CHD Awareness Week, Pintrest and creating HOPE

CHD Awareness Week is coming up...please, help spread awareness!

Here is a great way you can participate in spreading awareness in memory of Gwen.

1. Go to your Pinterest account (if you have one) and "repin" Gwen's story found on the special Pinterest board "Faces of CHD - Congenital Heart Defect Awareness Week Feb 7-12, 2012." If you are not a Pintrest user, you can still visit this page and learn more about CHDs.

2. Take a moment to view the board and repin the stories that touch your heart and/or if you have a facebook account, link to this board.

Thank you in advance for your support - thank you to CHD moms, Ruth, Stephanie and Becca  for their efforts in creating this board.

(How to participate with your CHD story is here.)

While reading the stories (it really won't take much time) you can also see just why I'm celebrating the news that HB 399 for pulse oximetry screening (pulse ox) passed in Virginia with a unanimous vote this week. A "pulse ox" screen is a simple test all newborns should have (and now will have in Virginia). It can help detect some severe CHDs that go undiagnosed.

Read the Pintrest stories here and on my own personal Pintrest page and you will see why this pulse ox test is so important...believe me, severe CHD's can go undetected in newborns.

Oh, and here's my personal Pinterest board for CHD week, I tried to pin mostly stories about CHD's that would have been caught by pulse ox screening in honor of Virginia's recent vote. (Note: this board is work in progress...if I ever get back to it, I'm not really online much these days nor a big "Pintrester" - most everything on this board is from the the Faces of CHD Pintrest board I linked to above...so if you "pin" anything, I'd pin from that board rather than mine...it's the official awareness board :)  )

Awareness matters. Thank you for helping spread the word about CHD's!

We miss our baby, so much.

We miss our Gwen so much - everyday. I think more everyday.

We were just getting to know you… to be with you… and we loved you since the moment we were expecting you… from that moment we laid eyes on you (how I remember that moment…). It's so hard to see you always not-here. Hard to love you this much, yet not be able to see you grow up. Hard to only have a handful of memories. Hard to wrestle down the memories of... the day you left.

Sometime this summer something reminded your daddy about how I sang to you...he recalled how I sang to you while I held you.... that day.... after it all happened. I don't remember that, but he does. I just wish you could have heard me singing.

And I just want to fix it all...have you back... and it's hard.

I will just walk forever, I my gardens then...because if we had a flower, for every-time we think of you...

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I took this picture of her tree today. It is the "background" of the collage above. Her tree is still green while all around many other trees are at peak. I enjoyed the contrast. The whole arboretum sparkled with Autumn today while the weather struck the perfect chord of warmth and chill. The wind blew enough to carry the leaves up and around the sky. They fluttered in the sunlight and seemed to be alive, enjoying their new-found freedom. The clouds were pure white and large, lumpy and confident even billowing yet never blocking the sun for too long.

I'm so glad we planted her tree there...it is so perfect.

However, I find myself so often facing the ultimate end of what it means to be conflicted. I mean, let's be honest. I kinda hate this tree. For what it stands for, in place of, instead of, the reason Why it grows there in this spot. It sickens me to go see her tree.

I love this little tree we planted. It's Gwen tree. But... it's Gwen tree.

sigh.

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Today is October 15th and that is significant - as Gwen is not alone. I am thinking of so many other  parents today...

God bless, to all those whom we walk along side with.

The Open Window

by Henry Wadsworth Longfellow

The old house by the lindens
Stood silent in the shade,
And on the gravelled pathway
The light and shadow played.

I saw the nursery windows
Wide open to the air;
But the faces of the children,
They were no longer there...

They walked not under the lindens,
They played not in the hall;
But shadow, and silence, and sadness
Were hanging over all.

The birds sang in the branches,
With sweet, familiar tone;
But the voices of the children
Will be heard in dreams alone!

And the boy that walked beside me,
He could not understand
Why closer in mine, ah! closer,
I pressed his warm, soft hand!

To Honor Mia

Today, I'm thinking of Mia Grace Marrone.

To share her with you, to honor this little baby's life - I am debuting the "Sisters By Heart video" for the first time on Gwen's blog and posting a link to a story titled "An Arranged Friendship."  It is about Mia and her CHD-warrior friend Zoe.

