During my pregnancy with Liel, everything seemed to go smoothly, except for some challenges in the 3rd trimester when I experienced dizziness at work and feared it might be preeclampsia. I also struggled with severe heartburn but persisted, working until the very last day before my scheduled leave. On December 9th, 2024, at 3 in the morning, our precious girl entered the world. Jayson and I were delighted to find that she was a low-maintenance baby, crying only when hungry and remaining content even with a wet diaper. However, on the second day at the hospital, nurses noticed that Liel was breathing rapidly, leading to our NICU admission. She remained there for 5 days while undergoing numerous tests to determine the cause. The diagnosis was Transient Tachypnea of the Newborn, a benign condition seen in infants shortly after birth due to a delay in the clearance of fetal lung fluid. Subsequently, they found a slightly elevated direct bilirubin level, prompting further investigation. Although her initial liver ultrasound appeared normal, we were referred to a Gastroenterologist for a follow-up. During outpatient visits, the GI doctor suspected the elevated bilirubin might be linked to antibiotics administered when she was in the NICU. Despite hope for improvement, subsequent blood work revealed a tripled bilirubin level, leading us to seek evaluation at St. Joseph Children's Hospital. There, a series of tests, including a liver biopsy and different blood works, were conducted, yet the cause of her liver condition remained elusive. Since then, Liel's bilirubin levels have continued to rise, and she has now been referred to the transplant team in Adventhealth Orlando. They did a liver biopsy, genome sequencing, cholangiogram, and bone marrow biopsy. We have undergone a liver transplant evaluation recently and got a high PELD score; now we're just waiting for the board to update us about the transplant list. However, our situation has taken a turn for the worse, with Liel readmitted to the hospital and currently in the PICU, showing signs that her liver may be failing. In the midst of this overwhelming journey, my husband and I are preparing for the challenging days ahead. The transplant coordinator informed us that we'll need to stay near the hospital for 3 critical months post-transplant. Unfortunately, the hospital is an hour and 40 minutes away from our home. With heavy hearts, we humbly ask for any amount of support to sustain the transplant and post-transplant fees for our beloved daughter, Liel. As we face uncertainty, we find comfort in the words of Isaiah 41:10. From the depths of our hearts, we extend our sincerest gratitude. Please continue to keep Liel in your prayers so that they'll find a perfect match for her liver.
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