+4 votes
Shelby's Story: Living with Trisomy 18
October 1, 2013 Shelby Lynn made her appearence into this world weighing 4lbs an 16 1/2 inches long.. Such a tiny beautiful little girl. My doctor handed her to me for the few seconds I was allowed to hold her an get a couple quick pictures before he took her away! I knew a that moment something wasn't right !! :( she wasn't crying the normal loud newborn baby cry. It was a quiet small unique cry an she was having difficulty breathing. But what wrong?? I had such a great pregnancy and every ultrasound was perfect!!! She was rushed to the nursery where her pediatrician was to help her. After so long of him doing what he could and not getting very far he decided she needed to be transferred to a level III NICU. It was over an hour away but we agreed because we want what's best for not one but all three of our kids. At that point my doctor had discharged me so we could go be with Shelby at the other hospital.. Upon arrival the NICU doctor sat us down an explained that Shelby wasn't doing very well and the outcome wasn't good for her. She told us she has markers for either Trisomy 13 or 18 but we wouldn't know for sure until we got the blood results back. Trisomy what??? How she's so perfect in every way!! She showed us her markers for it. Her ears are smaller and lower, she has an ASD (atrial septal defect), VSD (ventricular septal defect) meaning holes in her heart, cleft pallet clenched fist and rocker bottom feet, cyst on her brain and fluid around her kidneys.. "She's going to die! Trisomy babies do not survive!" Is what they kept telling us!! "She will never make it to 15 days so you need to make a 'decision'. She is incompatible with life. Meaning her body is fighting against itself to struggle to survive!" We got so tired of hearing that over and over and over!!!! Especially when Shelby was doing great!!! All her labs were coming back good! Her vitals were good! She did have her minor set backs like she's not able to eat by mouth do she has an NG tube. She is on oxygen at all times. And she's had 4 blood transfusions. Bronchialitis, rhinovirus and pneumonia causing her to go into heart failure.. We sat by her side waiting an waiting for her to pass just like the doctors new she would.. 3 weeks later she was still with us an we got tired of that hospital giving us the run around so we had her transferred 3 hours away!! What a change!!! They redone all her ultrasounds, X-rays and blood work. Her VSD is very large but her ASD is very tiny! She don't have cyst on her brain, one of her ventricles are a little bigger and she has no fluid surrounding her kidneys but a small diolation in the left!! After being there for two weeks and getting the best treatment ever she came home!!! Our baby girl who wasn't suppose to make it past 15 days was coming home after staying in the NICU for 41 days!!!! She's had a few hospital stays since coming home but she's holding her own very well!! Her daddy, two brothers and I thank God every day for her!! She's a blessing and very loved by so many people!! :)

485 views May 1, 2016
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