An Unexpected Normal

Published by She Writes Press

Distributed by Simon & Schuster

Release Date: February 17, 2026

Chapter 1

BIRTH

Five Years Earlier (1999)

“This one's going to do it. Get ready," the nurse, Pat, said. "I see the baby's head. You're almost there."

The pain split me in two. "I have to stop," I said, even as I braced for the next contraction. The midwife, Eve, added her voice to Pat's. "Push." With all my energy, I screamed and pushed my baby out.

"It's a girl," Normann said. He tenderly kissed my cheek, his hot breath warming it. Joy shined through his vibrant sky-blue eyes, and his hand on my hand radiated inner warmth.

My body felt limp, like the pink and blue streamers crumpled on the floor after a baby shower. Eve put our newborn on my chest. I breathed her in, her skin white and sticky. I felt a sense of accom­plishment. Her strong wail indicated she was healthy.

Chiara Rae Angelina arrived on Sunday, April 25, 1999, at 10:04 AM.

I chose the exotic Italian spelling. Normann preferred spelling her name the way it sounded, Kiara. We owned a thirty-foot Sea Ray and planned to call her C-Rae, coordinating with our two-year-old's name. This fulfilled Normann's lifelong dream of having his own Marina and Sea Ray.

Normann and I gazed in wonderment at Chiara, sucking on her fingers. She had thick orange-ish tufts of hair on top of her head and a perfectly round face. She was perfect.

After Eve stitched my episiotomy, she said, "May I take her for a few moments?"

Normann gently handed off the baby to Eve. She looked so small in his hands. At six foot two, with wiry blond hair, thick eyebrows, and a scraggly beard, Normann was Grizzly Adams and MacGyver combined-an earthy guy who could fix a flat tire with bubble gum and a rubber band. His ability to take an idea or a thought and create something tangible amazed me.

At the time, I did not have a clue as to how important these tal­ents would be in dealing with Chiara's condition. At thirty-four, I'd known Normann for almost half my life, and been married to him for seven years.

Minutes later, Nurse Pat returned and placed a wrapped clean, fresh-smelling, nine-pound newborn at my breast. Her Apgar scores were great, nine out of ten. Her latching on with a strong suck, tug­ging slightly, filled me with relief. After her feeding, Normann and I took turns holding her, the hospital blanket rough in comparison to her delicate soft skin.

"Call Marina," I said to Normann.

Normann dialed my sister. When Marina got on the phone, we jointly said with smiles on our faces, "You have a little sister." She whooped her delight. Normann called the grandmothers to share the good news. Hours later, I was transferred to a spacious room in the maternity ward where I slept. Chiara spent time in the nursery, giving Normann a chance to go home and refresh. The maternity nurses brought her in every four hours for me to breastfeed her. She ate heartily.

The next day, I dozed off and on until Normann returned. The morn­ing maternity nurse, Kathy, brought Chiara in at ten o'clock sporting a pink bow in her hair. During that feeding, she continued to feed with a strong suck onto one or the other breast for an hour. She emit­ted a soft burp. Normann and I reveled at our miracle.

Marina's pediatrician, Dr. Denise Lippitt, entered my room. "Congratulations!,,

"You've come to visit your newest patient?" Normann beamed.

"This is my favorite part of the job. Oh, she's beautiful. May I take a look at her?"

Doctor Lippitt examined her and stated that her vital signs were good. I reported that she'd been eating every four hours with no problems latching on. The doctor left.

But an hour later, Chiara became agitated and her newborn cries relentless. Normann paced with her through the hallways to calm her. He returned to our room and placed her in my arms. On my shoulder, her cries pierced my ear. I tried to comfort her, but it didn't work.

My internal questions started: What had I eaten to make her so agitated? Did she overeat and cause herself indigestion? Was some­thing else going on? This hadn't happened when Marina was born.

Normann changed her diaper. When he laid her in the wooden bassinet, she calmed down.

I watched Chiara and noticed that she was staring. I called Nurse Kathy. "Look at her. She's sleeping with her eyes open."

"She seems fine. It's time for her two o'clock feeding." Kathy laid her at my breast and left the room.

I tried to feed her, but she wouldn't latch on. Normann sat on the chair beside the bed, watching. When I gave up, he took her.

