Our Baby's Battle with Bacterial Meningitis
A Chronicle of our Champion of Chaos, Isabelle Rogers
Today, August 3rd, 2023, marks the one-year anniversary of a day we will never forget—the day our almost-3-month-old Izzy, was admitted to the hospital, diagnosed with GBS Bacterial Meningitis. It's a date seared into our memory.. a day that shifted our world entirely.
As we reflect on this significant milestone, filled with equal parts gratitude and heartache, we felt it was an opportune time to recap our journey.. chronicling Izzy's ongoing battle, our shared fears, hard-fought victories, and our immense gratitude.
Whether you've been with us since that fateful day or you're just now joining us, we appreciate your interest, care, and support. This post serves as a testament to Izzy's resilience, our family's story, the power of community, and most of all God’s sovereignty.
We hope it provides insight, encouragement, and strength to others who may face similar battles in the future. It's been a hell of a year, but also one filled with profound hope and resilience.
A Nightmare Unfolds
It began on an ordinary day when Izzy woke up from her nap. But this time, something was off. Izzy, who was a terrible sleeper, woke up lethargic after an extraordinarily long nap. She was also unusually unresponsive. We quickly decided to head to urgent care, because calling 911 seemed dramatic for what appeared to be a tired baby with a fever.
On our way, Jenn placed an ice-cold beverage can next to her cheek. Izzy didn’t even flinch. We panicked. We immediately pulled over into a vacant parking lot and called for an ambulance. At this point, we were dangerously racing against the clock… but we didn’t know it at the time.
We later found out that in these critical scenarios, a spinal tap is generally the go-to diagnostic tool for very young babies, but Izzy's age was right on the cusp of this guideline. Tragically, the initial ER doctor missed the diagnosis completely. Izzy was given Tylenol, and she suggested that we stay at the hospital so she can be monitored “just in case.” If only this doctor had attempted a simple neck lift—a detail we were painfully oblivious of at the time—perhaps things would have been different.
Mercifully, things changed drastically with the arrival of the shift change doctor. This godsend of a woman recognized the signs and jumped into action immediately. She ordered the spinal tap and was told that it was likely viral or bacterial meningitis. Viral is the most common type and most get better without treatment. Bacterial meningitis is rare and devastating with some patients dying in a matter of hours.
By the time the specific strain of meningitis was identified, Izzy was already in the throes of horrifying seizures. Her body was fighting a desperate battle against the infection. When the treatment finally started, she was standing at death’s door. Her heart and lungs labored relentlessly against the disease, but this desperate fight came at a heavy cost. The buildup of lactic acid from her exertion further poisoned her bloodstream, causing her body to shunt and teeter on the brink of multi-organ failure.
In the wee hours of the following morning, the room swelled with doctors and nurses, all rallying together to save our little girl. Izzy was cocooned in a terrifying web of medical technology. Tubes sprouted from every conceivable orifice—seven at any given time—including a femoral line and an array of IVs. A mesh of EEG electrodes clung to her tiny head, monitoring her brain activity to get the seizures under control. To aid her battle, they put her into a medically induced coma, hoping it would give her fragile body the respite it needed to mount a stronger fight.
When Hope Falters
After a brief period of calm, the day of Izzy's MRI arrived. I clung desperately to the hope that the damage hadn't reached her brain.. that we could contain this destructive force.
When the doctor walked in with worry etched deeply on her face, my heart sank. When the words the doctor spoke, “Izzy *will* be a special needs child,” shattered my world into a million pieces.
In the silent solitude of our hospital room's bathroom, I locked myself in, burying my face into the cold, hard floor. The grief was suffocating, a tidal wave of raw despair crashing over me at the thought of a future stolen from our precious Izzy.
I learned later from the nurses that based on the MRI, they feared Izzy to be a "total care" baby, or a "vegetable," as it's harshly referred to sometimes. It was a devastating blow.. one we never saw coming.
A Rocky Road
Yet, in this storm of despair, we found a silver lining. Izzy became alert and started tracking us, her eyes following us like tiny beacons of hope. It was a small measure of comfort, a faint glimmer of light at the end of a dark tunnel.
But the battles were far from over. While she was no longer experiencing pronounced, physically evident seizures, subclinical seizure activities persisted…imperceptible but still present. Alongside this, she also battled fevers, persistent coughing, and general discomfort. We even had to confront pneumonia.
