I realized the other day, in a conversation with a friend, that not everyone has followed Leo's changing, sometimes confusing and baffling, but always astounding development through out his life so far. And by development, I guess I mean his story; the heart of the matter, or hows, whys, whens of the story. So in summation, here is exactly, though briefly, what happened a year ago.
When Nika turned three, we decided that we missed having a baby around the house, and decided to do something about it. We found out about the new baby on Christmas 2009. It was one of the best Christmas presents ever. After a couple harrowing weeks of feeling like the dog's nappy chew toy, I started feeling better and life was blooming. Not so with the weather. For all my complaining about winter, the unpredictable snows actually saved us a lot of grief. I never made it to my 20 week ultrasound because of a storm, and then never got around to rescheduling it. The babe in my belly was happy, and so were we.
Spring turned to summer and we were all getting excited to meet the new little person who would share our lives. One day, on a routine checkup with my midwives, they decided to send me to get an ultrasound done. At this point I was 38 weeks, and though the heart beat didn't indicate a problem, they were not sure about the baby's position in my uterus anymore. Basically, when feeling my belly, they couldn't determine which end was up. I remember walking into that exam room without a single premonition, I was healthy and knew without a doubt that the little life inside me who was pounding on my ribs all day was strong as an ox.
That was my last coherent thought for a long time. Our world was turned upside down and destroyed in the next couple of hours. Or days. Weeks actually. At first we were given the diagnosis of massive congenital hydrocephalus, which then within a 24 hour period changed to terminal hydranencephaly. The difference between the two is simple. Hydrocephalus means water in the brain, hydranencephaly, means water replacing brain. Writing it out, it doesn't seem like much of a difference, but in reality, it is the difference between life and death. And we were given death. Hydran babies are not expected to live to their first birthdays. Since then I have found this to be untrue, but that's what it says in any medical definition. On Leo's fetal scan and then on a scan done 24 hrs after his birth, (8/23/2010) there was no sign of a functioning brain. Just waves of fluid. A drowning watery darkness where there should have been light. He wasn't the only one drowning. We have never gone through such a horrifying, suffocating, and helpless time. It was also very confusing. Trying to combine our emotions and instincts, with the dispassionate medical information was very difficult. Choices and plans were shrouded in ambiguity, and yet demanded our input. In the end, Justin and I sat in the sun-drenched field behind our house and decided that no matter what, despite what we were told about our son, that we would take him home and love him forever. Because he was born into this world alone, gasping, fighting for every breath, a freak of nature, and a medical anomaly. And yet, there was something about him, something that called out to you and reeled you in. And once you were in, you never wanted to leave. He stole our hearts, and we loved him desperately for it. Everyday that he lived, was a gift to all of us. A week after his birth he received a VP Shunt to start draining the masses of cerebral-spinal fluid that was collected in his head. Then a couple days after that, we were home. All of us.
And amazingly life went on. We slowly took up the reins again, and the crazily abnormal started to become normal. And Leo grew. He grew and smiled and laughed and become so full of personality and life that everyone around him slowly stopped believing in his terminal diagnosis. It just didn't seem possible that this little happy being so filled with life would just fade away in the next couple of months. That didn't happen. What did happen was he started having seizures. These were pretty scary, but in the scheme of things, he was just gonna go downhill eventually right? Well wrong. During a EEG to help determine seizure treatment, his attending neurologist saw plenty of normal brain activity where there should have been none. He called for another MRI and re-opened Leo's file. When the new MRI came in, he didn't waste anytime changing Leo's diagnosis. He was officially a living breathing miracle. And a freaking survivor of a terminal prognosis! Where before his MRI showed a barely functioning brain stem, the new MRI showed a fairly complete brain, with only a few abnormalities such as a missing corpus callosum and a mid-line cleft in his cortex. His shunt was doing a great job of keeping his hydrocephalus away, and letting those brain cells decompress. Although his brain abnormalities may indicate a propensity towards seizures, we are keeping those at bay (most of the time) with medication.
The docs were blown away when finally the medical data proved what we knew all along. That Leo was a fighter, and a miracle of love and prayer. They no longer put caps on his prognosis, and never ever try to predict his life to us again. I was right back then, when I felt him pounding and kicking, that he was going to live.
The summer of 2011 Leo underwent a major, massive, ginormous surgery to reconstruct his misshapen skull and drain the remainder of fluid from his brain. Justin and I often joke that it was his second birth. Though the procedure was petrifying, and intense, and he was in touch and go land for a while, the results were and are phenomenal! Before the surgery, he was at the development stage of a 5 month old. Within a month after his 6 weeks of healing he has been progressing in development at light speed. We have never seen anything like it! Every week he learns something new and there is no sign of him slowing down! Most night we go to sleep wondering about the crazy extremes that we have experienced with our little lion man. And knowing him, this was just the beginning.
When Nika turned three, we decided that we missed having a baby around the house, and decided to do something about it. We found out about the new baby on Christmas 2009. It was one of the best Christmas presents ever. After a couple harrowing weeks of feeling like the dog's nappy chew toy, I started feeling better and life was blooming. Not so with the weather. For all my complaining about winter, the unpredictable snows actually saved us a lot of grief. I never made it to my 20 week ultrasound because of a storm, and then never got around to rescheduling it. The babe in my belly was happy, and so were we.
