Maura Fern: The Hunger Games and a Look Back at 11 Months

The movie Hunger Games was just released into theaters this weekend. Watching television trailers of Katniss Everdeen evokes memories of the Children's Hospital of Philadelphia, eleven months ago when Maura was first admitted as a premie for her infant epilepsy.

It was about this time last year that I was scheduled to bring my middle school students down to the Scholastic Book Fair. I always try my very best to engage with my students to learn about what they are reading. Rooting for book recommendations to buff both my classroom and personal library.

A few of my students raved about The Hunger Games, and another handful had decided to purchase the book that day. To be perfectly honest, I typically tend to avert serial science-fiction and fantasy young adult novels like the plague, as most books are poorly written excuses for movie and merchandise tie-ins.

Adolescent fandom doesn't necessarily hinge on the merits of a book's literary qualities.Team Jacob or Team Edward anyone? Even Harry Potter's saccharine storytelling makes me feel nauseous within the first few chapters. Sadly, for every successfully franchise there are dozen other clones cloying for that same level of financial success.

So it came as some small surprise when I first picked up The Hunger Games off the bookshelf. Within the first few lines, I was immediately hooked on the quality of writing. A YA book that didn't appear to be dumbed down. Yay! I purchased the book from the Scholastsic Fare and set it aside for later reading.

Just a few weeks later Caroline was admitted to Virtua for prolonged medical observation due to bleeding with a placenta previa.

There wasn't much to do at that time other than keep my wife company and try to find the sweet spot in those clumsy hospital recliners, so I picked up the Hunger Games and plowed through, cover to cover, in a single sitting. The book helped me take my mind off the emergency of present situation, and helped pass the time.

So when Maura was later admitted to CHOP, I scoured every local library for a copy of Catching Fire and Mockingjay. The local bookstores were only carrying hardback, and I was reluctant to pay several times the price when a softcover would do as nicely. Fortunately a co-worker was kind enough to lend me her copies. I read through both books in a total of three days.

Somewhere deep in my mind, I wanted to associate my daughter's struggle against epilepsy with Katniss Everdeen's fight in the games. It's not like the conflicts were even remotely comparable. No. Although at times it felt that Maura was bound to CHOP like Katniss was confined to the arena.

Rather, I needed for my daughter to have enough toughness to endure multiple seizures a day and all of the medical tests and interventions that followed. The Hunger Games' Katniss appeared like a natural parallel: a strong female protagonist whose ability to survive hinged on her inner-strength, intuition, and ingenuity.

I needed for my own daughter to grow strong enough to thrive, and begin to resist the onset of her epileptic seizures. She needed to become her own Katniss.

The past year hasn't been easy for our family; rather, it's been pocked with developmental delays and the occasional seizure. Though, good progress on all fronts. Although Maura's future with epilepsy is still uncertain, at least my wife and I aren't crushed with feelings of overwhelming despair.

Watching my middle school students energetically talk about the books and movie comes with the mix of bitter-sweetness. On one level, I'm thrilled they are as excited about the books as I once was (and still am). Though it comes as a constant reminder of Maura's struggle in life.

The Lorax Movie-Going Experience

It all started with a dinnertime gimmick to keep P-Finn planted in his chair for an entire meal. We'd watch movie previews on my iPhone Trailers app in between bites of pasta and sliced apples. A total dad move on my part. To be honest, it worked wonders in keeping him seated... though the videos mostly distracted him from eating. OK. So that trick didn't work as well as I hoped it would.

Patrick noticed the Lorax trailer right away from a small thumbnail image;  something about bright orange color and signature mustache that made him jump off the page.  Dr. Seuss was a steady part of our bedtime book rotation, especially The Lorax. Seeing the image, he jumped at the opportunity to watch the trailer. And re-watch the trailer. And re-watch that same exact trailer all over again.

It had become part of an obsession on our part. We started to read (and re-read) the book several nights a week. Then, right before bed, we would turn off all the lights and watch a few trailers under the covers of his bed. He would manipulate the iPhone's touch screen. Anything in the "Family" genre was game: Hugo, Puss in Boots, The Secret World of Arietty, Brave, and especially The Lorax.



