Each year when we head to the Cardiologist, my fears begin to surface. She goes to the heart doctor on Thursday. I know that I have absolutely no control over anything that happens with my miracle daughter. When I was given a daughter who had absolutely no prognosis, no hope, and a failing heart, it breaks a Mother's Heart.
No wonder why a few days before our visit each year, I begin to toss and stir in the night and my mind begins to wander. So I started my Thanksgiving gratitude posts.
Having to watch your daughter with a stilled heart and the screen on the monitor shows no beating heart and the miracle of its return is something no Mother should ever have to face, not just once, but thrice. Hearing the words "congestive heart failure", "thickened heart", "DNR", and "hospice".
For those who do not know our story, my youngest daughter Becca was born with a severe form of Noonans syndrome, she had many medical problems, many severe, but her heart was the worst and every year the Noonans syndrome family lose precious severely ill babies to their bad hearts. We were destined to say goodbye to Becca, but she proved too stubborn to give up. God had great plans for Becca's life and its impact.
Becca had severe pulmonary stenosis (misshapen obstructed pulmonary valve), Atrial Septal Defect (Big ASD whole) and severe biventricular hypertrophic cardiomyopathy. By her first October she was in heart failure, by her six month heart birthday her wish for a early birthday party was hosted by Make-a-wish, by nine months we risked her life to fix the hole and remove the bad valve to buy her a little more time. They gave her two years. By her first birthday she could finally sit up for a few seconds without turning blue, by her eighth birthday she amazed the doctors that her heart was no longer thick. A miracle, but we know it can turn around at anytime. Her heart is still enlarged and the missing value and another valve are causing concern.
Last years visit brought the news the doctor thinks he may have to do surgery again, but the first surgery she almost died do to plural effusions, and once she did it once, it will happen again.
We are praying her heart has not worsened, for another miracle.
Please pray for good news for Becca, she is scared, and her Mother does not know what to do but ask others to pray with me and Becca.
Tuesday, November 10, 2009
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3 comments:
Just wanted to let you and Becca know you are in my thoughts and prayers.
Please keep us up to date as to how the appointment goes.
You and Becca are in my thoughts and prayers. My son had a stroke in-utero and I empathize with the nerves before these appointments. Please share what you are comfortable with after the appointment. I will be thinking of you both.
I love the picture of Becca! She is a beautiful girl!
my thoughts are with both of you and my prayers are that your news will be nothing but positive
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