Sofia Giovanna ~ Butterfly Wings
A Day to Remember
“We’re here to register Sofia for school!” These words spoke volumes within my heart as I practically screamed them, standing in the school office, so proudly holding our 3 year old little girl in our arms. The excitement was exuding from every pore of my being and I actually found myself in a series of joyful tiptoe bounces and clapping my hands. Yes, a display that would have humiliated my daughter had she been old enough to understand how inappropriately mommy was acting at her school with my little dance.
Then all of a sudden my throat began to tighten as I tried to hold back the tears that were welling up in my eyes. Tears of uncontainable joy and emotional release, realizing the profundity of my declaration, and that the culmination of the past 3 ½ years of our daughter’s journey had brought us to this moment in time. Perhaps an uneventful moment in most parents’ lives, registering their child for school, but for me it represented the true beginning of our daughter’s life, and the beginning of our life as a typical family, a life without restrictions, without isolation, and without fear. This was a day to remember.
“We’re here to register Sofia for school!” These words spoke volumes within my heart as I practically screamed them, standing in the school office, so proudly holding our 3 year old little girl in our arms. The excitement was exuding from every pore of my being and I actually found myself in a series of joyful tiptoe bounces and clapping my hands. Yes, a display that would have humiliated my daughter had she been old enough to understand how inappropriately mommy was acting at her school with my little dance.
Then all of a sudden my throat began to tighten as I tried to hold back the tears that were welling up in my eyes. Tears of uncontainable joy and emotional release, realizing the profundity of my declaration, and that the culmination of the past 3 ½ years of our daughter’s journey had brought us to this moment in time. Perhaps an uneventful moment in most parents’ lives, registering their child for school, but for me it represented the true beginning of our daughter’s life, and the beginning of our life as a typical family, a life without restrictions, without isolation, and without fear. This was a day to remember.
That day was just seven weeks after Sofia’s 3rd open-heart surgery to repair a Congenital Heart Defect (CHD) which we learned about while pregnant during our 20 week sonogram. The official diagnosis was complete atrioventricular canal defect (CAVC), basically she had a massive hole between all four chambers and was missing a valve. I remember the cardiologist’s words after Sofia’s very first echocardiogram while she was still in my belly, “If your child is going to have a heart defect, this is the one you want.” Somehow that didn’t comfort us, but he went on to explain it is because they can repair it with just one operation.
Well, her journey with CAVC did not unfold as the majority of other babies’ do. She unexpectedly went into heart failure at 2 weeks of age and spent 3 weeks in the hospital, during which time they performed surgery to insert a g-tube after losing the ability to eat. She was sent home on a feeding pump and 8 medications to be administered 15 times a day. Our baby gradually began to decline as heart failure worsened and finally had open-heart surgery when she was 5 months old. It was initially a complete repair, but she went back into heart failure when the stitches on her mitral valve ripped open 6 days later. An unsuccessful second open-heart surgery was performed immediately, and she remained in the hospital for almost 4 weeks, at which point she was sent home with a moderate leak in her valve. We were told we would need to wait until she got bigger before another attempt or until she started showing signs of heart failure. The leak gradually advanced to severe a year later, which eventually led to an enlarging heart and they were concerned it would not return to normal size after her valve was fixed. Since they had already tried twice to repair the valve and were unsuccessful, we were told the next operation would require replacing her leaking valve with an artificial valve which would mean a lifetime on blood thinners with constant risk of heart attacks, strokes, and brain bleeds. Putting a toddler on blood thinners was something I could not imagine, but I began to mentally and emotionally prepare myself for this next phase; another open-heart surgery and, in the words of her cardiologist, “trading one set of problems for another.”
Well, her journey with CAVC did not unfold as the majority of other babies’ do. She unexpectedly went into heart failure at 2 weeks of age and spent 3 weeks in the hospital, during which time they performed surgery to insert a g-tube after losing the ability to eat. She was sent home on a feeding pump and 8 medications to be administered 15 times a day. Our baby gradually began to decline as heart failure worsened and finally had open-heart surgery when she was 5 months old. It was initially a complete repair, but she went back into heart failure when the stitches on her mitral valve ripped open 6 days later. An unsuccessful second open-heart surgery was performed immediately, and she remained in the hospital for almost 4 weeks, at which point she was sent home with a moderate leak in her valve. We were told we would need to wait until she got bigger before another attempt or until she started showing signs of heart failure. The leak gradually advanced to severe a year later, which eventually led to an enlarging heart and they were concerned it would not return to normal size after her valve was fixed. Since they had already tried twice to repair the valve and were unsuccessful, we were told the next operation would require replacing her leaking valve with an artificial valve which would mean a lifetime on blood thinners with constant risk of heart attacks, strokes, and brain bleeds. Putting a toddler on blood thinners was something I could not imagine, but I began to mentally and emotionally prepare myself for this next phase; another open-heart surgery and, in the words of her cardiologist, “trading one set of problems for another.”
