While I Breathe

By Susan Reynolds

There are some circumstances that no baby manual or parenting guide could ever prepare you for.  WHILE I BREATHE is the gripping true story of how a first-time mother and her baby fought together for survival.

 

When Susan became pregnant in the winter of 1994, she had a loving husband, a stable home, a life of faith,

• Language: English
• Publisher: Monarch Books
• Release date: Jan 1, 2024
• ISBN: 9798989781423

Susan Reynolds

An Adams Media author.

Book preview

CHAPTER ONE

It was a day no mother should ever experience. My two-year-old son lay close to death as I waited to give birth to his baby brother via C-section.

Don’t worry, Ryan’s nurse said. We’ve got him.

But there had never been a single minute in the past two years that I hadn’t worried.

God bless my little boy. He had tried his hardest, but after two years of bedside vigils and prayers, he had little fight left. I wanted to hold him forever but was hardly allowed to hold him at all. And there was nothing I could do to make him better.

The sorrow I felt as I gazed down at Ryan’s swollen face was unbearable. My firstborn son was suffering from lung and heart disease, his tiny lungs so scarred and damaged that they resembled white clouds in X-rays. His precious heart had worked so hard to compensate that it had led to irreparable damage. By this point, he was fully dependent on life support, unable to eat or breathe on his own. The drugs the doctors had given him to manage his pain and anxiety had made him physically addicted. Imagine, a two-year-old addicted to Ativan and Fentanyl.

I closed my eyes and prayed. "God, I don’t know your plan, but please, please watch over Ryan and ease his suffering. I leaned over and kissed his forehead. I love you, little lamb," I whispered.

His eyes were slits of exhaustion and sadness. He looked at me as if to ask, Is this goodbye?

How am I supposed to do this? Tears streamed down my face.

The nurse wrapped her arms around me. "He knows you love him. He feels it. Go bring his baby brother into the world and celebrate this new life. I promise you that we will be right here with Ryan."

I put my hand on Ryan’s chest and felt it rise and fall in sync with the ventilator. My God, how this little boy inspired me! His will to live against all odds over these past two years had been astonishing. Like a boxer in a ring getting knocked down over and over again, he kept standing back up in defiance. His strength gave me strength and had always given me hope. Gratitude for the privilege of being his mom now outweighed my fading hope.

RyRy, I have to leave now, but I’ll be back tomorrow. I felt physical pain in my heart, like it was splintering to pieces.

Walking away from Ryan that morning felt like a betrayal. I had been by his side for over two years. Loving him. Praying for him. Advocating for him. Reading to him. Cheering him on when he was well enough to do physical therapy. Massaging his broken little body in his hospital bed whenever he was back on life support.

He was my purpose. Every morning, I woke up, put my armor on, and went to battle to protect and save this beautiful child. Now what was I to do? I felt guilty for the excitement I felt in knowing I would soon meet my new son, and a deep, aching sadness for the suffering Ryan was continuing to endure. I was helpless to heal him, and that knowledge was shredding me.

John, my husband, led me out of Ryan’s room and out of the intensive care unit. After a brief walk down a few hallways, we reached the maternity ward. This would be my second C-section. I was afraid, but not nearly as afraid as I had been the first time.

At least I’d known this C-section was coming. And knowing more about what to expect makes a big difference. I was desperate for the outcome to be different this time. But would it? It would if prayers worked…but do prayers work? They hadn’t for Ryan.

When Dr. Hanson entered the room, I searched his eyes for affirmation that all would be okay. He didn’t even have to say a word. Looking into his eyes, I knew he wouldn’t let anything happen to my baby.

You ready? he asked.

I nodded and put my body and my baby in his care.

As they positioned me on the table, my mind drifted back two years to the day Ryan was born.

It was a sunny day in late August. I was thirty-two weeks pregnant and looking forward to relaxing for the final two months before my baby came.

Good morning! I smiled as my friend Megan and her two-year-old, Jack, got into my car for a trip to the city, where Jack was going to audition at a modeling agency. Seeing Jack with his bright-blue eyes and chubby, dimpled cheeks filled me with excitement that I’d soon have my own baby.

As I sat thumbing through magazines in the waiting room during the audition, I thought, I’m going to do this with my child, too. Then Megan and I can do this together!

Thinking of that moment still brings me a smile, even though it was to be the last normal moment of my life.

After returning from the city, we lunched on Megan’s deck, chatting away and soaking up the warm afternoon sun, but something felt off.

Hey, Meg. I shielded my eyes and looked at her. I haven’t felt the baby move all morning. Do you think something could be wrong?

It’s probably just because we were busy in New York, she said. And this is the first time you’ve been able to relax.

Yeah, you’re probably right.

I’m sure everything is fine, she said reassuringly. Try not to worry.

I wanted to believe her, but I was worried, so I headed home. When I got there, our yellow lab, Jake, bounded over to me. His tail wagged like an out-of-control windshield wiper as I patted his head.

