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Baby Lilly’s Medical Needs

Lilly update We went home for around 15 hours and then had to call 911 for  Lilly because she was having trouble breathing . She was air lifted back to children’s- then to Nola. She is having severe malacia episodes to where she breaks out in a cold sweat, turns blue , oxygen and vitals drop and struggles to breathe . Lilly needs 24/7 medical care, and when she does get to come home she will still require 24/7 nurse care from home health.  The home equipment we have is needing to be reevaluated much more than we  thought because the vent is not pushing enough air to open her malacia. Despite the difficulties, I truly believe we’re on the right path. We now have a solid plan of care in place, and though the road ahead is still long, I have hope that Lilly will continue to grow stronger. We’re so thankful for a medical team that listened, validated our concerns, and helped us troubleshoot. This journey has been a struggle—physically, emotionally, and financially. But we are holding on to our faith. We prayed for guidance, and though this road is harder than we ever imagined, we know it’s the one we’re meant to be on. Please continue to pray for Lilly. Pray for her growth, for her strength, and for all of us as we navigate this challenging time. We are so grateful for the love and support from our friends, family, and the community. Thank you, Jesus, for showing us the way. This journey may be difficult, but we trust that we’re not walking it alone.

Our precious baby girl, Lilly, was born on November 25, 2024, with a series of complex medical conditions that have already required her to fight for her life. Lilly was born with Tetralogy of Fallot with Pulmonary Atresia (TOF with PA), club feet, and Tracheomalacia. After birth, she was immediately transported to Children's Hospital in New Orleans, where she remains in the NICU receiving the critical care