Providence

My water broke!

I’d been in the hospital for a week. I was having labor pains, but I was only 24 weeks pregnant. 

I had an elite team of San Franscico’s best physicians for “high risk” pregnancies. (Well, I was over 35 years old after all.) 

They administered a God-awful cocktail of drugs to stop me from going into labor. It was brutal. For seven days I was dazed and burning from the inside out. Yet I held fast to the notion that every day my sweet baby stayed inside me would give him a better chance of surviving.  The outlook was grim for “micro-preemies” born before 28 weeks.

The concoction worked. Labor was staved off. 

That is, until I had contractions that could no longer be stopped. 

I had been in labor for 24 hours when my water broke.

Despite taking the drugs to prevent it, my son was on his way. There was no going back.

The next hour was a blur. Not without pain naturally, but it all happened so fast. I barely had time to concentrate on controlled breathing. When labor pains hit, they were muddled with the fear. I’m not sure which was worse. 

Fearful or not, I was going to surgery.  

The operating room was small. Sterile, of course, with monitors against the wall and just enough room for the ever-growing team of specialists for this “high risk” mother and her premature baby.

The first attempt at administering an epidural resulted in the nurse whispering “oh no” to the anesthesiologist. Well, that did not foster confidence in my elite team of specialists. 

Evidently, the second was successful and I was happy to be out of pain.

They prepped me with a “surgical screen” so I could not watch the slicing of my abdomen.  My baby’s father, Glen, who stood beside me, had a bird’s eye view. He was mesmerized. 

All I could see were bright lights above and the heads of foggy figures, at least two on either side of me. It was like looking through a blurry camera lens. I stopped trying to see what was happening and lay my head down with a sigh. There were lots of muffled voices, the mood was serious.

I could feel pressure and tugs but no pain. It took far longer than I would have expected.  There were no words of comfort from anyone, so I waited in fear.

After what seemed like an eternity, a nurse asked if I would like to see my baby boy.  

I was surprised. There were no cries. Is that normal under these circumstances? 

But as she brought him to me and held up his tiny face, the world seemed perfect. He was so small, like a little doll, but what I will forever remember was his beautiful mouth. His lips formed a perfect little rose bud. 

The nurse lifted him higher to show his dad; then quickly took him to a station by the door and intubated him. I had no idea what was going on.

My baby was then whisked away. I was told he was taken to “NICU.” (Neonatal Intensive Care Unit).

I was taken to “recovery.” Beaming with excitement were my mom, my former sister-in-law, and Glen. However, none were able to disguise their concern. 

It was then that we chose the name Blake. We thought we would have more time to decide.  

A bit later, visitors were asked to leave, and I was wheeled to a private room. 

“Wait, can I see my son?” I asked.  “No.” They could not take me to see him. What were they doing to him? How far from me was he? Why can’t I see him? “Sorry, you will have to wait until morning.” No explanations.  

So, at the break of dawn, once the nurses ensured that my stitches were intact, I insisted on seeing Blake. Those nurses gave disapproving looks to one another. “You need to be careful; you just had surgery. Let’s wait until your doctor arrives.” Hell no. I did not want to wait a minute longer. “Where is he? I want to see him.”  

The NICU was a fair distance from my room. “Alright, but we will take you in a wheelchair once Glen arrives,” said an exasperated nurse. 

“No. I’m fine. I do not want to wait. Point me in the right direction. I will find it and I can walk.” I got out of bed and started toward the door. I saw a couple of incredulous glances. 

I can be stubborn. Obstinate even.

Earlier, I had gotten up to use the bathroom with no problem. I knew I could  make it. 

Slowly but surely, I found my way.  

The extraordinary NICU nurses were waiting for me. Graciously, I was led to Blake’s incubator. Oh my God, he was so small and fragile. He weighed only two pounds four ounces. He was hooked up to so many machines with innumerable tubes. He was fighting for his life. 

