In Memory of Layla Grace Johnson
Donation protected
We have been overwhelmed with friends and family wanting to send flowers, cards, gifts, etc. While we really appreciate the kind gesture, we would love to be able to make a sizable donation in Layla's name to the Ronald McDonald House Charities. Because of the generosity of this amazing organization, we were able to have a place to sleep and shower and only be steps away from Layla's room every single night she was in the hospital. We will be forever grateful to this organization for allowing us to focus on Layla and not worry about the small things. We do not know what we would have done without this. We probably would have been on the floor in sleeping bags in her room because we did not want to leave her side.
Layla's story:
Layla Grace Johnson was born at The Women's Hospital of Texas in Houston on Wednesday, June 1st, 2016 at 9:57am. She came out crying and moving around like crazy. I guess that's what 38 weeks of crossfit will do to someone! Phillip was able to see her first and watched as they cleaned her up, weighed her (7lb. 2 oz.), and brought her to me. I got to hold her for about 10 minutes before they took her to be examined and get her dressed. My surgery was finished and I was taken to recovery. I was dying to get to see Layla again, to hold her, to see who she looked like. Once in recovery, they said she was breathing rather quickly so they were going to monitor her for a few more minutes. They said this was fairly normal for c-section babies because they do not have a chance to clear their lungs in the birth canal and she probably just had extra fluid in there. When her breathing didn't get better, they brought her by so I could kiss her and Phillip went with her to NICU while I stayed in recovery. From that moment on all our energy and focus went into doing everything we could in our power to bring her home. Little did we know Layla would never leave NICU.
She spent 3 days in NICU at Women's before being sent to Texas Children's Hospital for more specialized care. The first 3 days at Children's were a blur of tests, treatments, procedures, and exams. She was even on hemodialysis for 30 hours. All of the treatments helped but did not seem to control the ammonia and acid levels in her body. Through all of this Layla was a trooper. She did not fight the doctors nor did she act as though she was in pain. On Layla's 6th day the results of labs came back and she was diagnosed with Multiple Acyl-coa Dehydrogenase Deficiency. This is a rare double recessive genetic disorder where her cellular metabolic process does not work correctly. There is no cure, only one treatment that is affective in some cases. Treatment was started immediately with all hopes and prayers that it would work. The next 7 days were a seesaw of emotions as she had good days and not so goods days. It was becoming evident though testing that she was not responsive to the treatment, so the toxins her body naturally produced were starting to affect her core systems, mainly her heart. After 13 days in NICU on Tuesday, June 14th, 2016 at 2:39pm Layla's heart could no longer sustain her body and our little angel went back to Heaven.
During her 13 days in NUIC we sang to her, held her, kissed her, read books to her, cried with her, laughed with her, held her hand, and generally just loved on her. She got to meet her big sister, grandparents, aunts, uncles, cousins, and those family members that are not technically family but a family just the same. Each and every person that met her were profoundly impacted by her because of her strength to endure no matter what the statistics were saying.
We have to also give a heartfelt THANK YOU to the greatest doctors and nurses in the world at Texas Children's Hospital. We could not have asked for a better team to work on Layla's case. Not only are they the best at what they do, they never treated her as a number and you could tell they were emotionally invested in treating her. This team became new family members while we were there. Thank God we live in Houston where all the best medical professionals in the country work.
We truly appreciate all the love, prayers, and support from everyone during this difficult time for our family. We cannot thank you enough.
We love you!
Rachel, Phillip and Samantha
Layla's story:
Layla Grace Johnson was born at The Women's Hospital of Texas in Houston on Wednesday, June 1st, 2016 at 9:57am. She came out crying and moving around like crazy. I guess that's what 38 weeks of crossfit will do to someone! Phillip was able to see her first and watched as they cleaned her up, weighed her (7lb. 2 oz.), and brought her to me. I got to hold her for about 10 minutes before they took her to be examined and get her dressed. My surgery was finished and I was taken to recovery. I was dying to get to see Layla again, to hold her, to see who she looked like. Once in recovery, they said she was breathing rather quickly so they were going to monitor her for a few more minutes. They said this was fairly normal for c-section babies because they do not have a chance to clear their lungs in the birth canal and she probably just had extra fluid in there. When her breathing didn't get better, they brought her by so I could kiss her and Phillip went with her to NICU while I stayed in recovery. From that moment on all our energy and focus went into doing everything we could in our power to bring her home. Little did we know Layla would never leave NICU.
She spent 3 days in NICU at Women's before being sent to Texas Children's Hospital for more specialized care. The first 3 days at Children's were a blur of tests, treatments, procedures, and exams. She was even on hemodialysis for 30 hours. All of the treatments helped but did not seem to control the ammonia and acid levels in her body. Through all of this Layla was a trooper. She did not fight the doctors nor did she act as though she was in pain. On Layla's 6th day the results of labs came back and she was diagnosed with Multiple Acyl-coa Dehydrogenase Deficiency. This is a rare double recessive genetic disorder where her cellular metabolic process does not work correctly. There is no cure, only one treatment that is affective in some cases. Treatment was started immediately with all hopes and prayers that it would work. The next 7 days were a seesaw of emotions as she had good days and not so goods days. It was becoming evident though testing that she was not responsive to the treatment, so the toxins her body naturally produced were starting to affect her core systems, mainly her heart. After 13 days in NICU on Tuesday, June 14th, 2016 at 2:39pm Layla's heart could no longer sustain her body and our little angel went back to Heaven.
During her 13 days in NUIC we sang to her, held her, kissed her, read books to her, cried with her, laughed with her, held her hand, and generally just loved on her. She got to meet her big sister, grandparents, aunts, uncles, cousins, and those family members that are not technically family but a family just the same. Each and every person that met her were profoundly impacted by her because of her strength to endure no matter what the statistics were saying.
We have to also give a heartfelt THANK YOU to the greatest doctors and nurses in the world at Texas Children's Hospital. We could not have asked for a better team to work on Layla's case. Not only are they the best at what they do, they never treated her as a number and you could tell they were emotionally invested in treating her. This team became new family members while we were there. Thank God we live in Houston where all the best medical professionals in the country work.
We truly appreciate all the love, prayers, and support from everyone during this difficult time for our family. We cannot thank you enough.
We love you!
Rachel, Phillip and Samantha
Organizer
Rachel Bonnette Johnson
Organizer
Spring, TX