Then, another scare came our way. It was pointed out that Izzy might have suffered a stroke, causing damage to the inner structures of her brain - a terrifying possibility, with implications far more severe than we had initially understood.
We seemed to have dodged a bullet on this one as it either 1. wasn’t what it seemed in that initial MRI or 2. the damage was so minor that it seems to be of no consequence.
[This video was our first time holding our baby in 9 days. It was incredibly difficult with all the wires]
Small but Significant Victories
There was a period of uncertainty after Izzy came off the ventilator when we didn't know if she would be able to nurse again. Nursing, contrary to what one might assume, requires complex coordination – a skill that we feared Izzy might have lost. Also, there were worries about potential aspiration due to her weakened condition.
To our relief and joy, Izzy proved her resilience once again. She picked up nursing with surprising ease, surpassing our cautious hopes. During an X-ray test to check for aspiration, she was given a pretty gross solution to drink from a bottle. With surprising gusto, she chugged it down greedily and showed no signs of aspirating.
Amid all this turmoil, Izzy kept on surprising us with her strength and spirit. She was smiling, cooing, eating, and sleeping - all while her left hand/arm motor control and neck strength were visibly affected.
The Final Hospital Twist
Given the extent of her brain damage, the doctors warned us of a rare risk of empyemas - walled-off pockets of pus and infection on her brain, untreatable by IV antibiotics. If they developed, it would require brain surgery. Brain. Surgery.
At the end of Izzy's scheduled four-week course of antibiotics, the MRI scan we thought would clear us instead threw us into another pit of worry. They found spots that they suspected were empyemas which meant extending Izzy's stay for two more weeks of antibiotics and close monitoring. Once again, we found ourselves in a daunting wait-and-see situation.
In what was perhaps the biggest sigh of relief, the suspected empyemas turned out to be hygromas (pockets of fluid). After this final scare, we were more than ready to leave the hospital and take Izzy home.
The sight of those MRI scans, knowing a third of Izzy's brain was dead tissue, continued to haunt us. But Izzy's strength and progress kept going.
The Echoes of Silence
When we finally brought Izzy home, we felt a profound sense of relief. The constant activity and relentless clamor of the hospital machinery were replaced by the familiar comfort of our home. It felt like we had closed a chapter on the most terrifying ordeal of our lives. We were encouraged by the knowledge that the plasticity of a baby's brain is remarkable, allowing it to bounce back from adversity in ways we adults could never imagine.
Izzy's coos were music to our ears. Every time a loud noise elicited a startle from her, we took it as further evidence of her intact hearing. This is a big deal since hearing loss is a pretty common complication of bacterial meningitis.
So, when it was time for her formal hearing test, we approached it with optimism, seeing it more as a formality that would only confirm what we believed to be true.
The results hit us hard. Izzy was completely deaf in her right ear. We grappled with a reality we had not prepared ourselves for. Even her left ear, while it showed normal readings, was far from safe. Doctors warned us that if her cochlear had sustained damage during her battle with meningitis, it might still be undergoing ossification, putting her at risk of losing hearing in her left ear too.
This was a punch to the gut. The clock was ticking and we were racing against it, yet again. If Izzy's right cochlear ossified completely, inserting the electrode needed for a cochlear implant would become impossible. We had to act swiftly. On November 7, 2022, just a few short weeks after this discovery, Izzy underwent cochlear implant surgery.
The surgery was successful, but the emotional toll was heavy. It was particularly devastating for Jenn, who wrestled with feelings of resentment for months. The optimism that had buoyed us in the first few weeks after leaving the hospital gave way to a profound sense of unfairness. It felt as though our hopes had been snatched away just as we were beginning to dream again.
Yet, amidst the grief and disappointment, Izzy continued to surprise us. She started hitting developmental milestones, including a hand-to-hand transfer, reminding us of her resilience and extraordinary ability to adapt.
Despite the loss of her hearing, Izzy was growing, developing, and most importantly, she was happy. She continued to fight, and we, inspired by her strength, fought alongside her, taking each day as it came.
Chasing Progress
As 2022 drew to a close, we were grappling with a significant hurdle: finding quality therapy for Izzy. This search was laden with roadblocks at every turn. It seemed that each avenue we ventured down was either ridiculously congested or alarmingly subpar. The process was punishing, filled with soul-sucking phone calls, protracted waiting lists, perplexing insurance paperwork, and a consistent gnawing of anxiety to get help quickly.