I was devastated. I couldn’t touch him. I couldn’t hold him. I felt helpless. Instinctively, a mother wants to protect and nurture her child. When he needed me most, I was kept from him. What a cruel twist of fate. All I was allowed to do was be present. I spoke to him and prayed to every possible deity I could think of. 

When Glen arrived, he had the same look of disbelief as the nurses. “How are you standing?” I didn’t know, it must have been some maternal drive. I do not recall feeling pain or the inability to move. I was focused on Blake. 

We spent the entire day by that incubator.  

I really should have allowed those nurses to wheel me to NICU. No one could believe that the day after a Caesarian Section I was up and about and walking the halls of the hospital.

I quickly became a legend. So great, in fact, that my insurance company would not authorize another day. I was booted out of the hospital. Evidently, I met the criteria for discharge – ambulatory, eating, and no meds. 

Early the next morning the hospital held a meeting. In attendance were the NICU neonatologist, the hospital case manager, a NICU nurse, a social worker, a hospital chaplain, and we, the parents.  

I suppose I had not faced the severity of the situation until the chaplain introduced himself.

We were told rather bluntly (or maybe I took it that way) that our baby boy would have 72 hours to live. (It had already been more than 36.). And if, miraculously, he did survive, he would undoubtedly have Cerebral Palsy due to Blake’s multiple risk factors. 

Oh, and by the way, the survival rate for “micro preemie” baby boys was less than the rate for girls.

The social worker provided us with literature and a list of phone numbers. 

I believe I was in shock. And in denial. I left that meeting feeling numb.

Did I attend a meeting meant for some other parents? They rattled off a litany of forseeable complications. But OUR little guy is going to be fine, right?

He did survive those 72 hours. Miraculously.

Each day after that was a milestone. An achievement. A gift. 

With every improvement, however, there would be a heartbreaking setback. 

He had a Grade 4 brain bleed. He had bronchopulmonary dysplasia. He needed heart ductus surgery. He needed two hernia surgeries. He needed spinal taps to check brain blood and fluid. He was having seizures. 

With only 25 weeks in utero, his lungs had not completely formed. He could not breathe on his own. If he’d had only one more week in gestation, his lungs would function without assistance.

That assistance was a ventilator and doses of synthetic surfactant to allow his lungs to expand and contract. The first two doses of surfactant did not take. His lungs were in distress. The third, and maximum allowed, took. He wouldn’t die from collapsed lungs. 

It had been a week, and I still couldn’t hold him. It was far too risky. He was fragile. The slightest impact could disrupt his stability.

I was careful not to bump the incubator. I spoke softly. I fought to stay positive. What I longed for was to kiss his sweet cheek. But I couldn’t. 

So, I watched him. With the tubes. And wires. And sensors, and leads, and those goggles. He couldn’t even see me there. His mom. By his side. It was a lonely place. Austere, even. The lights were low. The sounds were ominous: beeping, buzzing, humming, ringing, pulsating, whooshing air, too frequent alarms, and the hurried footsteps of nurses. Diabolical colors would dance in the corners of my eyes. Those monitors always reminding me of potential peril. It was difficult to be optimistic.

Blake’s seizures were problematic. Especially with the brain bleed. So, the doctors administered phenobarbital to relax him. Yep. My tiny guy was on barbiturates. However, to prevent breathing pauses, he was given caffeine intravenously. Yeah. Uppers and downers.

Blake tolerated the IV feedings. If he improved, he would transition to mother’s milk so I was instructed to start expressing and refrigerate what I could. Which was not very much. 

Glen had a new project out of town. He was gone during the week, but he was vigilant on weekends. I, however, was at the hospital every day. I came early and left late. I knew all the nurses and doctors. I knew which babies belonged to which parents. And even which babies had no visitors. I was shocked. How could anyone abandon their child? 

Yet … one morning.

One morning I could not get out of bed. One morning, I did not go to the hospital. That morning, I was so riddled with guilt that I curled up into a ball and sobbed. I couldn’t stop. 

What had I done?

