Our Story

September 16, 2009:  "I want to tell you before one of the nurses says something to you.  I think that your daughter has Down syndrome". 

Ellie Marie--Doesn't she look like a baby Mother Theresa?

Those are the words I hear from Ellie's doctor just after Andrew went home to get some much needed sleep and clean clothes.  Alone, I hear these words and the tears come.  It was not that I was sad I had Ellie.  Goodness no!  My big Mama heart was already filled with so much love for my little girl. It was more that I knew, then and there, that life would be just that more difficult for her.  The risk of heart defects, the need for various therapies, kids teasing her for being "different", the cognitive disabilities.  Also, I mourned for that nonexistent child that I thought we would have as I carried our little peanut in utero for 9 months.

My little girl didn't even have a name yet, but she had a label.

Look at that little Angel

The thing is, I suspected the minute they placed her wiggly body on me after birth.  I saw her little slanted eyes and thought "hum".  Yet, I didn't see the low set ears or the Simian crease so I must be paranoid.  Then they took her away for "her bath & vitamin K shot".  Andrew and I did not see her for over 5 hours because the nurses were "delayed with the bath".  I imagine that while it was 3am and I am frantically googling on my iPod about slanted eyes and microcephaly (small head) the doctors were carefully checking her heart and other body systems.

Even though I saw the signs, we were still slightly in denial until the results of her karotype arrived. Every day I called the pediatrician's office to see if the results came in.  After a while, I requested that they call the lab to check on the results.  Then, at our cardiology appointment, Dr. H says something to the effect of "with Trisomy 21. . . ".  I exclaimed "so she does indeed have Down Syndrome?!".  Poor Dr. H didn't realize we didn't have the official diagnosis yet.

Andrew and I experienced a wide range of reactions from various people.  I will not share the specifics, but "I'm sorry" or "there are surgeries to correct her eye shape" along with a few other responses are not my favorites.  We had a baby!  A baby!  A blessing!  A miracle!  Congratulations are in order.

September 16, 2009: The greatest & most challenging day of our lives.  The day Ellie chose me and Andrew as her parents!


Disclaimer:  While this blog discusses medical conditions, they are related to my experiences with Ellie only.  The information in Chronicles of Ellie Bellie Bear does not replace the care and education provided to/for you or your child's health care providers.  Please realize that all thoughts and opinions are that of my own. I realize that not everyone may or may not agree with me and please know that it is not my intention to offend anyone. 

Medical Disclaimer: The information in this blog is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images and information, contained on or available through this web blog is about my parental experiences with Ellie for general information purposes only. All health questions and concerns should be directed at your medical care provider.

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