Emma, our little Precious Girl

Let me start off by saying that Emma is so much fun!  She amazes me each day with things that she picks up on and how much she loves interacting with us.  She brightens our days!  I have had several long days at work here lately and what is so amazing is how she can take any bad or long day I have had and cheer me up just with a smile, or a reaching up towards me, or a laugh, hug, etc.!  She knows her mommy and daddy oh too well and the ways in which she can make us happy, oh and the ways that she can push us to get what she wants! ;)  But she has been a blast at home and she loves being at home just as much as we do.

Speaking of home, as some of you are aware, Sarah, Emma, and I bought a house in Texas.  (I wont put the address on here but if you would like it, just email Sarah at sarah_ecutiger1114@yahoo.com)  It has been a great, stressful, amazing experience getting into this house.  It is our first new home!  Yay!  We have FINALLY moved everything in and are just unpacking and mainly organizing, the oh so fun phase!

As you read below, Emma's previous echo showed a little decreased heart function.  Our doctor was not too concerned by this, but wanted to watch closely.  We talked below about a medication, Enalapril, to help her blood pressure out which he thought may be a driving force in why it looked the way it did.  It was scary thinking about her heart not working as well.  You think about all the what ifs? and whats next?  Finally, we decided, as we waited for the next echo, we would just lift our concerns and frightened emotions up to God in prayer!  Her heart echo was a couple of weeks after the initial results.  After the echo was over, we got some good news.  Her heart function had improved slightly which put her basically back to her baseline!  Yay!  Definitely an answered prayer!

All in all, we are just enjoying each day with have at home and each day we have with our sweet little girl!  Going on walks outside, playing in Emma's room and game room upstairs, and so many more fun things.  Sarah even slid down the slide on our communities swing holding Emma!  So yes, we are enjoying life with our little girl!

We appreciate so very much all the thoughts and prayers and look forward to hopefully updating on here again soon!

God is good, all the time.  And all the time, God is good!

 

CHD Awareness Week

CHD Facts

•                Congenital Heart Defects are the #1 birth defect worldwide

•                Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide

•                About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States (approx. 40,000/year)

•                Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects

•                Each year worldwide 100,000 babies (under one year old) will not live to celebrate their first birthday

•                Each year in the United States approximately 4,000 babies (under one year old) will not live to celebrate their first birthday

•                The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year

•                Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research

•                The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD

•                Though research is ongoing, at least 35 defects have now been identified

•                Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood

•                It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications

               Facts From ~ http://www.itsmyheart.org/chd-information/chd-facts/  

Emma is a CHD baby.  Emma was born on October 4^th 2010 with a severe heart defect called Hypoplastic Left Heart Syndrome with Intact Septum.  According to her cardiologist, this specfic heart defect is ‘incompatible with life.’  What he meant by this is that if undiagnosed prenatally, Emma would not have lived past a few hours old.  However, Emma did survive and after a CRAZY year journey (read here) Emma is alive, happy, and developing despite the ODDS.  I love my little CHD heart hero.

Please join me in spreading awareness during CHD awareness week (Feb 7^th-14^th).

You can help by:

1.    Posting Emma’s Picture as your profile picture this week.

2.    Wear RED in honor/memory of CHD babies.

3.    Donating Time or Money to organizations that help support these babies.

My heart Hero!

Click here to read about a wonderful heart mom poem.....