So on August 12, 2010, four hours into surgery, we were anxiously sitting in the UMC Pediatric Intensive Care Unit waiting room when my cell phone rang at 11:16am. It was the operating room. I heard a voice say, “They repaired her heart.” Then there was silence. That’s all they said. I replied, “So they repaired it with the artificial valve.” I heard the voice say again, “No, they repaired her heart.” I just couldn’t understand what this meant. After questioning again, they explained the valve was not needed. They were able to just stitch her own valve back together using her own tissue. “What?!?” I just could not process it. This was not offered to us as an option, at all in our discussions. I just kept picturing that mechanical valve still sitting there on the tray next to my daughter as she lay there on the operating table with her chest closed and a repaired heart. I was stunned. I got off the phone and just stared at my husband, and I kept saying over and over again, “They repaired her heart… with her own tissue.” I remember having a profound feeling of “I don’t know how to live that life.” I was not emotionally prepared to live a life without medication, without fear of major medical issues, without shielding my daughter from people and germs constantly. It was all we had ever known, this had become our life. But at that moment, we started learning how to live that other life.
So as soon as Sofia was officially cleared from her recovery period, we were in that office registering her for school. A few days later, my husband and I found ourselves sitting in the back of our daughter’s classroom on her first day, watching her interact with the world without restrictions for the first time ever. We watched as she experienced a life of freedom playing with her new friends, squealing with excitement, and spreading her wings. It was as if she emerged from her cocoon and was learning how to fly. And in that classroom, a more beautiful sight I have never seen.
Sweet Music
This newly mended heart seemed to be a miracle in our daughter’s life, and we knew it would allow so much energy for running longer, dancing harder, screaming louder, and just enjoying life to the fullest. What we did not realize was that her broken heart had been profoundly affecting her speech development. Up until surgery she was only able to babble, mostly with vowel sounds and not yet really using a lot of consonants. She was lacking the fine motor skills necessary to make her mouth form the words to communicate verbally, but with the help of her speech therapist and the wonderful Signing Time DVDs, we started teaching her American Sign Language on her first birthday. By the time she was 3 ½ years old, she knew more than 650 signs as well as the alphabet, and was even throwing together 5-word sentences. Surprisingly, after she recovered from surgery, her little mouth started to do amazing things. Sofia was actually trying to form words with her mouth! She now had more energy available for her brain to start figuring it out and more muscle control since her heart was no longer pounding so hard and fast in her chest. Eventually she was able to repeat a few words with great clarity after we said them. She first mastered “GO”, then “UP”. Then I heard the most beautiful sound echo from my little girl’s precious mouth…. “MAMA!” …and my heart just melted. Then, just this past Saturday (three months after recovery from surgery), when I asked her if she was hungry, I heard a tiny soft voice from behind me, “YAH!” My head snapped around and I blurted, “What?!” She repeated so confidently with a glowing smile on her face, “YAH!” Oh the pride my heart felt to hear the sweet music of my little girl’s voice actually responding to my question. I started jumping and screaming with unbelievable pure joy of that beautiful moment, a moment we so long anticipated. Our little butterfly’s wings have already begun lifting her to new heights as her sweet voice now takes flight.
