Our Story

Welcome to our blog!  We started writing here to keep our friends and family informed about our daughter Battley.  She was born in March 2012 with an extra 18th chromosome.  Doctors don't have much hope for babies to survive more than hours or days with Trisomy 18, but Battley has proven to be stronger than those statistics.  She is a miracle!

We found out about her having T18 when I was around 20 weeks pregnant.  Our lives have been forever changed by being able to meet other families of children with T18.  These friends helped us before she was born and gave us hope when we had little to none.  Our goals for Battley were to hold her for as long as we were given and have her know she is loved.  Beyond the minutes we thought we may have with her in the hospital we could only dream of taking her home to be loved there.  After only 6 days in the hospital our dreams came true.  As of today, she is over one year old!

In the past we have dealt with apnea (T18 babies often have this when their brains sort of forget to tell their bodies to breathe), but Battley hasn't had any spells of this since around 6 weeks.  She has also had seizures...we think...instead of submitting her to many tests, we chose to put her on a medicine to control them.  It works well...not one seizure since.

Battley does have a large VSD (hole in her heart) that we manage with medicine now since she is technically in heart failure.  She also has a cleft palette (the roof of her mouth is open to her nasal cavity).  Because of this and other reasons she is tube fed.  If you read our blog you will figure out quickly that that tube is NO BIGGIE.  She doesn't seem to mind and neither do we...we could have many machines (currently we only use a feeding pump).  This gal is a HUGE blessing...we totally love her!  And she very obviously feels loved!

In November of 2012 we found out that Battley has also developed lung disease.  This sounds bad, but it is actually good for her.  It reduces the amount of blood that can flow back to her lungs.  We were told for the first time that instead of "you may have only days with her" that we should prepare to have her for much longer!  And so the scrambling to find a new "normal" began.  We are over the moon excited.  In Jan of 2013 she was discharged from Hospice.  She is no longer on any medicines for her heart and takes only Prilosec for reflux.  She started therapy (PT, OT, and Speech) in February and now sleeps in her own nursery! When she was 11 months old she had a g-tube placed and a Nissen Fundoplication.  Thanks for reading!

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