1 in 100

This is what Congenital Heart Defect (CHD) looks like to me:

This week (Feb 7-Feb 14) is CHD Awareness Week. According to the Children's Heart Foundation, 1 in 100 babies are born with some type of CHD...this is about 40,000 babies a year. This year about 4,000 babies will not live to see their first birthday because of a Congenital Heart Defect. 

Stella is my 1 in 100 and there were many days that I prayed for just one more day. We are getting very close to celebrating her 1st birthday (a day that at many points I wasn't sure we would see) and I am so thankful to have the chance to celebrate this milestone with Stella when too many CHD babies do not get the chance. 

Before Stella was born I knew very little about CHD and the things that are now my reality. I did not know what an echocardiogram was or how to use a pulse oximeter, or read a hospital monitor. I had never seen a feeding pump and never imagined having to put in a feeding tube. I never made the choice to become a nurse or have any profession in the medical field, but now the CVICU at Phoenix Children's feels like a second home. My family, along with 1.8 million US families was affected by a Congenital Heart Defect and now my world is filled with doctors visits, echos, therapies, feeding tubes, beeping machines, medical terms and prescription meds. CHD is something that has taken over my world and is very important to me. I am a heart mother and the sleepless nights are worth it because the beautiful girl with the scar on her chest and the smile on her face has changed my world for the better.

I am a Heart Mother

by Stephanie Husted

One day my world came crashing down, 
I'll never be the same... 
They told me that my child was sick.. 
I thought, am I to blame? 
I don't think I can handle this...
I'm really not that strong.. 
It seemed my heart was breaking..
As, I'd loved her for so long. 
I will not give up on this child.. 
despite your best "advice".. 
I will give my child a chance.. 
No matter what the price.. 
And I will learn all that I need.. 
to help my child to thrive... 
I'll even use that feeding tube.. 
My child will survive! 
And she'll needs lots of therapy? 
And she just can't gain weight? 
Alright God I can do this.. 
I will not curse our fate. 
The feeding pump beeps,( at 3:00 a.m.) 
It serves as my reminder.. 
How many parents would welcome that sound? 
Tomorrow Lord, I will be kinder.
Another angel earns their wings.. 
and I run to my sleeping child's bed.. 
I watch her then, for quite awhile.. 
(I bend down and kiss her head) 
Then I cry for the parent's whose lives have been broken..
And I look to You wondering why? 
Oh Lord, I just can't know your ways.. 
No matter how I try. 
And yet, I trust You hold her life..
(and guide us through each day) 
My mind says savor each moment she's here...
But my heart whispers,"Please let her stay". 
From pacing the surgical waiting room... 
to sitting by her hospital bed... 
From wishing for a good nights sleep.. 
to learning every med..
From wondering will she be alright? 
to watching her reach out her hands.. 
with every smile, my heart just melts..
(despite life's harsh demands) 
For all who see that faded line.. 
I look to them and smile.. 
You see my child is loved so much..
I would face any trial... 
That same scar I trace with my finger.. 
(It's the door to her beautiful heart) 
You must have known how much I'd love her.. 
(Just as You loved her right from the start) 
A heart mom is always a heart mom.. 
(wise beyond all of her years) 
And for those who have angels in heaven.. 
Our hearts share in all of your tears.. 
On Mother's Day I will remember.. 
You chose me for her(and no other) 
And I will embrace that beautiful day.. 
When I became a "heart mother".