What it's like to have a child with CHD

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Written on 10:43 AM by gracefully discovering:

I found this on another Heart Mom's blog...I enjoyed reading it, and it gave some insight on what to possibly expect very soon!

It’s Lasix,aspirin,Captopril….It’s wondering…Lord what’s your will?…It’s monitors and oxygen tanks…It’s a constant reminder…to always give thanks…It’s feeding tubes, calories, needed weight gain…It’s the drama of eating…and yes it’s insane!It’s the first time I held him…(I’d waited so long)It’s knowing that I need…to help him grow strong…It’s making a hospital…home for awhile…It’s seeing my reward…in every smile.It’s checking his sats…as the feeding pump’s beeping…It’s knowing that there… is just no time for sleeping…It’s caths,x-ays and boo boos to kiss…It’s normalcy…I sometimes miss…It’s asking…do his nails look blue?It’s cringing inside… at what he’s been through.It’s dozens of call to his pediatrician…(She knows me by name…I’m a mom on a mission)It’s winters homebound…and hand sanitizer…It’s knowing this journey…has made me much wiser.It’s watching him sleeping…his breathing is steady…It’s surgery day…and I’ll never be ready.It’s handing him over…( I’m still not prepared…)It’s knowing that his heart… must be repaired…It’s waiting for news…on that long stressful day…It’s …praying…it’s hoping…that he’ll be okay.It’s the wonderful friends… with whom I’ve connected…It’s the bond that we share…it was so unexpected…It’s that long faded scar… down my child’s small chest…It’s touching it gently…and knowing we’re blessed…It’s watching him chasing…a small butterfly…It’s the moment I realized…I’ve stopped asking…why?It’s the snowflakes that fall…on a cold winter’s day…(They remind me of those…who aren’t with us today)It’s a brave little boy…who loved Thomas the train…Or a special heart bear…or a frog in the rain….It’s the need to remember…we’re all in this plight….It’s their lives that remind us… we still need to fight!It’s in pushing ahead amidst every sorrow…It is finding the strength to have hope for tomorrow.
-Author Unknown

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2 Comments

  1. Amanda (Janelle's Mommy) | May 25, 2009 at 4:05 PM

    Thank you for reading my blog about Janelle. Please add us to your heart friends links. I am about to add your family. I have updated the blog a lot today. You may enjoy the one titled My 18 months as a heart parent.

     
  2. Suth-ern Mama | June 20, 2009 at 8:04 AM

    Thank you for your post! You haven't posted in a while. I hope you and the babies are doing fine. We are continuing to pray for your girls, but especially your little heart girl! God bless!

     

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