Elsie Jean Steinbach Kickstart My Heart
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Elsie Jean Steinbach, “Operation Kickstart my Heart”
Elsie Jean Steinbach born December 14, 2020 is the newborn daughter of Tim & Alexa (Wegner) Steinbach and granddaughter of Kim & the late John Steinbach, Ron & Heidi Wegner.
As you read the story below you will see the reason for our desire to help Elsie and her parents out. Tim and Alexa along with their extended family, spend their days helping others as First Responders, and now they need some assistance. Tim is a Jefferson County Sheriff’s Deputy and Alexa a Firefighter/Paramedic with the City of Watertown and paid on call member of Jefferson Fire & EMS.
Elsie has the Heart of a Warrior! She is fighting the fight but has a long battle ahead. The cost of medical care is being addressed, however the “uninsured costs” that lie ahead for Tim & Alexa with the transfer of baby Elsie’s care to Stanford University Hospital in Palo Alto California are not.
We are reaching out to our friends, families, neighbors, community and the community of Law Enforcement and Fire/EMS to circle around Elsie and support her and her family as they guide her care.
Thank you!
Elsie’s Kickstart my Heart Fundraising Committee:
Jim & Ruth Shuda, Tom & Amy Monogue, Ryan & Trish Hebbe, Don & Jane Vogel.
(From Alexa & Tim) Our extra special parenting adventure started at our 20-week anatomy scan when we learned of Elsie's congenital heart defect. After many echocardiograms and ultrasounds Elsie was officially diagnosed with Pulmonary Atresia with Vasal Septal Defect (VSD) and Major Aortopulmonary Collateral Arteries (MAPCAs). A few weeks later we discovered two additional diagnoses complicating our pregnancy; Elsie was found to have bilateral clubbed feet and I had polyhydramnios (excess amniotic fluid). After bi-weekly appointments with our wonderful Maternal Fetal Medicine team at St. Mary's Hospital in Madison, we were able to make it to full term. Elsie was born at 4:34pm on December 14th at Froedtert Hospital in Milwaukee, where pediatric cardiothoracic surgeons would be available if Elsie’s complex heart required immediate intervention. With the guidance of Elsie’s cardiology team, we anticipated a short NICU stay at Children’s Hospital of Wisconsin during which time they would gather the imaging and studies they would need to plan for her surgery. We fully expected to be home within several days to a week. The plan was to give Elsie the chance to grow for a few months before her first open heart surgery. Elsie had other plans and has kept us and her team of doctors and nurses on our toes!
Since her birth, Elsie has also been diagnosed with 22q Deletion, also known as DiGeorge Syndrome, a condition with a broad spectrum of symptoms and presentations. This condition explains and encompasses the complications we knew of prior to her birth and the complications she is facing now: tracheobronchomalacia which has left Elsie with a tracheostomy and dependent on a ventilator to breath, hypoparathyroidism, hypocalcemia and seizures. Despite all this, Elsie is the sweetest, toughest, bravest little girl. Her chubby cheeks, thick head of hair and sometimes spicy attitude have made her a favorite of all the doctor and nurse friends she has made here at Children's Hospital.
This April, Elsie is going to be making some new doctor and nurse friends out at Stanford University and Lucille Packard Children’s Hospital in Palo Alto, California. Elsie’s particular heart defect is very rare and very challenging to fix on its own. With all of her additional complications, Elsie’s cardiologists here at Children’s Wisconsin and St. Mary’s feel strongly that Elsie needs to see the world’s experts in this particular repair. Dr. Frank Hanley with Stanford’s Pulmonary Artery Reconstruction program created the ‘Unifocalization’ procedure Elsie needs and he is still practicing today. While there is still much planning to do and logistical details to sort out, Elsie will be having her first open-heart surgery in California on April 13th with Dr. Michael Ma a colleague of Dr. Hanley’s. We are hopeful Elsie will be able to have her full repair done in one operation but are aware that this might be a staged process that requires a number of open-heart surgeries to achieve the end goal. If all goes well, we’ve been told to anticipate at least a month long stay in California for her post-operative recovery. Since Elsie always seems to have a plan of her own, we’re going to anticipate a longer stay and hopefully be blessed with the good fortune of a quick recovery and return home.
Our perfect little girl has a very long road ahead of her. Her complex medical issues are going to need lifelong care. Tim and I are filled with gratitude over the support the three of us have already received from family, friends, acquaintances, and strangers. Although we are still in the trenches and find it hard to see God’s goodness on the especially hard days, the acts of kindness and generosity that have been extended to us remind us of His love. From the bottom of our hearts, thank you all so much.
