June 16, 2011. Our story

January 24, 2011 began a journey in life I never thought I would have to take.  On this day, we were blessed with a child born with down syndrome and a congenital heart defect called Complete AV canal defect.  Apparently this defect is common among children with Down Syndrome, however, I have never heard about it before now.  Her name is Ellie Mae.  She is 5 months old now.  We have been struggling to help her gain weight.  Due to her heart condition she is on heart medications and her heart is working as if she is running on a treadmill non-stop.  When she was born she was 7lbs 9oz.  At 5 months old she is 10lbs 5oz. It is hard for me to look at this little baby and not worry.  My other two children were well into the 20lb mark by 5 months old.  Little Ellie Mae is still in 0-3 month clothes and still sleeping in her bassinet.  It is amazing to me to watch her stay so little.  I actually get to have a baby for a longer time then most people.  Anyway, she is going to have to have open heart surgery on June 28, 2011 at 7:30am.  It is soo hard to look at her and imagine them "cutting" into her to fix her heart.  I have er on every prayer chain in the whole world that I could imagine.  I tried to save her myself.  I need to remember this is God's will not mine.  One of the hardest things for me as we are walking through this is the unknown.  What is to come.  So I decided to create a blog to help people stay updated on her condition throughout the entire hospital stay and to help someone else who might be facing the same thing we are in the future.  I will try to post something on here again before the surgery and once we are in the hospital I will post daily and post a picture of her progress.  Please feel free to post comments on here I will try to answer them in a timely fashion.  Thank you for your continued prayers and for loving our family soo much.  We all need the prayers.  This is going to be a rough next month or so.  Sorry if this is a rambling mess...it is just a snap shot of how my mind is functioning at the present moment.

The following is the information and updates we posted on a prayer chain request website that gives a little more insight into the world of Ellie Mae

2-10-11
Ellie was born Jan 24, 2011 and she has Down Syndrome and a congenital heart defect called Complete AV Canal Defect.  This is a heart defect that will require open heart surgery sometime in early June 2011.  Please place her on every prayer chain you know...till we can get the whole world praying for Ellie...Lord please heal her...put her heart back together...Thank you for letting us have her here with us...please continue to allow Ellie to touch everyone the way her little face has already done...
You can not imagine the terror I feel knowing that my little baby girl is going to have to face this massive surgery in June. It will be complete open heart surgery. I wish I could have the surgery for her...I pray that the Lord heals her either through the dr hands during the surgery or completely so she doesn't even have to have the surgery...Thank you for extending my prayer request...looking into her beautiful eyes knowing that everyday is a gift and praying to have her again tomorrow...Thank you LORD for letting me barrow your angel...

3-10-11
ELLIE UPDATE: She is doing well...she is gaining weight and growing but the Dr. are thinking we are getting closer to surgery...which we think will be in June or sooner depending on her...because she is starting to show signs of heat failure.  Thank you...please continue to pray for her!! THANK YOU SOO MUCH for passing my prayer chain on!  May GOD BLESS YOU ALL!
Here is some more details of Ellie's conditon:

ELLIE UPDATE 4-8-2011
Ellie's surgery is still scheduled for Early to mid June.  However, God's hands have been on her as she is not having any major health issues and she continues to grow..she is over 9 pounds now...God also gave my best friend a vision that Ellie will be healed and in her visions there were no signs of down syndrome.  I pray everyday that God heals her heart so she doesn't have to go through this horrible surgery...what a testimony it would be to proclaiim the healing of a condition that can not be healed without surgery....LORD I know all you have to do is think it and it is done...please let it be your will...
THank you everyone for your continued prayers


Ellie Update 6-6-2011
Still waiting on the surgery date, the dr said 2 weeks ago that it would be in 2 to 3 weeks.  The anxiety is killing me.  I pray that se doesn't need this surger, and if she does I pray for a quick and painless recovery...and to ease my worry...Praise the Lord she has been doing so well.  She is 10 1/2 pounds and 22 1/2 inches long...Thank you all for your prayers...May God Bless you all!!