Hungry, sweet boy? I asked, kneeling. He licked my face, and I laughed. I grabbed a snack for each of us and sat with Jake, his head on my lap.

I grew increasingly aware of the stillness in my belly. Another hour passed. I still wasn’t feeling the baby move. I drank a glass of milk. Nothing. Then a glass of juice. Nothing. Finally, I called the doctor. They told me to come right in.

It was now 7 p.m. I was in the waiting room for thirty excruciating minutes before I was called into an examination room.

Let’s see what’s happening, the nurse said as she positioned me on the chair and wrapped a belt around my abdomen, hooking me up to a monitor to perform a nonstress test.

What does this do? I asked.

It will give us information about the baby’s heart rate and movements, she told me. We’ll monitor it for about twenty to thirty minutes, so just sit back and relax.

Ten minutes went by.

Do you feel anything? she asked.

No, nothing. I was lying perfectly still, desperate to feel even the slightest kick.

Fifteen minutes later, the nurse left the room. I tried to calm myself by taking deep breaths but felt as if I couldn’t get enough air. Worry was overtaking me, both emotionally and physically. My shoulders tensed, and I clenched my fists.

Finally, the doctor entered. It’s good that you called and came in, he told me. I’m concerned about irregularities in your baby’s heart rate. I want you to go to the hospital for an ultrasound.

Now?

Yes, right now. I’ll call to tell them to be ready for you. You should call your husband and let him know. Do you have a cell phone?

I shook my head.

Use the office phone. He pointed to the wall.

I called John and left frantic messages on his office phone and at home. Something is wrong with the baby, and they’re sending me to the hospital. Where are you? Please come when you get this message.

I checked the time. It was 8:30 p.m.

I can’t reach him, I told the doctor. I’ll try again when I get to the hospital. I reached for my purse and pulled out my car keys.

The doctor stopped me. I can’t let you drive, he said. You’ll need a ride.

Why can’t I drive? I asked him.

Your baby may be in distress, so it’s best if you don’t.

Well, what am I supposed to do? I asked.

I’ll drive her, Doctor, the nurse said.

I tightened my arms around my belly. What about my car?

Don’t worry about that, the nurse said. Your husband can figure it out.

Feeling more frightened with each breath, I followed the nurse to her car. As I sat in the passenger seat, my body tensed and my breathing accelerated. She reached across to me. Focus on taking deep, slow breaths.

As we pulled into the hospital parking lot, I remembered how excited I used to feel at the thought of arriving there one day to have my baby. Now, an ominous feeling washed over me as we approached.

I was rushed into the ultrasound room where a resident began the test, moving a wand over my belly. After a few minutes, she asked, Have you been taking drugs during your pregnancy?

I was on an antibiotic at the end of the first trimester for an infection, I said, but nothing else since. Why?

And then it struck me. She had meant actual drugs. At that moment, I knew something had to be very wrong. But how could it? I ate right. I didn’t smoke. I didn’t drink. I’d altered my workout routine to ensure the safety of the baby. I practiced breathing exercises to control my stress. I took my prenatal vitamins daily and followed the What to Expect When You’re Expecting book like a bible. I had done everything I was supposed to do. How in God’s name could my baby be at risk?

What is wrong with my baby?

It looks too small for thirty-two weeks, she said. I’ll go get Dr. Jackson, and he can answer your questions.

Dr. Jackson entered the ultrasound room, took one look at the picture and measurements on the screen, and said, You need an emergency C-section.

Oh my God, no, I whispered.

My whole world began to fall apart. I had thought I was going to be one of the lucky ones—a young mother with a beautiful, healthy baby, an adoring husband, a great house. I had never been so blessed in my life. But that dream was about to change in a way I could never have imagined—and I suppose that was a good thing. Because if someone had told me the decisions, struggles, sadness, and suffering that lay ahead, I couldn’t possibly have hung onto the hope that kept me going.

It was now 10 p.m. Within minutes of the doctor telling me I needed a C-section, various hospital personnel arrived and the bombardment began. Someone helped me replace my clothes with a hospital gown. Another poked and prodded, trying to find a vein for the IV. Yet another placed sticky patches on various parts of my body to monitor my vital signs.

We need your signature on this form, someone said as they slid a clipboard in front of me.

Throughout all of this, I used the hospital phone beside me, dialing in desperation, trying to reach John for probably the tenth time. I tried every family member and every friend. Nobody was answering their damn phones. How could no one be home?

I left messages everywhere. Hi, I’m at the hospital. Something’s wrong with the baby, and I’m having an emergency C-section in a few minutes! I’m alone and can’t reach John…

I’m so sorry, someone said as they took the handset from me. We have to go.

Dr. Jackson, can’t we wait just a bit until someone can be with her? a nurse asked.

No, he told her. "We have to go now."

