The pregnancy was very difficult. The nausea and fatigue was unbearable. Driving in the car to and from school, mom would get sick and Vincent would say "mom, you gotta stop eating all those kids' birthday treats!". The poor students at school would be alarmed when their music teacher would have to quickly rush out of the room. Swelling and weight gain was significant approaching the second trimester. The last ultrasound appointment would show a baby sizing in the very smallest percentile, though our doctor reassured us she was just a "petite thing" and the second pregnancy would be easy. A growth assessment was scheduled for 4 weeks out.
A few days later, and at 25 weeks pregnant, mom was rushed to the emergency room with heavy bleeding. After analyzing vital signs, it was clear mom had severe preeclampsia and HELLP syndrome. As mom became sicker, developing eclampsia, it was decided that mom must deliver to save herself and baby. One week after admission, Maryjane Lorna Fliehman was born via emergency c-section, weighing 1.5 lbs. Dad watched her take her first breath.
Maryjane struggled during her first weeks of life. She caught a bad pneumonia that almost killed her at one month old. Mom and dad knew something was wrong as days went by and she was the only baby in the small baby unit on a breathing tube. Then the only baby on an oscillator. Then the biggest baby in the whole nicu on a breathing tube. Mom and dad received the news that Maryjane has a lung disease called Bronchopulmonary Dysplasia (BPD), lung damage caused by ventilator usage. The "severe bpd" marker came and passed when Maryjane turned 36 weeks on ventilator support.
At 5 months old, Maryjane takes her first plane trip to Nationwide Children's Hospital in Columbus Ohio with her mom, while dad and brother stay in Michigan. C4A nicu, also known at the BPD unit, becomes our new home. Doctors, nurses, and medical staff carefully work with Maryjane to help her grow and develop. At 8 months old, Maryjane had her breathing tube removed and had a tracheostomy.
Even though her lungs seem to have become more healthy during the 11 months of her stay in Ohio, she never found stability. Blue spells frequently occur leaving her diaphoretic, hypoxic and in need of bagging to survive. These spells sometimes last for hours. She frequently falls ill and at times needs heavy sedation and paralysis to recover. She is unable to wean medication or ventilator settings. Further testing found that Maryjane also has Tracheobronchomalacia, a disease that causes her airways to collapse. She is unable to exhale, making her lungs hyper inflated. We are hopeful that if Maryjane has her airway opened, she may be able to have a better quality of life.
After researching possible treatment, her parents found a surgery that is offered at Boston Children's Hospital. Mom and Dad flew to Boston to meet the surgeon in the Esophageal and Airway Treatment Center. The doctor viewed videos and scans of Maryjane and is hopeful he can perform this extensive surgery. Maryjane is patiently waiting for a transfer date for further evaluation and potential surgery at Boston Children's Hospital. Mom, Dad, and Vincent are very hopeful this will change our sweet girl's life.
All donation will go towards Maryjane's medical bills, family travels costs, family living costs away from home, and any expenses needed to provide Maryjane a healthy and happy life. The Fliehman family is extremely grateful for the support, donations, and prayers.
"and though she be but little, she is FIERCE" -William Shakespeare
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