Supporting the Radermacher Family

Our heart journey began at our 20 week ultrasound when we found out that Adalind had something wrong with her heart.  We were referred to CentraCare in St. Cloud where we were told that she had pulmonary stenosis.  The rest of my pregnancy was a blur of ultrasounds, specialists, medical terms, what-ifs and we’ll see’s.  Her condition also became more complex as time went on.  Her official diagnosis once she was born was, Hypoplastic Right Heart Syndrome, Tricuspid Atresia, Pulmonary Stenosis, Severe Miltral Valve Regurgitation, and underdeveloped pulmonary arteries.  She has had 4 open heart surgeries and multiple heart catheter procedures.  She is now 11 months old and was only home for a couple of those. She had many complications after her 3rd open heart surgery which required extended vent support and sedation. Adalind ended up with multiple issues from that including lung disease, osteopenia (brittle bones), hypothyroidism, left and right femor fractures, right humerus fracture, spinal compression fractures, and left lung diaphragm paralysis that needed plication surgery.  We tried multiple times to get her off the breathing tube and it just wasnt working. My husband, Ryan, and I made the very difficult decision to go through with a tracheostomy and permanent feeding tube.  It was the BEST decision.  We were finally able to start weaning sedation.  The sedation weaning and physical therapy have been hard but she is awake and happy and able to do more baby things. We still have a long way to go but hopefully, within the next few months, Adalind will be coming home.  

I was able to be with Adalind for the first 9 months because my coworkers donated their vacation time to me. I ended up having to go back to work in January so that we didn’t lose our medical insurance.  Ryan’s mom quit her job to be with Adalind during the week and then we take over on the weekends. Our house was a fixer upper when we bought it back in 2015 and is still being remodeled.  The sheet rock dust and chemicals are not safe for Adalind so we are desperately trying to finish it on week day evenings.  Then I clean and do laundry during my lunch breaks.  We are a bit stressed to say the least. 

We are starting this page to raise money towards Adalind’s medical bills which are roughly $15,000 a year after insurance.