My pregnancy was already a high risk pregnancy as an auto immune illness sufferer myself,but baby girl got such detailed care from a high risk obgyn team and always looked great! She tried coming early 3x and finally arrived via C-section at 35 weeks on August.2,2012! On day 2 of her being in this world, they heard a heart murmur,but after further examination, everything seemed perfectly fine. We went home and dove head first into first time parenting! I noticed immediately my baby wasn’t eating, wasn’t having a bowel movement,was always crying in pain/discomfort,was always vomiting,was always choking . After seeing her pediatrician over and over again, I was always explained that these are normal newborn things as their bodies adjust and grow , just hang in there because it’ll all get better soon and that it was normal. It never got better. I started noticing a funky heartbeat,a really low sleeping body temperature (95.7 once!), She would stop breathing in her sleep off and on all night… needless to say I never slept when she did and stayed by her side to shake her every time she stopped! Again I was told I was a new first time over reacting mom who simply isn’t seeing things right ,she was fine . Finally after a year of trying constant constipation remedies,losing sleep over her sleep issues and overall just being scared to death of why my baby wasn’t eating, talking, walking, standing, going poop,etc at all still…they ordered blood tests. Those tests came back with an elevated red blood cell count,5x higher than it should’ve been. They were concerned about it possibly being leukemia and sent us to children’s Los Angeles for the hematology-oncology department. That came back negative,thank God, and left us to a cardiac MRI. This is where they not only discovered her CHD’s,but an incidental finding if chiari and syringomyelia. Again it appeared to be an unidentifiable mass on imaging and they feared cancer . We were sent to a neurosurgeon and cardiologist suddenly. This is when cancer, again,was cleared and the CHDs and chiari and syringomyelia were diagnosed. We were told she’d need emergency surgery on her brain and spine and after that, open heart surgery. We were sent to a geneticist that diagnosed after thorough testing that she had a genetic connective tissue disease that has no cure and would leave her with several specialists, surgeries, physical and occupational therapy and even in behavioral health for the trauma this would all undoubtedly bring upon such a young life. Since then she has fought hard and long,adjusted a bit and held on tight with us along the way as we navigate the continuous fight for her life and quality of life for years (and hopefully years and more years) to come! It’s scary and trying but it opens us to a bond and love with my only child I never knew possible. Her love is unwavering and unconditional and I am so thankful for this beautiful soul in my Universe ❤️❤️❤️ she is now 7 and still fighting and amazing me everyday,she is my warrior princess!

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