I can almost remember hearing the phone ring. My husband picked it up while I was on the couch nursing our then less than a week old daughter. Her older sister danced around the living room. Usually the phone is my department because I really love to talk, but on this occasion, given the circumstances and the fact that my husband was home during the day, he took it. I knew it was important. I knew it was the pediatrician. We love her. I thought she was probably calling to check in on Z as we had only been home from the hospital for a few days. How nice. My attention was somewhat distracted by our oldest but I could hear my husband saying “Uh huh” over and over and over as he fumbled in his sleep deprived state to find a pen, a feat not easy even on the best of days! He finally said something different, “So you want us to just take her up to the hospital to have her blood checked again?” I gulped but immediately scanned my brain thinking what in the world could he be talking about? Then I remembered the jaundice, it must be the jaundice they were keeping an eye on. So yes, we’ll get that checked. Some more “Uh huh’s” later he was now reaching for that folder they give you in the hospital and keep telling you they are putting all of the important papers in, the hard copies of all of the things they verbally go over with you, the one you never even open: unless you get this call. After what seemed like a year, he hung up and came over to us, the folder in his hand. He recapped the call, we finally found the newborn screening papers (all I can remember seeing next to the letters PKU was MENTALLY RETARDED) and when I finished nursing we quickly packed everyone up and headed back up to the hospital. It really was that matter of fact. Her levels were borderline for “PKU” and after all, it could be a fluke. My husband very calmly relayed our pediatricians call again and explained how she had talked to this one at a local but bigger hospital and she knew someone in Boston blah blah blah, just in case it wasn’t a fluke, and either way it was all going to be ok because she had a plan. I believe things happen for a reason. Looking back, had I answered this call, I would be writing this story much differently!!!
As the next few long sleepless nights turned into very long days, in my hormonal, very tired state I remember sitting up in my bed, holding and nursing this tiny little, warm, uneven breathing human being that I loved more than is possible to describe in words thinking What if this IS true? How can this be? I cried and cried and cried. Then it was confirmed, it wasn’t a fluke after all and we were headed to Boston when Z was 12 days old. M had to explain he needed another day off of work after just going back and we scrambled to get care for our oldest. I remember the 3 hour drive, we hardly spoke as I turned back to check on Z finding her little head so heavy and her neck so weak it kept flopping down as she slept most of the way. I remember them taking blood from her tiny little arm, her scream. Wanting to be strong, and choke back the tears I used any energy I had to smile through it so as not to open the flood gate. I kept thinking, “Is this REALLY happening?” I remember sitting in the little exam room hearing the specialist (what were WE doing with a specialist?) say “There is nothing you did and there is nothing you could have done any differently.” What? My heart sank deeper and deeper. We had a list of questions. We covered them all. We were in shock. I was numb. Our appointments were over and we opened those double doors and headed out into the world with our precious daughter who has PKU. It seemed to be on the mild side, but it didn’t really matter, she had it. Diet for life. What would we do? What did this really mean for her, for us? I cried more at night as we spent the days smiling at our BEAUTIFUL baby, explaining to our families and friends the situation, convincing them that she was OK and it all was going to be OK. Of course, we were really trying to convince ourselves.
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