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Rosalie Hope Johnson
6/11/2016 Latest post:
After a two month battle with Pulmonary Lymphangiectasia, our baby girl Rosalie Hope Johnson finished her race here on earth on August 20th, 2016! She got the gold medal!
Late in the evening on Thursday, June 9th, our girl Rosalie was diagnosed with Hydrops, which is a fancy term that means there is unusual swelling/fluid retention in more than one area of Rosalie’s body. Hydrops is mostly a symptom of a deeper issue, and until the deeper issue can be identified and treated, babies with hydrops typically get sicker and sicker while inside the womb.
The specialists at the Children's hospital in Saint Paul decided to give her steroids necessary for accelerating her lung development, induce labor, deliver her, and bring her straight to the NICU to begin supporting and sustaining her life, while looking to diagnose the underlying cause of the Hydrops.
Several weeks later, she was officially diagnosed with Primary Generalized Lymphangiectasia, an extremely rare congenital disorder characterized by dilated lymphatic vessels. The doctors tried experimental treatment options that had been found effective in only a handful of other case studies. We were hopeful and prayerful as we waited to see if it would work for Rosalie.
After many ups and downs of the doctors working to keep Rosalie stable, one bad "down" day led to the discovery that the small blood clot at the tip of her PICC line had grown significantly larger, even while she was on blood thinning injections. This clot was blocking her kidney function, which left no reasonable options for further treatment.
Rosalie passed away peacefully after getting to be held and prayed for by lots of loved ones. She even opened her eyes (after she had been too weak to do so for several days) the moment she breathed her last earthly breath.
We love Rosalie and look forward to our reunion with her on the New Earth someday, where there is no more Lymphangiectasia, and no more chest tubes, shots, or ventilators.