After you lose a child, your world is filled with grief. For quite sometime after the loss of your child you have a hard time remembering the joys in their life. I guess its your minds way of playing tricks on you. You play over and over in your head the horrible memories of the events that led up to their passing and only the memories in their life that weren't so pleasant. I guess that is why they call it "Grief". I know my daughter's passing is quite recent and up until recently I thought I would never remember the good memories we have of our Gabby.
With each day, I am starting to remember a little bit more of the good days and wonderful memories that she left. I am going to use this post as a journal of those wonderful memories so when I have my bad days I can come back and read this post. This post will help me place those wonderful memories that seem to be lost, back in my head.
Of course, one of the best memories I have of Gabby is the day she was born, June 24, 2009. At that time we were not aware of her diagnosis. The fondest memory is when the doctor placed her in my arms and I held her for the very first time. I couldn't believe I was holding this beautiful baby girl and that something that beautiful was a part of me. I never realized you could love someone so much that you just met. Of course I loved her the whole time she was growing inside me, but when you hold that baby for the first time, the love you feel is unbelievable.
Another vivid memory that is coming back is the first time she was released from the hospital. She was transferred to Cincinnati Children's Hospital two days after she was born and on the third day is when we found out her diagnosis. She was around nine days old when we were first able to take her home to live with us. I remember placing her in her car seat and the nurse checking to ensure I had her in their properly. I remember the ride home as I kept looking back to check on her. She had her "red puppy wubbanub" in her mouth that she loved so much. I remember bringing her into the house and showing her the bassinet that we had for her in our room. She looked so tiny in her bassinet.
At thirteen days old, I remember going to check on Gabby and I was quite shocked when I noticed that she had rolled over onto her side. I had to call everyone and let them know what my baby had just done. I was so proud of her. Gabby loved to roll on her side when she was tiny and loved to sleep in an "s" shape. I would always reposition her because it always looked so uncomfortable, but Gabby would always go back to that "s" position she loved so much.
There were several funny moments in Gabby's life. One memory that I still laugh about was when she was just two weeks old. I was downstairs updating her Caring Bridge website and Gabby was upstairs with her Grandma and Grandpa. Grandma was feeding Gabby and went to burp her. Gabby burped so loud that I heard her downstairs and before I knew what it was, my heart stopped. I thought she had choked but then after hearing Grandma and Grandpa laugh I realized it was a burp. Gabby could put any man to shame when it came to burping. That girl could burp and many times her burps were so loud that they startled her and you couldn't help but laugh.
Then of course there was that smile. She smiled often and even slept with a smile on her face. She loved her big girl beds (crib) and when you would lay her in them, her smile would just take over her face. Her smiles would always make me smile.
Around 5 months old, Gabby began to stand with assistance. She loved to stand and would always stand on your lap. It wasn't long after Gabby was able to stand that she began walking up my chest. She would do it so perfectly. She would take one step in front of the other and would go until she couldn't go any further. If you held her on the ground she would take one step in front of the other and would walk on the ground.
Also, she made the funniest faces. She would always make this face where she would put her lip to the side and wrinkle up her face. We use to call her Elmer Fudd because she looked just like him with that bald head and that wrinkled up face Elmer Fudd always had. I believe they were twins separated at birth.
I remember her first cry like it was yesterday. She was nearly a month old and it was at night. Daddy and I were laying in bed watching television and she just began to cry. I panic because I have never heard this girl cry before and had no idea what to to do. So of course I did what came naturally and picked her up and fed her. This of course stopped the crying. After that, Gabby continued to cry, but only if she was in pain or hungry. Oh, she would cry as well if you got her out of bed and she wanted to sleep.
Not only did Gabby smile, but she laughed as well. That girl had a giggle that was just too adorable. She didn't giggle often but what made her giggle the most is hearing other babies cry. Not sure what she found so fascinating about other babies crying, but she thought it was funny. Sometimes I wonder what went through that girls head to make her do some of the things she did.
How can I forget the fondest memories of all. Those are the memories of how much she loved her daddy. She was definitely a daddy's girl and loved being around him. One of her favorite things to do with daddy was "patty cake". Daddy would do patty cake with her, and Gabby's mouth would open so wide and she would squeal with excitement every time he did it. She loved laying on her daddy's chest and would rub his facial hair continuously.
I can't believe that during this time of grief I was able to remember many of these things. I know there are plenty of other excellent memories that will come back to me in time. Right now I continue to grieve from our loss. You never know one minute from the next on how you are going to be. It is all so new to me, but I know that in time these excellent memories will come back to me and they will be memories that I will cherish forever.
Wednesday, December 15, 2010
Since You Been Gone
Since you been gone, life has not been the same.
Since you been gone, I cry now for my loss and not from the fear of losing you.
Since you been gone, I no longer wonder if this is going to be my last time holding you, my only wonder now is when I will hold you again.
Since you been gone, my heart aches for my pain, and no longer for the days you were in pain.
Since you been gone, I no longer have anxiety over how I would lose you, but now have anxiety from how I lost you.
Since you been gone, I know longer worry about everyday of your life, but now I worry about living without you everyday of my life.
There is only one thing that has stayed the same, since you been gone....that is my love for you will always go on <3
Since you been gone, I cry now for my loss and not from the fear of losing you.
Since you been gone, I no longer wonder if this is going to be my last time holding you, my only wonder now is when I will hold you again.
Since you been gone, my heart aches for my pain, and no longer for the days you were in pain.
Since you been gone, I no longer have anxiety over how I would lose you, but now have anxiety from how I lost you.
Since you been gone, I know longer worry about everyday of your life, but now I worry about living without you everyday of my life.
