The Hard Fought Miracle

There I was, alone in the hospital, being monitored at 33 weeks pregnant with my unborn son. Nevermind that my family was states away and Shane, my husband, was hours away just finishing his overnight shift.

My phone rang as the doctor entered my room. Shane stayed on the phone listening as the doctor explained our current situation. At the highest dosage my high blood pressure still wasn’t regulated and my migraine seemed to be going nowhere either. It was time to induce.

Still alone in my hospital room, Shane and I began making calls to family, but all I wanted was my mom and husband.

Terrified at what was happening, all I could do was pray, hope and wait.

‘Fever check’, my nurse said as she entered. It had been three days since being induced and not progressing as originally thought. She was a blunt woman, a characteristic I remember to this day as she explained that if I had a fever and waited much longer my options would be limited.

The option of being awake and alert when my baby entered this world, would be out of the question at that point. We had agreed to a c-section.

Shane sat near me as the staff bustled around preparing for the big show. My mind began to race. I wonder how small he will be? Would I be able to hold him right away? Most importantly, how healthy will he be?

More flooded my mind, and with each, fear began to fill me.

Time ticked on, ever so slowly. “Should this be taking this long? Is something wrong? My mind raced on as I waited to see my boy. Then everything happened at once. He was out..but as quickly as he came they rushed him out and into the next room.

I called out to my husband, “Go! Go Shane! Go with our son and don’t leave him!”

Time slowed, I was wheeled into the recovery room, my mother greeted me and together we waited. My resolve was crumbling, wondering when Shane would come with our child so that I could see him.

The door opened and my heart dropped as my nurse entered the room instead of the two people I wanted so desperately to see. She began explaining the circumstances of my procedure. During the three day wait post induction, I had developed an infection.

My heart sunk. Was this my fault? Did I cause this?

Was my desire of a “normal birthing experience” the root of my initial refusal of having a c-section?

Becoming pregnant in itself was a dream that had been fulfilled when I had been told for years that I would never give birth to a child.

Finally…breaking me free from my thoughts, Shane and the medical team entered with my baby boy, Graham.

Unfortunately, due to his small size and the bulkiness of the giraffe incubator, I barely caught a glimpse before he was taken away again. I was told I could visit him later that evening but due to the medication I was on, it was not possible.

The guilt crept up again. I couldn’t hold him, I couldn’t rock him, I could only see him through the pictures my husband took. What I thought to be the ending of a hard pregnancy and delivery was only the beginning to what later became a time like very few endure..

The NICU.

Neonatal Intensive Care Unit, Newborn Intensive Care Unit, NICU or as I remember it, a blur.

They said I could see him tonight. Why can’t I see him? I couldn’t visit Graham tonight, his first night on Earth? This isn’t fair, none of this is how I dreamed this would be.

Shane and I held tight to each other as we let the exhaustion take over and I drifted off to sleep.

The next day was filled with challenges the medication, wound vac, catheter and staples were keeping me firmly planted in my hospital bed. Even my family who came to see us from Texas would meet my son before me.

After the excruciating long wait, and the doctor’s approval, the time to meet Graham had finally arrived.

As I entered through the security doors, I saw dozens of tiny babies and machines everywhere. They were all so tiny. Was Graham really THAT small or do I remember him so vaguely already?

At last, my eyes caught glimpse of my beautiful 5 lb. 1 oz., 17.5in baby boy. Never mind all the wires, tubes and jaundice, he was the most beautiful human I have ever laid my eyes on.

Rolling up to the enclosed incubator, I slowly reached my hand inside and introduced myself for the first time to my son. “Hey little one, I’m your mommy.”

Graham gently reached out his hand and set it on top of my own. For the first time in days, my eyes welled with happy tears. May I hold him? Nodding in understanding the nurse opened the giraffe and gently set my son in my arms for the first time.

This was our moment, my moment. I carefully studied every feature of Graham, trying to memorize everything about him. I wanted this moment to never end.

The next 7 days involved a new room, limited visits to Graham but thankfully a webcam monitor. A camera had been placed inside the giraffe incubator that held my baby boy. Remaining inpatient myself during these days, I could only visit the NICU twice daily and monitored him via the webcam the rest of the time.

The doctors were concerned primarily with his oxygen levels as well as the severity of my infection and jaundice. He was going to need tubal feedings through his mouth. My visits to the NICU were short and long between. Waiting in anticipation, I watched the camera in my room willing time to speed up so I could reach in to touch him so he would know his Mama was there.

