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Some of you have been followers of the Prayers for Lanie Grace page from the beginning and others have joined thereafter. To all of you...we love and appreciate you. There are not words adequate to express our gratitude for the continued prayers, thoughts and support that have been expressed in numerous acts of love. For those of you that have joined more recently, I am posting a history of Lanie's medical condition from the beginning of her diagnosis to present day.
In May of 2014, Kelsey and Eric Steingrubey received a medical diagnosis that would change their lives forever and would not diminish, but alter their dreams for their family. Kelsey and Eric were expecting their first child together. Kelsey went to her OB/GYN for her mid-term ultrasound. The reading from the ultrasound showed a possible issue and Kelsey was referred to have a more in-depth sonogram shortly following. The second ultrasound was confirmation there indeed was an issue. Lanie Grace, Kelsey and Eric’s baby was diagnosed with a variance of Hypoplastic Left Heart Syndrome (HLHS). This is a severe congenital heart defect where the left side of the baby’s heart is underdeveloped and affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart does not form correctly.
Due to this diagnosis, Kelsey and Eric were referred to Children’s Mercy Hospital. Kelsey would then be seen by an OB/GYN at CMH to continue her prenatal visits and would deliver there. They met with a team of doctors at Children’s Mercy to discuss the situation and learn what options would be best for Lanie. Hypoplastic Left Heart Syndrome is most often fatal without early intervention. Her survival would require a series of three reconstructive operations. This three surgeries series – (the Norwood, Glenn and Fontan procedures) is known as Staged Reconstruction.
On September 7, 2014 our family was graced with Lanie Grace Steingrubey. She had her first open heart surgery, the Norwood on September 11th. The surgery was successful, but not without many up and downs. We soon found Lanie had her ‘own way’ of progressing. We saw a fight in her that inspired all of us and she became our super ‘heart warrior’ hero. A child born with half a heart captured all of our hearts. During necessary intubation after Lanie’s Norwood surgery, she received nutrients through a NG tube that went through her nose, down into her stomach. Later in October, she also had a gastrostomy surgical procedure to insert a tube (G-tube) in her abdomen for her to be fed the proper nutrients, liquids and calories. Lanie is currently still receiving regular feeds through her G-tube. After a ten week stay at Children’s Mercy, Lanie was released to go home for the first time on November 12th.
Between the Norwood and the next upcoming surgery, the Glenn, is considered interstage. This was a very critical time for Lanie. Every precaution was taken to protect her from outside illnesses. Prior to the Glenn, Lanie was admitted for a few days to CMH for a heart catheterization in January 2015. Lanie had her second open heart surgery, the Glenn, on March 23rd, 2015. This procedure was also considered successful and her stay in the hospital was six days.
In addition to Lanie’s heart condition, she also had a common misalignment of her left eye, known as strabismus. She had corrective surgery in December 2015 and wears eye glasses for this condition.
Lanie had another heart catheterization on March 20, 2018 to check if her heart was mature enough for the third and final procedure in the series of the three reconstructive operations, the Fontan. It was determined her heart was ready, but would need to wait to schedule the operation outside of flu season. June 4, 2018 was the scheduled date for Lanie’s Fontan procedure. She was considered satisfactory to be discharged on June 10th. Lanie’s stay at home was less than a day. She became very sick and returned back to CMH through the emergency room on the 11th. She was found to have a blood infection and a clot located at the site where her picc line was, which required another six days stay at the hospital and three months of twice daily injections for the clot.
As mentioned previously, Lanie received her nutrients through her G-tube. Due to being intubated for for such a lengthy time after her first surgery, Lanie never did take a bottle, therefore she was being feed 100% through her abdomen on a regular schedule, night and day. Once Lanie was able to eat food by her mouth, her g-tube was still used to provide more nutrition. Her gastrostomy feeds have been part of Lanie all of her life.
From birth to present, Lanie has had numerous regularly scheduled doctors’ appointments and several irregularly scheduled appointments. These appointments were with her Primary Pediatrician, Cardiologist, Optometrist, Dentist, GI Clinic, Cardiac-Neuro Development Team (to track her development and make sure she was staying on track education wise), and Hematology in which labs needed to be drawn for six months due to her clot after her Fontan procedure. With all these necessary scheduled appointments, also comes the possibility of germ and virus exposure. Although Lanie has been up-to-date immunized and her and her family had all received the Influenza vaccination, this fall and winter has been extremely tough on Lanie for illnesses.
