Wonder Baby Who Was Given Just One Day To Live, Turns 2 As She Fights Rare Condition Like A Hero


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Little Eden Sue was born with a cystic hygroma, a condition in which a cyst, or a group of cysts, are found mostly in the neck. They are caused by an error in the development of lymph sacs and lymph vessels as the baby develops during pregnancy. According to theChildren’s Hospital at Vanderbilt, “By the end of the fifth week of pregnancy, the baby’s lymphatic tissues form as lymph sacs. The first to appear serve the chest, arms, neck, and head. They sprout a network of channels called lymphatic vessels that maintain fluid in the baby’s body and carry fats and immune system cells. When a problem occurs between the veins and developing lymph sacs, the sacs expand with fluid and partially or completely block this vessel system.” It is this condition that led doctors to tell Eden’s parents, Taylor and Chelsea Jones, that their daughter would not survive for more than a day after she was born. 

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In a blog post uploaded to Love What Matters, mother Chelsea Jones described Eden Sue’s birth and the events since. She wrote, “‘The growth is very large and there’s a chance the baby may not survive.’ The only words engraved into my mind that morning. ‘But as long as the baby was inside me, she was fine because I was breathing for her.’ My unborn baby had a cystic hygroma; the large cysts were compressing her airways, which could have led to potentially fatal breathing problems at birth. The only way to try and get her out safely was through a C-Section in a room full of doctors, Pediatric Ear, Nose and Throat (ENT) surgeons, and NICU nurses.”

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She continued, “It was decided they would deliver Eden at 39 weeks (a week before my official due date). The night before she came, we were up late. I was so anxious. I cried so many times that night, I was so scared of the unknown. How could I be excited when I didn’t know what was going to happen to our baby? I felt a whirlwind of emotions, I was SO excited but more fearful. Will she survive? Will she be breathing? Will I get to see her before they take her? There were so many things going through my mind it was impossible for me to go back to sleep. So, I got out of bed and got ready for one of the biggest and most important days of my life.”

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“Taylor was too shaky to drive us to the hospital; neither of us was in the right frame of mind. So Taylor’s mother and sister took us. I was given an IV, and they put monitors on my belly to observe the baby. It was strange, sitting there just the two of us, waiting to be rolled back to the operating room. We managed a few nervous smiles and laughs. We kept talking and wishing that we’d soon be a family and that our baby girl would be okay. I wasn’t nervous at this point. I tried to switch off from what was happening, otherwise, I would have gone into complete frantic mode. I don’t think it had quite hit me yet. Just before 10 AM, the OB-GYN came in to check Eden was still breech. She asked if I had any questions. Of course, I had a million of them, but I didn’t ask one,” she explained.

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Though Chelsea was surrounded by a sea of doctors and nurses unlike with other births, Eden Sue was born “like some miracle.” The mother writes, “I heard the most beautiful loud cries! I can’t even tell you what I felt at this moment in time, everyone was in complete shock. Our baby was here, AND she was crying, just like some miracle. No one was expecting it and even some nurses began to cry with us. I was in complete disbelief, it all felt so surreal. I have never felt a flood of joy like I did that moment we heard our daughter cry. Something we were told was unlikely going to happen, even though I spent 9 months praying it would.”

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Chelsea had a 6-hour birth and was not permitted to see her first daughter until medical requirements were completed. Once they were, she saw her baby for the first time. “I was moved from the bed into a wheelchair and was wheeled into the NICU,” she explains. “I was finally able to gaze at our baby through a plastic baby incubator – and although there were wires all over her beautiful new skin and into her tiny little nose, with tape securing them down. They never once stole who she was. She was beautiful even with all those tubes and wires, and I just couldn’t believe she was mine. I stroked her head, staring into her tiny incubator and told her how much I loved her. She’s was our miracle baby, just like the NICU team reminded us repeatedly. After a traumatic pregnancy, I never allowed myself to become overly optimistic, especially since I was told to prepare for the worst, so I just couldn’t believe our beautiful baby was there in front of my eyes.”

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It was then time to take Eden Sue home. Chelsea stated, “The weeks that followed were long and slow, and at 7 weeks old Eden was admitted into Noah’s Ark Children’s Hospital, where we spent nearly a month. We did our very best to get her home. We fought medical teams and proved our worth. We learned how to care for our daughter beyond the requirements of any parent. We were medically trained. We knew more than some doctors did about her condition, about her cystic hygroma.”

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“All we knew were hospital walls, MRI scans, and car journeys. I cried every day. We couldn’t have gotten through that time without our family visiting every day. We loved her so much then, as we do now. So much has changed. She came home, and it was a miracle. She defied odds. She proved people wrong. She got rid of tubes and wires like they were nothing at all. We never expected it, but she DID IT,” Chelsea affirms. 

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Now, Eden Sue is the healthiest – and perhaps most adorable – little 2-year-old. Chelsea writes about her experiences as Eden Sue’s mother on her parenting blog A Little Bit Of Eden. On International Women’s Day, she wrote to Eden: “I hope you will continue to be the kind-hearted person you are and know that being kind is always better than being ‘popular’; I wish for you to know how unbelievably beautiful you are, and that beauty has nothing to do with the way you look or your size (except the size of your heart). Beauty is whatever YOU want it to be, don’t be too consumed with what people tell you it is. Forget the labels. Be it the ones on your clothes or the ones people put on you, they don’t matter. I wish you never take things for granted; that you make a difference in the world, leaving it a better place than when you entered it; I wish you always be kind, to rise above pettiness and forgive your enemies (nothing will bother them more) and forgiveness will set you free. Believe in miracles; for you are one yourself.”

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source: life.shared.com

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