During my pregnancy, I contemplated, and even created a blog template to document our child's journey from the moment she greeted us. As a pregnant mom, I was obviously a little bit more ambitious than realistic, as most anyone can agree, the first year is crazy (and I imagine all years after). I can still remember deleting the idealistic blog, realizing it would be highly unlikely that I would be able to keep up with the posts and the pictures and, more importantly, the witty commentary. Unlike my two sisters, I was not blessed with the gift of quick wit and the ability to capture my thoughts with pen and paper (or with a laptop for that matter). But a lot has happened over the past year and I have realized that I need to not only memorialize this journey, but also take this opportunity to share our hardships and celebrate our triumphs and milestones and in doing so, I am hoping to heal my heart along the way.
Our sweet Olivia was born an entire week late, and yet only weighed a mere 6 pounds and 4 ounces. She was the most beautiful baby, and I am certain I am not biased!
She also was kind enough to only cause me 2.5 hours of labor at the hospital and then arrived via c-section at 11:04 AM. After carrying our child for over 9 months, my husband was blessed with the ability to hold her before me, ain't life fair? Thankfully after the amazing Dr. B. stitched me back up (despite not listening to my pleas for a tummy tuck while she was already there), I was able to hold my baby girl. I could not believe my eyes, I was sure I was holding a doll instead. She was so perfect! And after 3 days in the hospital we finally took her home and we.were.terrified!
The next few months flew by in what seemed to be a blur of nursing, diapers, sleeping (her more than us), crying (me more than her on some occasions) and simply getting to know our daughter. I am not going to lie, it was hard, but it was also amazing and soon we came to understand her wants and needs with each sound that she made. We thought we had hit smooth sailing when she started sleeping through the night at 9 weeks. Could there be a better baby than our little Livi? Not a chance. We were in love and we were lucky to have such a great baby (and yes, she still sleeps like a little champ!).
Around the 4 month mark, I started to notice her right hand maintained a fist, while her left hand seemed to grasp at items and open more frequently. I consulted my handy 0-5 year development book from the pediatrician which explained that babies will typically start exploring with one hand and then the other. I closed the book and moved on to more exciting things like my child smiling and making adorable noises. Though, this happiness was short lived.
At just over 5 months Olivia still had not opened her right hand, and consistently kept her hand in a very tight fist. I called the pediatrician to set up an appointment to discuss this issue and a few other things that any mother might question (feeding, sleeping, playing etc...). When we saw the doctor, I was terrified to learn that he thought it might be serious enough to warrant a visit to Kluge, which has the best pediatric development specialists for miles and miles (people come from all over to go here and it is practically in our backyard). The word Kluge alone is enough to send tears into a mother's eyes. I could not imagine what could be wrong with my child when she looked so perfect to me. This certainly does not look like the face of a child with a problem, right?
Kluge, being the mecca that it is, is similiar to Fort Knox when you are trying to get in to have an appointment. After what seemed like eternity (2 months), we finally had our appointment with the specialist. I was certain they would just tell us she needed more practice, that she would grow out of this, or at the very least that they needed more time to determine a prognosis. I was wrong. Instead my husband and I were informed that Olivia had a form of Cerebral Palsy which affected the right side of her body, known as, "Hemi-Paresis Cerebral Palsy". At that moment, we had no other answers, all we had was a pamphlet of information on CP and a book called "My child has Cerebral Palsy", or something to that effect. How could this be possible? Olivia was our perfect angel. Had I done something to cause this while I was pregnant?
A MRI was scheduled to examine her brain function to see if we could further determine what could have caused the right side of Olivia's body to have a developmental delay. After watching the doctor put our 8 month old baby to sleep in a metal crib that resembled a cage, we followed her as they wheeled her down the hall to the large and very noisy MRI machine. After placing ear plugs in our ears, my husband and I watched helplessly as this huge machine attempted to determine what exactly was wrong with our baby girl. The results were likely what the doctor had expected, but I was not prepared for the explanation.
It seems Olivia had a stroke in utero, likely in the first or second trimester. The doctor was able to gather this conclusion based on the scaring that had already started forming from the damage caused by the stroke. This scaring ruled out a stroke occurring during labor/birth or anytime there after. My heart was broken. This result did not fix my child. It did not make her better. And while I did not personally do something to cause this, I cannot help but feel as though I could have done something to prevent this outcome. Why did this happen? The questions have been endless, and the only resolution I have obtained is in my sweet girl's smile. She is SO happy. She is actually SO happy it breaks my heart with my own happiness, sadness, pride, fear and joy for my amazing little daughter.
Happiness:
My happiness is overwhelming each day because I have this beautiful girl as my daughter. I know how lucky we are that the damage was not far worse. Olivia will walk one day, run one day, she will achieve many things, and for that I am so thankful and so happy. At the same time, sometimes I wish we could have been even more lucky and not had this happen at all.
Sadness:
Sometimes my sadness overtakes my emotions and I mourn for her to have ability to not have to work for each milestone. I mourn for her to have these milestones come naturally and without weekly physical therapy. Each day we work to strengthen her developmental delays with "structured" play time, where only my husband and I know that the focus is "tummy time" or "rolling over" for one session, but all Olivia knows is laughter and fun, and for that I am thankful.
Pride:
Each time a hard earned milestone is achieved my heart fills with pride for my courageous daughter. I can remember the first time she rolled over, albeit 3 months later than most children, it was the most exciting day and I was so proud of her and how far she has come.
Fear:
I fear for the future. The unknown is the most terrifying obstacle that I will have to overcome. Attempting to take one day at a time is one remedy, but what parent does not dream of their child's future?
