Updates on Jack's progress can be found here!
On January 6th, the Lorton family of three grew by one heart. Paul and Angie were blessed to be able to experience a beautiful home birth. Big sister, Alexi, was thrilled to finally meet her baby brother and loved to pat him gently saying, “Gentle, baby.” Not surprisingly, given what we know of Jack’s strength now, he seemed to nurse and sleep well. It was a perfect first day at home for the new family of four.
However, at just under 24 hours old, Paul and Angie grew worried about Jack’s quick respiratory rate. At the request of their pediatrician, Paul and Angie brought Jack to the ED at Thunderbird where he was put on observation. Some hours later and now a whirlwind of medical procedures ago, an Echo revealed very poor heart functioning and Jack was emergently whisked away to the ICU.
At little over 24 hours old, Jack was diagnosed with critical aortic stenosis. He was medically transported to Cardon Children’s where he received his earliest care. A balloon valvuloplasty was performed at 2 days old to expand his aortic valve. Jack had already begun defying odds when he withstood birth and his time at home, but for this procedure there was only a 20% chance of the balloon opening perfectly – and it did. When it became clear that Jack’s treatment plan was likely to involve open heart surgery, possibly imminent, he was life-flighted to Phoenix Children’s Hospital, where he has remained in the Cardiac ICU (CVICU) since January 15th.
Jack’s journey has been that of “two steps forward, one step back”. After two failed extubations (one purposeful, and one considered “self-extubation” – they don’t call him Super Jack for nothing), chest X-rays revealed that, on top of heart functioning, Jack’s lung functioning was poor. It was later determined that Jack contacted Legionella, which requires a specific antibiotic. Armed with this knowledge, doctors were able to effectively treat the lung infection and he was finally able to tolerate extubation on February 3rd.
While there was some hope offered along the way that Jack might not require surgery for a year, the daily goal was to keep Jack on track, gaining weight and building strength. At the end of February, Jack’s doctors determined that he would likely require (and be ready for) surgery soon. Surgical options were discussed with Paul and Angie, though the surgeon was not entirely sure which procedure would be performed until he had a better visual on Jack’s actual heart functioning.
On March 1st, at just shy of 8 weeks old, Jack underwent open heart surgery. Dr. Nigro, with the assistance of a talented medical team, performed the Ross Konno procedure. Jack’s pulmonary valve was moved to his aortic valve position, as this valve will be able to grow with him. In place of Jack’s pulmonary valve is now a Contegra valve (made from the veins in a cow). Jack’s mitral valve was also expanded, though it will require additional expansion as he grows. Post-op, Jack has made strides that are nothing short of miraculous. Two days after surgery, his sternum was closed (as it was left open to allow for inflammation). In the following days, Jack’s central line, catheter, and chest tubes were removed. He was extubated, which he tolerated wonderfully. Nurses continue to wean drugs and Jack is back to the good stuff – breastmilk!
The Lorton family has learned to take things day-by-day. They long for the day to bring Jack home and experience those “tiresome” parental responsibilities, such as changing diapers and cleaning spit-up. They will gladly assume those responsibilities with a healthy and thriving baby boy in their home. Alexi can’t wait for that day, too!
Your prayers have carried and continue to carry Jack and his family through this difficult time! Though Jack’s strength and determination has led him down this miraculous path over the past two months, his journey is far from over. He continues to recover from surgery in the hospital. Jack will require additional surgeries in the future, though hopefully not for 1-2 more years. Paul and Angie are in the early stages of preparing for Jack’s transition home. At home, Jack will require specialized medical equipment in order to sustain and monitor his progress over time. It is likely that Jack will also require specialized support in the home, including medically trained caregivers (Paul has already returned to work, and Angie will do so in less than 1 month), speech therapy, occupational therapy, and physical therapy. Jack will continue to require regular medical visits with his cardiac specialists.
Though the Lorton family has medical insurance, their total out-of-pocket expenses will be in excess of $8,000. This number doesn’t account for travel, services, or equipment that Jack will require that are not covered by insurance. With the help of donations, the Lorton family can ensure that Jack receives the best ongoing care without added financial stress. Please help in our efforts to provide the very best care for Jack. His journey has been long and the journey continues, but he is a fighter! Your donation will help diminish the financial burden and focus on the healthiest and happiest future for Jack.
