Bradley was born pre mature at 36 weeks, not a whole lot but just enough. He was born 6lbs 2oz, and 19 inches long via emergency C section. My placenta ruptured, we both almost bled to death and he was losing oxygen. He recovered amazingly, and we went home 2 days later!
Well about 7 days after we brought him home, his newborn screening came back abnormal. So we had to go back for further testing. His newborn screening came back positive for PKU! Which basically means his father and I have one broken amino acid gene. That gave Bradley one complete broken amino acid gene. He cannot have protein! Mainly meat eggs milk or fish.. We count protein, and phenylalanine right now. We just barley started baby food actually!
We had a rough 3 months, i was breast feeding and he just randomly one day decided he’d rather have bottle and weaned himself off. So i lost all my milk supply despite pumping every 2 hours! It was awful…. So his phenylalanine levels stayed in the danger zone, super LOW! i mean he was in the micro deciliters. So we had to switch to formula! So we were in normal range for about 2 weeks and then his phenylalanine shot up to higher 400’s. He’s doing spectacular now, learning a ton. We figured out we have fingers and how to say “momma”
I will start giving weekly updates as we go! This was a fabulous start, and in excited to continue this journey. I will continue to practice this blog.
PKU Adventures with Bradley 