It was amidst this turmoil that, around Christmas, we received an unexpected gift. Jenn's brother and sister-in-law, fully aware of our struggles and Izzy's pressing needs, gifted her a spot in a highly-esteemed, intensive therapy program. The program was renowned for its effectiveness but was nearly always fully booked due to its popularity.
Located in Fort Worth, Texas, this program was a substantial four-hour drive from our home in Austin. The therapy was grueling, testing Izzy's physical boundaries to the utmost. She cried every day, each session stretching out for an agonizing hour.
Despite this, as parents, were committed to giving Izzy every opportunity to thrive. We willingly drove those extensive miles, ready to witness her tears if it meant she would receive the best care possible.
A week into the program we were thrown another curveball. Izzy experienced infantile spasms - a rare type of seizure with potentially devastating long-term consequences. Witnessing this was horrifying, and the fear was exacerbated by the knowledge that these seizures could cause Izzy to lose the hard-won progress she had made and increase her risk of autism and further cognitive delays.
Izzy’s neurologist immediately introduced steroids to Izzy's regimen, and we surprisingly got the green light for continuing at the intensive. It was a tough decision because we were worried the stress may have triggered these seizures. And the steroids caused Izzy to be ravenously hungry, and very irritable so there wasn’t much rest even outside of the therapy sessions. We remained steadfast in our commitment to Izzy's health and continued her therapy. Mercifully, Izzy experienced her final spasm (to date) on the drive back home from intensive.
After this terrifying start to the year, Izzy’s many improvements have blown us away. After the round of steroids, we continued to steadily wean her off the seizure medicines, and she took her last dose almost precisely ten months after she was admitted to the hospital. Her most recent overnight EEG still showed some seizure activity (or discharges), but her neurologist described it as the "best results we could hope for."
In the Eye of the Storm
That didn’t mean we were done though. We had a very oddball challenge with regard to Izzy's vision. It was an unexpected development, given that both Jenn and I have good eyesight.
This discovery came about through a serendipitous chain of events. The doctor who had performed Izzy's cochlear implant surgery recommended scheduling an eye exam, even though vision impairment isn't typically associated with bacterial meningitis. We followed through with his advice, not expecting anything significant to come of it.
However, to our surprise, we found out that Izzy had poor vision in both of her eyes. The result was as confounding as it was unanticipated. Vision impairments in children her age are usually undetected as they are often difficult to diagnose until the child is older. So, in a sense, Izzy was both fortunate and unfortunate. Fortunate because we discovered her condition early, enabling us to intervene and support her immediately, but unfortunate because she had to face yet another challenge at such a young age.
But Izzy, our little champion of chaos, took this challenge in stride and astonished us; she acclimatized to her new glasses in just a single day. We told that most young children take around 2 weeks to adjust.
One Day at a Time
Since my last update, which you can find here, Izzy’s crawling skills are blossoming, each day bringing her closer to the freedom of unassisted exploration.
However, the waiting game persists, a constant, quiet nagging in the backdrop of our everyday routine. Beyond her developing motor skills, we're oh-so curious about how these experiences are shaping her cognitive development.
This journey has been a profound lesson in grace, in accepting the rhythm of life with all its unexpected ebbs and flows. The outpouring of generosity for Izzy's GoFundMe has been nothing short of miraculous, proving to us that when we are faced with challenges, people respond with unbelievable kindness.
We’ve grown so much. We've become more discerning about distinguishing our will from God's will. We are learning the delicate art of surrender. We've come to recognize that we have a resilience within us that's capable of weathering even the harshest of storms. And now, through mediums like the podcast, Grace, Giggles and Growing Pains, and this new platform, we can share these tales of growth and transformation.
Looking ahead, we have a special date marked on our calendars. Six weeks from now, a year after Izzy's discharge, we'll be visiting the hospital that was once a home to us. We plan to reunite with the selfless healthcare heroes, the nurses and doctors, who played a crucial part in Izzy's journey. It will be a celebration of how far we've come, and we hope to deliver a token of our appreciation for the healing hands that once nurtured Izzy.
So, here we are, navigating life's winding path one day at a time. Every challenge we face is a testament to a loving Father who showcases our resilience in Him, and every victory a testament to the Grace that guides us. And through it all, we learn, grow, and share our stories and some giggles (hopefully), with all of you.
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