Grow, Vaida, Grow! Vaida's Funeral
Donazione protetta
Any little bit will help, and we would be truly thankful during this hard time.
Vaida Paige Scott was born in Evansville, Indiana at 3 months early, on April 16th, 2015, by emergency C-Section. The little miss weighed 1 pound, 9 ounces, and was 14 inches long. She was welcomed into the world by parents Chris and Felicia, and big sister, Azlynn Kay.
When Vaida was 5 days old, St. Mary’s NICU found Intraventricular Hemorrhaging, bilateral grade 4. This means that there is bleeding in both fluid filled areas (ventricles) inside the brain and the blood leaked into the brain tissue on both sides. Grade 4 bleeds almost always results in brain damages. Now, we can see that the areas where the blood dried up and killed portions of her brain caused cerebral palsy on her right side. Only time will tell to what extent. She will also be prone to seizures.
Vaida had blood work done on May 19th because she was looking extremely pale. She was 4 weeks old. Her red blood cell level was at 30,000 (it's supposed to be at about 150,000) and her white blood cell level (infection fighting cells) was at 50,000 (it's supposed to be below 30,000). They also found some unusual blood cells called “blasts.” The doctors thought there was an abscess in either her abdomen or her brain. They did blood work, took urine samples, and did a lumbar puncture, and everything came back negative. They then did ultrasounds of her abdomen and head, and a CT scan of her abdomen that were all clear. Because nothing was being found, and Vaida didn’t seem to get any better, the decision to transfer her to a level 4 NICU was made, and she was moved to St. Louis Children’s Hospital. When Vaida arrived she had blood taken to be tested once a day, and she had several blood transfusions.
As previously mentioned, she had what they call "blast cells" and these usually indicate cancer. For the first 2 weeks in St. Louis, Vaida underwent several tests ruling out certain kinds of leukemia, viruses, etc. and nothing came back positive. Then they had to start looking at the rare possibilities..
When Vaida was 6 weeks old (34 weeks gestation, 6 weeks before she was supposed to be born) and less than 3lbs, she became the youngest and smallest baby to have ever been diagnosed with the rare childhood cancer called Juvenile Myelomonocytic Leukemia (JMML). JMML only accounts for 1% of all childhood cancers. With this diagnosis, the doctor told us that Vaida would likely pass within her first year. We refuse to believe that. Vaida immediately had her spleen removed because it was trapping important blood cells. Because of that, she will be on penicillin for the rest of her life. She also started an everyday oral dose of chemotherapy. She was on constant oral chemo from 6 weeks old until she was 10 months old. When her white blood cell level got above 100,000 she got a 3 day course of IV chemo.
Her white blood cells got over 200,000 at one point and Vaida had to go through the 3 day course of IV chemo. During that course, she caught a strand of rhinovirus, which is what we refer to as a common cold. Because her immune system was severely compromised after the chemotherapy, this "cold" almost took her from us. On July 18th she went into respiratory distress, her right lung collapsed, and she had to be intubated (a tube was placed for a machine to breathe for her). At one point, she clamped down, preventing the machine from breathing for her. It took a team of doctors and nurses doing chest compressions and using an epi pen to keep her with us. It was a very hard time for us, but like the amazing fighter she is, she overcame all of it!
Vaida went home from the NICU on her 6 month birthday! She spent 4 months at home with very little excitement and lots of relaxation! She was admitted again on February 28th, 2016 for her bone marrow transplant. She received her new marrow on March 8th.
Vaida became septic shortly after transplant and was moved to the PICU (pediatric intensive care unit) on the 12th. On the 16th (her 11month birthday) a procedure was done to place a picco catheter. This procedure damaged her femoral arteries and prevented blood circulation in her legs.
On April 8th, 2016, 8 days before her first birthday, Vaida had her left leg amputated below the knee and her right leg amputated mid-thigh.
Vaida made a quick recovery and got adorable pink leopard print prosthetics. She only got to wear them a few times, but man she loved them! Standing in her stander was getting better.
Vaida learned some words, and rolled all over the living room. Perfect baby.
Vaida was home for 8 months. 8 of the most fantastic months that held the best times I will ever have in my life.
Vaida got sick and we took her to hospital twice.
After several seizures went undetected at the first hospital, and several more occurring upon her arrival to Children's, Vaida's brain hemorrhaged and there was nothing left to do.
