By: Allison Kimmes
Allison Kimmes is a mother of two, Kashton and Annistyn. Below she outlines her family’s experience with the congenital heart defect Kashton was born with. Stay up to date on their lives by following her blog: Midwest Millennial Mama.
“Mommy, why does my chest look different?” It’s a question I’m dreading my 2-year-old boy asking me, and I know the day is near. See, his chest is different because he had open heart surgery in order to save his life.
Kashton’s grand entrance
On Oct. 24, 2018, I was finishing up my dinner with my husband. I stood up, and my water broke. It was three weeks before our due date. This was it; it was the moment I spent nine months preparing for!
I never missed an ultrasound, I measured “perfectly on track” at each appointment, I agreed to all additional screening, I took my vitamins, followed every single dietary suggestion, and adjusted my fitness routine—all to take care of my seemingly healthy little boy. Our bag was packed, our birth photographer was on speed dial, and my type-A personality had us prepared for any curve ball that could possibly be thrown at us.
Except, I was nowhere near prepared for what happened.
Something was off
When Kashton was born in Duluth, Minn., I sensed something. It was a strong enough feeling that it distracted me from this brand-new bundle of joy in my arms.
They paged all necessary specialists, but still had to take my baby from my arms. We were told with confidence that it was his heart. The absolute only thing I understood from all the medical gibberish was that my son was not getting oxygen and was unable to breathe on his own. I thought he was dying.
Kashton’s congenital heart defect diagnosis
Kashton was diagnosed with a congenital heart defect (CHD) called Dextro-Transposition of the Great Arteries (d-TGA). d-TGA is when the two main arteries of the heart are switched or “transposed” and his blood was not getting the oxygen needed. His diagnosis was considered critical. We waited nervously in the nursery for the life-flight patient transportation that was on its way to take my little boy away from me, yet again.
Kashton was being transported to Children’s Minnesota for a balloon procedure, while his parents drove from Duluth to meet him there. I wasn’t even able to comprehend what was happening. I just felt rushed to grab all of my belongings and get to Children’s Minnesota hospital as quickly and as safely as I could.
We got the call that his balloon procedure was complete and successful. My husband answered the phone in the car and started sobbing uncontrollably to the point in which he wasn’t able to pass on the good news.
I felt numb, and my heart sank like I had never felt it sink before. I guess this was our “welcome” to parenthood.
Kashton’s TGA journey
We pulled up, checked in and walked through a rather intricate maze to get where we needed to be.
The 4th floor. Cardiovascular Intensive Care Center. Room 1105. Our new home.
Our nurse could not have been more amazing. She welcomed us, gave us time to touch our baby, and then told us absolutely everything we needed to know. For the first time, I felt a little relief. This is where we needed to be. I was by Kashton; I was able to touch him and kiss him as much as I wanted.
I spent three days asking myself what I did “wrong” or what we did to deserve this; even though I was constantly reassured that it was unpreventable. My husband and I were both able to hold him, both able to try and feed, and we never left his bedside.
In my moments of doubt, my husband repeated the words, “We were made to be his parents. We need to be strong for him and strong for when we bring him home.”
We both held on to our optimistic view of our future, and I think that’s what got us through.
It got us through the six-hour open-heart surgery on our 4-day-old infant and the intubations, extubations, and re-intubations when he “failed” his breathing tests. It got us through watching the scale fluctuate on the daily, dropping down to a mere 4 pounds and all 25 days and nights of beeping monitors, feeding tubes and sounding alarms due to inconsistent heart rhythms and spikes. And it got us through the learning curves that come along with becoming a heart parent: The need to advocate, the understanding of “two steps forward, and one step back,” and being challenged in ways you’d never even be able to plan for.
This optimistic view got us through and eventually, we brought him home.
Our life now
This child became our unforeseen miracle. He became the one to teach me something new every day, when I thought I would be the one teaching him. His heart condition opened my eyes to new perspectives and a new definition of what it means to parent and protect. I spent many hours asking myself why I had been dealt this deck, when in all reality—it’s been a gift I never imagined.
In October we celebrated his two year “heart-iversary.” Two years since they told us that his arterial switch was a success and wrapped us in their arms to physically feel our relief.
Kashton is not only healthy, but thriving. On the exterior, he is just like any other 2-year-old, but with a little extra “badge” that lay vertically down his chest. Kashton has a level of joy and love, that I think only a heart warrior would have.
Sure, we will always worry a little extra with Kashton, we will always dread that annual EKG and heart check, and always take extra precautions when it comes to his health. But for now, we get to live a life of gratitude that he is here with us.
Our warrior, fighter and unforeseen miracle, Kashton. Oh, how you are loved.
Continue to read about Kashton’s life and learn from other heart moms as they share their stories during CHD Awareness Week on Allison’s blog: Midwest Millennial Mama.
Kashton’s Warrior Walk
Kashton’s family is hosting the third annual Kashton’s Warrior Walk and silent auction in Superior, Wisconsin. This walk is dedicated to different organizations each year. Participants fundraise, walk and take part in the silent auction. This year, the money raised will be donated to Children’s Minnesota.
Learn more and sign up for Kashton’s Warrior Walk here: https://kashtonchdwarrior.com/