Alexis Sophia Alves

Alexis’ Story

Jessica Alves-001“Forever an angel – we love you with all of our hearts”

Alexis Sophia Alves, Trisomy 18, Leicester, MA, USA, 1/5/2012 – 9/7/2012

Alexis “Lexi” was born on January 5, 2012.  She was our fourth child and we had had a pretty uneventful pregnancy.  She was born at 38 weeks and 1 day via c-section and immediately the doctors sensed something was not quite right.  She weighed in at 4lbs 8oz and was not breathing well.  She quickly stabilized but was transferred to the nicu for monitoring.  Within hours of her birth several doctors sat down with my husband and I and explained they believed our precious little lady had trisomy 18 and was “incompatible with life”.

We were told she would probably not make it the night and if she did it wouldn’t be long before she passed away.  Everything we were told was negative the doctors focused on all she couldn’t / wouldn’t be able to do.  As her parents we clung to the hope of what she would do.  We kept the hope for her and her life in our love for her – and loved she was.  Besides her trisomy 18 Lexi had a vsd, severe apnea, club foot, and she aspirated during oral feeds.

Thankfully for us and for our family at just two weeks old Lexi came home and began to thrive.  She required a little more attention than a normal newborn but we were all happy to snuggle the little bundle of joy.  Lexi seemed to pick up everything and anything the older children brought home from school and spent several months in and out of the hospital fighting respiratory infections.  After several hospital trips Lexi ended up with a ng tube for feeding and oxygen to help her work a little less hard to breath and a pulse ox machine to monitor her stats at home.  It didn’t take long to get in the swing of things and soon all her extra equipment because just a natural part of our routine – almost second nature.

As we approached summer she seemed to proving the doctors wrong with each and every day.  Lexi learned how to hold her head up, she learned to hold small toys and she most certainly learned to tell all of her family what it was she wanted.  While she didn’t speak words like a typical baby she made her opinions quite known we all knew if she needed a diaper change, to be fed or simply just wanted to be snuggled.  Lexi learned to smile something I was told would never be possible and her smile lit up the whole room.  Her greatest accomplishment was learning who each and everyone of her loved ones were.  She knew her nurses, she knew her aunts, uncles, cousins, grandparents, brothers and sister and most of all she knew her parents.  We spent the whole summer loving on our miracle and making memories that we will treasure for a life time.  Lexi wasn’t a t18 baby or a patient to us she was a sister, a cousin, a granddaughter, and a daughter a joy.

Our bubble burst though in early September.  Labor day weekend we ended up in the hospital for what ultimately would be our last time with her.  Her body was just too weak to fight of the pneumonia and she ended up passing away in my arms on Friday September 7, 2012.  There isn’t a day that goes by that we don’t think of her and wish she was still in our arms.  She changed our lives for better – she will remain in our hearts until we can hold her in our arms again.

“Forever an angel – we love you with all of our hearts”