Aspirations

What are your aspirations?  What do you aspire to become?  What inspires you?  These are but a handful of the questions I have asked myself of late.  Each question, in and of itself, is a good one to ask, but I have found a common thought behind them all.

Three of my four children suffered from seizures as very young infants.  When my Nyssa was 3 days old, she stopped breathing, not once, but numerous times a day, to the point where she sometimes turned blue.  For the first 3 months of her life, I hardly slept at all because I was constantly having to give her infant CPR.  My pediatrician at the time never witnessed these episodes, so she chalked it up to me being an overly protective mother.

We had no such issues with Nathaniel, but by time Benjamin was born, I had learned to go with my gut feelings regarding the lives of my precious children.  The day after he came home from the hospital, he started doing the same thing Nyssa had done.  He would slowly turn his head to the side, his arms would go up at the elbow, and he would freeze.  He wouldn't blink.  He wouldn't move.  He wouldn't breathe.  Once again, I fell into the life-saving maneuvers as before.  The third time he stopped breathing, mere hours after his first episode, I called the pediatrician and told her we were taking him to the ER at the children's hospital.  We sat in the waiting room as time dragged on until someone called his name.  The doctor listened to my concerns, examined him, and gave him a clean bill of health.  Having witnessed nothing himself, he turned to walk out the door.  At that moment, I pointed to Benjamin's little body and said, "There!  Look!"

When the doctor saw my baby, his entire mannerism changed from a slow calm to a rapid fire questioning and professionalism.  How often had this happened?  Did it look like this every time?  This was not simply a case of an infant who skipped a breath (a common occurrence).  Benjamin was having a frozen, silent seizure.  The doctor picked him up and carried my 56 hour old son into the closest trauma room.

The next four hours seemed like an eternity as they tried to run tests in between seizures, for they were coming so close together.  I had never heard the terms, "Brady," or "tachycardia," but I became quite familiar with them over the next few hours.  This night I heard them over and over and over again.  It got so they had to put my baby into an induced coma and put a ventilator tube down his throat so they could run tests on him.  They took blood from everywhere, ran a spinal tap, and took blood again because it congealed before they could get it to the labs.

I spent the next 10 postpartum days in a chair fold-out bed in the PICU, the Pediatric Intensive Care Unit, while the doctors tried to discover what was wrong with my son.  I pumped milk for him and sang to my infant, holding his hand while he slumbered, hooked up to heart monitors and breathing tubes as he lay ever so still in his incubator crib.  The first 7 were the longest of my life.  I couldn't move him, couldn't hold him; as far as I could tell, because of his induced sleep, he had no idea I was near.  All I could do was call the nurse when one of his machines beeped.

90 finger pricks and 70 toe pricks later, after an EEG, it was determined that my son suffered from BFNC, benign familial neonatal convulsions.  At the same time, we received a post-diagnosis for Nyssa, who it was now known to have had BINC, benign idiosyncratic neonatal convulsions, as the first in her siblings to have it.  Simply put, they had seizures that were caused by the lack of potassium ion connections in the right frontal cortex of the brain with proteins that weren't working right.  That part had not developed in a normal fashion.  It was a diagnosis that most neurologists didn't even know existed when Nyssa was a baby, so far had medicine advancement come in 27 months.

The next 3 days went by a little faster, as he was finally able to be awakened.  Once he was eating 70cc's of breast milk a day we were allowed to bring our miracle baby home.  Along with him came a heart-oxygen monitor and two daily doses of phenobarbital.  During this time, we learned that at least 86% of infants that die from SIDS probably die from this very underdeveloped portion of the brain.  It took 3 months for his brain to develop the new neurological pathways that told his body how to function.  After another EEG in January showed no more seizure activity, he was weaned off the medication.

When Gabriela's first seizure hit, we took her downtown immediately.  They ran all the tests on her, but since the seizures weren't as closely together as Benjamin's, they did not have to induce coma.  And, since we already had a history, she came home with the same medication 3 days later, after assessing it was the same problem.

My children had nothing to aspire to.  The part of their brain that inspired them to breathe was malfunctioned for a while.  It took time, patience, and vigilance to keep them alive until their brains kicked in and gave the natural commands.

For a while, I too had lost my aspirations, my dreams, and had fallen into the monotony of just being.  Take it from someone who's been there, that is existing, not living.  Sometimes we think that what inspires us is one thing, like the potassium ion connections in the brain.  But then something doesn't work the way we think it should, so we just stop; we freeze.  We have to wait until something new, something better, something hard-wired just for us kicks in and gives us an aspiration.  When that happens, we don't have to think about breathing, we just do, automatically.