spinal tap

[and we return to our story]

That night I would have the first of many conversations with Juniper's neurologist, Dr. Luke - who happened to be the neurologist on call for CHOA that evening. Dr. Luke would turn out to be a savior for my family. She would also have the pleasure of repeatedly telling me the most difficult news of my entire life. This one was par for the course.

We didn't have this conversation in person, but rather over the phone at the nursing station. I stood there amongst the medical professionals as they dictated their patients records.

"Juniper has Generlized Myclonic Epilepsy" Dr. Luke told me, as if she was giving me a diagnosis.

Epilepsy? That doesn't seem so bad, I thought. Isn't that just a bad case of the seizures?

Dr. Luke went on: "We are going to start her on 1.4mls of phenobarbital. We start by giving her a loading dose of 10mls tonight."

10mls? Does she even have that much blood in her tiny veins? And what is phenobarbital?

Yes, she does have that much blood in her veins and phenobarbital is a class C barbiturate, an old school heavy tranquilizer that can cause respiratory failure if given in high doses.

I was silent on the phone.

Dr. Luke knew better than to ask if I was still there. She continued. "We will have to run a series of tests to find out the cause of Juniper's Epilepsy." I quickly learned that Epilepsy is more of a set of symptoms than a diagnosis. "We will need to run some blood and urine tests and a lumbar test." "What's a lumber test?" I asked. "We will need to take spinal fluid," she explained.

"A spinal tap?"

"Yes."

Tears began to stream down my face.

A few moments later, I hung up the phone and returned to the room. It was one of those walks where things get too much to handle so your brain turns off everything but the motor skills to take a few steps forward. 

The nurses loaded Juniper with phenobarbital and she slept quietly in her "nest" in the middle of the large hospital bed, wires still protruding from her head. I stared at the peaks and valleys on the EEG monitor like they were steep mountains for me to climb.

I did my best to catch sleep here and there, but I was terrified of what the future may hold. It's hard to keep your mind at peace in times like this. The closest thing I can compare it to is the feeling I got when my granddaddy got cancer, or when I was told we needed to put down my childhood dog. The future has to come and you can't always control what it brings, but damn it's hard to sit still and let it happen.

The next day Dr. Luke visited us as Juniper slept, high on all the drugs with gauze and wires on top of her head. Juniper looked like a little robot recovering from having circuitry ripped out of its head.

Dr. Luke didn't look like I had envisioned her when we talked on the phone the night before. People never do. She was a small-framed, younger woman with thick, oval-shaped glasses. She spoke with the academic confidence and directness of a fellow fresh out of her residency. She also had an energy about her that made me feel confident that I could trust her. Ultimately, I had to trust her with my little girl's life.

She reiterated what she had told me the night before. I distinctly recall the part about how this could "just be seizures" or something far more serious. I recall hoping for the former, but expecting the latter. I am the type of person that prefers to think of worse case scenario in order to prepare myself. If it's better than the worse possible scenario then I can be pleasantly surprised. At the time I didn't realize how accurate my expectations would be.

For the next few days, Dr. Luke visited us on a daily basis and talked to us about hypotheticals upon our request. Nurses came and went, drawing blood and catching Juniper's piss in little clear plastic bags.

When they came for the spinal tap, Coley and I left the room. I was told she would never be able to associate my face with the pain, but I didn't want to associate her face with the pain anyway. And in the off chance they were wrong, I didn't want to be the boogeyman in Juniper's mind.

Coley and I spent half an hour of a sunny spring day in a colorful courtyard, as the doctors dug into Juniper's spine.

A small child played in the garden, plucking petals from flowers and setting them to sail across a little fountain, as his mother spoke on her mobile phone. The boy's mother was very distracted. I was sure she was telling a relative some tragic news about one of the boy's siblings.

Coley smiled and played with the boy, working hard to distract herself. I worried that Juniper might never get to set little leaves and petal sail across a little fountain. In my mind, in those moments, Juniper would never be capable of achieving the boy's curiosity. I am not sure why, but that was where my head was at the time. I was like a cold old man to the boy. Like some kind of cynical, pissed-off alcoholic dying from liver cancer without a single soul by the bedside. I avoided the his efforts to engage with me.

Normally Coley would have said something, but she let me grieve.

 

transitions

The first sign of trouble came when the nurse told us that Juniper would have to go to the transition nursery.

My heart sank with worry.

I watched tears stream down Coley's face as she told Juniper goodbye and the Magnesium entered her veins. I struggled to cope with that, so I began to build a wall. Brick by brick, I would busily build that wall over the course of the coming weeks. They took Juniper, slowly and casually, away to the transition nursery. 

When I first visited her a few hours later, I picked up and old landline telephone and told the nurse I was Juniper's dad. She was the first person I would tell that to. I entered a room full of babies, who were - for all intensive purposes - fighting for their lives.

Juniper lie there connected to the machines.

The tiny pulse oximeter told the nurse about low oxygen saturation. They added some oxygen to help her breathe. I noticed my own breathing speed up. I worried Juniper would not make it, despite being told that she would be OK.

Life is just so fragile. She was just so small. 

The transition nursery cleared Juniper to come to the hospital room just seven hours later. We were all together as a family for the first time (minus their big brother and my best friend, our hound dog Townes).

Coley and I quickly became acquainted with the challenges of managing two newborns.We struggled to feed Juniper. She seemed frantic, as if the womb had been some dry desert to her. She re-fluxed badly. The nurses assured us that this was all "normal" infant behavior and that first time parents often expressed such concerns.

I felt sick.

The humid Georgia air brushed against my nose and throat. I wore a SARS mask to protect the girls from their father. I worried about how I would look in the photos, but thought about the benefits of not having to smile.

