A Family That Pulls Together

 It was the 4th of July and we dared to be in a parade with David.

 

 

Actually we did it for the girls.

 

          The thought of being the center of so much attention made them giddy. So I spruced up the rusty old wagon we picked up at a yard sale and coordinated our patriotic outfits.

          The hardest part was waiting around for things to get started. David doesn't do waiting--it's strictly against the autistic code. Instead he headed for the church building nearby and tried to open the locked doors. I think he was hoping to find an elevator inside. The girls didn't do so well either, they kept knocking each other with their flags.
          Finally things started to move and we caught up with Rob and Dave half-way down the block. I managed to coax David into the wagon without too much of a fight and he ended up being the only one who rode in it. Skye, my strong-willed 2-year-old, insisted on helping her dad pull it along.
          We got a lot of cheers, I guess spectators couldn't resist the sight of a 2-year-old wearing bright red Elmo Croc's pulling her 8-year-old brother along, or maybe they realized he was disabled. Either way we won the crowd. Emma walked alongside Rob waving a flag and I followed in the rear, ready to catch Dave if he decided to jump out.
          At the end of the day as I sat in David's room waiting for him to fall asleep, I reflected back on the day's activities. The image of Skye pulling the wagon in the parade lingered in my head and with it came the realization of its symbolism: 2-year-old Skye helping to pull her 8-year-old disabled brother along depicts how our whole family shares the load of caring for David. The bulk of this burden may fall on Rob and I, but Emma and Skye feel its weight too. 
          They share in our feelings of grief and heartache and are impacted by the endless adjustments and sacrifices that need to be made. I worry the girls don't get enough of my time and attention and feel guilty when they miss out on activities because of Dave. But I feel just as guilty when we're off doing something fun together without David. When he's not with us, our family feels incomplete and I miss him. It's a juggling act, with no sense of balance.
           Five-year-old Emma has taken on the role of being a big sister to Dave. She's quick to chase after him when he runs away, helps carry his backpack to school and asks if she can help feed him. Even Skye has stepped into a care taker role. She loves to bring Dave his shoes in the morning and hurries to find a diaper when I change him.
          I worry about what "issues" Emma and Skye will have as a result of having a disabled brother, but at the same time I know our family situation provides an opportunity for them to develop special gifts. Like empathy, compassion, acceptance, tolerance, and above all love!     
         When Emma came home from kindergarten and asked, "Guess who my boyfriend is?" I cringed. I wasn't ready for her to take this developmental step. But then she quickly responded, "David, I'm going to marry him."
          Her sweet innocence warmed my heart. I wanted to hug her so hard for loving and accepting her brother.
          I've tried to explain David's differences to Emma. She has a tender heart and gets teary-eyed when I talk about how sick he was as a baby. Until recently she still believed David was going to grow up and be "normal."
          "Let's buy him a really big prize when he learns to talk," she declared. It was with a heavy heart that I decided it was time to explain he's never going to learn to talk. Through her tears she questioned me and desperately tried to come up with reasons why I was wrong. She wasn't about to give up on this dream without a fight.
          On another occasion she came running to find me. Jumping up and down she announced with glee, "David's playing with me, he likes me now! He likes me now!"
         Does this mean she thought he didn't like her before?
          That would be so sad. I fumbled around my brain to find a way to explain David's social avoidance to Emma. I wanted to make up for all the time she'd thought he didn't like her.
          I added this concern to my growing list of worries.
          Its a long list.
          But even with all of my angst, I continue to cling to the belief that this experience is making my family better, stronger and more loving.
         David may be the first-born, but he has two "older" sisters looking out for him, helping to pull our family along.

A Question

"A Question

A voice said, Look me in the stars

And tell me truly, men of earth,

If all the soul-and-body scars

Were not too much to pay for birth?"

(Robert Frost, 1874-1963)



The Valley of the Shadow of Death (Part 1)

August 17, 2004

LDS Hospital

Approximately 3 hours after checking in

 

The lights in my room had been dimmed creating a soft, warm glow. I lay there soaking up the wonder of all that lay ahead. The familiar rhythm of Rob’s snoring kept me company. It was 2 a.m. and I occupied a unit on the Labor and Delivery Ward in LDS Hospital. The room was larger than I’d expected and felt comfortable. It had hardwood floors, a couch, TV, rocking chair, fold-out bed and private bathroom.                                     
             With Rob asleep, I fixed my eyes on the monitor positioned at my right. Its bright screen was alive with information. It depicted two moving graphs, one measured my baby’s heartbeat, the other my contractions. I was captivated by this data. Each time my abdomen tightened, I waited with an eager sense of anticipation for a small peak to crawl its way onto the lower half of the screen.               
              We’d already been there three hours and according to the nurse’s prediction, we had several more to go. I was grateful to have Rob at my side. Earlier he’d read to me from The Ladies No. 1 Detective Agency. Although I enjoyed listening to him read, I suggested he get some sleep as I’d need his support in the morning. I also tried to rest, as much as possible, amidst the energy of my swirling emotions—I was about to have my first baby!

