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Ashton has been in the hospital for three weeks after having surgery to fix her congenital heart defects associated with Down Syndrome. She has had a few postop complications and had a second surgery to fix two valves in her heart. All donations will go to the Welker family to help with financial needs and medical costs.
Full Story Below:
Beautiful baby Ashton was born to Matt and Tori Welker on October 5th, 2018 in Bloomington, IL. She was born with Down Syndrome which was not discovered until her birth. Shortly after birth, her oxygen levels began to decline and an echocardiogram of heart showed that she had some heart defects. We have since learned that babies with Down Syndrome are at a much higher risk for congenital heart disease. That evening, she was urgently taken to Children’s Hospital of Illinois in Peoria for a higher level of care. She was diagnosed with several characteristics of Tetralogy of Fallot including narrowing of her pulmonary artery and holes between the four chambers of her heart causing unoxygenated and oxygenated blood to mix. She spent 11 days in the NICU at Children’s Hospital of Illinois and was finally able to come home with close monitoring of her oxygen levels and weight with the plan to go back to the hospital around six months for surgery to fix her heart defects. Her two older sisters, Alena, 4, and Addy, 3, were thrilled to have their baby sister home. She has seen doctors from several different specialties and worked with developmental and physical therapists at home. In these past six months Ashton successfully put on weight, learned to roll over, and wooed everyone with her infectious smiles and laughs.
Her surgery was originally scheduled for March 2019 but was pushed back because she was doing so well at home and the hospital was full of sick kids with RSV at the time. Surgery was rescheduled for the following month on April 30th. Based on doctors’ predictions, the Welkers were anticipating a 4 day to 2 week hospital stay if all went well. During the surgery the doctor was able to widen the pulmonary artery and use patches to close the holes in her heart. In addition to closing the holes, the cardiac surgeons had to create two valves, one on each side of her heart using existing leaflets. Surgery took a little longer than expected because the surgeon wanted to get things just right with hopes to prevent further surgeries. The first few days after her surgery were a little rough. Ashton had to be on a machine to do the majority of the work for her heart and lungs for 4 days. She always had 2-3 nurses in her room with her those first few days. The doctors also left her chest open for a week in case they had to emergently go back in for surgery due to any postop complications. We were all fascinated that we could see her beating heart. She had a few fast heart rhythms that the doctors and nurses were able to manage with medications and she had to be pharmacologically paralyzed for a while to keep her vital signs stable. Things were looking good when she was finally weaned off the breathing machine 15 days after surgery. Unfortunately, less that 48 hours later she had to be reintubated and placed back on the breathing machine because her oxygen levels were dangerously low causing her body to build up a high amount of lactic acid in her blood. An echocardiogram showed that her aortic valve now has a significant leak. The surgeons have planned for surgery on Tuesday, May 21st to fix the leaking valve that is most likely causing the low oxygen levels due to a backup of blood in her lungs. This valve was not a part of the original surgery but one of the patches is next to the aortic valve and the surgeon thinks some of these stitches could be causing the leak. Our hopes are that the surgeons will be able to fix the leaky valve with no complications and she can successfully wean off the breathing machine after that.
As a family we are so thankful for your continued prayers from all over the U.S. Thank you to family and friends who have showered Matt and Tori with support and comforting words. And thank you to Matt and Tori’s church small group who have provided countless meals for our family. We are hopeful that a majority of these extensive medical costs will be covered by insurance. We are also hopeful that Ashton will eventually be able to go home with as little medical equipment and needs as possible but at this time those exact needs and costs are not yet identified. As of today, 5/21/19, Ashton is now on day 21 of hospitalization in the pediatric ICU with no exact timeline for discharge. Children’s hospital of Illinois is 45 to 60 minutes from where Matt and Tori live and they have been driving there daily taking turns visiting Ashton in Peoria and staying at a nearby low-cost family house provided by the Children’s hospital. Their routine has been uprooted this past month trying to juggle being with Ashton and taking care of Alena and Addy at home, all while Matt continues to work and support the family financially. Matt and Tori are blessed to have the help of both of their parents in Bloomington to help take care of the older girls when they can get time off work. Despite all the help, Matt has had to intermittently cancel clients and classes when there are gaps with watching the girls. All donations will go to Matt and Tori for housing, gas, and food while Ashton continues to be in the hospital and to help compensate Matt’s income so he can best care for his family during this stressful time. Any leftover funds will go towards Ashton’s medical costs and future medical needs. Thank you again for the continuous love and prayers for the Welker family! We will keep everyone updated on her second surgery.
Update 5/21/19: Ashton has made it through her second surgery! The surgeons repaired both valves on the left side of her heart. They left her chest open for a few days to help with fluid removal. Though her blood pressure is a little bit unstable the doctors are hoping to manage it with medication and trying to avoid the device that does the work of her heart and lungs for her.
5/23/19: An echocardiogram shows the left and right valves look good along with the patch. There is still a leak in that aortic valve so they will follow up on that in a few days. Her heart function is good so the nurses are able to wean a few medications. They did find blood clots in both legs, which is common when there are lines in each groin, those are being treated with a blood thinner.