Vaida passed away peacefully in Mommy's arms with Daddy holding us at 11:45 am today. This world did not deserve her beauty, and the most beautiful creatures must be in the most beautiful places. She is running on her own two feet now and she will never, ever be sick or feel pain ever again.
My whole life revolved around Vaida. I don't know how to go home without her. After she passed, her Daddy and I got to give her a bath and get her dressed. I slept with my nose against her face and her fingers wrapped around mine last night. I held her close and loved her fiercely.
Vaida was the most amazing human I have ever met. And she is by far the most loved little girl. She fought for a really long time and she did so awesome. I can't even express how proud I am and how I know so many others are proud, too.
Vaida touched so many lives. We have countless messages telling us that the strength V was showing and and how hard she fought gave them the determination to fight their own battles. I hope that never ends. I hope her journey continues to inspire people and brighten lives because my baby was a STAR and she shined brighter than any I've seen before.
A celebration of life is absolutely necessary. If ever there was a person who deserves to be celebrated, it's my sweet Vaida. We will announce visitation and funeral details as soon as we figure them out. We want anyone who followed her story and loved her and believed in her to come she her because you all meant something to her. Your love and prayers were felt and used to their fullest extent, and Vaida utilized that time and time again to keep fighting. She kicked ass for a long time. But her little body just couldn't do it anymore. And that's okay. She's okay now. I will always love her and I will never forget her beautiful smile, her laugh, her ticklish spots, the way she pulled her shirts over her paci and grabbed at her hair when she was sleepy, how she liked to shake her finger back and forth on her lips and wave and high five, how she just started giving kisses and using a bottle, and how not having her legs didn't stop her for a second and she would roll around like crazy to get what she wanted. She was seriously the sweetest, happiest, and most inspiring little girl, and Chris and I are the luckiest people in the world for getting to be her parents. The best thing that I could have ever asked for was being her mommy and loving her with everything in for every second, and I will never stop.
Thank you all for your wonderful and kind support. We are still shocked and confused, as are her doctors, but we have to move forward and prepare to celebrate her. We need help with funeral costs, and the life flight. So if anyone feels moved in your heart to help us, we are extending her gofundme page and ask that you please donate. We want every aspect of this to be perfect for our little girl who truly changed the world.
Any little bit will help, and we would be truly thankful during this hard time.
https://facebook.com/profile.php?id=811627235583116
Vaida Paige Scott was born in Evansville, Indiana at 3 months early, on April 16th, 2015, by emergency C-Section. The little miss weighed 1 pound, 9 ounces, and was 14 inches long. She was welcomed into the world by parents Chris and Felicia, and big sister, Azlynn Kay.
When Vaida was 5 days old, St. Mary’s NICU found Intraventricular Hemorrhaging, bilateral grade 4. This means that there is bleeding in both fluid filled areas (ventricles) inside the brain and the blood leaked into the brain tissue on both sides. Grade 4 bleeds almost always results in brain damages. Now, we can see that the areas where the blood dried up and killed portions of her brain caused cerebral palsy on her right side. Only time will tell to what extent. She will also be prone to seizures.
Vaida had blood work done on May 19th because she was looking extremely pale. She was 4 weeks old. Her red blood cell level was at 30,000 (it's supposed to be at about 150,000) and her white blood cell level (infection fighting cells) was at 50,000 (it's supposed to be below 30,000). They also found some unusual blood cells called “blasts.” The doctors thought there was an abscess in either her abdomen or her brain. They did blood work, took urine samples, and did a lumbar puncture, and everything came back negative. They then did ultrasounds of her abdomen and head, and a CT scan of her abdomen that were all clear. Because nothing was being found, and Vaida didn’t seem to get any better, the decision to transfer her to a level 4 NICU was made, and she was moved to St. Louis Children’s Hospital. When Vaida arrived she had blood taken to be tested once a day, and she had several blood transfusions.
As previously mentioned, she had what they call "blast cells" and these usually indicate cancer. For the first 2 weeks in St. Louis, Vaida underwent several tests ruling out certain kinds of leukemia, viruses, etc. and nothing came back positive. Then they had to start looking at the rare possibilities..
When Vaida was 6 weeks old (34 weeks gestation, 6 weeks before she was supposed to be born) and less than 3lbs, she became the youngest and smallest baby to have ever been diagnosed with the rare childhood cancer called Juvenile Myelomonocytic Leukemia (JMML). JMML only accounts for 1% of all childhood cancers. With this diagnosis, the doctor told us that Vaida would likely pass within her first year. We refuse to believe that. Vaida immediately had her spleen removed because it was trapping important blood cells. Because of that, she will be on penicillin for the rest of her life. She also started an everyday oral dose of chemotherapy. She was on constant oral chemo from 6 weeks old until she was 10 months old. When her white blood cell level got above 100,000 she got a 3 day course of IV chemo.
