Help Elsie Eat
Donation protected
Meet my niece, Elsie. This is her story and our family's plea for help.
Baby Elsie was born at 23 weeks gestation in 2013. To some, that is too early to be considered viable, but with the help of some amazing doctors and nurses, Elsie survived. Elsie’s story is full of miracles. Through all of the obstacles and trials she experienced, she was able to overcome nearly all of them.Elsie was 570 grams when she was born; that’s just about one pound, four ounces. Her arms and legs were about the thickness of a pencil.
Elsie suffered a Grade II and Grade IV brain hemorrhages. The bleeding inside her brain should have caused significant brain damage, and could have caused cerebral palsy, hydrocephalus, and other disabling conditions. However, the bleeding resolved itself on its own, with no needs for a shunt or other interventions. She suffered no permanent brain damage.
Elsie had to have a PDA ligation, which is a surgery to close a tiny valve in her heart. The surgery went well, and the valve was successfully closed with a tiny staple that is still inside her today. Every time I see the scar on her back from this surgery, I am reminded how lucky we are to have her alive and well.
Elsie contracted Retinopathy of Prematurity, which is an eye disease that could potentially cause blindness. She had laser surgery on her eyes twice to prevent the disease from getting worse and detaching her retinas. When she was only six months old, but the size of a two month old, it was determined that Elsie needed glasses. She wore glasses for about eight months, but at her next check-up with the ophthalmologist, her eyes had corrected themselves, and she no longer needed the glasses.
One of Elsie’s biggest obstacles so far has been her battle with her oral aversion. An oral aversion is when you are uncomfortable or fearful of things near or in your mouth, including and especially food. Because of the breathing tubes and feeding tubes that were uncomfortably down her throat during her 160 days in the NICU, Elsie developed a severe oral aversion. She would not breast feed or even bottle feed, and would gag and retch horribly if we tried. She had to have a gastrostomy tube, or gtube, placed surgically into her stomach when she was five months old, as a semi-permanent feeding tube. The gtube is a device that allows us to feed Elsie directly into her stomach, bypassing her mouth and throat completely. She gets 100% of her nutrition through her feeding tube. She does not, nor has she ever, eaten with her mouth like everybody else does.
Through intensive feeding therapy with an amazing Speech & Language Pathologist, Elsie has overcome her fear of food, and will now touch, smell, and taste most foods. She enjoys chewing on some foods, but swallows very little, if any. Instead of swallowing, she spits food out. There is no physical reason why she can’t eat. Her eating problems are all psychological. She is afraid of swallowing. And because she has a feeding tube that delivers food to her stomach without her having to swallow, she has no motivation to learn to swallow. The feeding tube, while definitely a life-saving device, has become a crutch for Elsie.
Elsie is now two years old. We want to be done with her feeding tube, and for her to live a normal and healthy life. We want to be done with syringes, extension sets, feeding pumps, medical tape and gauze, worrying about her gtube being accidentally pulled out, and having to bring special food for Elsie wherever we go. Another nasty side effect of Elsie's oral aversion is that she gags and, consequently, throws up frequently. Life is hard with a chronic puker! Vomit-stained clothes and vomit-stained carpets are part of our everyday life because of her oral aversion. We have become adept at catching barf in a cup, and always scout out a new place for the closest garbage can, just in case puke comes to vist. We're tired of the vomit, and so is Elsie! We want her to be able to eat orally, and enjoy eating. Eating is a huge part of every culture, and we want her to be able to enjoy eating traditions with our family and the rest of society.
We need your help! We have found a reputable program that will help wean Elsie from her feeding tube. The cost is great, but we believe the sacrifice will be a huge investment in Elsie’s future. We know Elsie can overcome this last great big obstacle that is in her path. She can do it with the help of a professional. Help us help Elsie eat!
Baby Elsie was born at 23 weeks gestation in 2013. To some, that is too early to be considered viable, but with the help of some amazing doctors and nurses, Elsie survived. Elsie’s story is full of miracles. Through all of the obstacles and trials she experienced, she was able to overcome nearly all of them.Elsie was 570 grams when she was born; that’s just about one pound, four ounces. Her arms and legs were about the thickness of a pencil.Elsie suffered a Grade II and Grade IV brain hemorrhages. The bleeding inside her brain should have caused significant brain damage, and could have caused cerebral palsy, hydrocephalus, and other disabling conditions. However, the bleeding resolved itself on its own, with no needs for a shunt or other interventions. She suffered no permanent brain damage.
Elsie had to have a PDA ligation, which is a surgery to close a tiny valve in her heart. The surgery went well, and the valve was successfully closed with a tiny staple that is still inside her today. Every time I see the scar on her back from this surgery, I am reminded how lucky we are to have her alive and well.
Elsie contracted Retinopathy of Prematurity, which is an eye disease that could potentially cause blindness. She had laser surgery on her eyes twice to prevent the disease from getting worse and detaching her retinas. When she was only six months old, but the size of a two month old, it was determined that Elsie needed glasses. She wore glasses for about eight months, but at her next check-up with the ophthalmologist, her eyes had corrected themselves, and she no longer needed the glasses.One of Elsie’s biggest obstacles so far has been her battle with her oral aversion. An oral aversion is when you are uncomfortable or fearful of things near or in your mouth, including and especially food. Because of the breathing tubes and feeding tubes that were uncomfortably down her throat during her 160 days in the NICU, Elsie developed a severe oral aversion. She would not breast feed or even bottle feed, and would gag and retch horribly if we tried. She had to have a gastrostomy tube, or gtube, placed surgically into her stomach when she was five months old, as a semi-permanent feeding tube. The gtube is a device that allows us to feed Elsie directly into her stomach, bypassing her mouth and throat completely. She gets 100% of her nutrition through her feeding tube. She does not, nor has she ever, eaten with her mouth like everybody else does.Through intensive feeding therapy with an amazing Speech & Language Pathologist, Elsie has overcome her fear of food, and will now touch, smell, and taste most foods. She enjoys chewing on some foods, but swallows very little, if any. Instead of swallowing, she spits food out. There is no physical reason why she can’t eat. Her eating problems are all psychological. She is afraid of swallowing. And because she has a feeding tube that delivers food to her stomach without her having to swallow, she has no motivation to learn to swallow. The feeding tube, while definitely a life-saving device, has become a crutch for Elsie.
Elsie is now two years old. We want to be done with her feeding tube, and for her to live a normal and healthy life. We want to be done with syringes, extension sets, feeding pumps, medical tape and gauze, worrying about her gtube being accidentally pulled out, and having to bring special food for Elsie wherever we go. Another nasty side effect of Elsie's oral aversion is that she gags and, consequently, throws up frequently. Life is hard with a chronic puker! Vomit-stained clothes and vomit-stained carpets are part of our everyday life because of her oral aversion. We have become adept at catching barf in a cup, and always scout out a new place for the closest garbage can, just in case puke comes to vist. We're tired of the vomit, and so is Elsie! We want her to be able to eat orally, and enjoy eating. Eating is a huge part of every culture, and we want her to be able to enjoy eating traditions with our family and the rest of society.
We need your help! We have found a reputable program that will help wean Elsie from her feeding tube. The cost is great, but we believe the sacrifice will be a huge investment in Elsie’s future. We know Elsie can overcome this last great big obstacle that is in her path. She can do it with the help of a professional. Help us help Elsie eat!
Organizer
Ramona Mathis
Organizer
Sandy City, UT