Bella's Gift (15 page)

We waited for almost three more hours for the ambulance. Like a caged animal, I circled the room again and again praying for my Bella, unable to focus on anything. They arrived with no explanation as to why it took so long, and as they loaded her into the back of the ambulance, I moved to climb in with her. An EMT stopped me, “I’m sorry, but you’re not allowed to ride in the ambulance with her. It’s hospital policy.”

I wasn’t about to leave my little girl alone in an ambulance! But the EMT wouldn’t budge. I had no other choice but to ride up front with the driver, away from my Bella. Rick pulled the car around and watched the ambulance drive away, and he followed. I was suffocating in a nightmare and could not break out of it.

After Bella was admitted to the pediatric intensive care unit, she was placed in a shared room. A man in uniform stood at the foot of the other bed. He stood with arms folded, feet spread wide, and stared intently at the bed in front of him. What was an armed guard doing in here? I asked the nurse, and she told me it was to keep the other patients safe. I asked her why my baby was in this room. Then, from that bed, hidden only by a flimsy curtain partition, I heard the sounds of violent vomiting.

I gasped and looked at Rick. Before either of us could say anything, alarms went off and two nurses ran into the room. They pushed back the curtain just enough for us to see that the bed was occupied by a teenage boy who was throwing up all over his bed. I wanted to wheel Bella out of the room at that very minute. I rounded Bella’s bed to talk to Rick and spied a pile of soiled linens at the foot of Bella’s bed. Shocked, I realized they were undoubtedly from the neighboring bed. A
deathly ill baby with a seriously compromised immune system could not room with a violently ill teenager who could expose her to who knows what!

I pulled Rick out of the room. “I’m going to the head nurse to get Bella transferred to a different room.”

He put his hands on my arms and said, “Calm down, Karen!”

Bad move. I shook his hands off and backed away, shaking my head in disbelief. Hurt. Angry. No, I wouldn’t “calm down.” My husband was always a feisty, strong, and passionate defender when the occasion arose. Who was this mellow guy? I needed the fighter, to fight with me and for our child. My body went numb. The isolation I felt sent chills through me as I turned abruptly and headed toward the nurses’ station.

“We don’t have any other rooms available.” The nurse turned her attention back to filling out paperwork.

No rooms, huh? I walked down the hallway and rounded the PICU. Several empty rooms. Back at the nurses’ station, I calmly said, “I think there must be a miscommunication, because there are several empty rooms here. My child has a seriously compromised immune system, is critically ill, and is currently in the same room with a vomiting juvenile. If you don’t transfer her to a proper room, I will immediately call Children’s Hospital in Philadelphia and arrange to transport her there.”

The nurse stammered out an apology, remarking that they were very busy. She would see what they could do.

Thirty minutes later we were transferred to a room in another area of the PICU. This room was also shared, but at least there were no signs of vomit. The doctors came in and told us the results of the first round of bloodwork. Bella’s carbon dioxide levels were through the roof, which was caused by
her ineffective breathing, specifically, the fact that she wasn’t exhaling fully. This buildup of carbon dioxide changed the pH in her blood, giving her metabolic acidosis, which changed the rhythm of her heart, causing a heart attack. Currently, she was on a ventilator and had what they suspected was viral
and
bacterial pneumonia in both lungs. They put together a hefty cocktail of various drugs and scheduled more tests with the hope of getting more answers.

Now into the wee hours of the morning, Rick and I were exhausted. Sitting in a chair, Rick fell asleep on the other side of Bella’s bed, phone in hand. His head bobbed up and down as he dozed. Occasionally, he awakened with a jerk, looked around, and then closed his eyes again. In a chair on the other side, I felt there was much more than a twin-sized hospital bed between us. I felt very alone, as if I were the only one who was in the ring for Bella. And worse, I’d been gut punched and I was down for the count. One. Two. Three. I needed Rick to lift me up, to help me protect her.

I crossed my arms on her bed and leaned my head on them. She was asleep now. They’d given her something to help with the pain and so she could rest. Her little hands were balled into fists, pointer finger and pinkie touching. I loved those tiny hands. She looked lost in the yellow hospital gown they had put on her. Even though we had surrounded her with the proper pillows to support her, she barely took up any space on her hospital bed. Her eyelashes fluttered and she shifted her head. I wondered what she was dreaming about.

I jolted awake to the sound of bloodcurdling screams. Rick had jumped up, tense and bewildered. The child in the bed next to us was writhing in pain and screaming like I had never
heard anyone scream before. Bella started wailing and coughing. Monitor alarms screeched as the other child’s parents talked loudly in a language I didn’t recognize. I stood up and started stroking Bella’s head, holding her hand and talking to her. She continued to cry, but the coughing subsided. Doctors and nurses came and tended to the other child as the screaming continued. After hours of nearly constant screaming, I asked the nurse once again if we could be placed somewhere else. We were striking out again and again.

In the days that followed, Rick and I took turns keeping vigil at Bella’s bedside. We became like two shadows, passing each other in fluorescent-lit halls. Thanksgiving came and went. The dream of preparing the great meal with my family: gone. Not being together as a family on Thanksgiving was sad and unnatural. I was home with the children for breakfast, and Rick for dinner. Bridget spent Thanksgiving away from her family to be with us. I don’t know what I would have done without her. She managed the house, took care of the kids, and became a source of strength and support for them. She and Elizabeth did all the cooking that Thanksgiving. We all did our best, prayed together, and counted our blessings.