My heart aches for Mia's family as they face a time or remembrance of the events of one year ago, how their little girl was so suddenly taken. Their three year old son couldn't understand why his little baby sister was not with them anymore. Mia's twin brother was left without his twin sis. And another mother and father were facing pain beyond pain.

Mia's mother wrote;

"I can still hear her cry, see her laugh. It is just hard. It seems that every time I see a baby girl around her age it tugs my heart. I know they say it is not supposed to be easy but there is no words to even begin to explain.

For the 87 days she was here she was my everything. My hope, My dreams, my inspiration and strength to go on. I would continue going every night on no sleep if I had to. She taught me so many things about life. Life is so short for fighting and selfishness. It is hard to imagine in that moment that God already had a plan from the time she was conceived. I hate that plan but maybe in time I will See why. I just think about who she could have become and who she really looked like. It is all just gone in the blink of an eye.

I am very proud of the things I have done and the awareness that has been raised for congenital heart defects. She came into this world with me and left with me. As the priest said during her service, 'Ray and Jennifer are not angel makers, they are Saint makers. Mia Grace touched more lives in 87 days than many touch in 87 years. For in my eyes she is a Saint. She brought together a community and taught many about hypoplastic left heart syndrome and the importance of congenital heart defects. In my eyes she is a saint.' "
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I remember being so excited - I remember seeing the twins on facebook after they were born at CHOP and wondering how this mother was going to take care of a heart-healthy newborn and a HLHS newborn who had to stay in the hospital while also caring for a toddler. It made our then-recent time at CHOP seem like a walk in the park.

That little Mia and her twin brother Madden, I remember being so happy for Jennifer and her husband Ray. I am saddened for them now as it will be one year for them on the 25th of this month.

So, in honor of Mia - here now, the Sisters By Heart video:



And,

An Arranged Friendship by Stacey Lihn
"Can you imagine your best friend dying? It's heart-breaking to even think about. Someday, I'll have to break the news to Zoe that her friend, Mia, died, just shy of her 3 month birthday."

Read the full story here: Arranged Friendship

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My love, care and prayers to the Marrone family.

Happy Birthday Marie

Gwen would have been one year old, back in March. You would have been 21 today. You both shared your "0" year - it would have been fun to always know you were the same "ten". So many things would have been fun if you were still here. I'd see you today, on your birthday, when we get into Chatt - it would have been fun!

Lil made up a memory, or maybe it is real - I just don't know - but she said one day, "rmember how Aunt Marie used to say, (and she spoke in sweet, happy voice that I could really hear you saying) "Whooooo ate the cupacke?" So, my plan is to always have cupcakes on your birthday :)

Here's us remembering you and Gwen on May 14th, 2011.

"“There’s no cure. If this works, I have 4 years, if not, 6 months.”

On my side and my husbands side of the family we have several cousins on our hearts who are fighting cancer (one, on my side recently lost his battle). They are all around my parents age. I know too many friends who's parents battle/have battled cancer. I know of children too... Cancer is so devastating and everywhere it seems-

I have two friends who are cancer survivors - both mothers (one who wasn't given hope that she'd live to have a child the other unsure if she'd be able to stay with hers). Both faced unbelievable odds.  To-date they are both cancer-free.

This sweet, sad, story written by my cancer-warrior, cancer-survivor, friend - a mother of three, -well, it just is sad and sweet and real...and I wanted to share it...

It's Not About Age: http://www.springofjoy.org/the_library/its-not-about-age

Keep funding cancer research, keep praying for the cure and be aware of the blessing of good health when you are so blessed... don't miss that... and even better, while you are healthy - take up a cause to support - causes like this shouldn't just be left to those who are personally affected. Take up more than one!

"Life is a tragedy, confront it...Life is too precious, do not destroy it. Life is life, fight for it. -Mother Teresa (thanks to CHD warrior Zoe's mama - I found this quote on her bog and it's kinda my mantra now).

And while I'm here - I want to share one way you can help that I know of personally- below is a link to Jason Williams' story - he is a friend of Becca and Patrick and baby Connor (my sister and brother-in-law and new nephew). He is battling Pancreatic Cancer:

http://www.jasonhenrywilliams.com/p/my-cancer-story.html 

Here is a short summary written by Jason:

"The doctors at Johns Hopkins have decided that the vaccine trial might not be the safest or best way to treat my cancer. They believe that my many episodes of pancreatitis, irritated an already present cyst and lead to my cancer. I will be making trips up to Baltimore/Johns Hopkins for Pancreatitis clinics and to see specialists who can hopefully cure or manage my pancreatitis. If this is possible, they believe that my cancer will more than likely not return....