After five months in waiting, The Lorax opened on Dr. Seuss' B-Day-- also celebrated as "Read Across America". In light of P-Finn's steadfast devotion to both the book and movie trailer, my wife and I decided take him to the movies as a surprise.  I have to admit, we had some reservations about bringing Patrick to a packed theater during the movie's opening weekend.

Our previous movie-going attempts were characterized by P-Finn's sprints up and down the staircase mixed with marathon bouts of 'not listening'. Idle threats of, "Keep this up and we're leaving," even though I didn't want to miss the last 30-minutes when I paid over $30 for admission. On top of that, Maura was irritable due to a recent change in her medication. Recipe for a good time.

We arrived late-- at least 10 minutes into the previews-- and had to sit towards the front row. Maura did break down into a fit of Kepprage and pre-nap irritability. Caroline nursed her to sleep. P-Finn was firmly planted in his seat throughout the entire movie. Success! Funny enough, Patrick started to recite the lines he memorized from the trailer during the appropriate scenes.

And the best part? Patrick repeatedly asked, "Is it over? Dad, why is the movie over?" when the credits began to roll. This morning he even asked if we could head back to see Lorax in the movies. Time to get Patricked hyped up for Pixar's Brave so he can be ready by summertime.

March for Maura

Looking back over the past month, I'm not quite sure where February went. To be quite frank, I'm glad it's gone. It won't be missed by me. Nor my wife. Least of all by my daughter.

Late January the neurologist gave the go ahead ween Maura off Topomax over a three week period. She was five months seizure free, and we felt quite confident Keppra could singularly control her epilepsy. And she did well enough. Five months seizure free. The weening appeared successful.

That was thirty days ago. Twenty seizures later.

Her incidents started the weekend immediately following her last dosage. My work week became a blur of mid-day text messages bluntly declaring, "Maura had another." Wanting nothing more than to rush home, but I'd have to slough through the rest of my work day instead.

Even if I could be home, there was nothing I could do to prevent her seizures. Actually, there wasn't much that could be done following in the wake. Other than perpetuate a feedback loop of anxiety over where and when she would have another episode.

In speaking with the neurologist, we've decided to place Maura back on a light dosage of Topomax and adjust as necessary. The thought of having an epilepsy-free child who doesn't require daily medication was nice, but it's far better to actually have her seizures completely under control... no matter how many medications this requires.

I can't believe my little daughter will be 10-months-old come March 2nd. Or that she will be a year old. My wife came up with the brilliant idea to participate in a March of Dimes to commemorate her first revolution around the sun.  To celebrate the other preemies born this year. But most of all, to provide support to families who have yet to endure weeks (if not months) in the NICU.

My wife has set a goal to fund raise $500. I'm personally aiming for $100. Check out my fundraising page if interested in making a donation towards our March for Maura to donate to the greater good of March of Dimes: http://www.marchforbabies.org/janalon

#Instagram Reflection of the Week

Our pleasantries measured the changes in life since our last acquaintance. I eagerly shared the news of my daughter Maura. She remarked, "As long as they are born healthy… that is all that matters." I choked back on the thought of my daughter's epilepsy, and decided to end the conversation with a silent nod. After all, wasn't she a happy and healthy child?

Maura Fern: Phased Topomax & Recent Epileptic Seizures

Patrick Finn rooted through the Fisher Price medical kit kit with surgical precision. Although the word stethoscope wasn't yet a part of his 3-year-old vocabulary, he could expertly demonstrate how to use the instrument. The blood pressure cuff was a particular hit, as each pump of the bulb sent the dial spinning into a frenzied rotation. Yupp. We're talking Dr. P-Finn. 


My wife and I always wondered how much he would remember of Maura's 2-month stay at the Children's Hospital of Philadelphia, or the flurry of neurological and pediatric check-ups after her release. Judging by his sense of purpose applying the medical kit, those memories were still a part of his vivid recall. The toys offered him a creative means to activate and explore those memories.