Full Story Below:
Beautiful baby Ashton was born to Matt and Tori Welker on October 5th, 2018 in Bloomington, IL. She was born with Down Syndrome which was not discovered until her birth. Shortly after birth, her oxygen levels began to decline and an echocardiogram of heart showed that she had some heart defects. We have since learned that babies with Down Syndrome are at a much higher risk for congenital heart disease. That evening, she was urgently taken to Children’s Hospital of Illinois in Peoria for a higher level of care. She was diagnosed with several characteristics of Tetralogy of Fallot including narrowing of her pulmonary artery and holes between the four chambers of her heart causing unoxygenated and oxygenated blood to mix. She spent 11 days in the NICU at Children’s Hospital of Illinois and was finally able to come home with close monitoring of her oxygen levels and weight with the plan to go back to the hospital around six months for surgery to fix her heart defects. Her two older sisters, Alena, 4, and Addy, 3, were thrilled to have their baby sister home. She has seen doctors from several different specialties and worked with developmental and physical therapists at home. In these past six months Ashton successfully put on weight, learned to roll over, and wooed everyone with her infectious smiles and laughs.
Her surgery was originally scheduled for March 2019 but was pushed back because she was doing so well at home and the hospital was full of sick kids with RSV at the time. Surgery was rescheduled for the following month on April 30th. Based on doctors’ predictions, the Welkers were anticipating a 4 day to 2 week hospital stay if all went well. During the surgery the doctor was able to widen the pulmonary artery and use patches to close the holes in her heart. In addition to closing the holes, the cardiac surgeons had to create two valves, one on each side of her heart using existing leaflets. Surgery took a little longer than expected because the surgeon wanted to get things just right with hopes to prevent further surgeries. The first few days after her surgery were a little rough. Ashton had to be on a machine to do the majority of the work for her heart and lungs for 4 days. She always had 2-3 nurses in her room with her those first few days. The doctors also left her chest open for a week in case they had to emergently go back in for surgery due to any postop complications. We were all fascinated that we could see her beating heart. She had a few fast heart rhythms that the doctors and nurses were able to manage with medications and she had to be pharmacologically paralyzed for a while to keep her vital signs stable. Things were looking good when she was finally weaned off the breathing machine 15 days after surgery. Unfortunately, less that 48 hours later she had to be reintubated and placed back on the breathing machine because her oxygen levels were dangerously low causing her body to build up a high amount of lactic acid in her blood. An echocardiogram showed that her aortic valve now has a significant leak. The surgeons have planned for surgery on Tuesday, May 21st to fix the leaking valve that is most likely causing the low oxygen levels due to a backup of blood in her lungs. This valve was not a part of the original surgery but one of the patches is next to the aortic valve and the surgeon thinks some of these stitches could be causing the leak. Our hopes are that the surgeons will be able to fix the leaky valve with no complications and she can successfully wean off the breathing machine after that.
As a family we are so thankful for your continued prayers from all over the U.S. Thank you to family and friends who have showered Matt and Tori with support and comforting words. And thank you to Matt and Tori’s church small group who have provided countless meals for our family. We are hopeful that a majority of these extensive medical costs will be covered by insurance. We are also hopeful that Ashton will eventually be able to go home with as little medical equipment and needs as possible but at this time those exact needs and costs are not yet identified. As of today, 5/21/19, Ashton is now on day 21 of hospitalization in the pediatric ICU with no exact timeline for discharge. Children’s hospital of Illinois is 45 to 60 minutes from where Matt and Tori live and they have been driving there daily taking turns visiting Ashton in Peoria and staying at a nearby low-cost family house provided by the Children’s hospital. Their routine has been uprooted this past month trying to juggle being with Ashton and taking care of Alena and Addy at home, all while Matt continues to work and support the family financially. Matt and Tori are blessed to have the help of both of their parents in Bloomington to help take care of the older girls when they can get time off work. Despite all the help, Matt has had to intermittently cancel clients and classes when there are gaps with watching the girls. All donations will go to Matt and Tori for housing, gas, and food while Ashton continues to be in the hospital and to help compensate Matt’s income so he can best care for his family during this stressful time. Any leftover funds will go towards Ashton’s medical costs and future medical needs. Thank you again for the continuous love and prayers for the Welker family! We will keep everyone updated on her second surgery.
Update 5/21/19: Ashton has made it through her second surgery! The surgeons repaired both valves on the left side of her heart. They left her chest open for a few days to help with fluid removal. Though her blood pressure is a little bit unstable the doctors are hoping to manage it with medication and trying to avoid the device that does the work of her heart and lungs for her.
5/23/19: An echocardiogram shows the left and right valves look good along with the patch. There is still a leak in that aortic valve so they will follow up on that in a few days. Her heart function is good so the nurses are able to wean a few medications. They did find blood clots in both legs, which is common when there are lines in each groin, those are being treated with a blood thinner.
Organizer and beneficiary
Tori Welker
Beneficiary