Surgery Photos.....

Well Colin is doing well and the surgeon was very happy with how well he actually is doing. They have him currently completely paralyzed so he doesn't move since his chest is open. Colin is breathing 100% on a ventilator until they close the chest. He has a slight fever so they have been cooling him with ice.

Below is a poem that we were handed when we arrived by a group of mothers who have kids born with various Congenital Heart Defects....The group is called Helping Hands Healing Hearts and they are a support group for RI and MA families. A link to their website is http://www.riheartgroup.com/. We thought this poem summed everything up extremely well and we thought the parents following the blog with heart children would enjoy it.

You passed me in the shopping mall…
(You read my faded tee)
You tapped me on my shoulder…
Then asked…”What’s a CHD?”

I could quote terminology…
There is stats that I could give…
But I would rather share with you…
A mother’s perspective.

What it is like to have a child with a CHD?
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 a while…
It’s seeing my reward…in every smile.
Its checking his sats…as the feeding pump’s beeping…
It’s knowing that there…is just no time for sleeping…
It’s caths, X-rays and boo boos to kiss…
It’s normalcy…I sometimes miss…
Its asking…do his nails look blue?
It’s cringing inside….at what he’s been through.
It’s dozens of calls 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 are 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.

And no…we’ll never be the same…
It’s changed our family…
This is what we face each day…
This is…a CHD.

By Stephanie Husted