"How did the feeding go?" Kathy asked when she returned.

"It didn't. Maybe she's not hungry."

"Earlier, she was really crabby," Normann said.

"I wouldn't be concerned," Kathy said. "She had a good feeding this morning. Maybe the crabbiness was from overeating."

"Or it could be colic," I offered.

Had I understood the ramifications of wanting nothing to be wrong and sensing something wasn't right, I may have acted differently.

Normann held Chiara in his arms, rocking her as I relished her quiet moment. Sporadic bits of conversation erupted as people passed in the hall. We caught her staring off into space several more times.

An hour later, Normann said, "Maybe this is what was bothering her." Normann sniffed the air and changed Chiara's diaper.

Marina bounded into my hospital room, her tiny feet padding the floor. She crawled into my bed, kneeing my legs as her small toddler arms strangled my neck and hugged me. My sister Debby also brought her ten-year-old daughter, Dani. Years ago, Debby and I were mistaken for twins, with similar facial features, long, thick red­dish-brown hair and brown eyes, and slender builds with the same height of five-foot-six.

Marina wore pink-flowered overalls with a solid pink turtleneck. I smiled. rd have two girly-girls to dress, pretty in pink. I looked at my toddler with her delicate oval face with large brown eyes ringed by lush, dark lashes and baby-fine amber hair. I wondered if Chiara would look like Marina and me or if she would take after Normann and have blue eyes and crazy blonde hair.

"I miss you. When you coming home?" Marina held her hot hands on my cheeks.

"Tomorrow. That's when we'll bring your sister home."

Marina glanced at Normann and when she noticed Chiara in his arms, her mouth formed an 0. She scooted her bottom next to me and put out her arms to hold the baby. Debby took Chiara from Normann and placed her in Marina's arms. Marina giggled. The kids took turns holding Chiara. Marina soon got over the novelty of a new sister and went with Normann to view the babies in the nursery. So much for sisters bonding.

"Hey, you didn't tell me that Marina doesn't drink pop," Debby said with a laugh.

"What! You gave her pop?"

"Yeah, she spit it out. At Kati's birthday party. She said there were too many bubbles," Debby said.

I gasped. "Why would you give her soda pop?"

"Don't worry. I'll get the orange stains out of her dress. She likes Cheetos too."

I grimaced. I pictured Marina eating potato chips, cake, and candy washed down with a soda. Foods I had hoped not to introduce into her diet for many more years.

"Oh, come on," Debby ribbed, "someone has to burst Marina's protective bubble. With two kids, you'll be licking dropped pacifiers like the rest of us."

Debby rocked Chiara in the rocking chair. "She's sleeping with her eyes open."

"She's been doing that. The nurse checked her vitals half an hour ago and said Chiara's doing fine." It wasn't just me sensing some­thing wasn't right.

After Normann left for home, Debby said that it sounded like Chiara was having difficulty breathing. I strained my ears to hear.

"She's fine." I wanted to believe the nurse knew better, yet it gnawed at me.

Debby shook her head. She had four kids and didn't agree. We caught Chiara staring into space, again and again, brief spurts last­ing five seconds.

When my mother and younger sister, Valerie, came to visit, Debby left with the kids. Mom, with her short silvery-blonde hair and pea­green eyes, was seventy years young, even after raising nine children.

I tried again to feed Chiara. "She's been cranky and shows no interest in eating."

"Try changing positions," Mom suggested.

"What did you eat last night?" Valerie asked.

"Maybe I gave her gas from the broccoli."

They took turns holding Chiara. Sleep interested her more than eating.

"There's something wrong. Call the nurse," Valerie urged. "We're leaving. I'll tell the others not to come until they hear from you."

"Okay, love you."

When the p.m. nurse, Karol, came into the room, she asked, "How's Chiara doing? Have you been able to feed her?"

"She won't latch on. Her last feeding was at ten o'clock this mornmg. . ,,

"Okay. I'll take her back to the nursery and observe her. You rest." It was half past six when she placed Chiara in the bassinet and wheeled her out of the room.

By eight o'clock, my breasts were feeling uncomfortable. I called the nurses' station and asked them to bring Chiara into the room.

I expected her rested and ready to breastfeed, but I couldn't entice her. Her warm cheek rested against my breast as she continued to sleep.