There is only one thing that has stayed the same, since you been gone....that is my love for you will always go on <3
Thursday, December 9, 2010
A Life of Unknowns, Becomes My Reality
As a mother, it is typical to worry about your child. When you are a mother to a special need child, especially one that has a grim prognosis, you find yourself always thinking the worst. I found myself from the day I learned of Gabby's diagnosis that I worried 24/7. The worrying became quite obsessive and even caused great anxiety and emotional problems for me. Most of these worries were instilled by my own thoughts, but they were amplified by the medical world. I remember as if it were yesterday, doctors telling me that we would be lucky if Gabby made it a few months and even luckier if she made it a year. At her first appointment with her specialist, I was told that if Gabby caught even the slightest cold, it would kill her. How am I supposed to act to a comment like that? My immediate reaction was breaking down in tears and swearing that I was going to do everything in my power to ensure Gabby's health.
I became quite obsessive when it came to Gabby's health. Hand sanitizer was kept in every room, only soap purchased was antibacterial, lysol wipes in large quantities, face masks always available, limited access of visitors and when they did visit I supervised them as they washed their hands to ensure they did it properly. Oh, and I can't forget the trips to the grocery store where I sanitized every portion of the cart and then washed my hands afterwards to the point where they were raw. At night, I had to coat my hands in vaseline because they were so raw and cracked from the 100 handwashes a day. When I arrived home from work, I would strip my clothes, shower and put on new clothes prior to handling Gabby. Lets just say that I was a little beyond obsessive. I remember being told by family that I was out of control and that I was being too overprotective. Ok, maybe that was true, but my only child had a severe disability and I wasn't taking a chance on her life.
During Gabby's life, I dealt with many emotional problems and a lot of anxiety. Hiding these emotional issues and anxiety was always a tough thing to accomplish. Every minute of every day I thought the worst. If I got a phone call from my mom while at work (she watched Gabby) I would immediately think the worst. If Gabby got a slight cold I would panic and think she was dying. I can go on and on about these horrible thoughts. They haunted me every waking minute of everyday and haunted me while I slept as well. Everyday I worried as if it was going to be my daughter's last.
On November 26, 2010 my worst fear came true. That was the night we lost Gabby, our precious daughter. I will not go into details as they are too horrible to relive. All I will say is that our daughter gave us great joy for 17 months and 2 days. I don't regret one minute of her life and I wouldn't change a minute of it. It is so funny how your mind continues to play tricks on you. Even though I know she is at peace you still worry about your deceased child. The grieving is all so new to me at this time and I am still trying to find ways to cope. I am going to continue Gabby's blog in her honor. She blessed me with so much and I am so grateful to say that I am Mom to Gabrielle Jane Bauer, a gifted child that accomplished so much in her short life.
I became quite obsessive when it came to Gabby's health. Hand sanitizer was kept in every room, only soap purchased was antibacterial, lysol wipes in large quantities, face masks always available, limited access of visitors and when they did visit I supervised them as they washed their hands to ensure they did it properly. Oh, and I can't forget the trips to the grocery store where I sanitized every portion of the cart and then washed my hands afterwards to the point where they were raw. At night, I had to coat my hands in vaseline because they were so raw and cracked from the 100 handwashes a day. When I arrived home from work, I would strip my clothes, shower and put on new clothes prior to handling Gabby. Lets just say that I was a little beyond obsessive. I remember being told by family that I was out of control and that I was being too overprotective. Ok, maybe that was true, but my only child had a severe disability and I wasn't taking a chance on her life.
During Gabby's life, I dealt with many emotional problems and a lot of anxiety. Hiding these emotional issues and anxiety was always a tough thing to accomplish. Every minute of every day I thought the worst. If I got a phone call from my mom while at work (she watched Gabby) I would immediately think the worst. If Gabby got a slight cold I would panic and think she was dying. I can go on and on about these horrible thoughts. They haunted me every waking minute of everyday and haunted me while I slept as well. Everyday I worried as if it was going to be my daughter's last.
On November 26, 2010 my worst fear came true. That was the night we lost Gabby, our precious daughter. I will not go into details as they are too horrible to relive. All I will say is that our daughter gave us great joy for 17 months and 2 days. I don't regret one minute of her life and I wouldn't change a minute of it. It is so funny how your mind continues to play tricks on you. Even though I know she is at peace you still worry about your deceased child. The grieving is all so new to me at this time and I am still trying to find ways to cope. I am going to continue Gabby's blog in her honor. She blessed me with so much and I am so grateful to say that I am Mom to Gabrielle Jane Bauer, a gifted child that accomplished so much in her short life.
Sunday, November 21, 2010
The Mask
She hides her face when she's not alone...She wears a mask, but it's not her own
I'ts everyone else she wants to be
Be just like them Supposedly free
Free from the troubles, the troubles of life
Free from sin and worries and strife
But when night time falls and she climbs into bed
Her mask falls apart and her head fills with dread
She screams and she cries but no one can hear
She wants them to know, know all her fear
Her fear of facing a world with no mask
Afraid they won't like; afraid they won't ask
So she waits for the day with hope in her heart
When she'll wear her own face and make her new start
~Melantha Abraham
I'ts everyone else she wants to be
Be just like them Supposedly free
Free from the troubles, the troubles of life
Free from sin and worries and strife
But when night time falls and she climbs into bed
Her mask falls apart and her head fills with dread
She screams and she cries but no one can hear
She wants them to know, know all her fear
Her fear of facing a world with no mask
Afraid they won't like; afraid they won't ask
So she waits for the day with hope in her heart
When she'll wear her own face and make her new start
~Melantha Abraham
Monday, November 8, 2010
A Quick Poem For My Little One
You are so strong in so many ways, you prove it to the world every single day. I'm so proud of the courage you show and I love you more than you'll ever know. A hero to me every single day, im so grateful to you in so many ways.
