Parenting Redefined – 4 under 4, then Infantile Spasms

As my wife Rebecca walked through the door to my office unannounced, I knew big news was forthcoming.  We wanted to have more children, but with Tristan a month away from being 3 and Brandon around 6 months old, we were just starting to find our way again.  There before me was my beautiful wife not speaking and showing me the ultrasound picture, unmistakably showing 2 embryo sacks.  Holy $!^t! was my response, probably somewhat inappropriate looking back.  Yes, I was happy, elated even.  With the reality not yet absorbed, I was already thinking of the unique moments of them growing up together and all the fun times awaiting our family.  The months leading up to their birth were filled with anticipation and wonderment.  Once we learned the genders, our family appeared complete.  Rebecca really wanted a girl (and I did too) and was really looking forward to all those great Mommy-daughter experiences.  I was so happy for her as the boys and I, in a way, had started to overtake the house with sports, wrestling, fishing, and auto racing – most of which Rebecca has little genuine interest.

Her pregnancy went great and she carried those two little babies to almost full-term.  One day after dinner, Rebecca said “It’s time”.  Just like that, we left the house and arrived at Saddleback Hospital in Laguna Hills at around 6 pm.  By 8:45 pm, we were the parents of 2 more little babies.  Savanna had a little more trouble breathing than Austin did initially, but eventually scored 9/9 on the Apgard scale – same as Austin.  While accustomed to infants, this was surreal.  Rebecca and I had always tried to give each other space on the weekends by taking the kids to do something while the other one had the house or at least the time to do what they wanted (or needed in most cases).  I remember thinking, “How am I going to go anywhere with 4 kids, (3, 1, and 2 newborns)?” Up till now, the situation was manageable, but this was a game changer.  We came home from the hospital on a Friday, and I remember taking everyone to church on that Sunday with Rebecca’s Mom so Rebecca could get some rest.  Since then, outings with all four kids by myself while requiring some forethought, has become manageable.

Late 2011….

Rebecca was able to stay home on maternity leave and the twins were developing fast and normally.  (Looking back, it was a blessing because IS – Infantile Spasms – can easily be misdiagnosed initially.  Had the diagnosis been missed for some time, the result would be reducing the efficacy of the first treatment she received.)  After about 6 weeks, Rebecca started to say things like, “She is still so googly-eyed and he is not.”  I, like many, dismissed her statements thinking she is comparing them to the nth degree already.  Then she said Savanna was having these ‘episodes’ and she wanted me to witness one.  She said she was going to try to catch one on camera.  As we were discussing it that Wednesday night, Savanna experienced one of those episodes right in my arms.  At first I didn’t panic, but I remember not sleeping well that night, as something was clearly very wrong with her.  All of my stereotypical knowledge of Epilepsy and seizures was minimal.  That fact that I didn’t even know seizures occurred in infants indicated the level of my knowledge deficit in that area.  Thursday came and went, and Friday Rebecca took her to the pediatrician.  Savanna experienced an episode in the office that he witnessed.  Up until that moment, the pediatrician was more or less marginalizing Rebecca’s concerns and planned no investigative action.  After those moments though, Rebecca was on her the way to the Emergency Room at CHOC (Children’s Hospital of Orange County) with Savanna.  I meet her at the ER – Emergency Room –  straight from work and I will never forget the series of events that followed.

The next 8 hours was spent in the ER running tests looking for something that might be provoking the seizures.  The law enforcement officer hovering around us really made us feel like we were under the spotlight as the cause for her seizures (shaken baby syndrome).  Savanna was admitted to the hospital as an inpatient.  She had a CAT scan, an enormous amount of blood tests scanning for many types of infections and blood borne disease’s, a sophisticated lumbar puncture to test for a large panel of metabolic and genetic disorders, an MRI, and finally a video EEG.  After about 30 hours on the EEG, a pediatric epileptologist visited our room Sunday evening.  Infantile Spasms was already floating around in conversations, but she confirmed the diagnosis.  Because we had done a little research on epilepsy in children, the news was just crushing.  Even though we were in denial at some level, both of our lives changed in that instant.

Savanna had hypsarrhythmia, discontinuity, and no normal sleep patterns in her EEG.  The doctor’s words specifically: “You need to mourn the loss of your normal child.”  Our minds raced forward wondering about the future and the thought process swung from as simple as wondering how she would do in school to wondering if she could die from one of these seizures.  Looking back, honestly we didn’t know what to think.  It was overwhelming.  Savanna started on ACTH on December 19th.

At this point, Savanna turned 3 months old.


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