When I called the nurses' station, Karol came. "She won't stay awake long enough to eat."

"We'll try different positions."

Karol repositioned Chiara at my breast in several different holds. "Okay. Let's take her clothes off. The coolness of the air might wake her."

Karol undressed Chiara in my lap. Still unresponsive. Karol patted the bottom of her feet.

Nothing. I held my breath, willing her to wake up and feed. I wanted to scream that something was wrong. "What else can we try?" Feeling apprehensive, I looked to the nurse for answers and assur­ance. "Are you sure nothing is wrong? This isn't normal."

''I'll wet a washcloth." Karol went into the bathroom. She returned and touched the cool damp washcloth to Chiara's arm, her leg, and to her stomach. Finally, Chiara stirred. We spent twenty minutes trying to increase her level of consciousness. But as soon as we laid her next to my breast, she closed her eyes like a baby doll and was back to sleeping.

Karol noticed my tiredness. "Ms. Angelini, I'll take her back to the nursery and keep an eye on her."

I questioned my instincts as a mother. This hadn't happened with Marina. The sleep I needed continued to elude me. I tried reading. I stared at the ceiling. I tossed and turned and pummeled the pillow. I needed reassurance that my baby was okay. I didn't want to be a pest, so I quashed my concern into the dark recesses of my mind and waited for an update.

Later, Karol reported that Chiara had had a bowel movement and an ounce of formula from a bottle. "She's resting and seems to be feeling better."

My breasts were aching. I wanted to believe the worst was over. She drank an ounce. She was okay. I expected relief at two in the morning.

At two and six o'clock in the morning, the night nurse roused me and placed Chiara in my arms. Both times, she was fast asleep, and I couldn't wake her. Tired myself, I pushed the call button for the nurse to take Chiara.

"How did she do?"

"She didn't eat." They must have recently fed her in the nursery. Exhaustion had its way with me. I rolled over and slept.

How could I overlook obvious signs and instead rely on the com­forting words from the nurses telling me what I wanted to hear? I wanted to believe she was healthy. And wanting to believe she was healthy didn't make it true. That decision haunted me. I had missed another opportunity to save her from her future.

________________________

I was dozing when Marina and Normann arrived at eight the next morning. Marina ran to my bed.

"Mommy, I want you home." Marina pouted and climbed onto the bed. I was stroking her hair when Nurse Kathy knocked on the door.

Normann exited the room to talk with Kathy. Five minutes later, he reentered.

"Kathy wants Chiara to see a pediatrician before we take her home. I'll go along-Marina, stay here, and help Mommy pack, okay?"

I laid out Chiara's going home outfit, a nautical-themed dress, with Marina watching me. My bright smile belied my fear that Chiara might have a birth defect or some other disorder. I enter­tained Marina with the few toys in her diaper bag. I glanced at the clock often, waiting.

Hours passed. Sticky milk leaked from my breasts. Chiara's dress, now wrinkled by my nervous hands, lay in a crumpled ball as I paced the room, trapped. I tried to convince myself Chiara was fine. The nurses on the floor had no information to offer.

Finally, after noon, the pediatrician came to talk to me. "We're concerned because she hasn't eaten since yesterday."

"She ate well at ten o'clock yesterday morning and the day before that."

"The neonatologist is concerned that she still has fluid in her stomach from her last feeding. It may indicate an intestinal blockage. Chiara's temperature, heart rate, and pulse are good. I'll monitor her status and will be back when I find out more."

This tidbit of information pacified me. Maybe the blockage would clear itself up and she wouldn't require surgery. I thought Normann would return any minute. Marina and I played with her toys as I willed Normann to appear. The occasional muffled sound of the hallway intercom made me wonder nervously what was happening. My bottom throbbed so I convinced Marina to lie on the bed with me, hoping she would nap. After three o'clock, a dazed and confused Normann came through the door.

"Where've you been? I've been out of my mind worrying," I said.

"They're admitting her." He sank deep into the rocking chair with his head hung as my heart sank beside him. The wooden chair creaked under his weight.

In panic mode and clamoring for more information, I sputtered, "What happened? What's going on?"