Her white blood cells got over 200,000 at one point and Vaida had to go through the 3 day course of IV chemo. During that course, she caught a strand of rhinovirus, which is what we refer to as a common cold. Because her immune system was severely compromised after the chemotherapy, this "cold" almost took her from us. On July 18th she went into respiratory distress, her right lung collapsed, and she had to be intubated (a tube was placed for a machine to breathe for her). At one point, she clamped down, preventing the machine from breathing for her. It took a team of doctors and nurses doing chest compressions and using an epi pen to keep her with us. It was a very hard time for us, but like the amazing fighter she is, she overcame all of it!
Vaida went home from the NICU on her 6 month birthday! She spent 4 months at home with very little excitement and lots of relaxation! She was admitted again on February 28th, 2016 for her bone marrow transplant. She received her new marrow on March 8th.
Vaida became septic shortly after transplant and was moved to the PICU (pediatric intensive care unit) on the 12th. On the 16th (her 11month birthday) a procedure was done to place a picco catheter. This procedure damaged her femoral arteries and prevented blood circulation in her legs.
On April 8th, 2016, 8 days before her first birthday, Vaida had her left leg amputated below the knee and her right leg amputated mid-thigh.
Vaida made a quick recovery and got adorable pink leopard print prosthetics. She only got to wear them a few times, but man she loved them! Standing in her stander was getting better.
Vaida learned some words, and rolled all over the living room. Perfect baby.
Vaida was home for 8 months. 8 of the most fantastic months that held the best times I will ever have in my life.
Vaida got sick and we took her to hospital twice.
After several seizures went undetected at the first hospital, and several more occurring upon her arrival to Children's, Vaida's brain hemorrhaged and there was nothing left to do.
Vaida passed away peacefully in Mommy's arms with Daddy holding us at 11:45 am today. This world did not deserve her beauty, and the most beautiful creatures must be in the most beautiful places. She is running on her own two feet now and she will never, ever be sick or feel pain ever again.
My whole life revolved around Vaida. I don't know how to go home without her. After she passed, her Daddy and I got to give her a bath and get her dressed. I slept with my nose against her face and her fingers wrapped around mine last night. I held her close and loved her fiercely.
Vaida was the most amazing human I have ever met. And she is by far the most loved little girl. She fought for a really long time and she did so awesome. I can't even express how proud I am and how I know so many others are proud, too.
Vaida touched so many lives. We have countless messages telling us that the strength V was showing and and how hard she fought gave them the determination to fight their own battles. I hope that never ends. I hope her journey continues to inspire people and brighten lives because my baby was a STAR and she shined brighter than any I've seen before.
A celebration of life is absolutely necessary. If ever there was a person who deserves to be celebrated, it's my sweet Vaida. We will announce visitation and funeral details as soon as we figure them out. We want anyone who followed her story and loved her and believed in her to come she her because you all meant something to her. Your love and prayers were felt and used to their fullest extent, and Vaida utilized that time and time again to keep fighting. She kicked ass for a long time. But her little body just couldn't do it anymore. And that's okay. She's okay now. I will always love her and I will never forget her beautiful smile, her laugh, her ticklish spots, the way she pulled her shirts over her paci and grabbed at her hair when she was sleepy, how she liked to shake her finger back and forth on her lips and wave and high five, how she just started giving kisses and using a bottle, and how not having her legs didn't stop her for a second and she would roll around like crazy to get what she wanted. She was seriously the sweetest, happiest, and most inspiring little girl, and Chris and I are the luckiest people in the world for getting to be her parents. The best thing that I could have ever asked for was being her mommy and loving her with everything in for every second, and I will never stop.
Thank you all for your wonderful and kind support. We are still shocked and confused, as are her doctors, but we have to move forward and prepare to celebrate her. We need help with funeral costs, and the life flight. So if anyone feels moved in your heart to help us, we are extending her gofundme page and ask that you please donate. We want every aspect of this to be perfect for our little girl who truly changed the world.
Any little bit will help, and we would be truly thankful during this hard time.
https://facebook.com/profile.php?id=811627235583116
Organizzatore
For Vaida Scott
Organizzatore
Fairfield, IL