CHD Can't Stop Me!

CHD Can't Stop Me!

February 03, 2016

 CHD Can't Stop Me! 

CHD Can't Stop Me!Many of you may know, my youngest daughter Mackenzie was diagnosed with CHD (Congenital Heart Disease) when I was 6 months pregnant. We had absolutely no clue what CHD was, or what to expect. To say this news was devastating would be an understatement, but one thing is for sure we never gave up on Khloe!



1 in 110 babies are diagnosed with CHD every year.  There are many different heart defects, Khloe has a now repaired AV Canal Defect.  In similar terms, her heart formed only one chamber instead of four. She was originally set to have surgery around 4-5 months of life but due to another issue (heart rate constantly in the 200s) she went in at 3 months old.


 
Khloe's First Admitted Stay in the CICUThe first 3 months of her life were so scary! We had many trips to the ER for things like blue/gray lips (I had no clue bluish lips meant low oxygen, which in her case is common for chd babies) and feeding issues. She was officially admitted to the Cardiac Intensive Care Unit at just 2 months old for failure to thrive, she was still weighing only 8lbs and even that was a struggle.  She would suck the bottle for a few minutes and then fall fast to sleep, taking in just over an oz of formula every 2 hours.  It was extremely stressful but the NG Feeding Tube was a true life saver.  We were sent home with a new way of feeding and things started to look good!

And then we soon found Khloe's heart was working way too heart.  Her heart rate was consisentely in the 200s and she was then diagnoised with arrythmias. So instead of waiting to see if meds could control the rate which meant her heart would take more damage, her wonderful team of doctoers decided to send her in for surgery early.  And on April 15, 2015 Khloe's heart was fixed! 

Surgery was truly an uphill battle for Khloe but she never gave up.  
Kennedy and KhloeThroughout this all, Dad and I stayed strong with the love and support of our family! Nights when I went home, I began teaching myself how to sew and would create headbands for both of my girls.  Every day I would bring up a new headband for Khloe to try on and this is the birth of Mackenzie Madison of Philadelphia! I truly enjoy creating items for my girls and sharing them with you all.  They are both such a huge inspiration for me.  Kennedy (Madison) is such an amazing big sister.  She cares about everyone and loves all.  Khloe (Mackenzie) is a strong little girl who has already been through a lot in her first year.  She keeps going, which keeps me going!  

 
I just wanted to share Khloe's Heart story as it is CHD Awareness Month and we are all about spreading awareness <3  I did blog throughout our various stays in the CICU, you can read more here: In My Daughters' Eyes Blog.
To learn more about CHD check out Mended Little Hearts



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