Read Saving Henry for Free Online Page B

rate and blood gasses and, I imagine, other stuff. I studied the numbers, the charts, and the levels, trying to understand what they meant, what they could tell me. Hoping, desperately, that he was improving.
    On the second morning, Allen and I arrived at the ICU and saw that the incubator next to Henry’s was empty. I asked the nurse on duty what had happened to the newborn baby who was there the night before. It was a stupid question, perhaps, or at least an obvious one. The bed was stripped of its sheets, the medical equipment shut off. The nurse told us the boy’s name: Henry. I felt a sharp pang of sadness for the tiny boy’s parents, for his unlived life.
    Over the next few days, my breasts ached from the desire to feed our Henry, but my milk had dried up because I was unwilling toleave his bedside to pump milk that he was too weak to drink and that would just be thrown away. For the time being, his nutrition was delivered through one of the many tubes pumping fluids into and out of his tiny body. Were it not for the machines that indicated to the contrary, I would have thought he was dead.
    We stayed as long as we could each day, until the nurses told us to leave. They’d gently shoo us out the door, and we’d stumble next door to the hotel, lay down on top of the scratchy, polyester comforter, clutching the pager they’d given us in case something went wrong.
    But nothing went wrong. In fact, everything went right. Ten days later, Henry was well enough to go home. Dr. Jonas informed us that the surgery had gone perfectly. Henry was not in pain, and the fear that he could turn blue was erased from our lives. Walking back into our home, with our heart-healthy son wrapped in the blanket my mom had knitted and presented to me at a baby shower that seemed like a lifetime ago, was definitely one of the best days I’d had in what felt like a very, very long time.
    Â 
    T he fact that Dr. Hougen had been right about the 99 percent success rate associated with Henry’s surgery greatly boosted our confidence in the team of doctors we had begun to assemble to treat his FA. It also made me feel more comfortable about the idea of returning to work. Four months before Henry was born, I had earned my master’s of social work (MSW) at Catholic University of America, giving a graduation speech to my fellow students about the critical need and our obligation to help repair the world we’d inherited. Afterward, I accepted a job at a national nonprofit housing organization, Neighborhood Reinvestment Corporation, to focus my attention on increasing the availability of affordable housing. That they hired me while I was clearly pregnant was predictive of theway they treated me when I became the mother of a beautiful, very ill, little boy.
    After my maternity leave ended, we entrusted six-month-old Henry to the care of Allen’s parents, Phyllis and Ted, affectionately known as Grandma and Pop Pop Teddy, and I returned to work several days a week. I had mixed feelings about this. Henry was totally healthy by then. Other than monthly tests to check his complete blood counts (CBCs), which evaluated his overall health and attempted to detect a wide range of disorders, including anemia, infection, and leukemia; and a semiannual bone-marrow aspiration and biopsy to check on the progress of his disease, he was a normal, spunky kid. But I still found it hard to leave him each morning. Every day on our way to work, I’d remind Allen not to let me quit my job. I knew I just needed time to get used to being back at work. I always told myself that 99 percent of women in the world had to work to earn money (a statistic I’m quite sure I made up), and so I too would work, and not feel sorry for myself. Plus, I honestly loved my job, my work, and my colleagues. They were among the most supportive, terrific group of people I knew, and I also felt strongly about the work my organization did to help house