ultrasound done on his heart and there were many more to come because he was diagnosed with an AV Canal defect that would need to be repaired when the time was right. I'm sighing now as I remember how lost I felt and how angry I was. It wasn’t fair I kept telling God. Why would he do this to me? Was I being punished?! I cried and cried for a couple of days while baby and I were still in the hospital after delivery. After I let all those emotions flow over me, all that was left was a love so strong and so fierce that I knew my baby boy was made perfectly for me and I for him! God choice me to love and care for this sweet little doll and I would do my very best!
Fast forward 3 months later and we were flying to Denver for his heart repair…just baby and me with quite the battle ahead of us. The rest of our family had to stay behind and watch from afar with all their love and support. Meeting the team and handing my smiling, cooing baby over to people I just met was probably the hardest thing I will ever do. He was off to surgery and I was waiting for him. I think I went into a bit of a shock because I had no feeling. I was just numb and maybe my mind did that as a survival technique. With every update during surgery I became more eager to see my son and have good news.
After hours of waiting, I was told I could go see him. I was brought to his room and my baby was laying there with all kinds of wires and tubes coming out of his body. My heart sank and all the emotions that were hiding before came flooding out. My boy! My sweet boy! Please be okay and please be strong because mama is right here by your side and I need you. As I touched him he didn’t move, he didn’t even flinch, and it felt so alien. Like where was my baby because I couldn't see him in his little weighed down body. I couldn't leave him for a second so I stayed with him as the nurses tended to him. I felt helpless. I didn’t know what I was supposed to do so I just stayed there and caressed his little head of hair and sang to him or talked to him.
Everyday it seemed there was something positive and he was moving forward to recovery. After the fourth day I was able to hold my boy again and he seemed like he had grown. He just felt bigger in my arms. I put my cheek on his head and felt comfort because I knew he was going to be okay. Everything would be okay and God showed me that day what miracles really look like! After just 7 days in the hospital, my boy was being discharged! He had come so far so quickly, it was mind blowing. I was taking my baby home and I couldn't have been happier.
I loved our experience at Children’s Hospital Colorado! I have never experienced anything like it before. Everyone was so kind and really cared about my son and my concerns as well. The surgeon was very matter of fact but also personable and I didn’t expect that. For me he is "The Santa of Hearts" and I will forever be grateful for his fine detailed work that has changed my son’s life. There wasn’t one person that wasn’t warm and loving. All this support I was receiving was from total strangers, Honestly they made me feel like my baby boy and myself were part of their family. I cannot thank this team of people enough! Please know you have changed our lives!♥”