Joy:
Each morning that I walk into her room and she looks up at me with that smile, it is pure joy. I would not trade anything for that moment or anything about our sweet little perfect Olivia. She is our princess, our "stink-bug", our "Livi Bug", she is our everything.
My hope is that through this blog I will be able to explain in more detail our journey and in time, document the steps we all took to achieve more than any of us had ever imagined. For now, we celebrate Olivia's milestones and keep working to get to the next one. She is our beautiful butterfly and one day she will fly.
Our sweet Olivia was born an entire week late, and yet only weighed a mere 6 pounds and 4 ounces. She was the most beautiful baby, and I am certain I am not biased!
She also was kind enough to only cause me 2.5 hours of labor at the hospital and then arrived via c-section at 11:04 AM. After carrying our child for over 9 months, my husband was blessed with the ability to hold her before me, ain't life fair? Thankfully after the amazing Dr. B. stitched me back up (despite not listening to my pleas for a tummy tuck while she was already there), I was able to hold my baby girl. I could not believe my eyes, I was sure I was holding a doll instead. She was so perfect! And after 3 days in the hospital we finally took her home and we.were.terrified!
The next few months flew by in what seemed to be a blur of nursing, diapers, sleeping (her more than us), crying (me more than her on some occasions) and simply getting to know our daughter. I am not going to lie, it was hard, but it was also amazing and soon we came to understand her wants and needs with each sound that she made. We thought we had hit smooth sailing when she started sleeping through the night at 9 weeks. Could there be a better baby than our little Livi? Not a chance. We were in love and we were lucky to have such a great baby (and yes, she still sleeps like a little champ!).
Around the 4 month mark, I started to notice her right hand maintained a fist, while her left hand seemed to grasp at items and open more frequently. I consulted my handy 0-5 year development book from the pediatrician which explained that babies will typically start exploring with one hand and then the other. I closed the book and moved on to more exciting things like my child smiling and making adorable noises. Though, this happiness was short lived.
At just over 5 months Olivia still had not opened her right hand, and consistently kept her hand in a very tight fist. I called the pediatrician to set up an appointment to discuss this issue and a few other things that any mother might question (feeding, sleeping, playing etc...). When we saw the doctor, I was terrified to learn that he thought it might be serious enough to warrant a visit to Kluge, which has the best pediatric development specialists for miles and miles (people come from all over to go here and it is practically in our backyard). The word Kluge alone is enough to send tears into a mother's eyes. I could not imagine what could be wrong with my child when she looked so perfect to me. This certainly does not look like the face of a child with a problem, right?
Kluge, being the mecca that it is, is similiar to Fort Knox when you are trying to get in to have an appointment. After what seemed like eternity (2 months), we finally had our appointment with the specialist. I was certain they would just tell us she needed more practice, that she would grow out of this, or at the very least that they needed more time to determine a prognosis. I was wrong. Instead my husband and I were informed that Olivia had a form of Cerebral Palsy which affected the right side of her body, known as, "Hemi-Paresis Cerebral Palsy". At that moment, we had no other answers, all we had was a pamphlet of information on CP and a book called "My child has Cerebral Palsy", or something to that effect. How could this be possible? Olivia was our perfect angel. Had I done something to cause this while I was pregnant?
A MRI was scheduled to examine her brain function to see if we could further determine what could have caused the right side of Olivia's body to have a developmental delay. After watching the doctor put our 8 month old baby to sleep in a metal crib that resembled a cage, we followed her as they wheeled her down the hall to the large and very noisy MRI machine. After placing ear plugs in our ears, my husband and I watched helplessly as this huge machine attempted to determine what exactly was wrong with our baby girl. The results were likely what the doctor had expected, but I was not prepared for the explanation.
It seems Olivia had a stroke in utero, likely in the first or second trimester. The doctor was able to gather this conclusion based on the scaring that had already started forming from the damage caused by the stroke. This scaring ruled out a stroke occurring during labor/birth or anytime there after. My heart was broken. This result did not fix my child. It did not make her better. And while I did not personally do something to cause this, I cannot help but feel as though I could have done something to prevent this outcome. Why did this happen? The questions have been endless, and the only resolution I have obtained is in my sweet girl's smile. She is SO happy. She is actually SO happy it breaks my heart with my own happiness, sadness, pride, fear and joy for my amazing little daughter.
Happiness:
My happiness is overwhelming each day because I have this beautiful girl as my daughter. I know how lucky we are that the damage was not far worse. Olivia will walk one day, run one day, she will achieve many things, and for that I am so thankful and so happy. At the same time, sometimes I wish we could have been even more lucky and not had this happen at all.
Sadness:
Sometimes my sadness overtakes my emotions and I mourn for her to have ability to not have to work for each milestone. I mourn for her to have these milestones come naturally and without weekly physical therapy. Each day we work to strengthen her developmental delays with "structured" play time, where only my husband and I know that the focus is "tummy time" or "rolling over" for one session, but all Olivia knows is laughter and fun, and for that I am thankful.
Pride:
Each time a hard earned milestone is achieved my heart fills with pride for my courageous daughter. I can remember the first time she rolled over, albeit 3 months later than most children, it was the most exciting day and I was so proud of her and how far she has come.
Fear:
I fear for the future. The unknown is the most terrifying obstacle that I will have to overcome. Attempting to take one day at a time is one remedy, but what parent does not dream of their child's future?
Joy:
Each morning that I walk into her room and she looks up at me with that smile, it is pure joy. I would not trade anything for that moment or anything about our sweet little perfect Olivia. She is our princess, our "stink-bug", our "Livi Bug", she is our everything.
My hope is that through this blog I will be able to explain in more detail our journey and in time, document the steps we all took to achieve more than any of us had ever imagined. For now, we celebrate Olivia's milestones and keep working to get to the next one. She is our beautiful butterfly and one day she will fly.
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