"Some babies are just fussy eaters"… I’ll never forget these words from our labor and delivery nurse when after I gave birth to Bowen. Hindsight is 20/20, and in our case, Bowens difficulty staying latched even in the 48 hours after being born was a precursor to a much bigger story and a much longer journey than I’d ever imagined.
Shortly after we came home with Bowen, our 2nd child, he struggled to eat more than an ounce of breastmilk, struggled to latch and would frequently gag and turn away while trying to eat. He coughed and his chest sounded junky, like he had pneumonia all the time He also wasn’t gaining weight, and in 2019, Bowen was admitted to Children’s Hospital Colorado for failure to thrive. He went through a battery of tests including echocardiograms, x rays and a swallow study. The swallow study confirmed significant aspiration and when we went home from the hospital a week later, he was placed on a NG tube for feeding. At this time, he had the diagnoses of: pulmonary hypertension, significant aspiration, dysphagia, failure to thrive, PDA and PFO in his heart and infant reflux.
In the hospital, my husband and I learned how to place the NG tube ourselves, how to measure from the ear to the nose, then from the nose to just below the sternum, to ensure proper stomach placement. We learned how to read PH strips, how to fortify breastmilk to higher calorie content and how to convert everything to milliliters. The summer of my maternity leave fly by in a flurry of medical appointments and feeding therapies. Three months later, we met with the Aerodigestive team at Children’s Colorado, as we prepared for Bowen to have scopes and biopsies done to diagnose his condition. Bowen was diagnosed with Tracheomalacia when he was 3 months old. At that time, it was also recommended we move forward with a g-tube for feeds, since he was frequently pulling out the NG tube and his dysphagia and aspiration had not improved in subsequent swallow studies.
When we met with Bowen’s Aero team after the scopes, his ENT, Dr. Wine, mentioned there is a surgery to correct the tracheomalacia, but with his collapse being 70-75%, they did not deem it severe enough to move forward. His care team had a multitude of other care ideas for him that did not involve such an invasive surgery and the plan at that time was to start him on Flovent for his lungs and place the NG tube. We would continue to work with feeding therapy to address feeding goals. Bowen’s biggest challenge: stay healthy and stay out of the hospital.
Our scariest moment with him actually came in November 2020 during a routine adenoid removal. Bowen was under anesthesia, but unconsciously aspirated betadine which led to chemical pneumonia. He was in the hospital for 8 days, 6 of which were in the ICU at Children’s. When we got home from the hospital 2 days before Thanksgiving, our little stinker began walking and within 48 hours of being home, he was no worse for wear.
After getting Bowen’s diagnosis, it was definitely a relief to have SOMETHING we could attest his symptoms to. Shortly after, I began doing research into his condition and found the Facebook group "Cure TBM Tracheobronchomalacia Support Group." I also found "Love for Malacia Babies" Facebook group which has helped me connect with other parents of little ones. Reading others stories has helped normalize what has been a really big scary world. No one prepares you for being
a parent, let alone, the parent of a special needs baby. Our journey with Bowen has taken us to the highest of highs, and lowest of lows. Being his mama has sparked a faith in me that I didn’t know I needed and a strength I didn’t know I had. Bowen’s condition is a blessing in our life and I refuse to see it any differently. My husband and I are stronger people. Our older son is learning how to love and be compassionate in a way I could not have taught him without having a special needs community around us. Now, I joke that I am a cardiologist, pulmonologist, ENT and Gastroenterologist… all “by proxy” for the amount of knowledge I have gained in being Bowen’s caregiver.
As he approaches 2 years old next month, we’ve been able to manage all of his illnesses at home without the needs for urgent care or hospital visits. He does seem to get sick a bit more frequently, and every illness we hold our breath that *this* will be the one that lands him in the hospital. Knock on wood, we’ve been fortunate.
I could think and talk about all we have lost in his journey, after all, we have spent 350 hours in overnight stays at the hospital. We have had 4 swallow studies and counting, at least 6 or 7 x-rays, MRI’s, and 2 echocardiograms. We’ve done a sleep study, blood work, genetics consultations and we have seen at least 9 specialists in one capacity or another. He has been under anesthesia 5 times.
But his story and our family story is more about what we have gained. An appreciation for every breath we take and ever milestone our kids are able to reach. With God's grace, Bowen will thrive without the need for an invasive surgery as he continues to be well managed with medication. Time will tell what our future holds but we don’t plan on going down the route of cardiothoracic surgery if we don’t have to. Seeing how Bowen struggled after surgery in November, we are not keen to put him under unless it were a life or death situation. He is growing and thriving. He is the happiest kiddo and so friendly. He is talking up a storm, runs around faster than his feet can carry him and he is developing a passion for hockey, like his mama. From the onset of his diagnosis, his doctors said what he would need is time and growth. So that’s what we are giving him. The time to be a toddler and the space to grow into an amazing, resilient little dude to which I owe so much.