For all his deliberate play, I was shocked when he plunged the fake syringe into my mouth. It caught me off guard, and I nearly managed to choke out a reprimand when my wife shot me a sideways glance from across. the room. Then it dawned on me. This wasn't a pointy needle for immunization; he imagined the oral syringe we used to administer Maura's anti-seizure medication three times a day. Who could fault such a keen observer?


As for Maura, each and every day was marked progress. Each and every day distanced us from her last episode of epilepsy in early Septmber. Having already weened her off the anti-seizure medication Phenobarbital, my wife and I were eager to begin phasing out Topomax-- a medication more commonly known to treat migraine headaches. 


Topo was also the only medication which required constant refrigeration, which seriously hampered our ability to "pick up and go" without more seriously planning our outings around her medication schedule. With a fair amount of consultation with CHOP's neurology specialists, we delicately planned to decrease Maura's Topomax schedule over a three week span-- ultimately eliminating the need for this particular treatment. 


My wife administered the last dose of Topomax earlier this week. We allowed that major milestone to gracefully pass by with not much more than a FaceBook post acknowledging the event. It only took one incoming phone call to break that piece of mind.


Twenty-seven of my seventh grade students continued to research and write annotated bibliographies well into that Friday afternoon as the front office directed the phone call to my classroom; I discreetly answered the phone, nervously anticipating the next weighty words to drop with crushing gravity. 


"Joe, Maura had a seizure this afternoon." There wasn't much more that could be said over the phone, and I could accomplish even less from my remote location miles away from my wife and children. We exchanged a few more words: Caroline outlined the narrative with a few critical details, and I offered a few words of heartfelt support. I hung up the phone and turned to finish out the rest of my school day.


Am I disappointed? No. The word too heavily conveys the idea of failure, lack of hope, and feeling unfulfilled. If anything I feel very relieved that Maura and her medications were able to hold the seizures at bay for such a long duration. Proud in my wife's determination to work with Early Intervention and physical therapy to develop the gross motor skills. Relieved that my son is handling our family crisis like a well adjusted 3-year-old. 


So... we restart the clock back to "day zero seizure free," continue to manage Maura's seizures through the best medical attention CHOP can provide, and and continue to hope Maura will one day outgrow her epilepsy.

Letters from Santa Claus 2011

Letters from Santa Claus finally arrived this year for P-Finn and Maura. Looks like he has a fairly good idea about exactly what is happening in this household. With less than a week until Christmas, the kids had better be on their best behavior!

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Maura Fern: Snapshots at 1 mos. & 6 mos.

Maura, 17 Days Old

Maura, Just Shy of 6 mos

Born four weeks premature. Two months in the hospital.
I never imagined her growing up... and then she did.

Maura Fern: A NICU Infant's Development (Feed Her, Grow Her)

I thought Maura would never grow. Two months in the NICU and she hadn't gained as much as an inch or a pound in all that time; her entry weight was nearly the same size upon departure. She was our perma-infant, to live out her life in some nightmarish, never-ending NICU loop.

By the time she came home, her weight percentile was only in the single digits. Two months old and she still fit into newborn clothing with plenty of wiggle room. We had one immediate goal: feed her, grow her. And yes, within a matter of weeks our dear little Miss Maura wasn't so little after all: she had jumped to 70% in her weight class!

My daughter's skinny chicken legs had butterballed into some massive thunder thighs! Even her ankles and knees were draped in rolling flabs of baby fat. Can't say that I would ever have another opportunity in my entire lifetime to compliment anyone of the opposite gender on exponential weight gain.

There's no question Maura's physical growth was a blessing, though it also caused significant complications. Two month of laying prone in a hospital bed had not only delayed her gross motor skills, but had actually atrophied whatever muscles she was born with. Now add to that the added healthy girth of a breastfed baby.

Thankfully Maura qualified for Early Intervention. Having worked for 10 years in the mainstream model of special education, it was odd to be on the opposite side of evaluations and the crafting of an intervention plan. We were to work alongside a physical therapist on tummy time exercises to enhance her core muscle groups.

It was more than obvious that a task as simple as holding her head up was not physically possible… at first. It took another two months just to gain enough neck control for her noggin to teeter back and forth like a bobble head. Needless to say, I'm simply astounded by how much strength Maura has gained in just the past two weeks alone.