Love Mommy
Love Mommy
Sunday, November 7, 2010
A Life of Unknowns
I am mom to a special need child, diagnosed with a neurological condition, with a prognosis that is quite obscure. As a parent in general, we find ourselves asking if the decisions we're making are the right ones for our children. We all fight with the constant struggles that are involved in the daily care we give our children. My biggest challenge is dealing with the unknowns that are associated with such a grim prognosis.
As a child, I never imagined as an adult that I would have a child with a special need, or yet a child with a terminal diagnosis. I imagined myself having healthy children and figured my biggest challenges would be if I was raising them to be good human beings with high moral standards. In reality, I find myself struggling with the constant fears of nothing more than the unknowns.
In general we all deal with unknowns. None of us know what our future entails, I can't help but associate the unknowns with my daughters condition. Wondering if a cough she developed is going to put her life in jeopardy, or what new symptoms she might develop due to her condition. Is her brain stem....her only means of survival tiring and at risk for failing. Then, there is the biggest fear that never leaves my mind. The fear lurks as an evil shadow watching my every move, that is the fear of my daughter not being here tomorrow.
I find myself battling with these thoughts daily. They are fastballs pitched to me way to often and I just want to find a way to hit them out of the ballpark so they will never come back. Of course I find myself striking out too often. My goal is to become the winner, I'm going to learn how to hit a so-called homer better than any ball player I know. I know my goal is going to take a quite a bit of practice and I'm expecting to be hit by a lot of balls. Not sure who came up with the quote "No pain, No gain" but boy do I believe it to be true.
Another favorite quote of mine:
"Enjoy the little things, for one day you may look back and realize they were the big things." -- Robert Brault
As a child, I never imagined as an adult that I would have a child with a special need, or yet a child with a terminal diagnosis. I imagined myself having healthy children and figured my biggest challenges would be if I was raising them to be good human beings with high moral standards. In reality, I find myself struggling with the constant fears of nothing more than the unknowns.
In general we all deal with unknowns. None of us know what our future entails, I can't help but associate the unknowns with my daughters condition. Wondering if a cough she developed is going to put her life in jeopardy, or what new symptoms she might develop due to her condition. Is her brain stem....her only means of survival tiring and at risk for failing. Then, there is the biggest fear that never leaves my mind. The fear lurks as an evil shadow watching my every move, that is the fear of my daughter not being here tomorrow.
I find myself battling with these thoughts daily. They are fastballs pitched to me way to often and I just want to find a way to hit them out of the ballpark so they will never come back. Of course I find myself striking out too often. My goal is to become the winner, I'm going to learn how to hit a so-called homer better than any ball player I know. I know my goal is going to take a quite a bit of practice and I'm expecting to be hit by a lot of balls. Not sure who came up with the quote "No pain, No gain" but boy do I believe it to be true.
Another favorite quote of mine:
"Enjoy the little things, for one day you may look back and realize they were the big things." -- Robert Brault
Wednesday, October 27, 2010
The Laughter, Tears, and Joy of a Mom of a Special Need Child
As an 18 year old, I began working with adults who had special needs. It was a field I never imagined myself working in, but just happened to fall into to. For those of you who care for someone with special needs, you are aware of the extreme demands that are involved with taking care of them. I never imagined the hard work it was. Assisting them with everything we take advantage of such as bathing, clothing, toilieting, eating, walking, talking, doctors appointments, ensuring they are healthy and take their meds. The list goes on and on. Shortly after I began working with Special Needs people, I knew I had found my calling and wanted to do as much as I could for them.
In 1996, I began my college career as a Social Work student at the University of Cincinnati. My goal was to of course work with individuals with special needs. In 1998, I graduated with an Associates Degree in Social Science at the University of Cincinnati. That same year, I transferred to Northern Kentucky University where I would persue my education in Social Work. This was a very busy and stressful time for me as I worked full time taking care of individuals with special needs, interning part time at a nursing home, and keeping up with the duties of a full-time student. I did this for three years until I finally got my bachelor's degree in Social Work.
After graduating, I did just what my goal was and that was to further my career in the special needs field. I became a supervisor of a small company that provided supports to individuals with Developmental Disabilities. My duties were to ensure staffing and appropriate training for all staff to adequately and safely work with the individuals in their own home. Not only did I know I found my calling but I adored everyone I worked with. I especially fell in love with my clients.
People I spoke to always told me I had a special heart and that they could never take care of someone with extensive needs. One comment I hear a lot, "I never know how to act around someone like that". Well first of all, I don't really see people with Special Needs much different than you or I. They may need more help than others, but hey, don't we all at times. We all have our handicaps whether it be mentally, physically, or emotionally. As for how to act around someone with Special Needs, I always tell people "It's easy, just be yourself because unlike a lot of people in this world, one thing they don't do is judge you" I don't have to worry about what they are going to think if I don't have my makeup on or my hair done one day. Your loved because of the care and the love that you show towards them.
At the age of 32, I gave birth to my first child, a daughter named Gabrielle Jane. The ironic thing is that three days after she was born we found out she had a rare medical condition called Hydranecephaly. That's right, I gave birth to a daughter with special needs. I must admit it was a very emotional time for me and my family. I was very experienced when it came to caring for someone with extensive needs, but I never dreamed that I would one day have to care for my own child who has special needs.
After we found out our daughter's diagnosis, our life changed so drastically. We were told to never expect much out of our daughter, first of all because she would never make it to one and second of all....she would live the life of a vegetable. She would have no awareness, never know who we are, never hear nor see, and no consciousness. Although, we were told all this by the people we trusted the most (medical doctors), we wanted to take her home with us and to care for her as if she were a typical child. We did just that.
Gabby has been given so much love by so many, many who have never even had the oppurtunity of meeting her yet. She is stimulated daily and loves to play, laugh, and listen to mommy and daddy do silly talk. She loves her family and is very aware of who we are and her surroundings. We will continue to give Gabby all the love in the world and will continue to stimulate the 25% of brain matter she does have.
