Free A Life Everlasting by Sarah Gray Page A

long-lasting benefits. Thomas got some of this since he was breast-feeding, but I used the pump so we could give some to Callum as well.
    That evening, Ross wheeled me down to the NICU with the containers of colostrum so we could feed and visit Callum. The first time I saw his face after the birth, Callum’s cheeks still had the impression of the strap that held the mask from the CPAP, or continuous positive airway pressure, machine that was helping him breathe. He blinked his dark eyes and shifted his glance from side to side, as if he were suspicious. The nurses recommended I give him skin-to-skin contact, which means getting the baby as naked as possible and holding him against as much of my skin as possible. Skin-to-skin contact has been found to calm babies, help regulate their body temperature, and expose them to safe bacteria. It seemed a little weird to take off his clothes and my gown right there in the NICU, surrounded by other babies and parents, but I did my best. He was still connected to some tubes, so we didn’t go far from the incubator. He seemed to like the skin-to-skin enough, but he didn’t quite get the hang of breast-feeding.
    The next morning, Thomas had a seizure: his arms went to his side; his entire body tensed and then convulsed. He seemed to be holding his breath. Here it comes , I thought. This is the moment we’d been fearing.
    We buzzed the nurse, Brandy Celnicker. I was grateful to hear that she had cared for a baby with this condition before.
    â€œIt’s okay. This is normal for a baby with anencephaly,” Brandy said. “This is how you fix it.” She tapped him on the collarbone, and he calmed down. Thomas looked confused and scared as he caught his breath. His body language seemed to say, “What’s happening to me, Mom?” I was helpless as he suffered. I wanted him to live, but not if he was going to be in pain the whole time.
    During the next few days, my room was bustling with visitors, both social and professional, including our parents, brothers and sisters, and various in-laws, cousins, and friends. We also met with a grief counselor, WRTC reps, a genetic counselor, Phil Brooks, and my doctors. It was a strangely busy time.
    Thomas continued to have tonic-clonic, or grand mal, seizures, increasing in frequency with each day. His doctor said that these might be caused by overstimulation—like bright light, loud noises, commotion, getting a bath—or even by being too cold. Whenever the seizures happened, we would tap his shoulder the way Brandy had taught us and hold him until he came out of it. Then I would breast-feed him or give him some drops of sugar water to calm him down.
    With each passing day, it became a possibility that we might actually take Thomas home. Having expected Thomas to die within minutes of his being born, we were amazed that, four days later, he was still with us. I started to think, What if he lives for a month? Or three months? Is he going to be the one who beats the odds?
    Do we need to secure day care?
    Looking back, I remember something that didn’t concern me at the time but now realize was a sign of what was to come. Ross and I had been asked to write down every time Thomas breastfed or drank from a bottle. Because I was recuperating from the C-section and couldn’t really get out of bed, Ross took primary responsibility for feeding, changing, and looking after Thomas, sohe also took on the job of recording secretary. If Thomas drank from a bottle, Ross would make a note of how many milliliters he drank. The largest feeding he ever recorded for Thomas was seventeen milliliters, which is about three and a half teaspoons. Normal newborn feedings are recorded in ounces, a unit of measurement that is thirty times the size of a milliliter.
    On day four, a nurse came in to check Thomas’s meal chart.
    â€œDid you guys forget to write down some of his feedings?”
    Ross looked up. “No, we got