Discharged.

That should be a joyful word. The ability to leave a place or situation. What the Oxford Dictionary doesn’t include is the heartache you feel as you are discharged post delivery but you are not carrying the small infant that was safe in your womb when you arrived a week prior.

Instead, we moved into a NICU room with Graham. 

Shane, able to take his FMLA leave, ran errands, checked on our house and our pup and rotated sleeping on a tiny cot in a designated family room so that I wouldn’t have to continue sleeping in recliners and could have the cot in our designated NICU room.

You see, the world keeps moving even though time felt slow and never passing in the NICU.

But the responsibilities continued on, in our outside world.

We had to learn to care for ourselves and a preemie all while in unfamiliar territory. Meals consisted of lunch, take out or cafeteria food and supper came from the little locker space that stored minimal PB&J supplies, poptarts and chips. 

Beep…click….beep…..shift change…beep click beep… The never ending sound of machines constantly going. Graham was finally in an open incubator but with all the wires and tubes still made holding him a complex dance of perfection. It didn’t matter, none of that mattered, I was finally with my son!

“A Speech Pathologist will come to meet you all today.”

“Graham continues to struggle with swallowing but we feel that it is time to switch from the mouth tube to a mixture of nose tube then add a bottle every couple days.”

The doctor continued to explain but all I could think in my mind was how does a child not know how to swallow? Even born prematurely, that never crossed my mind.

Eight bottles a day, my brain snapped into the present. When Graham can drink eight bottles a day he can go home. Determination filled my heart and mind as I gazed at the doctors before me. At least now we have a goal to work towards.

Life became an endless cycle of doctors, nurses, lactation consultant and speech pathologist. The machines beeped on, blood tests, power pumping, two failed hearing tests, recording of diapers….never ending data collection.

At this point during our stay I had no recollection of how long we had been here or when we would return home. Weeks 2, 3 and 4 all blurred together. Shane and I were alone. Often I would sit in our room holding my son and let the tears continue to fall.

This was not how my experience was supposed to be.

This entire journey had been difficult,

When would we catch a break?

Even visitors were limited due to it being in a part of the hospital with very sick preemies.

Then after weeks of anticipation they said it…

“You can go home today.”

As soon as the words left the doctors lips I felt as though we had won the lottery. We could go home?! Just one final test, the one hour car seat test. The five weeks we had just spent in this hospital came down to this one final hour. 60 mins…45 mins…30 mins…breathe he will make it…20 mins….I can’t do another day….15 mins…what if after what if, the minutes ticked on.

Anxiety, relief, jubilation and anticipation coursed through me like the 4th of July. 5 mins…4…3…2…1, WOOOOOOO!! He did it! 

We were going home but that didn’t mean the road ahead would be an easy one.

Life moves forward and continues on.

One may assume that after our experiences of a traumatic delivery and NICU, that life would be smooth sailing.

But…it wasn’t

Our son didn’t speak…12 months, 15 months, 18 months went by.

He didn’t point or wave.

He continuously flapped his arms.

The delays were obvious.

Shortly after Graham turned two, he was diagnosed with severe autism.

Now our days are filled with Developmental Preschool where he receives Speech, Occupational Therapy and even Physical Therapy for a time…all in addition to the 20 hours of ABA therapy that we do in home.

We trudge on, advocating and working towards the best for Graham. We do this because severe autism or not, non verbal or verbal, I wouldn’t trade my son for anything in the world!

The journey has been long…but so worth it.

What matters is that we are together, Guiding Graham’s Way.

He’s our miracle.

Written by, Courtney Mills

My name is Courtney Mills. I’m am thirty-two years old. My husband and I have the privilege of raising one of the sweetest boys on the planet. His name is Graham. In 2019 Graham was diagnosed with severe autism. In that moment, we realized just how lost we were. No information, little help, and a whole lot of anxiety about the future. I began learning, going to seminars, asking questions, and attending conferences. Advocating by relaying our story and experiences to others. We are lost in the woods, but every day we make progress finding ourselves and the path. Guiding Graham’s Way is a journey and adventure, driven by the desire to help others. I have decided to share my story, knowledge, and to support others in theirs. You can follow us on Facebook at Guiding Graham’s Way.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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