In October of 2018, Lanie’s cardiologist noticed her heart function was declining. She said there was a possibility the rise in her BNP number (heart function) could be affected by a virus she had a couple weeks prior. In December ‘18, Lanie suffered from another virus and later lab work and a visit with cardiologist showed a continued slight increase in BNP number and heart decline. The possibility of heart transplant for later in the future was mentioned.
The latter part of January of this year, Lanie became ill with yet another virus. After a week of fever, cough and respiratory issues, a couple of doctor visits and lung x-rays during the week, Kelsey took Lanie to the emergency room on January 30th, with more severe symptoms. She was admitted and was being monitored. Lanie’s symptoms became extreme and she ended up going into cardiac arrest and coded. CPR was performed on Lanie for over an hour and a half to get her on ECMO, which is heart and lung life support. During this time, Lanie suffered a stroke which caused injury to a large area on the left side of her brain. The swelling from the left side caused additional damage to her right side. She also suffered injury to her basal ganglia from lack of oxygen to it during her cardiac arrest. Due to the brain injury, the neurologist was unsure what Lanie would actually be able to relearn or what quality of life she could have. Lanie was successfully removed from ECMO on February 8th and her surgeon was able to repair the vessels the ECMO cannulas went into. A couple days later, they began ventilator wean. After several days of steps forward and steps backward, she was finally removed from the ventilator. The medical team continues to balance and wean Lanie from her different medications. Presently she is not tolerating the wean or removal of her heart functioning medication(s).
Wednesday, February 27th, will mark four weeks of hospital stay in the PICU for Lanie. During this time, Eric and Kelsey are trying to balance their time with Lanie in the hospital, their time with their other three children, Emeri -12, Mollie-3 and Nash-almost 6 months and taking care of other real life and household responsibilities. Finances and job security have made it necessary for Eric to return to work. Speaking on behalf of Eric and Kelsey, our family is so very appreciative of all the continued prayers, thoughts and support that have been expressed in numerous acts of love. There is no way possible we could get through this tragic time without all of you.
In May of 2014, Kelsey and Eric Steingrubey received a medical diagnosis that would change their lives forever and would not diminish, but alter their dreams for their family. Kelsey and Eric were expecting their first child together. Kelsey went to her OB/GYN for her mid-term ultrasound. The reading from the ultrasound showed a possible issue and Kelsey was referred to have a more in-depth sonogram shortly following. The second ultrasound was confirmation there indeed was an issue. Lanie Grace, Kelsey and Eric’s baby was diagnosed with a variance of Hypoplastic Left Heart Syndrome (HLHS). This is a severe congenital heart defect where the left side of the baby’s heart is underdeveloped and affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart does not form correctly.
Due to this diagnosis, Kelsey and Eric were referred to Children’s Mercy Hospital. Kelsey would then be seen by an OB/GYN at CMH to continue her prenatal visits and would deliver there. They met with a team of doctors at Children’s Mercy to discuss the situation and learn what options would be best for Lanie. Hypoplastic Left Heart Syndrome is most often fatal without early intervention. Her survival would require a series of three reconstructive operations. This three surgeries series – (the Norwood, Glenn and Fontan procedures) is known as Staged Reconstruction.
On September 7, 2014 our family was graced with Lanie Grace Steingrubey. She had her first open heart surgery, the Norwood on September 11th. The surgery was successful, but not without many up and downs. We soon found Lanie had her ‘own way’ of progressing. We saw a fight in her that inspired all of us and she became our super ‘heart warrior’ hero. A child born with half a heart captured all of our hearts. During necessary intubation after Lanie’s Norwood surgery, she received nutrients through a NG tube that went through her nose, down into her stomach. Later in October, she also had a gastrostomy surgical procedure to insert a tube (G-tube) in her abdomen for her to be fed the proper nutrients, liquids and calories. Lanie is currently still receiving regular feeds through her G-tube. After a ten week stay at Children’s Mercy, Lanie was released to go home for the first time on November 12th.
