About this campaign
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On January 20th, 2019, we brought home a healthy baby boy, or so we thought...
At 10 days old, our worst fears were confirmed, and Conrad was diagnosed with 3 holes, and malformed heart valve, and a narrowing aorta. He barely had a pulse in his extremities, a common symptom of coarctation. After that, it was all downhill. He stopped nursing and slept all day, prompting many calls to the pediatrician, urgent care, and the cardiologist. On February 1st, he began vomiting, so we raced to the ER. There, he was diagnosed with heart failure, and we awaited transfer to St. Louis for imminent heart surgery.
After the longest ride of my life, listening to my newborn scream for 90 minutes in the back of an ambulance, we arrived at St. Louis Children's Hospital where we spent 4 days "bulking" him up and waiting for an open surgical slot.
February 6th was not the longest day of my life, somehow. Blake and I woke in his hospital room, showered, and held him. As the nurses wheeled him back, I took in his face, tucked him in his blanket, and made sure he had his pacifier, the only comfort I could offer. I collapsed into Blake, and then we waited.
Blake drove to Springfield to get Cecily so we could all be together, regardless of the outcome. Finally around 6 that night, he was out of surgery and placed in a room. The image of him hooked up to a dozen machines, lifeless, with a giant bloodied bandage across his chest will never leave me. The seasoned nurse with me was confused by my sobs- we were the lucky ones. Our son had made it out alive. At that point, I thought the worst was behind us.
In the following days, we had countless x-rays(sometimes the middle of the night), medication adjustments, rounds, respiratory therapists, social workers, and visitors(THANK YOU, Lulu, Jenna, Rachel, Brandon, and everyone who held down the fort both physically and emotionally). Every ounce ingested, every dirty diaper, everything was measured. Every wire removed was a small victory. Finally, after 2 weeks there, weathering pain medication withdrawals(do not recommend), and trying nearly everything on the cafeteria menu(looking at you, sad smoothie), we were discharged. Again, we thought the worst was behind us.
What followed was a flurry of phone calls and days: attempting to fill prescriptions(spoiler alert- no local pharmacies could fill his pain meds at the dose prescribed), meticulously documenting every bottle, every ounce, and weight checks twice a week. Finally we were referred to feeding therapy(last ditch before a feeding tube), and it literally saved his life. Ms. Susan started us on thickener, suspecting a vocal cord issue, and at last our miracle baby started to turn a corner. ENT confirmed a paralyzed vocal cord(a common result of intubation and/or coarctation repair). Life got easier after that. He gained weight and met milestones. Finally I felt like I could breathe, and I stopped worrying he would drop dead.
Fast forward to today, we hope the worst is finally behind us. We see cardio once a year currently- all his repairs look amazing. His malformed valve(bicuspid aortic valve) is our problem child at the moment, and only time will tell if he'll need surgery in the future. But today, he is healthy; he is happy; he is full of an energy Starbucks wishes they could trademark. We are SO LUCKY, and because we are not currently in the throws of appointments, hospital stays, medication lists, and testing, our focus is raising awareness and funding research. Research is vital for CHD detection and treatment. Scientists are closer than ever to finding the cause, which will one day help prevent CHDs all together. By purchasing a shirt, you are funding research and spreading awareness. 10-15% of each shirt sale will go directly to The Children's Heart Foundation.
Many thanks to past supporters and those who've been with us every step of the way.
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