A Life Everlasting

by Sarah Gray

  Then there was a tug: Thomas, born at 10:32 A.M. I couldn’t see him until they put him on a gurney over my left shoulder. He was small, just over four pounds, and covered in blood, but he was squirming and kicking his legs.

  “Why don’t you go see your son,” Kelly said to Ross. Ross walked over to the gurney and picked him up.

  I heard the chaplain say a prayer.

  Then I felt another tug: Callum, born at 10:33, weighing in at five pounds, ten ounces. Kelly placed Callum next to his older brother, Thomas, on the gurney.

  I was a mother. This was my family.

  I heard Ross taking pictures. Then, out of the corner of my eye, I could see that something was wrong with Callum. One nurse was smacking his feet while another held a tiny oxygen mask over his face. We were all waiting to hear him cry, but nothing was coming out.

  He was supposed to be the healthy one.

  Just then, Kelly brought Thomas over to me and whispered, “His heart rate is dropping quickly.” I knew what that meant: he was alive, but not for long.

  She held Thomas near my head and I saw his face for the first time. I was relieved that he was actually born alive and we were able to meet each other before he died.

  Thomas Gray had light brown hair in a circle around his head, like a balding man. From the nose down, he looked like a normal healthy boy. He had a cute, tiny little chin. Like the doctor said, he was missing the top part of his skull, and I could see some exposed red tissue on top of his head. One of his eyes was swelling and the other was closed. He looked scared and confused. His body language seemed to say, “What is going on? What am I doing here?” I thought, This poor little guy. He has no idea what is happening to him.

  This was my firstborn son; this, the first time I ever saw him. And he was dying.

  “I love you,” I said to him.

  “Can I touch him?” I asked Kelly, and she nodded. I stroked his tiny cheek with my finger. This would probably be my only memory with him alive, and I wanted to remember it forever.

  “Can I kiss him?”

  “Sure.”

  I kissed my son on the cheek. I felt tears on my face, and I was overwhelmed by nausea.

  Kelly took Thomas away and brought Callum.

  “Here’s Baby B. I think he looks like his mommy.”

  “Hi, little guy,” I said. He did look a little familiar. “Why isn’t he crying?”

  “We don’t know. We’re taking him to the NICU now.”

  “Should I stay here, or go to the NICU?” asked Ross, starting to panic.

  “It’s okay, Ross, go,” Kelly said. “Thomas’s breathing is improving.”

  “Are you saying Thomas is doing better than Callum?”

  “I’ll be honest. Yes, he is.”

  Ross told me later he thought, That’s it. They’re both going to die.

  Ross put Thomas down on the gurney and followed after the team that was running down the hall alongside Callum’s gurney to the neonatal intensive care unit.

  “I think I’m going to throw up,” I said to Kelly.

  “They’re pushing on your uterus right now—that’s why you feel like that.” She handed me a little pink plastic tub.

  Chaplain Phil Brooks stayed behind with Thomas. He told me later that he lifted Thomas out of the bassinet and held him in his arms.

  “We talked for thirty minutes or so. I welcomed him to the world. Believe it or not, I was actually very centered and felt guided by the Spirit at that time.”

  Concerned that Thomas’s condition might get worse, Kelly and Phil then took Thomas to the nursery, where volunteer photographers Jay and Clarice Gibson, from the nonprofit photography organization Now I Lay Me Down to Sleep (NILMDTS), were waiting. The mission of NILMDTS is to take free professional photographs of babies with fatal diagnoses immediately following birth as a remembrance for the parents. Thomas got his picture taken with my mom, dad, and brothers.

  Meanwhile, back in the OR, I started to feel really sick—like I was drunk, but in a bad way; the room was spinning. I vomited.

  “Looks like last night’s dinner,” the anesthesiologist said. He gave me an injection of something in my shoulder.

  “Give her Pitocin!” Dr. Khoury said. Pitocin is a synthetic form of oxytocin, the hormone that bonds mothers to babies and also induces contractions. They gave it to me to make my uterus contract to stop the bleeding from the incision.

  “I already did,” said the anesthesiologist.

  “Put another one in.”

  I heard someone say, “Get a bag of blood.” Then two bags. Then three bags.

  Someone above me barked, “Code hemorrhage!”

  “Where is the blood?” Dr. Khoury kept saying. “Did you call for it?”