I must admit that being the parent of a Special Need child is not easy. It is amazing how you can laugh from joy and cry from sadness so many times in one day. I find myself laughing at the funny things my daughter does such as her laughing, making noises, playing with her toys, learning something new, and the numerous funny faces she makes. Then I find myself overwhelmed with sadness that kids younger than my daughter are doing things she should be doing such as walking, talking, running, crawling, eating solid foods, potty training, sucking their thumbs, and the fact that I can't chase my daughter around because she is getting into everything. Then I begin to be thankful for the fact that my daughter is still alive, and in the long run that is all that matters to me. I never realized the emotional roller coaster that never seems to end. The constant struggle with not only keeping your child healthy, but keeping yourself healthy as well. I am so grateful to have met a wonderful group of friends who know all too well what this roller coaster ride is all about. Although, I have wonderful family and friend support, there are just some people who seem to know exactly how you feel and the struggle everyday brings just to keep you sane. I'm going to end with one of my favorite quotes:
You've developed the strength of a draft horse while holding onto the delicacy of a daffodil ... you are the mother, advocate and protector of a child with a disability." -Lori Borgman
In 1996, I began my college career as a Social Work student at the University of Cincinnati. My goal was to of course work with individuals with special needs. In 1998, I graduated with an Associates Degree in Social Science at the University of Cincinnati. That same year, I transferred to Northern Kentucky University where I would persue my education in Social Work. This was a very busy and stressful time for me as I worked full time taking care of individuals with special needs, interning part time at a nursing home, and keeping up with the duties of a full-time student. I did this for three years until I finally got my bachelor's degree in Social Work.
After graduating, I did just what my goal was and that was to further my career in the special needs field. I became a supervisor of a small company that provided supports to individuals with Developmental Disabilities. My duties were to ensure staffing and appropriate training for all staff to adequately and safely work with the individuals in their own home. Not only did I know I found my calling but I adored everyone I worked with. I especially fell in love with my clients.
People I spoke to always told me I had a special heart and that they could never take care of someone with extensive needs. One comment I hear a lot, "I never know how to act around someone like that". Well first of all, I don't really see people with Special Needs much different than you or I. They may need more help than others, but hey, don't we all at times. We all have our handicaps whether it be mentally, physically, or emotionally. As for how to act around someone with Special Needs, I always tell people "It's easy, just be yourself because unlike a lot of people in this world, one thing they don't do is judge you" I don't have to worry about what they are going to think if I don't have my makeup on or my hair done one day. Your loved because of the care and the love that you show towards them.
At the age of 32, I gave birth to my first child, a daughter named Gabrielle Jane. The ironic thing is that three days after she was born we found out she had a rare medical condition called Hydranecephaly. That's right, I gave birth to a daughter with special needs. I must admit it was a very emotional time for me and my family. I was very experienced when it came to caring for someone with extensive needs, but I never dreamed that I would one day have to care for my own child who has special needs.
After we found out our daughter's diagnosis, our life changed so drastically. We were told to never expect much out of our daughter, first of all because she would never make it to one and second of all....she would live the life of a vegetable. She would have no awareness, never know who we are, never hear nor see, and no consciousness. Although, we were told all this by the people we trusted the most (medical doctors), we wanted to take her home with us and to care for her as if she were a typical child. We did just that.
Gabby has been given so much love by so many, many who have never even had the oppurtunity of meeting her yet. She is stimulated daily and loves to play, laugh, and listen to mommy and daddy do silly talk. She loves her family and is very aware of who we are and her surroundings. We will continue to give Gabby all the love in the world and will continue to stimulate the 25% of brain matter she does have.
I must admit that being the parent of a Special Need child is not easy. It is amazing how you can laugh from joy and cry from sadness so many times in one day. I find myself laughing at the funny things my daughter does such as her laughing, making noises, playing with her toys, learning something new, and the numerous funny faces she makes. Then I find myself overwhelmed with sadness that kids younger than my daughter are doing things she should be doing such as walking, talking, running, crawling, eating solid foods, potty training, sucking their thumbs, and the fact that I can't chase my daughter around because she is getting into everything. Then I begin to be thankful for the fact that my daughter is still alive, and in the long run that is all that matters to me. I never realized the emotional roller coaster that never seems to end. The constant struggle with not only keeping your child healthy, but keeping yourself healthy as well. I am so grateful to have met a wonderful group of friends who know all too well what this roller coaster ride is all about. Although, I have wonderful family and friend support, there are just some people who seem to know exactly how you feel and the struggle everyday brings just to keep you sane. I'm going to end with one of my favorite quotes:
You've developed the strength of a draft horse while holding onto the delicacy of a daffodil ... you are the mother, advocate and protector of a child with a disability." -Lori Borgman
We're Home!!!
Ok, so it has now been a week since our arrival home from the hospital. So far things have been going well. Gabby appears to be more alert after her surgery and is not sleeping as much. We are hoping that within six weeks, the shunt will have had long enough to drain the excess fluid that was causing the pressure. Perhaps Gabby will even become more alert and more active.
Gabby met her very first friend who has the same condition as her over the weekend. His name is Andrew and he lives with his loving family in another state. They travel to our area often so we are hoping for more visits. Her friend was trying so hard to get Gabby's attention, but she was just way too sleepy and didn't respond that much.
Gabby saw her specialist this week at Children's and it looks as if the valium she is on for spasms has caused all her muscle tone to go away. In one way it is good because tight muscles in kids causes serious issues with growth and development. If they have too much tone, then they are at risk for dislocations along with other numerous growth issues. The bad news is that the valium has done its job too well and she no longer has muscle tone in her tongue or other areas of her body. Due to losing the muscle tone in her tongue she is having difficulty eating and now has a feed tube in order to get her nutrition. She will be seeing a feeding specialist and an Occupation Therapist weekly to help try to strengthen her muscles.