We noticed her getting antsy when placed in an incline position. She'd strain every last abdominal muscle to bend herself forward. It was then we got the idea to try placing her in an exercise saucer. She took to it right away. Although she doesn't quite have enough strength to balance her torso, she appears quite content to stand supported in an upright position.


Five months in the making, this milestone feels like a major breakthrough and a Win for the little lady.

Maura's Story: Diagnosis & Treatment of Infant Epilepsy in Retrospect

It started to become complicated about half-way through my wife's pregnancy. She was diagnosed with placenta previa, a condition where the placenta comes to implant itself right over the cervix. A very serious condition considering the placenta is a massive organ of blood an nutrition, obstructing the baby from being naturally delivered. God forbid the placenta were to pull away from the lining of the uterus, it would quickly threaten the lives of both mother and daughter.

We hoped the situation would resolve by itself. Best case scenario would be for the placenta to move away from the cervix as the uterus grew in size. Although there was mention of scheduling a C-section, my wife's OB was agreeable to postpone any decision making until Caroline was much closer to the expected due date. She never even came close. Nearly four weeks before the expected delivery, my wife experienced heavy bleeding and had to be rushed to the Virtua Hospital in Mount Holly.

After three days of close observation, the OB decided it was too risky to allow for her to go home. It was decided to schedule the C-section later that afternoon. This decision was necessitated by the urgency of bleeding with placenta previa. Although we were disappointed the option deliver naturally, we knew it was in the best interest of mother and daughter. We only wanted a healthy child. We only wanted what was best for him or her.


The operation was marked by some 'excitement' (as the OB later came to call the event). The baby was both breech, wrapped in the umbilical chord, and didn't naturally take the first breath. The medical professionals were very cool under pressure, and we only came to learn about the riskiness of the delivery well after the fact. Maura Fern was born May 2nd, six pounds five ounces. Because she was four weeks premature, the doctors took Maura into the NICU for observation while mom recovered from her operation.

That was the longest three hours of my life. Well, at least up through the life I had lived. We anticipated the worst. Concerned that the complications with Maura's birth had cause some sort of serious condition. Our fears were belied when Maura came back to us, healthy, content. For all the hardship my wife had endured with the complications of her pregnancy, here was the perfect baby. The next day gave way to a never-ending cycle of visitations from family and medical professionals.

With the exception of jaundice, it appeared we would be able to finally take Maura home. We made the necessary preparations and following every prescribed checklist. By the end of the day, she only needed to pass a car-seat test. This baby exam mainly consisted of having Maura buckled into a car seat, under close observation, for a 90-minute period. I was so certain of ourselves, that I had started packing the car with every last possession.


Just as I was organizing the last round of baggage, the nurse came back with disappointing news: Maura had a blue-spell towards the end of the study, and would need to stay in the NICU for observation.Sleep deprived. Emotional. Worn down from the preceding days. We were both absolutely crushed. I slowly trudged back down to the car and started regathering all the bags for at least another night's stay. Another night. We had already spent the last five nights at the hospital, and now we had to contemplate the possibility of a much longer stay.

My wife and I turned our thoughts on the "What-To-Do" with our 2-year-old son, Patrick Finn, who was staying with my parents. It seemed unfair to have him stay much longer. Caroline and I made the tough decision to split up. We had two children, both who dearly needed us. Again our options were forced. Patrick couldn't come to stay in the hospital room just as Caroline couldn't leave Maura. With a kiss, I left my wife and infant to care for my son.


Later that night my wife called with an update: since my departure, Maura had experienced several more blue spells. The nurses started to suspected these apnea-life events were the manifestation of seizures. My daughter was immediately placed on EEG monitoring and administered the drug Phenobarbital. At the bare minimum, the NICU would need several more days to monitor the situation and adjust medication if necessary. Things had gone from questionable to worse. I felt so powerless as my wife and daughter were so many miles away… and there was nothing I could do to help.

Little did I know this was only the beginning. Maura suffered seven seizures on the following day. It took my every last reserve of energy and emotional strength to teach the final session in my graduate level course. The day thereafter my parents took Patrick for the day while I visited Caroline and Maura at the hospital. The NICU decided the situation called for more specialized services which could not be provided by Virtua. We would need to send her to either St. Christopher's, Dupont, or Children's Hospital of Philadelphia. There was no question, as CHOP's reputation was unsurpassed in our minds.