I am accepting donations to help pay for my Pancreatic Cancer treatments. You can donate safely and securely, using your debit/credit card via PayPal.

Thank you all for your continued support through this journey - it means a lot!"

My sister-in-law, Becca shared Jason's story with me a while back. She is the one who was there to help us when Gwen was born - who posted for us on this blog many times...goodness, she is the one who announced for us here, the loss of precious Gwen, she is whom we have to thank for the enormous amount of great photos we have of sweet Gwen (and of Lillian too) and in this small way, I want to pay-it-forward and use this blog to help support her friend - I can vouch for the legitimacy of this story and website, so I wanted to do so - so there you go - if you are so inclined to donate, there is one little thing you can do to support someone struck by cancer.

A Moment for CHD Awareness

Call me crazy, but a "no brainier," completely painless, dirt cheap, and super-fast test that could reveal serous heart problems is the LEAST we can do for tiny persons just beginning their life... however few and far between babies with CHD may be (ahem, the # 1 birth defect). If one life is saved, that is enough for me.

In Missouri it's called Chloe's Law - here, for me, writing from Virgina - I'm going to call it "Gabe's Law" for now. What do these two children have in common? They were both born with undiagnosed CHD's that could have taken their life rapidly. They both had doctors, who at first, actually downplayed the symptoms the parents raised (keep this in mind by the way, this idea of doctors missing symptoms of serious heart defects, just remember that...you'll enjoy the irony later).

I don't know Chloe, but I found her story online and was impressed by her mother's work on the "pulse ox issue." I do know Gabe. He lives nearby. Gabe was born with Truncus Aterious, like Gwen. At some point - I'd like to share more about Gabe and his family - but I have to stay on point -however his mother has been an integral part of support on my journey. For now, let it be known that Gabe is a thriving, smiling, 9 year old red-headed little boy. But he is one of many examples that, yes, CHDs can be easily missed.

I have to say, I appreciate this news article (which I will link to momentarily). Finally a journalist did some real leg work regarding pulse ox and dragged some meaty information out into the light. I've had questions - I couldn't understand why this was a decision a governor might have to ponder. Babies life? What's to think on? Move the pen. Right? I read this article and I now feel more fully "versed" on the issue, more "balanced" if you will. And my "stand" on the issue remains the same. Move the pen.

This article offers some insight into well, the "issues" raised against mandating this test as recommended by the department of health and human services. And while I'm glad to have some points to address as I try to help spread awareness for this issue - I have to say, I had to pick myself up off the floor first, after reading this article.

Before I go any further - I want to address the "issue" of bias - that I sound like a crazy "baby-loss" mama who is a giant alarmist who needs attention or perhaps is hyper-vigilant and over-sensitive and ya know, have lost my perspective. You know, the argument being that I am too close and all I see is CHD everywhere and I'm trying to make every one afraid.

Let me offer this, and take it or leave it, but I'll toss this other thought out there. I desperately want every baby that is born to have the best chance possible - and this (helping promote mandatory pulse ox tests into law) is ONE SMALL, tiny, minuscule thing I can do based on the "experience" and "knowledge" I bring as part of the CHD word and part of the "baby-loss" world.

I think of all my friends and family their children and beg God to keep this type of pain local - here - and never touch anyone I know with this kind of loss... I simply want to do what I can with what I know. And believe me, I know about CHD. Should I just sit on it?

In particular let's talk about this "kind of loss" (a baby dying from an undiagnosed CHD) and what I know about it from the "underground" world where "baby-loss moms" and "heart moms" meet up and share their stories and support each other: A baby, undiagnosed with CHD can die in a mothers arms while nursing. It doesn't happen often. Yes, it is rare. It is also preventable. Preventable trumps rare any day.

Read about Cora here if you think I'm being a dramatist.

I'm an advocate for all moms, moms who don't know about this- until -well, you get the diagnosis for your baby....). Believe me, YOU DON'T want your baby to die if you can help it, you don't want your friends baby to die, you don't want your neighbors baby to die - and yes, it "may not happen much" but if we can save even 1 life this year...isn't it worth the few minutes it takes to strap a tiny strip to a baby's toe and get an oxygen reading 24 hours after the baby is born?