  “Yes, I called. It’s on its way. I’ll call again.”

  “I need it now!”

  “I’ll go get it,” she said and left.

  I imagined that Thomas had already died at this point. I imagined that Callum had brain damage since he didn’t seem to be breathing. Was I going to bleed to death right there on the table, too?

  I was growing weaker by the minute. I felt bad for Ross that all three of us might die in one day, or maybe I was going to leave Ross to raise a brain-damaged child on his own. I wondered how he would afford the mortgage; then I remembered my life-insurance policy and felt a little better. But since I handled our finances, I realized that Ross probably didn’t even know the password to pay the bills online. I should have written down the passwords; so many passwords. Deathbed regrets for the new millennium.

  I wasn’t upset about dying. I thought that whatever came next would be better than this world, which was starting to feel like a festival of miseries.

  “The blood is here.”

  I could sense relief among the people standing around me. I started to feel stronger, like I was waking up. Like I was alive. I later learned that I received three units of packed red blood cells, two units of fresh frozen plasma, one unit of cryoprecipitate, and one unit of platelets. (Cryoprecipitate is a concentrated form of plasma that helps with coagulation; it was originally developed for hemophiliacs but it’s now used often during surgeries when a patient is hemorrhaging. One unit of this comes from five donors.) In total, I received blood donations from ten generous strangers.

  The anesthesiologist said most C-sections don’t take this long, but I was close to having an emergency hysterectomy. My uterus didn’t contract when it should have to stop the bleeding after surgery. One reason might have been the fact that I had been taking Procardia, an anticontraction medication, for six weeks to prevent early labor.

  “She lost a lot of blood,” I heard Dr. Khoury say. “Okay. I’m going to go talk to the family.”

  Then I was done. I heard someone count: “One . . . two . . . three!” And they lifted me off the bed and onto a stretcher.

  “Wow, that was just like on ER,” I said, still woozy with anesthesia. The nurses gave me the red grocery bag filled with test tubes.

  “Were you able to get the cord blood?” I asked. I had been afraid that in the drama something had gone wrong, or the nurses had forgotten to take the blood, or done it wrong, or something. Festival of miseries don’t forget.

  “Yes, no problem,” a nurse said.

  Yes! I was numb, floppy, and completely helpless, but when I realized that blood had been drawn, I felt like a Stone. Cold. Champion. I was wheeled out of the operating room feeling immense relief now that I had possession of these possibly valuable test tubes that represented all the hours of research and interviews and blood tests Ross and I had gone through.

  I was rolled into a small recovery area that was curtained off for privacy. Ross came in, holding a bundle.

  “Who is that?” I still felt foggy, like in a dream.

  “Thomas,” he said.

  “He’s alive?” I was delighted that our little guy had rallied and we would have a little more time with him.

  “Yeah.” Ross handed one of our so
ns to me. “We’ve been getting to know each other a bit.” Ross had been able to spend some one-on-one time holding Thomas up in the nursery before he brought him down to see me in Recovery.

  Thomas’s little pink face nuzzled into my hair. He made little baby sounds. He wrapped all five of his tiny fingers around one of mine. I was delighted when he successfully breast-fed right there in the recovery room.

  The nurses had put a soft blue hat on Thomas, but it kept falling off. I wondered if the hat would hurt his wound and decided to just leave it off. His appearance didn’t bother me. I wished he was healthy, but he wasn’t. After gaining forty pounds, going through surgery, and losing all that blood, I wasn’t looking my best, either. Who was I to judge?

  My family and the NILMDTS photographers showed up and started taking pictures in the tiny, crowded room. My brother Mark is a professional photographer, so there was a lot of posing and clicking. One of the things I thought was, Everyone can see my naked boob. But I didn’t know how much time I had left with Thomas, and I was still on drugs, so I didn’t really care. My family all seemed so serious, like they were holding back tears. Callum was still in the NICU, which was off-limits for the photographer, so Jay wasn’t able to take any photos of the two boys together.

  After a little while a nurse asked everyone to leave, and Ross and I were transferred to a private hospital room. Mark joined us there and took the test tubes of cord blood for Duke. He labeled them “Baby A” and “Baby B,” packed them up, and dropped the package in the FedEx bin in the lobby of the hospital.

  At some point a nurse came in and took Thomas’s handprints and footprints. I was glad she did it so quickly; I figured we didn’t have much time left with him.