I am just so grateful that we are back home and getting back into the groove of being at home. There's no place like home <3
Gabby met her very first friend who has the same condition as her over the weekend. His name is Andrew and he lives with his loving family in another state. They travel to our area often so we are hoping for more visits. Her friend was trying so hard to get Gabby's attention, but she was just way too sleepy and didn't respond that much.
Gabby saw her specialist this week at Children's and it looks as if the valium she is on for spasms has caused all her muscle tone to go away. In one way it is good because tight muscles in kids causes serious issues with growth and development. If they have too much tone, then they are at risk for dislocations along with other numerous growth issues. The bad news is that the valium has done its job too well and she no longer has muscle tone in her tongue or other areas of her body. Due to losing the muscle tone in her tongue she is having difficulty eating and now has a feed tube in order to get her nutrition. She will be seeing a feeding specialist and an Occupation Therapist weekly to help try to strengthen her muscles.
I am just so grateful that we are back home and getting back into the groove of being at home. There's no place like home <3
Tuesday, October 19, 2010
Almost Home!!!
Well after a very long eventful stay here at CCHMC, we are proud to say that it is about over. Plans for discharge are already in affect and it looks as if 10/20/2010 will be our date of discharge. I have been working with Home Health to get things ready for Gabby's arrival home. Today, mommy was trained on how to use a feed pump and this will allow Gabby to be fed continuously at night through her feed tube. Her night time feed will begin at 5 pm and will go until 7 am. She will be fed 45 ml (ounce and a half) every hour. During the day she will be fed by her feed tube twice and each time she will be given 6 ounces. I will still be able to try to feed Gabby by mouth and what she doesn't take by mouth will need to be given in her tube. We are hoping that the tube placement will be temporary, around two to three months. Gabby is able to still take foods by mouth, but she is refusing to eat. The dietician wants her to be a more routine eater and that is another reason for the feed tube. As many of you are aware, Gabby has always been the type to eat when she wants. She will eat great some days and then will go several days where she doesn't eat well. She has always gained weight but the dietician says she needs to have a more scheduled feeding habit. I am still quite confused with the fact that the dietician says she is too chunky, yet they have her on a higher calorie formula and a higher daily intake then usual. In my opinion, I think that would make her gain more weight.
It has now been 24 hours since Gabby's surgery and she is still worn out. Her doctor stated that we shouldn't be too concerned as she has been through a lot. We are hoping that when she gets home and back in her familiar environment that things will begin to improve with her alertness. I'm sure she will be excited to sleep in her own bed and back to her normal routine.
It has now been 24 hours since Gabby's surgery and she is still worn out. Her doctor stated that we shouldn't be too concerned as she has been through a lot. We are hoping that when she gets home and back in her familiar environment that things will begin to improve with her alertness. I'm sure she will be excited to sleep in her own bed and back to her normal routine.
Monday, October 18, 2010
Surgery Number Two!
The long awaited anticipation is finally over, Gabby was able to get her shunt surgery today. For those who follow me on facebook, you are aware of the many challenges Gabby had to face in order to get her shunt. We have been trying for two months to get her shunt but she had infection after infection after infection. These infections (Urinary Tract Infection) is basically what led us to our long hospital stay. I must admit that this long hospital stay has been very productive. We had many specialist see Gabby and we were able to get to the bottom of many things such as her infections.
In previous post, I mentioned that Gabby has Kidney Reflux stage 1 (very minor), but these contribute to her infections and can lead to more serious things like Kidney damage and function loss. Her daily dose of Bactrim will help prevent further infections.
As for Gabby's surgery, the main reason for this post, it went very well. Overall, the surgery lasted about an hour. The doctor stated that she had lots of pressure and he removed some of the fluid. She was taken back to the PACU (Post Anesthesia Care Unit) where she remained for another hour. She was closely monitored until her vitals were good enough for her to return to her room. Right now, she is resting comfortably in her hospital bed. We shall remain in the hospital for a few more days to monitor her. We will be so grateful for her to come home, and I will be grateful to be back home with my loving family.
In previous post, I mentioned that Gabby has Kidney Reflux stage 1 (very minor), but these contribute to her infections and can lead to more serious things like Kidney damage and function loss. Her daily dose of Bactrim will help prevent further infections.
As for Gabby's surgery, the main reason for this post, it went very well. Overall, the surgery lasted about an hour. The doctor stated that she had lots of pressure and he removed some of the fluid. She was taken back to the PACU (Post Anesthesia Care Unit) where she remained for another hour. She was closely monitored until her vitals were good enough for her to return to her room. Right now, she is resting comfortably in her hospital bed. We shall remain in the hospital for a few more days to monitor her. We will be so grateful for her to come home, and I will be grateful to be back home with my loving family.
Saturday, October 16, 2010
Consciousness in Children with Hydran
I remember when I was told my daughters diagnosis. We were taken to a separate room where the physcian told us in kind words that our daughter would be in a "vegetative state" and that she would never have any consciousness awareness. We took our daughter home expecting just that, we didn't know any different, we were not the medical professionals and who were we to doubt them. Jason and I knew that even if she did live a "vegetative state" that she was still our daughter and we would give her the love that she deserved. It wasn't long after our daughter came home that we knew she was far from living a so called "vegetative state". Our daughter would smile,respond to our voices, and even an occassional cry. As she got bigger, we began to see her personalilty. She's funny, anwry, and very lovable. She will laugh at silly voices or babies crying, she will smile when she hears familiar voices, she will play with toys, she cries when she is upset, hungry, or not feeling well. My daughter, along with many other children with her condition, live a life full of love and are consciously aware of their surroundings. We allow them to live life as if they do not have a disability. We never set limitations on our children and we allow them to show us what they are able to do. For all those parents who have a child living with a disability, never set limitations for your child. They will do what you allow them to do. If you set limitations on your child, then who knows what oppurtunities they will miss out on.