My arms ached with excited anticipation—at last, I was going to hold him! I couldn’t wait to see his face. Who would he look like? Would he have blue eyes and blonde hair like me or brown hair and eyes like Rob? How big was he going to be? How much would he weigh?

Amidst the thrill of knowing I would soon get to embrace the baby I planned to call David Robert, I worried about the hardships of childbirth. Just how difficult was it going to be? When should I request an epidural? Would there be any complications? What if there were?

I reminded myself of the many prayers I’d said and the calm assurance I’d received from the Spirit. I decided to have faith. Things were progressing smoothly and there wasn’t any reason for concern. The contractions didn’t even feel painful yet. I needed to relax and wait and enjoy the relief of knowing the pregnancy would soon be over. 

As my contractions gradually got stronger, I noticed the peaks on the monitor’s screen get bigger. Somewhere in the midst of watching those peaks rise and fall, my nurse entered the room. “I’m not sure if I should be concerned. Your baby’s heart rate dropped with the past two contractions, but then quickly returned,” she informed me. 
“Is that a problem?” I asked.

"Let’s try moving you onto your left side and giving you oxygen. Sometimes that helps.”

            The nurse helped me roll over. Then she placed an oxygen mask over my mouth and nose. “Let’s see if this makes a difference,” she said. After typing some information into the computer, she left.

I was left alone with my thoughts again. How should I interpret this information? Should I be concerned? What did a drop in heart rate mean? How was oxygen going to help?

Maybe I should’ve asked these questions when the nurse was still in the room, but she handled the situation in such a calm, efficient manner. Because she didn’t appear to be concerned, I decided not to worry.

Now that I was lying on my left side I could no longer see the monitor’s screen, so I closed my eyes. “Relax and wait,” I told myself. 

Suddenly an acute bolt of pain wrapped itself around my abdomen and reverberated through my pelvis. A large, warm gush of fluid rushed out of me. What was that? Something didn’t feel right.

I reached my hand down and brought it back up. It was covered with a vivid, deep red—blood—an alarmingly large amount!

I fumbled around the bed linen, my heart pounding as I searched for the buzzer. As soon as I grasped its cold, hard contours I pushed my thumb firmly against the red button.    “Can you call my nurse, I’m bleeding!” I exclaimed.

“It’s normal to bleed a little during labor,” replied the voice at the other end.

I was surprised. How could they be so casual? I’d begun to hemorrhage and needed help. “It’s not a little, it’s a lot!” I urgently asserted.

“OK, we’ll send someone over.”

It didn’t take long for the nurse to arrive. After one quick glance at the soiled sheet beneath me, she left in search of a resident doctor.

           “Rob you need to wake up,” I called out to the darkened corner of the room, “I’m going to have an emergency C-section.” Instinctively I knew this, even before the doctor’s verdict.
            The resident arrived within minutes. After a brief introduction he asked, “Do you know if you have a low-lying placenta?”

“I did. After the third ultrasound I was told it had resolved.”

“I’m going to need to check your ultrasound records.”

Why waste time looking at records? I was bleeding heavily—something needed to be done! I wanted my doctor, not this young resident who was unfamiliar with my case.

Right then a high pitched beep pierced the air. It sounded the alarm—my baby’s heart rate had plummeted.

            Within an instant the resident’s demeanor changed as he took charge of the emergency. Glancing in my direction he announced, “We’re going to get this baby out of you!” Then he turned to the nurse, “Get Dr. S. on the phone and notify him.” This command was followed by a rapid string of medical orders.

With a hurried pace he stripped the band attached to the monitor from my belly and removed the oxygen mask. Then he rushed my bed out of the room and down the hallway. As I left, I heard Rob speaking to his parents on the phone, informing them of the situation.

            It was a short distance to the operating room. I was surprised to see people already there when I arrived. A slender operating table occupied the center of the room. My bed was pushed up against it. The nurse grabbed my ankles and lifted my legs, while the doctor took hold of my shoulders. In one swift movement they lifted my body from the bed and onto the operating table.

Directly above me, my eyes met with the glare of a bright light. Its intensity made the edges of the room look dark. To the left of the operating table a counter boasted an impressive display of shiny instruments carefully laid out on a blue cloth. Several figures in blue scrubs moved quickly about. I searched for Dr. S., but none of my attendants wore his familiar face.