For the first time I outwardly cried. Such a small child. Vulnerable. So many miles apart from her parents. Separated. I cringed to see her securely placed in the incubation box as the emergency transport staff rolled her out of the NICU towards the ambulance. There we stood, speechless, my wife and I holding one another. We were now entirely devastated. This was our seventh day in the hospital, and any trace amount of optimism was now utterly quashed. Caroline and I entered the car to drive home, empty handed.

Upon admittance to CHOP's NICU West Ward, Maura was fitted with a 24-hour video EEG and placed under Bili lights to address her jaundice. A highly expert neurology team administered a battery of tests to determine the cause through process of elimination. Blood work. Cat scan. Blood work. MRI. Blood work. Genetics. Blood work. Metabolism. Blood work. On and on and on. For every test that came back negative, leaving possible the outcomes as entirely more simple or exotic without middle ground. Caroline and I were trapped in the limbo between testing and results.

Poor Maura. She knew no other life other than monitors, needles, nurses, and sleep. Seedy little ideas creeped into our minds, and germinated the doubt that our little girl would ever survive this whole ordeal, much less ever leave the hospital. That was a dark place, filled with the despair of not-knowing. We were very fortunate to have the best team of nurses and doctors who made every attempt to put us at ease. In my limited experience with hospitals, I have never met a staff that so delicately balanced medical realism with the comforts of consideration.


Treatment, not cure or even diagnosis, proved to be the only forward movement at this time. The team started to adjust medications. Upped Phenobarbital. No impact upon her seizures. Added Keppra. Little impact. The nature of the seizures began to change in manifestation, from apnea "blue spells" to all out tonic clonic (the old grand mal). One doctor finally dropped the "E" word, clarifying that epilepsy is defined as two or more unproved seizures with an unknown etiology (or known cause of origin).

One week. Two weeks. It would have been all too easy to loose the meter of days and nights in that room if it wasn't for us having to go home at night for our son. Having utilized paid leave (an upgrade from Family Medical Leave thanks to my empathetic administration), I had to return to work. Caroline spent every morning down at CHOP. I would visit nights when I could. We both managed to balance time with my two-year-old, even managing our "Thomas the Tank Engine" crazed son to CHOP via the Trenton to Philadelphia line as a special treat. Family life was wrapped around our new routine visiting Maura. This was our new normal.

Things began to quiet down. Maura's seizures started to slowly abate. Morning rounds were starting to entertain our questions of "when" with the conditions of three-days seizure free. Two. And then one. There was the matter of choosing another coming-home outfit. The feeling that we had put everything behind us. Friday seemed like the perfect day, as it would leave an open weekend ahead. The car ride home was filled with the breath-holding worry that another seizure would send us right back into CHOP's NICU.


Saturday was absolutely perfect, a perfect script for an unfilled movie. We proudly marched Maura up and down our Town's street fair at the amazement of all our friends and neighbors. There we were, finally a unified family happy in the the late arrival of our second born. We should have seen it coming, with the moment seeming too perfect. Sunday saw to our unnamed fear. In stepping out the door, Maura was caught in another seizure with an uncomfortably long blue spell.

We whisked Maura up to Princeton Medical, an affiliate of CHOP. There we waited five hours in the ER for the transfer order back down to Philadelphia. We panicked. In retrospect, it would have made more sense to make the forty-minute drive back down to CHOP rather than thirty-minutes in the opposite direction. If anything, the experience humbled us into completely acknowledging CHOP as pure heaven on earth (especially in comparison to the present condition of waiting in a sickly ER). Sadly, watching the emergency transport team take Maura away was an all to familiar feeling. An hour later, she was readmitted to the NICU.