  I wondered how Callum was doing. Ross called the NICU, and I heard him say, “Yes, I am Callum’s . . . father,” a shrug and smile on his face as he tried on this new title for the first time.

  When he hung up the phone, Ross said, “They’re running some tests. He’s doing okay. We can go down there and visit later.”

  In the meantime we watched Thomas, waiting for signs that he might die at any moment. But he didn’t act as if he was dying at all; he seemed like a normal baby. He clutched our fingers, he breast-fed, he drank formula from a bottle, he went to sleep in the crook of Ross’s arm, he peed, he pooped.

  My boy crawled up on his elbows and put his head in the curve of my neck.

  Meanwhile, I struggled to learn how to use a mechanical breast pump, which is as uncomfortable as it sounds. Colostrum is the thick, high-fat, high-nutrient, high-antibody breast-milk equivalent of butter that comes out when a baby is first born. It’s a good first meal for a baby and has 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.

  “It’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, so he 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.

  “Did you guys forget to write down some of his feedings?”

  Ross looked up. “No, we got them all.”

  “He hasn’t been eating very much,” she said.

  “We have been trying, but he doesn’t want to eat,” I said. “He spits it out.”

  “Okay, just checking,” she said.

  There was one thing that Thomas seemed to like eating, and that was the sugar water we gave him after a seizure. My brother Ethan and I took turns putting some on his mouth and then watching him smack his lips. He sucked his top lip to get every last taste. We started asking visitors, “Have you seen him eat sugar water yet? Watch this!”

  We learned that Callum was fine, just suffering from what is informally known as “Wimpy White Boy Syndrome.” Male Caucasian babies are thought to take somewhat longer to develop than babies of other races, so when they’re born prematurely, they tend to be weaker.

  On Friday, two notable things happened. The first was that Callum was released from the NICU. The second was that I had to make one of the strangest phone calls of my life—to the funeral home.

  “We have a funeral tentatively planned for Monday, but something unexpected has happened. Thomas was born alive, and he’s still going strong. So we are going to need to postpone. Is it okay if I call you later?”

  There was a pause. Then, “Yes, of course.”

  I had to postpone a funeral because the guest of honor was still alive.

  Before we could take Callum home, Ross had to take him to the “Car Seat Challenge” in the hospital. This is a test where they put a baby in the car seat in a simulated ride to make sure the baby will be okay riding in the vehicle, and Callum aced it.

  The minimum weight for a baby
to ride in a car seat is five pounds. Thomas had lost weight since birth, down to three pounds, four ounces, so he didn’t meet the criteria. The hospital gave us a special contraption, called a car bed, that is made for just this occasion. It is essentially a white plastic box that gets strapped into the backseat.

  We were also asked if we wanted hospice care. It seems naive now, but I didn’t fully understand what the term hospice care meant. I thought it was just a visiting nurse. It wasn’t until later that I understood that hospice care is recommended by a doctor only when the doctor thinks the patient has less than six months to live and the patient has decided to die at home as comfortably as possible.

  That Friday night, the four of us slept in my room in the hospital—our first night as a complete family in one place.

  But we didn’t get much sleep. I was nervous at the prospect of leaving the hospital and the round-the-clock access to experienced medical professionals who were available literally at the push of a button. I was not sure what we would do with Thomas once we got him home. We hadn’t planned for this.

  But sure enough, on Saturday, March 27, 2010, we took the twins home from the hospital to our condo in Washington, DC. When we arrived, one of the hospice nurses was already at our door, buzzing to be let in.

  The house quickly became chaotic with people visiting and the door constantly buzzing with deliveries of flowers. I was grateful that our families were playing with Callum while Ross and I looked after Thomas.

  Thomas grew increasingly listless. When I changed his diaper, he flopped like a ragdoll. The nurse prescribed morphine and antiseizure medicine for him. Because he was so small, we gave him the medicine in doses of a fraction of a milliliter.

  When he hadn’t eaten anything in an entire day, I panicked and mixed up some homemade sugar water, but he wasn’t interested. I tried to give him breast milk with an eyedropper, but he didn’t want that, either. I thought if he only ate more, he’d perk up. “C’mon, little guy,” I kept saying.

  I didn’t understand that his loss of appetite was likely a sign that he had started dying. I wish I had figured that out instead of frantically trying to feed him. I thought there was something I could do to help him, but probably there was not.