I felt another warm wave of blood gush out of me. And another. My heart raced so fast I struggled to breathe. Quick, short, choppy breaths were all I could manage. My arms and legs shook uncontrollably. A sick, nauseous feeling churned inside my stomach. I felt dizzy. “You need to relax and breathe deeply,” the nurse ordered. 

“Is, is my baby going to be OK?” I stammered. My voice sounded feeble amidst the urgent activity around me.

A new pair of eyes greeted mine as a figure in blue leaned over me. It was the anesthetist. White hair protruded from the sides of his surgical cap and his face bore the lines of a seasoned practitioner. “We’re prepping you for general anesthesia,” he explained. With quick, well-trained movements he injected something into the IV in my hand. Next an oxygen mask glided over my face—it covered my mouth and nose.
With the mask came a smothering sensation. I couldn’t breathe. I needed to suck air in through my nose or mouth, but I couldn’t. A stifling pressure built up in my lungs. I was going to explode. I needed air! I ripped the mask away from my face. Immediately it was replaced and held down by a firm hand.

            A peculiar, sick sensation crept over my body. I was slipping away. I wanted to fight to stay present. But against my best determination, I soon found myself enveloped in quiet darkness. No longer aware of the medical proceedings. No longer afraid and panic-stricken. All around me was now calm and still. 

The Valley of the Shadow of Death (Part 2)

          Sometime later I opened my eyes. My throat burned, it was raw and tender. A wall of impenetrable pain invaded my abdomen. I hurt too badly to move, or cough, or swallow. A heavy grogginess filled my head. I tried to make sense of my surroundings. I was in a different room with a grey curtain drawn around my bed.
           “You’re in Intensive Care,” a voice gently informed me. I turned my head to the left and looked upward. My eyes connected with Rob’s. It felt good to have him back at my side. His parents stood next to him, their faces etched with grave concern.

Where was the baby? How was he doing?

Reading my thoughts Rob explained, “The baby’s also in Intensive Care.” He hesitated then continued, “There are some problems.” This news pierced my core with a bolt of stabbing pain.

Speech was incredibly difficult, but I managed to ask, “Can you go give him a blessing?”

“What about you, don’t you want a blessing?” Rob responded.

“No, the baby first.”  

Rob and his dad left the room. A small measure of relief flushed over me. God’s healing power was about to be invoked.

I closed my eyes. The effects of general anesthesia lingered in my head, clouding it with a heavy fog. I struggled to think clearly and I desperately wanted to sleep. What problems did the baby have? Why was he in ICU?

In the days that followed I pieced together what had happened as I earnestly searched for answers. During labor the placenta unexpectedly tore away from the uterus, resulting in sudden, heavy bleeding. When this happened the baby was cut off from his oxygen supply. Deprived of oxygen, the systems of his body had started to shut down.

Further complications arose when my airway closed up during attempts to anesthetize me. For no known medical reason my throat sealed up in a laryngeal spasm and I stopped breathing. Efforts to stabilize my breathing delayed delivery of the baby.

Dr. S. reported it had taken him only seven minutes to reach the hospital. When he arrived, the surgeon was standing by, scalpel in hand, waiting to cut. Donning two gowns and two pairs of gloves, Dr. S. chose not to spend time scrubbing. According to his report, I was foaming at the mouth and convulsing violently. With my oxygen level dropping, he decided to cut, even though I hadn’t yet been anesthetized. He gave the orders for a large dose of morphine and made the incision, unsure if I would feel the pain.

David was delivered with an Apgar score of zero. He was deathly pale, with no heartbeat. He wasn’t breathing.

My baby passed directly from Dr. S’s hands to the doctor from the Newborn Intensive Care Unit (NICU). With intense medical intervention he was revived and placed on life support.

After delivering the baby, Dr. S. stood by and waited for my breathing to be stabilized before stitching me back up. My oxygen level continued to drop as the medical team struggled to intubate me. At one point Dr. S. was sure I’d passed away. In 25 years of medical practice he’d never lost a mother. He feared I might be the first. 

Day five of David’s life brought a grim prognosis. “His condition appears to be coma-like and I’m concerned about the decisions you might have to make regarding his future,” the neonatologist informed us.

An MRI revealed he’d suffered a stroke. Blood flow to the right middle cerebral artery had been cut off by a blood clot. A large portion of the right cortex of his brain had been injured. Seizure activity had also been detected.

His kidneys weren’t functioning and if they didn’t improve, he’d need a transplant. His liver was also compromised and transfusions were required to maintain the platelet levels in his blood. He wasn’t even able to breathe on his own. This was accomplished with the aid of a machine.

How could such a small body recover from so many problems?

There were too many miracles to ask for. Too many at one time.