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Nora Grey’s Lymphatic Malformation Journey

חסר תרגום בשפה עברית. מוצגת שפה אנגלית
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Nora Grey

Meet Nora 👋🏼

Hi! Nora Grey was diagnosed with a Lymphatic Malformation during our 20-week gestation anatomy scan. “Lymphatic Malformations are rare, non-malignant masses consisting of fluid-filled channels or spaces thought to be caused by the abnormal development of the lymphatic system.” Lymphatic Malformations are very rare. About 1 in every 4,000 births. Unfortunately, there is no known cause and no cure. Nora was intubated at birth due to the mass on the right side of her face and neck obstructing her airway. Because of Nora’s critical airway, I could not hold Nora until 36 days after I delivered her. Once she was deemed non-critical, I finally got to snuggle my baby girl. Nora was about 2 months old when we decided tracheostomy surgery was her best option so she could thrive and not be limited to laying in a bed all day. Soon after joining the trach life, we also joined the tubie life, aka, a g-tube. Nora has had one round of Sclerotherapy, which is a procedure that injects a chemical, bleomycin, into the cyst to help shrink it. She also takes Sirolimus, an immunosuppressant to help weaken the mass from continuing to grow as Nora grows. After 103 days, Nora was discharged from Cincinnati Children’s Hospital and we brought her home to be with her 4 older siblings! Nora’s journey is just beginning as she is only 6 months old and has endured more than any child should have to. She’s been under sedation countless times for MRI’s, MLB’s and many x-rays. Nora is learning new things every day. We are currently working on tummy time, rolling over, playing and using both hands and taking milk by mouth! We are so proud of Nora. She has blown us away with how strong she truly is! Her progress since birth has been impeccable and I can’t wait to watch her continue her journey with LM.

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