Sweet Music
This newly mended heart seemed to be a miracle in our daughter’s life, and we knew it would allow so much energy for running longer, dancing harder, screaming louder, and just enjoying life to the fullest. What we did not realize was that her broken heart had been profoundly affecting her speech development. Up until surgery she was only able to babble, mostly with vowel sounds and not yet really using a lot of consonants. She was lacking the fine motor skills necessary to make her mouth form the words to communicate verbally, but with the help of her speech therapist and the wonderful Signing Time DVDs, we started teaching her American Sign Language on her first birthday. By the time she was 3 ½ years old, she knew more than 650 signs as well as the alphabet, and was even throwing together 5-word sentences. Surprisingly, after she recovered from surgery, her little mouth started to do amazing things. Sofia was actually trying to form words with her mouth! She now had more energy available for her brain to start figuring it out and more muscle control since her heart was no longer pounding so hard and fast in her chest. Eventually she was able to repeat a few words with great clarity after we said them. She first mastered “GO”, then “UP”. Then I heard the most beautiful sound echo from my little girl’s precious mouth…. “MAMA!” …and my heart just melted. Then, just this past Saturday (three months after recovery from surgery), when I asked her if she was hungry, I heard a tiny soft voice from behind me, “YAH!” My head snapped around and I blurted, “What?!” She repeated so confidently with a glowing smile on her face, “YAH!” Oh the pride my heart felt to hear the sweet music of my little girl’s voice actually responding to my question. I started jumping and screaming with unbelievable pure joy of that beautiful moment, a moment we so long anticipated. Our little butterfly’s wings have already begun lifting her to new heights as her sweet voice now takes flight.
Watch Out World… Here Comes Sofia
With so many changes and moments to celebrate just in the past five months with a repaired heart, I can only imagine what this new year has to bring for our little girl. What I do know is that after four years, we will finally be able to show Sofia the world now that there are no restrictions on her health. There will be many travel adventures coming soon, beginning with her first airplane excursion this summer as we bring her back east to introduce her to friends and family members that have been so vital with their support over the past four years, yet have never even met Sofia. The world is wide open now and we can’t wait for Sofia to show it to us through the wonder and awe of a child’s eyes.
As my husband and I look ahead to a brand new life with our amazing little girl, we realize the future is so closely intertwined with all the memories of the past, memories of people who have given us the support and the tools we needed to be the best parents for Sofia and help her find her way, and watch her shine, in her own time. And it all began with Kathy Getman and The Down Syndrome Connection when I was six months pregnant, the day Dennis and I walked into Peter Piper Pizza. It was January 2007, and what a daze we were in during that time of our lives when we just found out the baby that I loved so dearly, still growing inside my belly, had been given an extra chromosome. I remember taking Dennis' hand as we walked towards our car to drive to the pizza party to meet you all, grasping it and knowing we were about to take the first step toward facing our unknown future. I just held on tight, took a deep breath and kept putting one foot in front of the other.
With so many changes and moments to celebrate just in the past five months with a repaired heart, I can only imagine what this new year has to bring for our little girl. What I do know is that after four years, we will finally be able to show Sofia the world now that there are no restrictions on her health. There will be many travel adventures coming soon, beginning with her first airplane excursion this summer as we bring her back east to introduce her to friends and family members that have been so vital with their support over the past four years, yet have never even met Sofia. The world is wide open now and we can’t wait for Sofia to show it to us through the wonder and awe of a child’s eyes.
As my husband and I look ahead to a brand new life with our amazing little girl, we realize the future is so closely intertwined with all the memories of the past, memories of people who have given us the support and the tools we needed to be the best parents for Sofia and help her find her way, and watch her shine, in her own time. And it all began with Kathy Getman and The Down Syndrome Connection when I was six months pregnant, the day Dennis and I walked into Peter Piper Pizza. It was January 2007, and what a daze we were in during that time of our lives when we just found out the baby that I loved so dearly, still growing inside my belly, had been given an extra chromosome. I remember taking Dennis' hand as we walked towards our car to drive to the pizza party to meet you all, grasping it and knowing we were about to take the first step toward facing our unknown future. I just held on tight, took a deep breath and kept putting one foot in front of the other.
So many wonderful new friends have been brought into our lives and we treasure them dearly. So please remember that even though the DSC get-togethers might seem on the surface to be just fun social events, they are truly so much more to many, especially to those new parents entering unfamiliar territory. You are changing lives, changing attitudes, and changing perceptions. It's been a beautifully crazy, terrifying, glorious, awe-inspiring journey, and we have been so very blessed. We have the most amazing little girl, and I wouldn't change her for the world!!!!
~ Sofia’s proud parents ~ Christina & Dennis ~ (1/2011)
~ Sofia’s proud parents ~ Christina & Dennis ~ (1/2011)