''I've been sitting in a room next to the ICU for hours. The room didn't have a phone to call you. Doctors and nurses kept coming in and out, taking Chiara with them, and then bringing her back. Around noon, they ordered a blood test. We waited another couple of hours. Nobody told me what was going on, and they didn't seem to care that she hadn't eaten anything. I thought at any moment we'd be coming back. Now they have decided to admit her."

"Why a blood test?" I asked.

Marina crawled off the bed and onto Normann' s lap. He embraced her tightly. "I don't know. The doctors are coming to explain what's happening. Oh, and no kids are allowed in the ICU. We'll have to wait for somebody to take Marina before we go back. I'll call my sister."

My mind didn't want to acknowledge a problem. Not with my baby. Problems happened to other people's babies-not mine.

Dr. Lippitt came in and told us Chiara had a blood infection.

It didn't make sense to me as we had taken a precaution to avoid infection. "But I had an IV antibiotic during delivery," I told her.

The pediatrician pursed her lips. "Why would you have an antibi­otic during delivery?"

"Because I tested positive for group B strep with Marina."

I had made it a point to learn about GBS with the birth of Marina. It is a common bacterium found in a woman's vaginal area, harmless to adults. If treatment is not given, a high colonization of bacteria during delivery may adversely affect a newborn. Dr. Lippitt scanned the notations in my chart. "There's no indication you were given antibiotics."

I sat up and stared, wide-eyed, at Normann. Pain shot through my body from the sudden movement. My previous obstetrician who had delivered Marina had warned us of the risks of not treating GBS. Normann stood up, comprehending the implications. He had dis­agreed with my decision to use a midwife. He glared at me, and then turned his attention to the doctor.

"In fact, your records don't indicate you're a group B strep carrier," Dr. Lippitt said.

"Wait. Wait. The midwife said all women were treated as positive at their practice," I insisted. "I assumed all women received antibiot­ics during delivery."

"Your situation didn't fit the criteria based on symptoms."

After Chiara was born, I joined a support group devoted to babies born with GBS who pointed me to more in-depth resources. In my research, I learned that the CDC allowed obstetricians to follow either of two protocols: test for GBS at thirty-five to thirty-seven weeks as my previous OB had done or assume women are positive if they have a fever before, during, or after delivery; or their water breaks twelve to eighteen hours or more before delivery; or they develop premature onset of labor or rupture of membranes before thirty-seven weeks' gestation. If it is determined that GBS may be present, antibiotics are given at delivery. The midwife had ignored my positive status and relied on the second protocol.

"My former obstetrician tested me during my first pregnancy, and it came back positive. He told me that once I tested positive, I would always be considered positive for group B strep."

"Regardless, Chiara is on antibiotics now in the ISCU."

"Is-cue?" I asked.

"The Infant Special Care Unit-ISCU. I'm sorry this happened, but Chiara's in great hands. Your neonatologist has had twenty-two years of experience, and this hospital is one of the best."

Thirty minutes later, the neonatologist, Dr. Milford, came in. With her no-nonsense haircut and direct manner, she said, "Preliminary blood cultures indicate Chiara has sepsis, a blood infection. We expect her to be released in three or four days. She'll finish the course of antibiotics at home."

"I tested positive for GBS in my first delivery," I explained. "Dr. Lippitt told me that I didn't have an antibiotic during delivery."

"I wouldn't concern myself with that," Dr. Milford said.

"My previous obstetrician told me it was imperative that I have an antibiotic during labor. I wasn't given an antibiotic, and now she's sick. How can I not be concerned?"

I clutched Marina tight, smelling Johnson's baby shampoo. She wasn't sick at birth because they'd given me an antibiotic. Why was no one listening to me?

"We should have this cleared up in a day or two. Visit the ISCU at any time, twenty-four hours a day. I'll be available if you have any more questions." With that, she left the room.

___________________

The clerk led us to a large metal sink and handed us surgical scrub brushes. The wrappers crinkled as we opened them. The smell of disinfectant assaulted my nostrils. The bristles lathered soap on my hands as I washed for sixty seconds, under the nails, up to the elbows. In the ISCU, Normann and I passed a sea of preemies, their translucent skin and fragile bodies like jellyfish. Off to one side, a huge machine provided lung and heart support to the tiniest neona­tal survivor. Parents stood next to incubators. Machines buzzed. We reached Chiara, a whale at nine pounds. She didn't belong here. Thin wires were glued to her chest, an IV injected into her tiny vein, and a tube ran up her nose. This was not at all how I envisioned spending the day with my new baby.

