Originally written: 3/31/18
The days that followed Hadley's diagnosis included many trips to the lab for blood work and then to see the pediatrician. We were scheduled to see an endocrinologist also. Hadley developed jaundice, secondary to congenital hypothyroidism. She was so so sleepy, difficult to arouse, difficult to feed. I was breastfeeding and supplementing with formula around the clock. I could barely put her down. She had so many heel sticks those first few days, she never cried though, she just slept right through it.
Hadley's bilirubin was elevated so Akron Children's Hospital sent a home health aide to our house with a Bili Blanket. We called it her jet pack and kept it on her 24/7. Her only break from it was for heel sticks and visits with the pediatrician. Despite our best efforts, her bilirubin continued to climb.
At birth Hadley weighed 7lbs 3oz. Two weeks later she was down to 6lbs and admitted to hospital for phototherapy to treat the jaundice. You know how I said I could barely put her down? Well now I had to. I had to let her lay under the lights and get well. It was so hard. Unbelievably hard. I wanted to hold her so bad. I only got to hold her for 10-20 minutes every two hours to breastfeed..which she refused to do now. Hadley cried and cried in the little box under the lights. She would fall asleep for 20 minutes or so and wake up again crying. So hard.
I slept standing up with my hands inside the box when Hadley would doze off. At one point a doctor came in to talk to me about Hadley's most recent bloodwork and saw that I was crying. Not sobbing or inconsolable, just a steady stream of tears that wouldn't stop. The doctor seemed confused, Hadley was ok and her labs were starting to look (a tiny bit) better so why was I so upset? I told her that it hurts so much to see Hadley cry that I just want to comfort her and hold her. She told the nurse that was in the room with her to get the incubator, she needed to be more enclosed and the box she was in was too big. A minute later two nurses brought in an incubator, transferred the light and transferred Hadley. She never cried again and I got almost 2 hours of sleep after that, laying down. I still thank God for that doctor and those nurses.
A day and a half after Hadley was admitted her bilirubin finally started to go down instead of up. We were sent home. I'm not sure which one of was happier.