Pushing aside her feelings of doubt, Caroline became a steel rudder, resolved to see Maura back home. At night, she would Google every known iteration of infant, seizure, epilepsy, etiology, neonatal convulsions. Most of what she read were the absolute nightmare stories other people choose to blog or forum post about. A smaller fraction returned links to medical journals riddled with professional jargon and acronyms. She stumbled across studies conducted at the Children's Hospital up in Boston where a researcher had marked success using Topamax with infant seizures. After some amount of persuasion, the medical team acquiesced to my wife's request.

Phenobarbital. Keppra. And now Topamax. Three medications administered through an nasal-gastrointestinal tube four times daily. It was a rough going as the medical cocktail was adjusted to therapeutic levels. Blood work. Blood work. Blood work. Still more testing. The seizures persisted, with upwards of seven tonic clonic episodes per day. And then… and then they started to dissipate once again. This time the medical reevaluated the terms for Maura's release: less than three seizures per day, less than three minutes in duration, without the characteristic blue spell.

For every two good days, a bad day followed in its wake. Like a pendulum swing coming to rest, the instances grew less frequent. And then, release. Having spent the past 35 days in the hospital, Maura was finally ready to come home for good. Although Caroline fought to nurse and pump, Maura didn't thrive in that clinical environment. All that time laying prone in a NICU crib. She had gained only a few ounces during her stay. Little to no development of gross motor skills. We knew we had handwork and setbacks ahead, but this time we were better prepared to live with Maura's epilepsy.

Maura Fern: A Portrait of Infant Epilepsy

Yesterday was conceivably Maura Fern's worst day since leaving Children's Hospital of Philadelphia where It wasn't uncommon for her to have upwards of seven seizures per day. Yesterday she experienced five episodes (up from the two the day before that).

It's hard to believe her first episode occurred within the first 40-hours of life, and here she is almost 4-months-old. As you can imagine, the appearance of her seizures have changed with her age.

The seizures typically begin with a piercing cry. it is unmistakable, like nothing you have ever heard (and you can hear it across the house). Right then hear back arches upward and eyes roll to the back-left. They appear keenly focused on some distant object, and will not track faces or voices.

Maura's muscle tenses. Her arms fall to the side and fists start pumping. Every last muscle in her face starts to twitch… All of which is coordinated in a rapid, pulsing rhythm of contract, release, contract, release.

Even her breathing is gripped by the seizures as her lungs struggle against shallow, rhythmic breaths. When she was much younger, she would enter a state of apnea, sometimes requiring assisted breathing from the CHOP nurses. Now, she becomes quite pale… and you wait for her to regain control.

120 seconds of pure helplessness. There is nothing we, the parents, can do outside of just hold her lovingly, call her name waiting for some response, and count every tick of that clock, and wait for the typically, two-minute episode to end.

There is no rhyme or reason to the onset, though Caroline and I have recently associated a trigger upon waking. Right now that is purely speculation, as we are grasping at straws for any real answers.

Just imagine looking at a peacefully sleeping baby, and worrying about the next time she wakes. You might have some idea… Though, to be honest we aren't fearful… just anxious knowing it can happen at any time (and very grateful when it doesn't).

We are hopeful for a reprieve from Maura's epilepsy, and can have a least another month-plus seizure free; though we are really praying she grows out of this condition.

"What Sarah Said": a live action web comic (episode 2, Hurricane Irene edition)

"Sarah the roving weatherduck reporting from the West Jersey evacuation center where one person lined up to take advantage of services. Miss Maura, what did you think of... Oh wait. Did you just poop your pantaloons?"



"Sarah the roving weatherduck reporting the after effects of the storm. Here in West Jersey a plight of "downed" acorns litter the streets, and at least two squirrels seem to have fallen from the trees. And in other news..."



Stepping away from her duties as an on-the-scene action reporter, Sarah rubs elbows with the locals to toast smores during the West Jersey power outage. Marshmallows are sweet, good friends you can rely upon are even sweeter.



"Sarah here, joining with the benevolant, humanitarian efforts of the West Jersey communities to thoroughly clean up after the devastating effects of Irene... though, it looks like I brought more devastation upon myself. Oh dear God, I am really never, never drinking again."



"Local schools & businesses are closing due to flood conditions caused by storm water runoff. For those who braved going into work, it sucks to be you... unless you have amphibious inclinations like m'self. I'm rather enjoying the dip."