The clerk introduced us to Chiara's neonatal nurse, who said, "Chee-ara has been resting comfortably."

The nurse pronounced Chiara's name with a "ch" sound, rather than a "key" sound. Normann shot me a look indicating my "exotic" spelling would cause people to mispronounce her name her whole life. That was the least of my concerns.

Her machine blared like a church bell on steroids. I jumped. The nurse muted the monitor. She explained that the monitor was highly sensitive, and the change that set it off was within the accepted range. "Would you like to hold her?"

"Actually, I need to pump." My engorged breasts wanted to burst. "I can arrange that. You can pump in one of the family rooms."

She led us to a small room with a love seat and rocking chair. A large, double-breast pump machine waited. She demonstrated how to use the machine and handed me several bottles.

"Put the milk in these bottles, and I'll store them in the refriger­ator. Here are stickers with Chee-ara's name. Place the label on the bottle before you give it to a nurse. I gave you extra bottles for the next three days."

I half reclined, half sat as I pumped. Like a fire hydrant, with pent-up pressure and the gentle coaxing of the machine, milk spewed into the bottles. We headed back to the unit. I gave the nurse the bottle of warm milk, and she put it next to a large syringe. I won­dered how she planned to feed Chiara.

So many wires. I was afraid to touch my baby. But I wanted to hold her tight so she knew she would be okay.

Pain stabbed through my sore bottom as I sat on the cushioned chair next to the bassinet. The nurse finagled wires and then placed Chiara in my arms. Through all the jostling, she remained asleep. She looked at peace.

The nurse said, "We need to feed her, so we'll use an NG tube." I looked confused. "The nasogastric tube goes into her nose, down her throat, and into her stomach." She attached the large 60 cc syringe to the tube extending from Chiara's nose.

"It works using gravity. When I hold the syringe higher than her body, the milk will flow into her stomach." She poured two ounces of milk into the syringe and undamped the tube. The milk began to flow. "Who wants to hold it?"

Normann held out his hand.

"How many parents get to say they feed their kids this way?" I used humor to try to convince Normann this was just a temporary setback. It fell flat. I had no idea that our situation would worsen.

For another half hour, we stared at our baby, stroking her creamy soft skin. In a day or two, everything would be okay. She was getting the best care possible. The hospital was first-rate. The doctors had handled many cases like this before and were doing whatever they could. I told myself all these things over and over again. I needed to believe them for my sanity and Normann's.

There were no sleeping accommodations for mothers, so when the visit was over, we left the hospital as we came, just the two of us.

Normann dropped me at home and left to pick up Marina at his sister's house. I looked at the empty cradle. Alone, the facade I had maintained in front of Normann collapsed. I gasped for air between sobs.

Yesterday, we had looked at each other as we stood on the prec­ipice, our future appearing boundless and limitless with our two healthy girls. Today, leaving the hospital without Chiara, I glanced downward at the jagged rocks and sharp crags and felt scared.

Thirty minutes later, the back door clattered open, and Marina pounded up the stairs yelling for me. I wiped my face on my cotton sleeve and adjusted my emotional state. I greeted her with a strained smile as if I could disregard the past twenty-four hours. She hugged me tight. On my knees, I held my two-year-old, my eyes searching for any consolation from Normann. He glanced at the cradle and turned away.

He blamed me.

___________________________

The next morning, Normann and Marina were eating Cheerios at the table when the hospital called. Chiara's complications overnight made me dizzy-respiratory failure, seizures, meningitis, may not survive. I struggled to breathe, my body numb. Within half an hour, we had a babysitter at the house and had returned to the hospital.

The antiseptic smell entering the ISCU flipped my stomach. After we scrubbed our hands, Dr. Milford led us to one of the family rooms. We were too anxious to sit.

'Tm sorry I told you GBS was too remote to consider. I was amazed when the culture grew strep bacteria. When a child has sepsis, bacte­ria can travel through the spine to the brain. We performed a spinal tap and EEG. She may have spinal meningitis. The staring spells you noticed were seizures. We performed a CT scan. We don't know the long-term outcome, but the next few days are critical for her survival. There's likely brain damage."