At night I felt exhausted. We sent the girls to the nursery and slept a few hours. 

On day two, the daunting challenge of keeping two infants alive began to cause me significant anxiety. My fear about the situation manifested itself into obsessive compulsive behaviors. I became obsessed with washing my hands. They cracked and itched.

I began to unravel.

Reality had hit me. I felt that I had traded in my freedom. I put lotion on my hands and then washed them again. I sneezed into my shirt and later did "skin to skin" with Laurel. I then became convinced I had infected her. I asked the nurses to take her temperature obsessively. 

Medical professionals and family members flooded our room. They talked over one another and we struggled to their hear advice and congratulatory remarks. The room was filled with a plethora of information, but I retained very little. The hospital provided some printed materials that I put into a neat pile and moved around the room.

The flowers in the room rotted and smelled like death. The security system failed and an armed guard was placed outside of our room. I felt the pressure of guarding something valuable and vulnerable. We stayed in the hospital for just 4 days and then they sent us home with around 10 pounds of human flesh and 10 bags of formula, blankets and diapers.

I played "My Girl" by The Temptations several times on the way home to keep myself from panicking. 

the splice

On February 16, 2017, I sat in a small office chair and watched everyone go through their morning routines. Some discussed the news from the night before, others commented on sports scores. Finishing up their morning coffee, they prepared to cut into my wife and take out some of her organs. I sat there nervously sweating in anticipation. I was about to be the father of twin girls. I was nervous, but I was ready.

My wife, Coley, and I had done everything right. We had a house, a dog and a yard. We had a nursery decorated in little woodland creatures. We had accumulated a library of Children's books (I even wrote a few). We even had a fucking mini van.

We were ready. Or at least we thought we were.

I remember noticing how nonchalant everyone around me was acting at the hospital that day, as I sat there waiting for the most significant event of my life. They called me in when it was time to begin the C-Section. I sat down beside Coley and readied my camera like I was waiting for some endangered creature to come out of its habitat.

Coley is the strongest person I know. The procedure didn't seem to phase her.

Laurel and Juniper, were born at 8:30 and 8:31, respectively. I refer to this moment as the splice. There are few times in one's life where life completely changes in the span of one second. A moment when you are forever intertwined with something else, from that moment forward. The birth of your child/children is one of those times.

I caught some pictures of them with their asses in the air and told Coley I'd share those with their first boyfriends to embarrass them.

Once they found their way into the atmosphere and most of the vernix was polished off, the techs let me over to see them. They were beautiful. All of their parts and pieces were there. Honestly, they looked like tiny little old men that got in a fist fight. But to me, they were beautiful. I noticed that Juniper didn't cry much and that worried me, but otherwise everything seemed to be in its right place.

in the beginning

Holding your own child while she has a seizure feels like holding your own heart as it beats outside of your body. Juniper's seizures started when she was just 6 weeks old. I'll never forget the first time I experienced one of her seizures. I was in our small brick ranch in Decatur, Georgia feeding her Similac Sensitive formula and dodging her reflux, when her whole body began to twitch rhythmically like a heartbeat. Her eyes fixated on our drywall ceiling, her arms jumping forward with the weight of her small body, her hands clinched into little fists.

I would later refer to Juniper as our little fighter because she always kept her fists clenched, and because she endured more trips to the emergency room, more EEGs, EKGs and MRIs, more needles, more pain in her first few months of life than I had in my entire 34 years before she was born.

An email from our pediatic neurologist at Children's Healthcare of Atlanta with the subject of "Chromosomal Micro Array Results" began with "Results: ABNORMAL FindingDeletion of 1q21.1 to 1q21.2 and partial deletion of STXBP1." The email then described what it called "features" to include microcephaly, intellectual disability, dysmorphic facies, eye abnormalities, congenital heart defects, genitourinary anomalies, skeletal malformations, seizures, autism spectrum disorders, attention deficit hyperactivity,  early epileptic encephalopathy, developmental delay, ataxia, hypotonia among other features.

Even after hearing all this verbally from the neurologist, the email felt more painful. It just felt more permanent I guess. And it was permanent. And there was nothing I could do to change it. If you are a medical professional you know that this diagnosis is very serious. If you work in the technology industry like me, you are wondering why they call these features. Features are supposed to be good things, and all of this seemed so "bad." In technology, we call bad things Defects.

One of the first things I had to do to cope with this news was to stop thinking about it all as "bad." I tried to reject words like "Defect," "Disorder," and "Disease" and use words like "Different." Transcending societal norms became an crucial part of accepting reality for me, which I'll discuss more later.

When I first saw my little girl having a seizure I remember feeling like one does when staring at a clock. Her tiny limbs tapping at the air like second hands. Each second slowing down to strip the cloak of movement and show its real self. When you stare at a clock and watch the second hand, the world around you blurs, your perception of time bends, and everything stops moving. That's how it felt: like I was suspended in time, and I didn't want to move forward. I didn't want to have to move to the next second. I wanted time to stop and let me sit there quietly breathing while Juniper lie still in my arms.

But time would march on forward - and along with it would march a parade of medical professionals, altruists, assholes and academics to help us look for answers. I learn new things from my experience everyday and I have realized that I need to share my thoughts and experiences, prompting me to start this blog.

In this blog I'll write about 1) what I have experienced as a parent, 2) what I have learned about psychologically processing my experience and 3) what helpful resources I have found for parents (particularly those who have kids with special needs).

If you are new to parenting - especially if you have multiples or a child with differences - you may feel that your life is collapsing around you. But you will get your life back and this blog will tell you how.