Luca’s Story
The story below is shared from Luca’s mom, Julia — a mother, nurse, and advocate who has fought tirelessly beside her baby boy every step of the way.
“At around 13 weeks pregnant, we learned that our baby boy would likely have Down syndrome. Not long after, my pregnancy became increasingly complicated due to severe intrauterine growth restriction (IUGR) caused by absent end diastolic blood flow that eventually became reversed. I was admitted to the hospital for continuous monitoring for a week before ultimately requiring an emergency C-section. Luca’s chances of survival were very low. We were told to prepare ourselves for immediate intubation and aggressive resuscitation at birth if he survived delivery at all. But on November 5, 2025, at just 26 weeks and 1 day gestation, weighing only 560 grams (1 lb 3 oz)… Luca let out the most beautiful cry. A loud, strong cry that instantly transformed my tears of fear and heartbreak into tears of hope. In that moment, Marc and I knew our baby boy was a fighter. From the beginning, Luca required respiratory support with bubble CPAP and faced many complications related to extreme prematurity. He struggled with significant belly issues including severe distention, constipation, and feeding intolerance. There were many periods where he could not eat and underwent repeated workups due to concern for Hirschsprung’s disease, though he remained too small for definitive testing. There were countless electrolyte imbalances, multiple blood transfusions for anemia, setbacks, long nights, and constant advocating. On January 7, 2026, Luca went for a barium enema study. It was only my second day back at work when I received the phone call no parent is ever prepared for: Luca had coded during the procedure. He required two rounds of chest compressions and emergent intubation. Because there was no code cart in radiology, staff had to run back to the NICU for emergency airway equipment and providers to intubate him. I immediately left work and drove straight to the hospital. At that time, Luca had actually been making progress and we were working toward weaning him from CPAP. Instead, everything changed. Due to the difficult emergent intubation and aspiration during the event, Luca developed aspiration pneumonia and MRSA bacteremia. What was initially expected to be only a few days of intubation turned into four months on the ventilator. During that time, Luca faced repeated atelectasis, severe BPD, pulmonary hypertension crises, generalized swelling, respiratory failure, feeding complications, and ongoing instability. We later learned Luca also had an atrial septal defect (ASD) — a hole in his heart — which significantly worsened his pulmonary hypertension and respiratory status. After repeatedly advocating for additional opinions and consultations, pulmonology recommended reevaluation by cardiology to consider closing the defect. On March 4, 2026, Luca was transferred to the main hospital for cardiac catheterization. That night was one of the longest nights of my life. Luca experienced crisis after crisis. I watched my baby code. He was restarted on nitric oxide for the second time. And ultimately, I had to place him in the hands of the cardiology and surgical teams and pray my baby would survive. The risks were enormous. Doctors explained that closing the ASD could potentially worsen Luca’s lung pressures. They also did not know if they even had a closure device small enough for him, as these devices are typically made for children much older and larger. By the grace of God, Luca’s heart catheterization was successful and his ASD was successfully closed. Even behind the scenes, the fight continued. I spent countless hours advocating for Luca, seeking second opinions, calling hospitals, merging medical records, contacting friends and strangers, and pushing for transfer approval to Texas Children’s Hospital despite significant resistance. Then on March 9th, while driving to the hospital, I decided to personally call the transfer center to see if the physician-to-physician transfer request had finally been submitted. That call changed everything. I was told Luca had been accepted. Transport had already been dispatched. And they needed information for the parent flying with him. I immediately called my husband. He drove in with our children, Ellie and Mateo, and I remember crying so hard saying goodbye to them without knowing when I would see them again. Just hours later, Luca and I were transferred to Texas Children’s Hospital by Kangaroo Crew. We have now been in Houston for two months, and Luca has made tremendous progress. Hirschsprung’s disease has been ruled out. His pulmonary hypertension has resolved on his most recent echocardiogram. He has grown from 1 pound 3 ounces to over 13 pounds. And we are now working toward his very first extubation trial. While rhinovirus recently caused a mild setback, we remain hopeful that extubation will happen within the next few weeks. Although we are incredibly thankful for how far Luca has come, we know this journey is still only beginning. I had only been back at work for about two months before relocating to Texas with Luca, and I have not been home since. Thankfully, we have been blessed with housing through Ronald McDonald House while my husband and children remain back home in Louisiana. I currently pick up nursing shifts through nursing apps whenever possible because we still have bills, responsibilities, and a family to support back home. If financially possible, my greatest hope is to remain by Luca’s bedside for as long as he needs me. I know him best. I know his cues. And I want to continue advocating for him through every next step: extubation, NIPPV, CPAP, high flow, and one day — hopefully — room air.
⸻ As I read Julia’s words, I couldn’t help but think about how much this community once carried me through some of the darkest moments of my own life with Ivy. And now, somehow, Ivy’s legacy continues to reach beyond us. The FaceBook page All About Ivy was never meant to only be about Ivy. It was always meant to become a place where families feel seen, supported, connected, and less alone. Watching so many people come together for Luca and his family reminds me so much of the way Ivy’s Tribe once surrounded us with love, prayers, support, encouragement, meals, donations, messages, and hope when we needed it most.
To every single person who has taken the time to read Luca’s story, donate, pray, share this fundraiser, or simply carry this family in your heart — thank you. Truly. Your kindness matters more than you know. Your support is helping carry this family through one of the hardest seasons of their lives. And to me, that is one of the most beautiful parts of Ivy’s legacy.
