I may not sit, roll, walk or speak but I AM SO LOVED
By Jessica Laurie
Hello! My name is Janyia. I was born March 12, 2013. I would like to share my journey so far with you all. My battle started before I was born. Here is my story….
My mommy found out she was going to have me in the summer time and she was shocked. First OB appointment was my ultrasound and they picked up a very low heartbeat so mommy had to go back the next week for another ultrasound which was normal.
Mommy would have unusual pains throughout the pregnancy and would inform doctors, but they didn’t seem to look into it. If they had they would have discovered I was a twin but my twin was stuck in mommy’s left tube.
Weeks growing was getting tough. The night of September 20th, 2012 I was 13 weeks along and there was a horrible burst of pain. I could hear medics asking questions and a very loud ride. At the ER, mommy’s blood pressure kept dropping and her pain was uncontrollable, it was getting harder for her to breathe. After over a dozen doctors and nurses came and went and a blood transfusion, my great grandma told them something needs to be done. I remember hearing mommy telling Grandma she was dying as we were moving again. Grandma said GOD is with you. That was the end.
Trauma took us back into surgery cutting my oxygen and blood flow off for 29 minutes to try to save mommy. She was cut from breast bone to pelvic bone. Here is when they discovered my twin which ruptured mommy’s tube causing bleeding.
This is called a Heterotopic Pregnancy. Mommy’s chances of surviving were slim and none was for me, the baby inside the womb.
But GOD had a plan and we’re both here.
Through recovery and continuing my stay inside, mommy was told a lot that she would loose me anytime, but she knew I wasn’t going anywhere.
Due to the oxygen loss I wasn’t able to move from the waist down. My 20 week ultrasound showed clubbed feet and Arthrogryposis, diagnosed at birth. Then 36 weeks my brain was filled with fluid. Mommy and my specialist OB cried together and I was going to come out early via c-section. Meetings, tests and more specialists over the next week. The night before my arrival mommy spoke to me telling me she won’t be upset if I can’t fight anymore and she loves me more than anything.
I was born at 12:01 and rushed to NICU, didn’t get to see my mommy yet. Doctors, Nurses, Tests, Breathing Tubes, IVs, etc were my first moments. Mommy finally came to see me. It was hard to hold me due to all the tubes and my legs being bent in upwards. Therapy started and so did not being able to feed by mouth. I had my first surgery at 2 weeks old for placing a feeding tube. Almost 2 weeks later I came home to my family, mommy, brothers and sister.
Between then and now I have endured many surgeries, two being brain surgeries, and require more. I have had tests, CAT scans, MRIs, EKGs, EEGs, sleep studies, genetic testing, casting/braces, Tubes changed, breathing treatments, oxygen PRN, am/pm medications, ear tubes and so on. I have seizures and sleep apena also. I require daily therapy, a home nurse and being hooked to to my feeding pump 20 hrs a day. I have been hospitalized countless times and was put back on the vent in January 2014. My specialists I see routinely are my primary, GI, neurosurgeons, neurologists, pulmonary, ENT, orthopedic and eye doctor.
I’m not expected to accomplish much more due to my brain, spinal tissue and nervous system damage nor was I expected to survive.
I am here and doing amazing.
I may not sit, roll, walk or speak but I AM SO LOVED ♥
You can learn more about me and my adventures on my Facebook page.
Read this article in Arabic: حيوا-السيدة-العمياء
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