Between the Norwood and the next upcoming surgery, the Glenn, is considered interstage. This was a very critical time for Lanie. Every precaution was taken to protect her from outside illnesses. Prior to the Glenn, Lanie was admitted for a few days to CMH for a heart catheterization in January 2015. Lanie had her second open heart surgery, the Glenn, on March 23rd, 2015. This procedure was also considered successful and her stay in the hospital was six days.
In addition to Lanie’s heart condition, she also had a common misalignment of her left eye, known as strabismus. She had corrective surgery in December 2015 and wears eye glasses for this condition.
Lanie had another heart catheterization on March 20, 2018 to check if her heart was mature enough for the third and final procedure in the series of the three reconstructive operations, the Fontan. It was determined her heart was ready, but would need to wait to schedule the operation outside of flu season. June 4, 2018 was the scheduled date for Lanie’s Fontan procedure. She was considered satisfactory to be discharged on June 10th. Lanie’s stay at home was less than a day. She became very sick and returned back to CMH through the emergency room on the 11th. She was found to have a blood infection and a clot located at the site where her picc line was, which required another six days stay at the hospital and three months of twice daily injections for the clot.
As mentioned previously, Lanie received her nutrients through her G-tube. Due to being intubated for for such a lengthy time after her first surgery, Lanie never did take a bottle, therefore she was being feed 100% through her abdomen on a regular schedule, night and day. Once Lanie was able to eat food by her mouth, her g-tube was still used to provide more nutrition. Her gastrostomy feeds have been part of Lanie all of her life.
From birth to present, Lanie has had numerous regularly scheduled doctors’ appointments and several irregularly scheduled appointments. These appointments were with her Primary Pediatrician, Cardiologist, Optometrist, Dentist, GI Clinic, Cardiac-Neuro Development Team (to track her development and make sure she was staying on track education wise), and Hematology in which labs needed to be drawn for six months due to her clot after her Fontan procedure. With all these necessary scheduled appointments, also comes the possibility of germ and virus exposure. Although Lanie has been up-to-date immunized and her and her family had all received the Influenza vaccination, this fall and winter has been extremely tough on Lanie for illnesses.
In October of 2018, Lanie’s cardiologist noticed her heart function was declining. She said there was a possibility the rise in her BNP number (heart function) could be affected by a virus she had a couple weeks prior. In December ‘18, Lanie suffered from another virus and later lab work and a visit with cardiologist showed a continued slight increase in BNP number and heart decline. The possibility of heart transplant for later in the future was mentioned.
The latter part of January of this year, Lanie became ill with yet another virus. After a week of fever, cough and respiratory issues, a couple of doctor visits and lung x-rays during the week, Kelsey took Lanie to the emergency room on January 30th, with more severe symptoms. She was admitted and was being monitored. Lanie’s symptoms became extreme and she ended up going into cardiac arrest and coded. CPR was performed on Lanie for over an hour and a half to get her on ECMO, which is heart and lung life support. During this time, Lanie suffered a stroke which caused injury to a large area on the left side of her brain. The swelling from the left side caused additional damage to her right side. She also suffered injury to her basal ganglia from lack of oxygen to it during her cardiac arrest. Due to the brain injury, the neurologist was unsure what Lanie would actually be able to relearn or what quality of life she could have. Lanie was successfully removed from ECMO on February 8th and her surgeon was able to repair the vessels the ECMO cannulas went into. A couple days later, they began ventilator wean. After several days of steps forward and steps backward, she was finally removed from the ventilator. The medical team continues to balance and wean Lanie from her different medications. Presently she is not tolerating the wean or removal of her heart functioning medication(s).
Wednesday, February 27th, will mark four weeks of hospital stay in the PICU for Lanie. During this time, Eric and Kelsey are trying to balance their time with Lanie in the hospital, their time with their other three children, Emeri -12, Mollie-3 and Nash-almost 6 months and taking care of other real life and household responsibilities. Finances and job security have made it necessary for Eric to return to work. Speaking on behalf of Eric and Kelsey, our family is so very appreciative of all the continued prayers, thoughts and support that have been expressed in numerous acts of love. There is no way possible we could get through this tragic time without all of you.
Organizer and beneficiary
Kelsey Steingrubey
Beneficiary