BiographyLillie-May was born at 23wks weighing 530g. Due to her very early arrival we were told it was unlikely she would survive. Lillie has had many hurdles to get where she is and we have had to fight for her right to her life from day one.
Lillie has needed well over 40 operations in her life and has had to fight on PICU 4 times in her short life already. Lillie has Cerabral Palsy due to a grade 3 IVH at birth, Chronic Lung Disease which requires ongoing oxygen still at the age of 4, Vocal Cord Palsy requiring tracheostomy, Cardiomyopathy brought on by a life-threatening episode. Bright/Cystic Kidneys which may result in requiring a kidney transplant in the future, level 3 Rop which resulted in eye lasering.The list goes on.
Lillie fought from birth for her life to finally come home on oxygen and 2 days later she had removed her nasal canulas resulting in a cardiac arrest, after fighting on PICU for a week she came home again.
Lillie's third fight for her life was about a year later when she had developed a temp on a Friday night, this being the first time she had ever had a temp at home we thought she just had a normal viral illness. Although she didnt get better she didnt get worse so we decided we would get her seen Monday morning only to have all her alarms beeping at us. Lillie had drifted into a coma in her bed, her bowel had burst and her body shut down. I remember being told their was no more they could do for her but she fought back and shocked all. This episode left Lillie with further complications - she required a stoma and her abilities where afected even more.
Feb/March this year was Lillie's fourth battle she picked up almost every super bug going, this was the worst of all the fights and Lillie has not recovered fully from this. We and the doctors fear Lillie's body has taken so many knocks from these episodes that leave their mark that her body won't take much more.
Due to all her health needs Lillie is extreamly malnourished resulting in not being able to maintain her temp and her hair is falling out, her veins are so damaged she has had ports ect but she has had that many lines they fear the one in now is the last.
My little miracle is a bright happy smiley girl despite all this and because she has such a fight in her we can't be sure when but that at some point her body will be done, the fear is that this will be this winter as she picks up such severe infections and that with the malnourishment and cardiomyopathy her body is not as strong as it once was.
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