Spring turned to summer and we were all getting excited to meet the new little person who would share our lives. One day, on a routine checkup with my midwives, they decided to send me to get an ultrasound done. At this point I was 38 weeks, and though the heart beat didn't indicate a problem, they were not sure about the baby's position in my uterus anymore. Basically, when feeling my belly, they couldn't determine which end was up. I remember walking into that exam room without a single premonition, I was healthy and knew without a doubt that the little life inside me who was pounding on my ribs all day was strong as an ox.
That was my last coherent thought for a long time. Our world was turned upside down and destroyed in the next couple of hours. Or days. Weeks actually. At first we were given the diagnosis of massive congenital hydrocephalus, which then within a 24 hour period changed to terminal hydranencephaly. The difference between the two is simple. Hydrocephalus means water in the brain, hydranencephaly, means water replacing brain. Writing it out, it doesn't seem like much of a difference, but in reality, it is the difference between life and death. And we were given death. Hydran babies are not expected to live to their first birthdays. Since then I have found this to be untrue, but that's what it says in any medical definition. On Leo's fetal scan and then on a scan done 24 hrs after his birth, (8/23/2010) there was no sign of a functioning brain. Just waves of fluid. A drowning watery darkness where there should have been light. He wasn't the only one drowning. We have never gone through such a horrifying, suffocating, and helpless time. It was also very confusing. Trying to combine our emotions and instincts, with the dispassionate medical information was very difficult. Choices and plans were shrouded in ambiguity, and yet demanded our input. In the end, Justin and I sat in the sun-drenched field behind our house and decided that no matter what, despite what we were told about our son, that we would take him home and love him forever. Because he was born into this world alone, gasping, fighting for every breath, a freak of nature, and a medical anomaly. And yet, there was something about him, something that called out to you and reeled you in. And once you were in, you never wanted to leave. He stole our hearts, and we loved him desperately for it. Everyday that he lived, was a gift to all of us. A week after his birth he received a VP Shunt to start draining the masses of cerebral-spinal fluid that was collected in his head. Then a couple days after that, we were home. All of us.
And amazingly life went on. We slowly took up the reins again, and the crazily abnormal started to become normal. And Leo grew. He grew and smiled and laughed and become so full of personality and life that everyone around him slowly stopped believing in his terminal diagnosis. It just didn't seem possible that this little happy being so filled with life would just fade away in the next couple of months. That didn't happen. What did happen was he started having seizures. These were pretty scary, but in the scheme of things, he was just gonna go downhill eventually right? Well wrong. During a EEG to help determine seizure treatment, his attending neurologist saw plenty of normal brain activity where there should have been none. He called for another MRI and re-opened Leo's file. When the new MRI came in, he didn't waste anytime changing Leo's diagnosis. He was officially a living breathing miracle. And a freaking survivor of a terminal prognosis! Where before his MRI showed a barely functioning brain stem, the new MRI showed a fairly complete brain, with only a few abnormalities such as a missing corpus callosum and a mid-line cleft in his cortex. His shunt was doing a great job of keeping his hydrocephalus away, and letting those brain cells decompress. Although his brain abnormalities may indicate a propensity towards seizures, we are keeping those at bay (most of the time) with medication.
The docs were blown away when finally the medical data proved what we knew all along. That Leo was a fighter, and a miracle of love and prayer. They no longer put caps on his prognosis, and never ever try to predict his life to us again. I was right back then, when I felt him pounding and kicking, that he was going to live.
The summer of 2011 Leo underwent a major, massive, ginormous surgery to reconstruct his misshapen skull and drain the remainder of fluid from his brain. Justin and I often joke that it was his second birth. Though the procedure was petrifying, and intense, and he was in touch and go land for a while, the results were and are phenomenal! Before the surgery, he was at the development stage of a 5 month old. Within a month after his 6 weeks of healing he has been progressing in development at light speed. We have never seen anything like it! Every week he learns something new and there is no sign of him slowing down! Most night we go to sleep wondering about the crazy extremes that we have experienced with our little lion man. And knowing him, this was just the beginning.
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| Leo a day old, very sick with hydrocephalus |
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| Leo at 14 months, driving all over the kitchen |
I'm a grumpy old woman but that second pic brings tears to my eyes - nice, joyful ones.
ReplyDeleteI just love him! He makes me cry and laugh all at the same time. We think of your family often. The Smalleys
ReplyDeleteAlthough we know every step of Leo's story by heart, but again we've been gasping and tearing up while reading your post. What a tremendous power of life! Glory to God for all things and for Him leading the hands of the doctors who assist in His miracles!
ReplyDeleteJust a love note to offset my totally academic comment of earlier this evening! I've been following your story with great love and admiration--and prayers for the next chapters in your story.
ReplyDeleteI am new to following Leo, I learned of him and his wonderful family from my daughter. He is so adorable and amazing. Living proof that "with God all things are possible."
ReplyDelete