You've developed the strength of a draft horse while holding onto the delicacy of a daffodil ... you are the mother, advocate and protector of a child with a disability." -Lori Borgman
You've developed the strength of a draft horse while holding onto the delicacy of a daffodil ... you are the mother, advocate and protector of a child with a disability." -Lori Borgman
A New Hope
Hello Followers,
Well, I must admit that my last post was quite negative and for that I apologize. I can't even begin to tell you how much I have appreciated the great care that Gabby is getting while in this hospital. She is in one of the best hospitals in the world and I am so grateful. I will admit that my emotions do get the best of me at times when it comes to my daughter. I don't handle negativity too well and I sure don't handle people asking me how much I understand about my daugther's condition and her prognosis. I live everyday knowing quite well what my daughter's prognosis is. Everyday we live the reality that our daughter might not be here tomorrow and there is nothing worse then someone constantly putting in our face. We try our best to live day by day. I realize doctors have to distance themselves from patients and families, but I wish some would just have a little bit more empathy and compassion when talking about things.
I must admit that the Physcian I was quite upset with in my last post has done a complete 360. I don't know what caused the change, but he has been completely interested in learning about Gabby and her diagnosis. He is now educating his students about her condition and has even began researching info on his own. I feel as if I own him an apology in a way because he is unfamiliar with her diagnosis. Again, I just wish doctors can be more compassionate in the way they word things sometimes, and that is not directed towards medical professionals only, but to all society in general.
I have a new hope (hince the post title) that my daughter along with every other Hydran child will change the reality of this diagnosis. I hope that research will be done and there will be more education in regards to this condition. Hydranencephaly is not going away. More children are living longer with this condition and I will never quit advocating for the need of more education and research.
This post is dedicated to all those families who have a loved one with Hydranencephaly and to the wonderful staff at CCHMC, thank you for taking excellent care of my Gabby.
Well, I must admit that my last post was quite negative and for that I apologize. I can't even begin to tell you how much I have appreciated the great care that Gabby is getting while in this hospital. She is in one of the best hospitals in the world and I am so grateful. I will admit that my emotions do get the best of me at times when it comes to my daughter. I don't handle negativity too well and I sure don't handle people asking me how much I understand about my daugther's condition and her prognosis. I live everyday knowing quite well what my daughter's prognosis is. Everyday we live the reality that our daughter might not be here tomorrow and there is nothing worse then someone constantly putting in our face. We try our best to live day by day. I realize doctors have to distance themselves from patients and families, but I wish some would just have a little bit more empathy and compassion when talking about things.
I must admit that the Physcian I was quite upset with in my last post has done a complete 360. I don't know what caused the change, but he has been completely interested in learning about Gabby and her diagnosis. He is now educating his students about her condition and has even began researching info on his own. I feel as if I own him an apology in a way because he is unfamiliar with her diagnosis. Again, I just wish doctors can be more compassionate in the way they word things sometimes, and that is not directed towards medical professionals only, but to all society in general.
I have a new hope (hince the post title) that my daughter along with every other Hydran child will change the reality of this diagnosis. I hope that research will be done and there will be more education in regards to this condition. Hydranencephaly is not going away. More children are living longer with this condition and I will never quit advocating for the need of more education and research.
This post is dedicated to all those families who have a loved one with Hydranencephaly and to the wonderful staff at CCHMC, thank you for taking excellent care of my Gabby.
Wednesday, October 13, 2010
CCHMC Day 23, October 13, 2010
It is now day 23 in the hospital and I must say it has been a true experience. Gabby has been introduced to many new physcians. I met a doctor yesterday and I must say it is really scary that he is responsible for teaching our future doctors of the world. He came and met Gabby yesterday and was interested in her story as to what brought her to the hospital. Well to make a long story short, I filled him in on her spasms and how she had a 104 temp and was rushed to the ER and was treated for all kinds of things including seizures. He made a comment in regards to children needing to have a brain to have a seizure. Aproximately 75% of children with Hydranencephaly do in fact have seizures. They are more difficult to diagnose then cortical seizures due to the fact that EEG's aim more towards reading the cortex of the brain. In a child like Gabby, seizures occur in the brainstem and are usually more difficult to treat than cortical seizures. Its amazing, I really don't mind the fact that doctors don't understand much about Gabby's condition. What I do mind is when they make inconsiderate remarks about a disrorder they know nothing about. I wish doctors would just be more open to listening to the parents when it comes to their child. Learn by observing the child, don't always rely on those textbooks. Anyways, enough of the venting.
Now on with Gabby. She continues to have 20 cc's of fluid taken off every 24 hours and she responds well afterwards. As of right now, it looks as if all infections are clear. They have been adjusting her meds and her formula to better meet her needs. She continues to refuse to eat by mouth so we have to put her feeds in her tube. I have been doing most of the feedings. I try to offer her the bottle by mouth, but she is just not interested. We are hoping that this is temporary and that she will decide to take the bottle once she gets home. I do know that upon discharge they will release her home with a feed tube in place. The feed tube that is being used is the same type when she was newborn. It is called an N-G tube and is placed in your nose and goes down your throat into your stomach. These are not surgically placed as the feed tubes that go directly into the stomach.
Gabby has been more alert the past two days and I believe it has to do with the fluid being removed and her getting two good days of nutrition. We are looking forward to her getting her shunt and hope for her to be home soon.
