as a mother, there are days and events in life that you will always remember.. your first kiss, the moment you fell in love, your wedding day.. and for some of us, the diagnosis of your baby to be born with spina bifida. for the past ten months, i've amazed myself at all of the things i've "forgotten" about during our sb journey. i forgot about most of the bad things we endured during our nicu stay... oxygen? such a distant memory! i had almost tricked myself into forgetting that pesky date - the date of our dreaded anniversary.. one year ago yesterday, our journey began.
i never anticipated forgetting any of this. with something so monumental that is going to change the rest of your life, the date never stood out to me. i knew it was march. i knew it was toward the end of the month, but i actually had to "research" the date we found out. i had asked cindy to check the computers to see if i was marked out any particular days in the computer last year.. nothing. i came across justin's ultrasound pictures this week, and it's there that i saw the dates for our first visit with a upenn doctor. march 26, 2009. that's the date i will never forget (now that i actually know it).
i woke up that morning and i just knew it was going to be a bad day. it was cold. it was muggy. it was raining. i remember looking out of our bedroom window as i woke and not seeing the sun was such an indicator to me that i was not going to like the day's events. i braced myself for what was ahead. we left for our ultrasound. not one bit of sunlight the whole trip to west chester.
waiting rooms are always a pain. the few minutes we waited were an eternity. it's amazing how fear can change time. i swear, it felt like we were in that waiting room for days before the ultrasound tech called us back.
we get the procedure started... she does justin's 5th or 6th 2D anatomy scan. she prints a few pictures.. then says we need to "wait." so, i ask, "were you able to find what they couldn't?" meaning... the first anatomy scan they did, they had mentioned something wrong with his neck... whatever they said, i don't remember word for word, but it led me to believe that he didn't have a neck. things were missing (ie: cerebellum), frontal lobes weren't measuring correctly, etc. of course, "no," was her response. the tears started coming as she went to locate dr. wang, the first upenn doctor to diagnose justin. dr. wang came into our room to try and see if she had any better luck. and she did not. she told us justin had a chiari ii malformation. no big deal. i'd seen an episode of mystery diagnosis where a little boy had chiari. he walked, talked, lived a normal life. but i still cried. i knew we had a journey ahead. dr. wang scheduled me for an MRI at chop the next day.
and then we were sent to a room. that dreaded room with windows that shone no sunlight. the room where they gave us the "option" to terminate. i was blown away. i was 9 weeks from my due date... if i had an early labor, this baby had the potential to survive. i was insulted that they'd even given us the choice. they also suggested an amnio, but they didn't have time for it that day. so we left, and of course, as soon as we got home, they had called us back to the office because they were able to fit us in. so, we went back, had the amnio and came back home. the next day, we were off to chop. we were told the MRI would take about 30 minutes, and i was in there for more than two hours. we didn't get any results that day, so we had the spend the weekend full of wonder.
i returned to work on monday which was definitely in the top 10 longest days of my life. finally, around 11:00a, dr. wang had called with results. she asked if it was a "good time" to discuss results.. no. not really, but it won't be any better later. however, i did have her call back later that afternoon because it was a busy time at work. more waiting!
but, finally, 3:00 came and so did the tears. i never suspected spina bifida. i thought chiari was the diagnosis. i expected some balance and coordination problems. not the possibility of paralysis! but, justin was our destiny. we would embrace this journey and new life with open arms.
i will never forget the instances leading up to the 3-day diagnosis. it has changed our lives forever. despite that gloomy thursday when it all began, justin was born exactly 9 weeks later.
the sun was shining that day.
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