I collapsed into a chair. My baby, on life support. Only three days ago, I'd given birth to a healthy baby girl. I thought of her first day when Chiara sucked on her fingers and suckled from my breast.

Normann asked, "Isn't meningitis contagious? Have we been exposed?"

She said, "There are many forms of meningitis. This one isn't contagious."

I said, "Help me understand. Yesterday, she had a minor blood infec­tion. Now you're telling us you don't know if she'll survive?" The wave of emotions from voicing those words forced out the tears I was stifling.

Caught between anger toward the midwife for not treating the GBS during delivery and guilt over my ambivalence to Chiara's symptoms, I squeezed Normann's hand to keep it together.

"Would you like me to speak to the midwife as to why you weren't treated for group B strep?” Dr. Milford asked.

"No, thank you.” Right then I couldn't think straight. I needed to focus my attention on Chiara. I needed her to be healthy.

Dr. Milford said, I’m stunned by the rapid growth of bacteria in her system. The next few days are critical.” She put her hand on my arm. "Before you go in, I want to prepare you. She's on a ventilator. She's in a medically induced coma, and we want to avoid any form of stimulation. We're recommending that you don't touch her. It may trigger more seizures.”

When we entered the ward, nurses hovered over Chiara, monitor­ing the machines. I thought it ironic that their intent was to elimi­nate stimulation, yet the lights and the beeping of her machines were constant.

Dr. Milford's words hadn't really registered. I wasn't prepared to find our newborn baby lying in the Isolette, tape on her face, a tube secured down her throat for the ventilator. The machine whooshed in a hypnotic rhythm, linking her to life. No other parents were in the room.

She was deathly still.

The weight crashed down on me, and I collapsed alongside the incubator in a fetal position, awash in tears. Normann bent down and embraced me from behind, and I leaned into him. His beard scratched the back of my neck. His body quivered. I turned to put my head on his shoulder, and we broke down, his arms wrapped around me. I had been in survival mode, coasting along, not believing our reality in front of us.

'Tm Chee-ara's nurse. If you need anything else, please ask. I'll find you an answer."

Normann gave me that look.

"All right. We'll spell it K-1-A-R-A," I conceded. Before she was born, we had fought over spelling. Now I didn't care. I scratched out the original spelling and rewrote her name phonetically.

We stayed next to Kiara's Isolette for hours. When I stood to stretch, I looked around the ISCU. Where was the baby on the heart/ lung machine? I couldn't help but think of my best friend's husband. Last month he'd died of a heart attack. And now maybe this baby. Death comes in threes-could Kiara be next?

"What happened to the baby in the machine?" I asked the nurse.

She whispered, "Transferred to Children's Memorial." Whew. I forced the superstition out of my mind.

Later in the day, we spoke with the pediatric neurologist, Dr. Portman, from another generation: old-school and blunt, no bedside manner. "She suffered infarctions in the basal ganglia, causing isch­emia and edema."

Normann said, "Wait. Back up. What do those words mean?" Several nurses behind the desk rustled papers and answered the phone.

I said, "Would you hold that thought? I need to write this down." As one nurse handed me a pen and paper, she gave me a sympathetic smile. I paused to breathe.

His annoyance suggested our questions were wasting his time. "If Kiara survives, she may permanently need the vent, so you may want to consider placing her in a home."

I said, "A home?'' I wanted to say, What? We don't live in the Dark Ages.

Dr. Portman continued, irritated. "She won't have any motor con­trol. She'll need a feeding tube. She may be blind or deaf."

Normann misheard and asked, "She'll have problems with her emotional control?"

"No, I said motor control. She won't have useful function or move­ment of her muscles. She had uncontrolled seizures. I prescribed phenobarbital."

"Would you spell that?" I said.

He grudgingly complied.

His condescending attitude toward us infuriated me. I clenched my jaw tight, refusing to release the few choice adjectives ready to roll off my tongue. He was Kiara's neurologist, and I felt he held the balance of her life in his hands.

Back at home, we researched the new words: seizures (changes in the brain's electrical activity), infarctions (dead tissue), basal ganglia (area of the brain), ischemic (obstruction of blood supply), edema (swelling), phenobarbital (seizure medication), and more.

In the upcoming years, these words and others would become a part of our new language. We would learn more about the brain than we ever cared to know.