Liliana Johnson

First post: May 16, 2021 Latest post: Jul 19, 2021
Aloha Family and Friends,

         As you probably know, our 3-year-old daughter, Lily, has a complex Congenital Heart Defect (CHD). She has already undergone two open heart surgeries—one at five days old, and the other at about five months. She is our little miracle and she blows us away with her strength, bravery, and joy in spite of her heart condition and the challenges it brings into her life! We have also been so encouraged and supported by you guys, our community, who have prayed for us, cried with us, rejoiced with us, sent uplifting messages, and even given generously throughout this process to help alleviate the financial burden of medical and relocation costs for Lily’s treatment at Children’s Hospital Los Angeles (CHLA).

         It’s now time for the day we knew would come, for her third (and hopefully final) open heart surgery in the series of innovative and life-saving procedures for her type of heart condition (if you want to geek out on the medical/scientific details, check out this video made by an amazing family whose son has the same CHD as Lily, and who we actually have the privilege of knowing through a chance encounter at CHLA-- ( ).

         We are trusting that the Lord will take care of Lily and of us as we walk through these difficult times ahead. Surgery is scheduled for June 21, with appointments, consultations, and a catheter procedure set for the week before—all at CHLA. We anticipate Lily to be hospitalized for a week to ten days after surgery, and then will need to stay around the Los Angeles area until she is cleared for travel at a follow up appointment. We are doing everything we can to prepare logistically and to support Lily emotionally to be as ready as a 3-year-old can be when facing such an invasive and difficult surgery and recovery.

         We are asking for your prayers, and we are hopeful that we will have good news to share throughout the process here on this site (though we will be honest about the hard things as well). Please pray that Lily will tolerate all of the medical interventions ahead with resilience and calm, that the surgeon and entire medical team will have divine wisdom and that their exceptional experience and knowledge would serve them well in Lily’s case, that we will never lose hope or give into despair and anxiety, for protection against emotional trauma for Lily on top of the physical trauma that she will endure, for minimal pain and discomfort for Lily, and that she will recover quickly with no complications!

         We will do our best to balance being present with Lily while she is hospitalized (especially since no other visitors are currently allowed), and processing with and updating our support community here.

God bless you all, and thank you for your love, care, and support

-The Johnsons