I honestly can't believe there is any "argument' here...but read this article and see - there are people who are shooting down this proposal:

Test to detect heart disease in newborns may be mandatory in all hospitals.
 
And seriously - one argument proposed is that this test might give parents a false sense of security. Apparently there is concern that if parents are told their baby passed the pulse ox test they, "wouldn't seek medical care for symptoms that may develop later" - Um, excuse me - there is a remedy to that - it's called the written and spoken language. And pardon me as I get up off the floor...

Hopefully, doctors, you are giving plenty of information to new parents regarding ALL the tests and procedures preformed. Perhaps you even hand out information regarding other helpful areas relating to newborns (nursing, bathing, car seats, shaken baby syndrome, symptoms of potential medical issues, just to name a few). Please, tell me you are handing out information about symptoms of the number 1 birth defect. And you can say it and write it, that CHD's can be missed by pulse oximetry screening, and stress that parents need to know the symptoms.

Really. There is a "remedy"...to that "fear"...

Also -let us take a moment to address CHD symptoms here on this blog and help keep "awarenss" up and I'll even set a ground-breaking example. I'll include a "disclaimer."

Although helpful in screening for heart problems present at birth, a "pulse ox test" only screens for certain defects. Not all CHD's can be found by a pulse ox test, even severe ones can be missed. Here is more information regarding CHD's to keep in mind as you care for your newborn:

"Some congenital heart defects have few or no signs or symptoms. A doctor may not even detect signs of a heart defect during a physical exam.

Many heart defects do have signs and symptoms. They depend on the number, type, and severity of the defects. Severe defects can cause signs and symptoms, usually in newborns. These signs and symptoms may include:

• Rapid breathing
• Cyanosis (a bluish tint to the skin, lips, and fingernails)
• Fatigue (tiredness)
• Sweating while feeding
• Not gaining weight (failure to thrive)
• Poor blood circulation" 

(source CHD Babies)
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All said, I can't believe for a moment this won't pass in NJ and every other state. So I'm gonna go chill-out now.

But take a moment and read this article please, so I can know I'm helping to spread awareness. Spreading awareness really takes two here - I can't spread squat if you don't actually take in some of what I'm ranting about.

It was a perfect day...

...except, they were not here. 

May 14th, 2011 

Remembering our baby girl and our little sister.

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Thank you to so many who prayed for peace and sent their love our way this weekend - we found peace we felt the love and care. Thank you. It helped.

More pictures and a video to follow... I couldn't get enough photos - it was so beautiful up on Skyline drive Saturday...and Lil's sweetness takes the cake in our little video.

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The Open Window

by Henry Wadsworth Longfellow

The old house by the lindens
Stood silent in the shade,
And on the gravelled pathway
The light and shadow played.

I saw the nursery windows
Wide open to the air;
But the faces of the children,
They were no longer there.

The large Newfoundland house-dog
Was standing by the door;
He looked for his little playmates,
Who would return no more.

They walked not under the lindens,
They played not in the hall;
But shadow, and silence, and sadness
Were hanging over all.

The birds sang in the branches,
With sweet, familiar tone;
But the voices of the children
Will be heard in dreams alone!

And the boy that walked beside me,
He could not understand
Why closer in mine, ah! closer,
I pressed his warm, soft hand!

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The Reaper And The Flowers

by Henry Wadsworth Longfellow

There is a Reaper, whose name is Death,
And, with his sickle keen,
He reaps the bearded grain at a breath,
And the flowers that grow between.

Shall I have nought that is fair? saith he;
Have nought but the bearded grain?
Though the breath of these flowers is sweet to me,
I will give them all back again.

He gazed at the flowers with tearful eyes,
He kissed their drooping leaves;
It was for the Lord of Paradise
He bound them in his sheaves.

My Lord has need of these flowerets gay,
The Reaper said, and smiled;
"Dear tokens of the earth are they,
Where he was once a child."

They shall all bloom in fields of light,
Transplanted by my care,
And saints, upon their garments white,
These sacred blossoms wear.

And the mother gave, in tears and pain,
The flowers she most did love;
She knew she should find them all again
In the fields of light above.

O, not in cruelty, not in wrath,
The Reaper came that day;
'Twas an angel visited the green earth,
And took the flowers away.

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