Love to all and thanks for continuing to pray and support our little miss Gabby
Now on with Gabby. She continues to have 20 cc's of fluid taken off every 24 hours and she responds well afterwards. As of right now, it looks as if all infections are clear. They have been adjusting her meds and her formula to better meet her needs. She continues to refuse to eat by mouth so we have to put her feeds in her tube. I have been doing most of the feedings. I try to offer her the bottle by mouth, but she is just not interested. We are hoping that this is temporary and that she will decide to take the bottle once she gets home. I do know that upon discharge they will release her home with a feed tube in place. The feed tube that is being used is the same type when she was newborn. It is called an N-G tube and is placed in your nose and goes down your throat into your stomach. These are not surgically placed as the feed tubes that go directly into the stomach.
Gabby has been more alert the past two days and I believe it has to do with the fluid being removed and her getting two good days of nutrition. We are looking forward to her getting her shunt and hope for her to be home soon.
Love to all and thanks for continuing to pray and support our little miss Gabby
Tuesday, October 12, 2010
Saturday, October 9, 2010
CCHMC Hospital Stay
Well today is day 19 of me being in the hospital. I am really glad that they are taking such good care of me, but boy am I ready for my shunt surgery and ready to go home. Since I have been here they have done many test on me. I have had a cat scan wich has showed only minor differences from my first one. The most rescen one showed that I had a tear in my cotortum. This is the lining in the skull that is between the skull and brain. Having a tear there is very normal for children with my condition or also, Hydrocephalus (water on the brain). There is no treatment for it, but it shouldn't get any worse when I get my shunt. While I was here, they also had me see an Endocrinologist. The Endocrinologist ran all sorts of test on me to see what hormones I was lacking. Amazingly enough I wasn't lacking any of them. Also, I saw a Urologist here and I was diagnosed with having Kidney reflux (stage 1). Stage 1 is just a minor case and luckily it doesn't require any surgery. The Urologist placed me on a daily med called Bactrim and this will help prevent me from getting Urinary Tract Infections. At this point, I am not sure when I will be getting discharged. I am hoping that they will be able to do my surgery on Monday and I will be able to go hom on Tuesday or Wednesday. It has been a long few weeks and I cant wait to go home and sleep in my own bed.
Friday, October 1, 2010
My Very First Surgery
Hi Everyone,
It has been an eventful couple of weeks. On September 20, 2010 I was admitted to Cincinnati Children's Hospital. I was admitted to the hospital so I could get some IV antibiotics to clear me of a UTI infection I had. I needed to be free of my infection so I could get my shunt surgery to help relieve some of the extra fluid on my head. Well after five long days in the hospital they allowed me to go home. I was able to go home because they had put a picc line in that allows me to get my antibiotics at home. So on Friday September, 25, 2010 I was able to go back home with my family. things went well until 4 am on Saturday. I woke up mommy because she heard me having severe spasms in my bed. She got up like she usually does and gave me my Valium. Usually, my Valium works, but not this time. Mommy and Daddy got really scared because I also had a fever. Mommy called 911 and they were there within seconds. They had to give me Versed in the ambulance because they thought I was seizing and couldn't stop. By the time I got to the hospital I had a temp of 104, my heart was beating way to fast and I was in shock. They had to take me to the trauma unit where there were so many medical doctors working on me. I was scared and I know mommy and daddy was too. They got me in stable condtion and I was taken to a room in the ER where they would keep me until I was admitted. Those silly doctors in the ER put an IV in my head and it popped and my skin started filling up with saline. Daddy looked at me and he saw that my whole face was swollen. I looked so funny for almost two days until the swelling went down.
Well after I got admitted they ran all sorts of test on me. They thought that I had Meningitis, Encephalitis, or Sepsis because my white blood cell count was 35 and my high fever. By the next day I was doing much better. They weren't sure what was wrong with me but they said that if it was the three things that they suspected that I would not get better that quickly. The doctors just think that my body does strange things when I am under stress or not feeling too well.
It is now October 1, 2010 and I am still in the hospital. Today, I went in for my shunt surgery but when they had me back in OR they noticed I had a yeast infection on my neck. The doctor was too afraid to do the surgery do to risk of infection. Instead, he placed a resevoir inside my head so he can go in and drain fluid as necessary. He was able to take 20 cc's of fluid off and boy was that a relief. I am hoping to be back home with fmy family by Monday October 3, 2010. Thanks to all my family and friends who always pray for me. I love you all.
Gabby
It has been an eventful couple of weeks. On September 20, 2010 I was admitted to Cincinnati Children's Hospital. I was admitted to the hospital so I could get some IV antibiotics to clear me of a UTI infection I had. I needed to be free of my infection so I could get my shunt surgery to help relieve some of the extra fluid on my head. Well after five long days in the hospital they allowed me to go home. I was able to go home because they had put a picc line in that allows me to get my antibiotics at home. So on Friday September, 25, 2010 I was able to go back home with my family. things went well until 4 am on Saturday. I woke up mommy because she heard me having severe spasms in my bed. She got up like she usually does and gave me my Valium. Usually, my Valium works, but not this time. Mommy and Daddy got really scared because I also had a fever. Mommy called 911 and they were there within seconds. They had to give me Versed in the ambulance because they thought I was seizing and couldn't stop. By the time I got to the hospital I had a temp of 104, my heart was beating way to fast and I was in shock. They had to take me to the trauma unit where there were so many medical doctors working on me. I was scared and I know mommy and daddy was too. They got me in stable condtion and I was taken to a room in the ER where they would keep me until I was admitted. Those silly doctors in the ER put an IV in my head and it popped and my skin started filling up with saline. Daddy looked at me and he saw that my whole face was swollen. I looked so funny for almost two days until the swelling went down.
Well after I got admitted they ran all sorts of test on me. They thought that I had Meningitis, Encephalitis, or Sepsis because my white blood cell count was 35 and my high fever. By the next day I was doing much better. They weren't sure what was wrong with me but they said that if it was the three things that they suspected that I would not get better that quickly. The doctors just think that my body does strange things when I am under stress or not feeling too well.