With love and gratitude,
Mallory (Angie’s friend)
On January 6th, the Lorton family of three grew by one heart. Paul and Angie were blessed to be able to experience a beautiful home birth. Big sister, Alexi, was thrilled to finally meet her baby brother and loved to pat him gently saying, “Gentle, baby.” Not surprisingly, given what we know of Jack’s strength now, he seemed to nurse and sleep well. It was a perfect first day at home for the new family of four.However, at just under 24 hours old, Paul and Angie grew worried about Jack’s quick respiratory rate. At the request of their pediatrician, Paul and Angie brought Jack to the ED at Thunderbird where he was put on observation. Some hours later and now a whirlwind of medical procedures ago, an Echo revealed very poor heart functioning and Jack was emergently whisked away to the ICU.
At little over 24 hours old, Jack was diagnosed with critical aortic stenosis. He was medically transported to Cardon Children’s where he received his earliest care. A balloon valvuloplasty was performed at 2 days old to expand his aortic valve. Jack had already begun defying odds when he withstood birth and his time at home, but for this procedure there was only a 20% chance of the balloon opening perfectly – and it did. When it became clear that Jack’s treatment plan was likely to involve open heart surgery, possibly imminent, he was life-flighted to Phoenix Children’s Hospital, where he has remained in the Cardiac ICU (CVICU) since January 15th.
Jack’s journey has been that of “two steps forward, one step back”. After two failed extubations (one purposeful, and one considered “self-extubation” – they don’t call him Super Jack for nothing), chest X-rays revealed that, on top of heart functioning, Jack’s lung functioning was poor. It was later determined that Jack contacted Legionella, which requires a specific antibiotic. Armed with this knowledge, doctors were able to effectively treat the lung infection and he was finally able to tolerate extubation on February 3rd.
While there was some hope offered along the way that Jack might not require surgery for a year, the daily goal was to keep Jack on track, gaining weight and building strength. At the end of February, Jack’s doctors determined that he would likely require (and be ready for) surgery soon. Surgical options were discussed with Paul and Angie, though the surgeon was not entirely sure which procedure would be performed until he had a better visual on Jack’s actual heart functioning.
On March 1st, at just shy of 8 weeks old, Jack underwent open heart surgery. Dr. Nigro, with the assistance of a talented medical team, performed the Ross Konno procedure. Jack’s pulmonary valve was moved to his aortic valve position, as this valve will be able to grow with him. In place of Jack’s pulmonary valve is now a Contegra valve (made from the veins in a cow). Jack’s mitral valve was also expanded, though it will require additional expansion as he grows. Post-op, Jack has made strides that are nothing short of miraculous. Two days after surgery, his sternum was closed (as it was left open to allow for inflammation). In the following days, Jack’s central line, catheter, and chest tubes were removed. He was extubated, which he tolerated wonderfully. Nurses continue to wean drugs and Jack is back to the good stuff – breastmilk!
The Lorton family has learned to take things day-by-day. They long for the day to bring Jack home and experience those “tiresome” parental responsibilities, such as changing diapers and cleaning spit-up. They will gladly assume those responsibilities with a healthy and thriving baby boy in their home. Alexi can’t wait for that day, too!
Your prayers have carried and continue to carry Jack and his family through this difficult time! Though Jack’s strength and determination has led him down this miraculous path over the past two months, his journey is far from over. He continues to recover from surgery in the hospital. Jack will require additional surgeries in the future, though hopefully not for 1-2 more years. Paul and Angie are in the early stages of preparing for Jack’s transition home. At home, Jack will require specialized medical equipment in order to sustain and monitor his progress over time. It is likely that Jack will also require specialized support in the home, including medically trained caregivers (Paul has already returned to work, and Angie will do so in less than 1 month), speech therapy, occupational therapy, and physical therapy. Jack will continue to require regular medical visits with his cardiac specialists.
Though the Lorton family has medical insurance, their total out-of-pocket expenses will be in excess of $8,000. This number doesn’t account for travel, services, or equipment that Jack will require that are not covered by insurance. With the help of donations, the Lorton family can ensure that Jack receives the best ongoing care without added financial stress. Please help in our efforts to provide the very best care for Jack. His journey has been long and the journey continues, but he is a fighter! Your donation will help diminish the financial burden and focus on the healthiest and happiest future for Jack.
With love and gratitude,
Mallory (Angie’s friend)
Organizer
Angie Lorton
Organizer
Peoria, AZ