The Nut House: Wordless Wednesday, Owee in Hospital Playroom

My Wee Nut

22 month old, my Little Heart Baby & my Hero. He is Double Inlet, Single Ventricle with Pulmonary Atresia. He has had 2 out of 3 Open Heart surgeries needed to “fix” his heart. We have started monthly O2 monitoring, which is pretty much the first step in preparing for his 3rd surgery. His oxygen level was around 78 at the end of 2009, but somehow, now is up into the 90’s. The Heart is an amazing thing and I never know what to expect. At some point, when his O2 sats get down into the lower 70’s we will have to think more seriously about his next surgery.

Owain is our Miracle Baby. You can read his Congenital Heart Defect Story from the very beginning if you click on his picture.

We are a homeschooling, ADHD, Heart defect, DIY home remodeling, Cub Scouting, State Defense Force, almost vegetarian, hunting, partial recycling, garden growing, food stockpiling, PBS loving, video game playing, frugal living, outdoor loving, kids over house work, work/stay at home mom, breast feeding, bottle feeding, baby food making, postpartum depressed, cloth diapering, baby wearing, family game night playing, love to get messy, kids cook'n in the kitchen, occasionally co-sleeping family. If any of that makes any sense to you and you feel like hanging around to see what comes next, follow me and leave a comment.

A Mothers Perspective

~ by Stephanie Husted ~

You passed me in the shopping mall...(You read my faded tee) You tapped me on the shoulder...Then asked..."What's a CHD?" I could quote terminology...There's stats that I could give...But I would rather share with you...A mother's perspective.

What is it 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 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-rays 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 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’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.

The Day I Became 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 am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!

Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child's bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
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 his life, and guide us through each day.
My mind says savor each moment he's here,
but my heart begs, "PLEASE let him stay"!

From pacing the surgical waiting room, to sitting by his bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will he be alright?", to watching him reach out his 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 scar I trace with my finger (It's the door to his beautiful heart).
God must have known how much I'd love him (Just as He loved him from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".

Wednesday, April 21, 2010

Wordless Wednesday, Owee in Hospital Playroom

3 comments:

Brianne said...: How is everyone doing? Thinking about you guys. He looks well though!; April 21, 2010 at 9:52 PM
Lisa Curcio said...: Thanks Brianne, he does look so much better! I am so tired. Typical...I fall asleep, someone walks in for something, Owain falls asleep, someone has to check on something. I know it needs to be done, but gee, I am exhausted.

The other kids are OK I guess. I haven't even had a chance to talk to them :(; April 21, 2010 at 11:14 PM
Stefenie said...: Praying for you guys Lisa!; April 22, 2010 at 7:50 AM

Mended Little Hearts of Charlottesville

Many of the current members have been trained by MLH...myself included...to visit Heart familes when their Heart Babies are admitted to UVA. If your Heart Baby has been admitted, or will be admitted to UVA after birth and would like to meet with some one Please let us know. We are available to meet in person at UVA or on the phone. Please mark your calendars for the 2nd Monday of each month for our meetings, from 6:00-7:30. Child care is provided. We hope to have a social gathering soon, and will let you know that date as soon as it is set.

Things I am Not Crazy Enough to Talk About

I love to talk, but you wont find any discussion of politics or religion here. I am also not interested in talking about any type of a sensationalized media circus. I have seen other blogs where there is drama, debates, bashing, trolling and gossip. To me that is just not fun, I like to have fun and talk about my family, my friends and we love to be silly. I want you to be able to stop by, check out what I have to say and relax. I am not going to tell you who to worship or who to vote for. I do however have moments where I need to let loose on some topic or another and I do rant in a few of my freelance articles, but I send that to the media and is is not part of my blog. Sometimes I regret what I say, others not so much, either way I like to keep things around here light hearted and fun.

Sure, my house has plenty of drama, we have 5 kids we are a loud family, we argue, we play, we get stressed, we have fun. It is all part of life, I am not going to pretend any different.

My Wee Nut

My 1 & Only She Nut

Little Nut Nut

E Nut

Wing Nut

Who I am & Why I am so Nutty

The Nut House has moved to a new url. Please update your bookmarks and links and come check us out!

Wednesday, April 21, 2010

Wordless Wednesday, Owee in Hospital Playroom

3 comments:

My Nutty Life Includes All This

Proud to be a Heart Mom

Mended Little Hearts of Charlottesville

Nutty Things I Say

Things I am Not Crazy Enough to Talk About

These people are all Nuts too!

Look'n For Something?

Other Hearts We Pray For

Please Vote to See CHD's on The Doctors

My Wee Nut

My 1 & Only She Nut

Little Nut Nut

E Nut

Wing Nut

Who I am & Why I am so Nutty

The Nut House has moved to a new url. Please update your bookmarks and links and come check us out!

Wednesday, April 21, 2010

Wordless Wednesday, Owee in Hospital Playroom

3 comments:

My Nutty Life Includes All This

Proud to be a Heart Mom

Mended Little Hearts of Charlottesville

Nutty Things I Say

Things I am Not Crazy Enough to Talk About

These people are all Nuts too!

Updates from The Nut House

Look'n For Something?

Other Hearts We Pray For

Please Vote to See CHD's on The Doctors