Liliana Grace, AKA Lily Pad, has been a fighter from the very beginning.
Lily Pad was our miracle baby after struggling with infertility for many years. We were so excited at the thought of finally having a baby. At 25 weeks, I started leaking amniotic fluid and was rushed to the hospital where I spent three weeks in the hospital trying to
keep her in the oven till at least 30 weeks. She was so anxious to come into this world that she made her grand entrance at 28 weeks weighing only 2lbs 1oz and measuring 12 inches long. Her prematurity resulted in permanent brain injuries. Lily Pad lives with Bilateral Periventricular leukomalacia (PVL) which is a type of brain injury that affects infants. The condition involves the death of small areas of brain tissue around fluid-filled areas called ventricles. The damage creates “holes” in the brain. She also has grade 3 Intraventricular hemorrhage (IVH) which is bleeding into the ventricles of the brain. She also lives with Hydrocephalus which is a condition where the fluid spaces in the brain (ventricles) become enlarged.
Lily spent 86 uneventful days in the NICU. We watched her grow and become very strong. In December of 2012 she was cleared to come home. We were so excited to bring her home, to finally be able to have her next to us. We didn’t care that she had to come home with an NG tube for feeds, Oxygen, and many monitors. We were just glad to have her home. Two months went by and she was really thriving at home. She was hitting all her milestones in spite of her brain injuries. We were able to wean her off oxygen, she was taking in all her bottles, and soon we were rid of all the wires, tubes, and monitors. It was best month of our lives. We were so excited about our future together!
At about 5-6 months, we took Lily in for her DTaP vaccine. All was well but after a couple of weeks she started having episodes where she would stare and hold her breath. Her lips would turn blue and then she would breathe again on her own. The doctors thought she had a bad case of GURD and prescribed her some meds to help her with severe reflux. After a couple of weeks the episodes became more frequent and we found ourselves rushing her to the hospital where she was intubated and spent 2 weeks in the PICU. It was the most terrifying 2 weeks of our lives. They diagnosed her with seizures and quickly started treating her with Phenobarbital. This medication wreaked havoc on her little body. She slept all day, she couldn’t swallow her saliva and started to aspirate. Back came the NG tube, suction machine, and monitors. We were so heartbroken. Her seizures stopped but we lost our little girl in some way. No smiling, no crying, she couldn’t hold her head up anymore. Where did our baby go? After a couple of weeks of pheno, she started having clusters of spasms lasting anywhere between 18 – 30 minutes. We were back at the hospital where she was diagnosed with an aggressive form of epilepsy called Infantile Spasms (IS). Infantile Spasms is an uncommon epilepsy syndrome. It is considered to be catastrophic childhood epilepsy which may cause developmental delays. She also battles CVI (Cortical Vision Impairment), Brainstem auditory dysfunction which affects her hearing, cerebral palsy and a long list of other conditions. They quickly started her on vigabitrin aka Sabril for 5 weeks. Her spasms only became worse. They then started her on ACTH/steroid injections twice a day. Again, we witnessed firsthand how these medications were affecting our tiny girl. She swelled up, had roid rage, we had to stay up with her every night because she was so uncomfortable. After several weeks of injections, we finally reached our breaking point. Nothing was working.
After her very last injection, her spasms stopped. Finally, we had relief….But Lily Pad was never the same again. She had lost all trunk and neck control, she had trouble feeding, and were told we would never be able to feed her orally again. We didn’t care about feeds as long as she wasn’t suffering from seizures anymore. We knew we had a long journey ahead of us but we were ready for it as long as she was seizure free. All was good and quiet for a while. We worked with 5 therapists to help bring her strength back. She started to regain some neck and trunk control and even started eating orally. We started with 5mls a day and now we can proudly say she’s drinking all her bottles! Unfortunately her seizures are back but have evolved to focal seizures. She’s currently on the ketogenic diet for maintenance and Keppra. We’ve also started treating her with a more natural supplement called Holy Basil Leaf Extract and it has helped tremendously.
We recently moved from IL to FL and are hoping to have access to CBD treatment. Her doctors want to try different meds to treat her seizures before even considering CBD which has us very confused. Why wouldn’t you treat her with CBD first, and limit the side effects, instead of trying to treat her with a handful of pharmaceuticals. Luis and I are currently trying very hard to find a doctor that will give CBD a chance before wreaking havoc with pharms…unfortunately we haven’t found anyone yet.
Despite her conditions, Lily Pad has an amazing soul that would melt any heart. We’ve never heard her laugh but her smile is deafening. She is strong and an inspiration to Luis and me, as well as many who follow her journey.
To follow her journey go to www.letterstolilypad.com