With our love always, Sydney & Ivy Irene
The story below is shared from Luca’s mom, Julia — a mother, nurse, and advocate who has fought tirelessly beside her baby boy every step of the way.
“At around 13 weeks pregnant, we learned that our baby boy would likely have Down syndrome. Not long after, my pregnancy became increasingly complicated due to severe intrauterine growth restriction (IUGR) caused by absent end diastolic blood flow that eventually became reversed. I was admitted to the hospital for continuous monitoring for a week before ultimately requiring an emergency C-section. Luca’s chances of survival were very low. We were told to prepare ourselves for immediate intubation and aggressive resuscitation at birth if he survived delivery at all. But on November 5, 2025, at just 26 weeks and 1 day gestation, weighing only 560 grams (1 lb 3 oz)… Luca let out the most beautiful cry. A loud, strong cry that instantly transformed my tears of fear and heartbreak into tears of hope. In that moment, Marc and I knew our baby boy was a fighter. From the beginning, Luca required respiratory support with bubble CPAP and faced many complications related to extreme prematurity. He struggled with significant belly issues including severe distention, constipation, and feeding intolerance. There were many periods where he could not eat and underwent repeated workups due to concern for Hirschsprung’s disease, though he remained too small for definitive testing. There were countless electrolyte imbalances, multiple blood transfusions for anemia, setbacks, long nights, and constant advocating. On January 7, 2026, Luca went for a barium enema study. It was only my second day back at work when I received the phone call no parent is ever prepared for: Luca had coded during the procedure. He required two rounds of chest compressions and emergent intubation. Because there was no code cart in radiology, staff had to run back to the NICU for emergency airway equipment and providers to intubate him. I immediately left work and drove straight to the hospital. At that time, Luca had actually been making progress and we were working toward weaning him from CPAP. Instead, everything changed. Due to the difficult emergent intubation and aspiration during the event, Luca developed aspiration pneumonia and MRSA bacteremia. What was initially expected to be only a few days of intubation turned into four months on the ventilator. During that time, Luca faced repeated atelectasis, severe BPD, pulmonary hypertension crises, generalized swelling, respiratory failure, feeding complications, and ongoing instability. We later learned Luca also had an atrial septal defect (ASD) — a hole in his heart — which significantly worsened his pulmonary hypertension and respiratory status. After repeatedly advocating for additional opinions and consultations, pulmonology recommended reevaluation by cardiology to consider closing the defect. On March 4, 2026, Luca was transferred to the main hospital for cardiac catheterization. That night was one of the longest nights of my life. Luca experienced crisis after crisis. I watched my baby code. He was restarted on nitric oxide for the second time. And ultimately, I had to place him in the hands of the cardiology and surgical teams and pray my baby would survive. The risks were enormous. Doctors explained that closing the ASD could potentially worsen Luca’s lung pressures. They also did not know if they even had a closure device small enough for him, as these devices are typically made for children much older and larger. By the grace of God, Luca’s heart catheterization was successful and his ASD was successfully closed. Even behind the scenes, the fight continued. I spent countless hours advocating for Luca, seeking second opinions, calling hospitals, merging medical records, contacting friends and strangers, and pushing for transfer approval to Texas Children’s Hospital despite significant resistance. Then on March 9th, while driving to the hospital, I decided to personally call the transfer center to see if the physician-to-physician transfer request had finally been submitted. That call changed everything. I was told Luca had been accepted. Transport had already been dispatched. And they needed information for the parent flying with him. I immediately called my husband. He drove in with our children, Ellie and Mateo, and I remember crying so hard saying goodbye to them without knowing when I would see them again. Just hours later, Luca and I were transferred to Texas Children’s Hospital by Kangaroo Crew. We have now been in Houston for two months, and Luca has made tremendous progress. Hirschsprung’s disease has been ruled out. His pulmonary hypertension has resolved on his most recent echocardiogram. He has grown from 1 pound 3 ounces to over 13 pounds. And we are now working toward his very first extubation trial. While rhinovirus recently caused a mild setback, we remain hopeful that extubation will happen within the next few weeks. Although we are incredibly thankful for how far Luca has come, we know this journey is still only beginning. I had only been back at work for about two months before relocating to Texas with Luca, and I have not been home since. Thankfully, we have been blessed with housing through Ronald McDonald House while my husband and children remain back home in Louisiana. I currently pick up nursing shifts through nursing apps whenever possible because we still have bills, responsibilities, and a family to support back home. If financially possible, my greatest hope is to remain by Luca’s bedside for as long as he needs me. I know him best. I know his cues. And I want to continue advocating for him through every next step: extubation, NIPPV, CPAP, high flow, and one day — hopefully — room air.
⸻ As I read Julia’s words, I couldn’t help but think about how much this community once carried me through some of the darkest moments of my own life with Ivy. And now, somehow, Ivy’s legacy continues to reach beyond us. The FaceBook page All About Ivy was never meant to only be about Ivy. It was always meant to become a place where families feel seen, supported, connected, and less alone. Watching so many people come together for Luca and his family reminds me so much of the way Ivy’s Tribe once surrounded us with love, prayers, support, encouragement, meals, donations, messages, and hope when we needed it most.
To every single person who has taken the time to read Luca’s story, donate, pray, share this fundraiser, or simply carry this family in your heart — thank you. Truly. Your kindness matters more than you know. Your support is helping carry this family through one of the hardest seasons of their lives. And to me, that is one of the most beautiful parts of Ivy’s legacy.
With our love always, Sydney & Ivy Irene
Organizer