It is now October 1, 2010 and I am still in the hospital. Today, I went in for my shunt surgery but when they had me back in OR they noticed I had a yeast infection on my neck. The doctor was too afraid to do the surgery do to risk of infection. Instead, he placed a resevoir inside my head so he can go in and drain fluid as necessary. He was able to take 20 cc's of fluid off and boy was that a relief. I am hoping to be back home with fmy family by Monday October 3, 2010. Thanks to all my family and friends who always pray for me. I love you all.
Gabby
Saturday, September 18, 2010
A Year Passes!
I'm trying to get your caught up with my current life. I know that so much has happened to me and that I have been through more than most my age. I am able to do a lot of things that other babies my age can do. I will laugh, cry, play, and give you all the love in the world. On June 24, 2010, I celebrated my one year birthday. My mommy and daddy were so excited to celebrate it with me. I had cake and some ice cream and got lots of presents. Overall, my health is good and I am a very happy baby. I love my life and my family. I will continue to update you on things as they happen. Right now I am waiting to have my first shunt put it. We are hoping that the shunt will help with some of the excess fluid in my head. Oh, by the way I really love it when people pray for me and my family. So keep those prayers coming.
BIGGER, BIGGER, and BIGGER
Well after my feed tube came out, I began eating very well with a bottle. Mommy enjoyed feeding me and I just kept eating and eating. I began growing and getting much bigger. All the cute clothes that I had quickly became too small and I had to get a new wardrobe. I loved getting new clothes and being spoiled. I had many doctor appointments with specialists to make sure that I was doing well. At first it was doom and gloom but when everyone saw how well I was and all the things I could do, it quickly changed. My specialist began being amazed by me and was just so happy at all the things I could do. Mommy was told by my doctor to keep track of all the wonderful things I was able to do. At thirteen days old I was already rolling onto my side. I just felt more comfortable on my side and so thats what I did. I played with mommy and daddy a lot. I really enjoy playing with Daddy the best. He is so funny and silly and makes me laugh. I also love the fur on his face and when he rubs his face against mine because it tickles. I love reaching for daddy's face and rubbing my hand against that furry stuff. My daddy thought it was great when I would rub his face. He would always say "aww, look at her grab my face". One day I really suprised my daddy when I pulled my face to his face and gave him a kiss. He loved it. My daddy is so special to me and I love him soooo much.
Welcome Home!!!
Well it was early July 2009 when I finally got the chance to make it home. My home was fabulous, I had a pretty bassinet and lots of clothes and toys. Mommy and I slept mainly in the living room because I had so much medical equiptment going. I had to be given lots of antibiotics and had to be given meds at all hours of the night. I was given my meds through an IV and of course I had to be fed every 2-3 hours as well. Boy did I hate my feed tube! There is nothing like getting your food through a tube through the nose. I allowed my mom to use the feed tube for a couple weeks, but I couldn't take it any longer so I ripped it out of my nose. My mom told me that if I ate well using my bottle then she wouldn't put the feed tube back in. I have now been without a feed tube for over a year, whoo hoo! Things were very busy at my home. I always had people coming to see me and I was always being held and kissed. I loved all the attention though.
As Time Goes By
To continue where we last left off, I was just diagnosed with Hydranencephaly. I remained at Children's Hospital for a week after I was born. Doctors didn't want me to go home right away because Mommy and daddy had to be prepared to take me home and to care for me. Well there was a lot of preparation needed. Mommy had to be trained on how to feed me because I was given an NJ feeding tube http://www.answers.com/topic/feeding-tube. Mommy was pretty scared of the feeding tube but I knew she could do it. The doctors had to get me set up with Hospice http://www.cincinnatichildrens.org/svc/alpha/s/hospice/default.htm. prior to me being discharged as well. I was released just a little after a week of my birth. Boy was I so excited to be going home and to start my wonderful life my with my mommy and daddy.
My Journey Begins
Hello,
My name is Gabrielle Jane Sink and I was born on June 24, 2009. I was born with a very rare neurological condition called Hydranencephaly (click link to learn more) http://en.wikipedia.org/wiki/Hydranencephaly. At first, no one was clear of my diagnosis. Doctors thought I was having seizures because I had uncontrollable body movements and I was unable to regulate my body temperature. My arm kept moving and I was having a hard time controlling it. I had several test done but know one could figure out what was wrong with me. The doctors at the hospital where I was born decided that a more experience hospital should evaluate me to see if they could figure out what was going on with me. I was transferred to Cincinnati Children's Hospital where they took excellent care of me. While I was there they did a cat scan and came to the conclusion that my brain never developed. I was living with only my brain stem. My mommy and daddy were taken to a private room where the doctor informed them of my diagnosis. Doctor stated that most kids with my condition die before the age of one and that made mommy and daddy very sad. I on the other hand new that I was a fighter and that I was going to show everyone what great strength and courage I had. This is where my journey begins.
My name is Gabrielle Jane Sink and I was born on June 24, 2009. I was born with a very rare neurological condition called Hydranencephaly (click link to learn more) http://en.wikipedia.org/wiki/Hydranencephaly. At first, no one was clear of my diagnosis. Doctors thought I was having seizures because I had uncontrollable body movements and I was unable to regulate my body temperature. My arm kept moving and I was having a hard time controlling it. I had several test done but know one could figure out what was wrong with me. The doctors at the hospital where I was born decided that a more experience hospital should evaluate me to see if they could figure out what was going on with me. I was transferred to Cincinnati Children's Hospital where they took excellent care of me. While I was there they did a cat scan and came to the conclusion that my brain never developed. I was living with only my brain stem. My mommy and daddy were taken to a private room where the doctor informed them of my diagnosis. Doctor stated that most kids with my condition die before the age of one and that made mommy and daddy very sad. I on the other hand new that I was a fighter and that I was going to show everyone what great strength and courage I had. This is where my journey begins.
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