After six months, Rick was still stoic. He kept it together and was “at peace.” As much as it pained me, I learned what that meant to him. He was at peace if Bella lived or died. And that broke my heart. We both abandoned ourselves to Divine Providence, but I believe we understood that term very differently. I came to accept Bella’s diagnosis while simultaneously deepening my trust in the Lord, but that didn’t mean I wasn’t
going to fight for her. Trust did not mean abandoning her. Rick accepted who Bella was from the very beginning. I loved his acceptance of Bella and I drew strength from it. But as the first six months of Bella’s life passed, I think Rick resigned himself too wholly to the fate many doctors and statistics had predicted for her. He thought I was fighting a fight we couldn’t win.

We were at a hospital that treated our baby girl like an “it” rather than a person worthy of dignity and respect. About a week after Bella had been in the hospital, the attending doctor said he needed to talk. I’ll call him Dr. Grim. He informed me that he would no longer be taking Bella’s arterial blood gases (ABGs). As a nurse, I knew that if a critically ill patient, like Bella, was on a ventilator, ABGs were crucial to monitoring oxygen and carbon dioxide levels, as well as pH and other essential blood concentrations. The ABGs were also a guide for adjusting the ventilator parameters.

Surprised, I asked Dr. Grim why he was doing that. Never referring to Bella by name, he gave me an explanation that made no sense at all. I stood there looking at him as he tapped his clipboard with his fingers, wondering how many parents of special-needs children he had fooled, and asked, “Since when do we take IQ tests to determine a patient’s level of care?” His eyes glazed over me and eventually he admitted that his decision was a means of cost containment. I told him that he was in the wrong profession and should have been an accountant. That was the last straw. Having a baby in the PICU was extremely stressful, but being in this particular hospital added another layer of stress that was wide as the ocean and almost crushing.

Equally disturbing was the fact that Dr. Grim never did a head-to-toe, hands-on assessment of Bella. Rick and I were
taking shifts at the hospital and had just assumed that Bella was being checked when the other person was there with her. In our exhaustion we missed something that is crucially important for our Bella, or for any patient in the hospital, especially the PICU. This moment was a shocking revelation for us.

I called CHOP immediately to organize a transport for Bella. Typically, there’s a chain of command to follow in order to organize a transport, but I wanted to be involved to ensure she was transported immediately. I knew if we waited for Dr. Grim to arrange the transfer, it was not going to happen. Weeping and barely able to speak, I asked the transport team at CHOP to come and get Bella even though transports are never arranged this way. I also spoke with the head nurse at CHOP’s PICU and asked for a bed for Bella. The team at CHOP worked with the staffers at the area hospital and arranged for an ambulance to pick her up. CHOP physicians and nurses would never say anything negative about another hospital, but they heard a crying, desperate mother on the other end of the phone, begging them to come and get Bella. The CHOP transport team could not get there soon enough.

After the transport had been arranged, Dr. Grim came into Bella’s room to apologize and admitted that he never should have suggested withdrawing the ABG tests and he should have been more involved with Bella’s care. I stood there in silence as the tears rolled down my face, thinking about the prayer I prayed every day, the Our Father: “. . . Give us this day our daily bread, and forgive us our trespasses
as we forgive those who trespass against us
. . .” After a few moments I told him that I forgave him and would pray that he would think about that with his next special-needs patient.

When the CHOP transport team walked through the door of Bella’s room, I breathed a huge sigh of relief. Momma Bear could finally get off her hind legs and pull in her claws. They came to care for Bella, but they rescued me too. After a smooth transport, we arrived at CHOP. I was comforted knowing that Bella was in such an exceptional place with an outstanding team. I looked at my sweet little girl and knew she was in the best hands. The stress melted away, and finally I could get some rest. The physicians, nurses, and therapists who cared for Bella were all bright and compassionate. Finally, my Bella was getting the care she deserved.

Several days after she’d been at CHOP, I remember looking at her small body attached to more tubes and wires than I could count. Her cheeks were swollen from the steroids, her body frail from exhaustion, and her eyes glazed and out of focus. But the whole time, Bella had hardly cried. I tucked her pink blankets in around her and she turned to look at me. “I love you, sweetheart.” The sound of my voice made her eyes light up. She looked up at my face, and she smiled for the first time since she’d been admitted to the hospital.

After Bella arrived at CHOP, Rick and I started overlapping our days so we could have time together. It was a healing time as we spent hours talking, praying, watching movies, and holding each other. It felt so good to be together and reconnect after such a stressful time. We loved our time with each other and were very involved with Bella’s care. When Rick was there, I would take breaks and walk through the hospital.

Exercise has always been my stress relief. Some people think that being a mom is enough to give you gray hairs, but as a nurse, worries were always added as I repeatedly diagnosed
my children in my head with serious illnesses they did not have. If they had a headache, I worried they had a brain tumor. If they had a cough, I worried it was tuberculosis. My fears created a toxic mix of concern. I needed an outlet, and so I walked. Up and down the hallways where hope lived, I walked and soon realized that the pro-life fight is also being fought at the bedsides of these very special kids. The fight doesn’t end at birth, but continues on with infants born with birth defects, whose lives are too often judged as not worth living.

The weeks came and went. Christmas was fast approaching. As I traveled the streets of Philadelphia, I watched the bright lights, wreaths, and cheery decorations take their places in shop windows and on streetlamps. Christmas music played softly everywhere I went, but it felt like a soundtrack to another life, one lived outside of hospital walls. In mid-December, Rick arrived in Philadelphia and, once again, we switched places. I returned home after a long few days at the hospital.

After a three-hour drive, I pulled into the driveway, exhausted. Then, looking at the house, I was astonished. The front of the house was all lit up. The bushes twinkled, wreaths hung on the doors, and candles glowed in the windows. Getting out of the car, I took it all in, smelling the homey scent of pine and burning firewood. The front door opened and the kids came running out. “Surprise, Mommy!” Standing in the front yard, they hugged me as we enjoyed the scene. Taking my hand, they led me inside. “Close your eyes, Mom. . . . Okay, now you can open them!”