I considered the past six months. I reflected upon all that I did or did not do. I reviewed each meal. All supplements. All places I went. All activities. Even what I wore … too tight? The wrong shoes? 

From the moment I discovered I was pregnant, I became fanatical. No coffee, alcohol, junk food. I refused any type of pain medication (even Tylenol) regardless of the pain I was in. I ate as though I was training for the Olympics. Only healthy and organic. 

I slept well. I went for long walks daily. Aside from the dreaded morning sickness, I felt good. I was determined to give my newborn a head start; every advantage; every edge. 

So, what did I do wrong?  What did I do to my baby?!

I was consumed with remorse. But I didn’t know for what. I wracked my brain. I must have done something that caused this. There he lay struggling to breathe. On the brink of death. What if one setback eclipsed his progress and … ?  I just could not bear to think of it.

Darkness and despair enveloped me like a weighted blanket. 

I couldn’t move. I didn’t want to try. 

I started bargaining. Much like one of the stages of grief:

“Please God, if you let him live … ”

I offered a long list of promises. “Please!”

Then I remembered what the “team” said. “If  he lives, he will likely have Cerebral Palsy.” Would that be worse?  

Would every day be a reminder of how I failed him? What would happen to him when Glen and I die? Who would be there for him?

Hours went by as I obsessed over my responsibility. Rethinking everything. 

Could I ever forgive myself?  

Suddenly, I had an epiphany.

It was as though God reached out to me and whispered in my ear. 

Then I made a promise.

If he survives and does have Cerebral Palsy, it will not affect how much I will love him. I will be the best mommy I can be. I will make sure he is the happiest little CP boy in the world. It will be my mission in life to ensure that he is joyous and knows he is loved. I will be his advocate in all things. He will be my miracle.

That was my mantra. 

I opened my eyes. Through cracks in the curtains, came streams of light drawing me in. Was it the moon or bright city lights? Strangely, I felt consoled and hopeful.

The next morning, I dressed early and was out the door – with a fresh perspective and two bottles of expressed milk. 

A few days later, Blake graduated to a new incubator. One with two circular openings on the sides. After washing my hands for three minutes, (it was timed), I stuck my arm inside the small opening. I could not rub or stroke or pat him. I was told to gently place my hand on his arm or leg and let him feel my warmth. So, I did that and told him how much I loved him. 

It was at this point that friends and family were allowed to visit … only one at a time and after a three-minute hand washing, of course.

Finally, on day 15, I was able to hold him. While he was still tethered to monitors and oxygen, we “kangarooed” (skin on skin). Visceral changes occur to both the baby and mother with kangarooing. Health benefits are measurable. And, finally, my sweet baby could once again hear my heart beat. It was during these moments that I felt hopeful, encouraged, and comforted. 

Aside from that one day I stayed home, I was there for all of it. There were days of fear. Days of hope. Days of sheer joy. 

It took 96 days before Blake was able to come home. He was accompanied by a massive oxygen tank, apnea monitor, and a myriad drugs. 

But he made it home!

He was a fighter. He pushed through every obstacle. 

He does not have CP, despite the odds.  

He not only survived, he flourished. 

Naturally, he had developmental delays. Coordination and social skills lagged. He was fairly isolated until two years old. Because of his fragile lungs, his doctor discouraged exposure. 

Challenges were met head-on. I was his ardent advocate, navigating services, resources and assistance. He is one of the lucky ones. As am I. He caught up quickly and soon excelled.

Perhaps it was because I was an older mom. But as soon as I saw the little bean that was my baby on the sonogram image, I was enthralled. Nothing has ever felt like a sacrifice or burden. Blake needed loving support and I was in a place where I could provide it wholeheartedly. Everything about being his mom was magical. I loved washing his tiny clothes. I cherished breast feeding. We even bonded through diaper changes – singing and making it fun.     

He always knew he was adored. Even now he tells me that he is convinced the heavens conspired for us to be mother and son.

My sweet baby now works as an accountant at Stanford University. He is a miracle.