Jeremiah 29:11 For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and future.
Elsie Jean Steinbach born December 14, 2020 is the newborn daughter of Tim & Alexa (Wegner) Steinbach and granddaughter of Kim & the late John Steinbach, Ron & Heidi Wegner.
As you read the story below you will see the reason for our desire to help Elsie and her parents out. Tim and Alexa along with their extended family, spend their days helping others as First Responders, and now they need some assistance. Tim is a Jefferson County Sheriff’s Deputy and Alexa a Firefighter/Paramedic with the City of Watertown and paid on call member of Jefferson Fire & EMS.
Elsie has the Heart of a Warrior! She is fighting the fight but has a long battle ahead. The cost of medical care is being addressed, however the “uninsured costs” that lie ahead for Tim & Alexa with the transfer of baby Elsie’s care to Stanford University Hospital in Palo Alto California are not.
We are reaching out to our friends, families, neighbors, community and the community of Law Enforcement and Fire/EMS to circle around Elsie and support her and her family as they guide her care.
Thank you!
Elsie’s Kickstart my Heart Fundraising Committee:
Jim & Ruth Shuda, Tom & Amy Monogue, Ryan & Trish Hebbe, Don & Jane Vogel.
(From Alexa & Tim) Our extra special parenting adventure started at our 20-week anatomy scan when we learned of Elsie's congenital heart defect. After many echocardiograms and ultrasounds Elsie was officially diagnosed with Pulmonary Atresia with Vasal Septal Defect (VSD) and Major Aortopulmonary Collateral Arteries (MAPCAs). A few weeks later we discovered two additional diagnoses complicating our pregnancy; Elsie was found to have bilateral clubbed feet and I had polyhydramnios (excess amniotic fluid). After bi-weekly appointments with our wonderful Maternal Fetal Medicine team at St. Mary's Hospital in Madison, we were able to make it to full term. Elsie was born at 4:34pm on December 14th at Froedtert Hospital in Milwaukee, where pediatric cardiothoracic surgeons would be available if Elsie’s complex heart required immediate intervention. With the guidance of Elsie’s cardiology team, we anticipated a short NICU stay at Children’s Hospital of Wisconsin during which time they would gather the imaging and studies they would need to plan for her surgery. We fully expected to be home within several days to a week. The plan was to give Elsie the chance to grow for a few months before her first open heart surgery. Elsie had other plans and has kept us and her team of doctors and nurses on our toes!
Since her birth, Elsie has also been diagnosed with 22q Deletion, also known as DiGeorge Syndrome, a condition with a broad spectrum of symptoms and presentations. This condition explains and encompasses the complications we knew of prior to her birth and the complications she is facing now: tracheobronchomalacia which has left Elsie with a tracheostomy and dependent on a ventilator to breath, hypoparathyroidism, hypocalcemia and seizures. Despite all this, Elsie is the sweetest, toughest, bravest little girl. Her chubby cheeks, thick head of hair and sometimes spicy attitude have made her a favorite of all the doctor and nurse friends she has made here at Children's Hospital.
This April, Elsie is going to be making some new doctor and nurse friends out at Stanford University and Lucille Packard Children’s Hospital in Palo Alto, California. Elsie’s particular heart defect is very rare and very challenging to fix on its own. With all of her additional complications, Elsie’s cardiologists here at Children’s Wisconsin and St. Mary’s feel strongly that Elsie needs to see the world’s experts in this particular repair. Dr. Frank Hanley with Stanford’s Pulmonary Artery Reconstruction program created the ‘Unifocalization’ procedure Elsie needs and he is still practicing today. While there is still much planning to do and logistical details to sort out, Elsie will be having her first open-heart surgery in California on April 13th with Dr. Michael Ma a colleague of Dr. Hanley’s. We are hopeful Elsie will be able to have her full repair done in one operation but are aware that this might be a staged process that requires a number of open-heart surgeries to achieve the end goal. If all goes well, we’ve been told to anticipate at least a month long stay in California for her post-operative recovery. Since Elsie always seems to have a plan of her own, we’re going to anticipate a longer stay and hopefully be blessed with the good fortune of a quick recovery and return home.
Our perfect little girl has a very long road ahead of her. Her complex medical issues are going to need lifelong care. Tim and I are filled with gratitude over the support the three of us have already received from family, friends, acquaintances, and strangers. Although we are still in the trenches and find it hard to see God’s goodness on the especially hard days, the acts of kindness and generosity that have been extended to us remind us of His love. From the bottom of our hearts, thank you all so much.
Jeremiah 29:11 For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and future.
Organizer
Jim Shuda
Organizer
Jefferson, WI