I was wheeled into the operating room as tears streamed down my face and my body trembled. Delivering the baby early was bad enough. Having to go through it alone was terrifying.

The anesthesiologist gave me an epidural so I would feel nothing from the waist down. The nurse inserted a urinary catheter.

I stared up at the ceiling, feeling as if my body were no longer my own. Tears soaked the sides of my face and left wet circles on the pillow under my head.

Is she alone? I heard one of the surgical nurses ask.

It happened quickly. Within minutes of Dr. Jackson asking for the scalpel, my baby was out.

It’s a boy, someone said.

And then silence.

Why isn’t he crying? I asked. Is he okay?

No one answered.

There was a sudden rush of activity as my baby was carried to a table on the other side of the room, where a team of people in blue scrubs surrounded him. Their hands and bodies moved in unison as they tried to save my baby’s life. Sounds I couldn’t identify and words I didn’t understand filled the room. Cyanotic. IUGR. Suction. Intubate. Ventilator.

How’s he doing? Dr. Jackson asked, and I could hear the urgency in his voice.

Two pounds nine ounces, someone called out.

Why is he so small? I asked. Shouldn’t he be bigger?

Again, there was no answer.

Apgar 4. Intubating now.

The room was spinning. I held onto every thread of emotional strength I could muster. Dr. Jackson sewed me up as the medical team attempted to stabilize my baby. I felt like I was treading water in the middle of the ocean with no rescue boat in sight.

A nurse leaned over me and smiled. Your husband is here.

I stared at her blankly. Having just endured the trauma alone, I could only wonder where he’d been and why I hadn’t been able to reach him. The door opened, and John rushed in wearing hospital scrubs, paper booties over his shoes, and a nervous smile.

He grabbed my hand and kissed my forehead. My body softened under his touch, but my eyes couldn’t hide my confusion and distress.

Within moments, the team rushed our baby out, allowing us only a moment to see him. I saw a flash of optimism in John’s eyes. Maybe he saw a newborn baby, the start of a beautiful life. But what I saw was a very tiny, very sick baby who’d just been cut out of my stomach, with a tube coming out of his mouth and a multitude of wires covering his body.

Where are you taking him? I asked.

They need to get him to the Neonatal Intensive Care Unit to get him stabilized, Dr. Jackson said.

I felt utterly useless. My baby needed me desperately, yet there was nothing at that moment that I would be allowed to do for him.

I turned to John. I couldn’t reach you. I was so scared. Where were you?

I’m so sorry, he said. I got here as fast as I could.

The momentary comfort I felt as he stood beside me was slowly overtaken by sorrow and anger. John, please go follow the baby and make sure he’s okay.

"I want to stay here and make sure you’re okay."

"I need you to find out what’s happening. Please go find him. Please."

One of the staff at the nurses’ station will guide you to him, Dr. Jackson offered. Your wife will be in recovery for a while.

Still, John hesitated.

Go! I ordered. Please!

I had needed him to be with me and hold my hand when my world collapsed. Now that it was over, I needed him to go find our baby to make sure he was still alive.

The doctor motioned with his head for John to go.

Okay, I’ll be right back, John said. He squeezed my hand and left.

It was now eerily quiet as Dr. Jackson finished the last of the stitches.

Is my baby going to be okay?

It’s good you came in when you did, he said. A few more hours, and he would have died. For now, he’s in one of the best neonatal units in the state.

"But is he going to be okay?"

He’s very sick. His lungs are underdeveloped, so he’s not able to breathe on his own. At this point, all we can do is wait.

Why did this happen? I wept. And why is he so small? He should be at least four pounds at thirty-two weeks, shouldn’t he?

It seems he must have stopped growing at some point, and we don’t yet know why. I’ll come to check on you tomorrow, and we can talk more then.

I closed my eyes, feeling helpless, hoping and praying that when the sun rose, my baby would still be alive.

After a short time, John returned. The team is working on getting him stabilized.

He’s still alive. Thank God, I thought.

When I was in recovery, John told me that his brother Brad had been the one to let him know what was happening and that Brad suggested John stop at home first to pack a bag for me.

That’s why I was delayed getting here, he said and showed me the duffel bag.

You went home first? My sadness and frustration turned to fury. I looked away. I often felt like I wasn’t a priority. But this? This was at a whole new level.

I was moved to a hospital room after 1 a.m. As the nurse wheeled my bed out of the recovery room, I begged, "Can I please see my baby before I go to my room? Please?"

I saw her eyes. She was about to say no, but there was no way she could deny me. She wheeled me down several hallways and turned the final corner into the neonatal unit. My brain was still foggy from the effects of the anesthesia, and my body felt numb. I struggled to take in all that was before me. My bed came to a stop next to where my baby was lying.

I stared at him, absorbing what I could through my exhaustion. There was no sign of life in him. Only the machines kept him alive. I saw