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.
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