Saturday, February 12, 2011

Please join me in Reality. Please take part in the Little Things.

(click on the title above to read full feature article)

Above is a link to an excellent article on CHD and HOPE. A video is included, of a sweet little two-year old girl, Tiana who's life-threating CHD was not diagnosed until she was three months old and yes, her very life was on the line at that point.

Every parent can take one step to try avoid this (hopefully one day you won't have to ask). But please, as for a "Pulse Ox" screening of your newborn (more on this in a future post). Tiana's story is really something- she used an artificial heart called a "Berlin Heart" which is still awaiting FDA approval (should happen this year).

I encourage you to follow the's a great read.

Then please, if you will, spend a moment in reality land with me...and see why we want research to increase ten-times fold - see what only CHD's familes are privileged to witness.... and help absorb some of the reality with us.

This above picture of is Gwen just as they were wheeling her off to surgery. I have a video but currently the video is not working here... Sweet Gwenyth opened her eyes as they were wheeling her down the hall. We are acting like things are can hear our conversation with the nurse in this video. But I remember seeing her go into that room without me. Vividly.

I remember after that, going up the elevator to meet with the surgeon before the surgery. I remember everyone telling me I had to take care of myself because I just had a baby. She was two days old. And she amazed all the doctors that she made it that far. We hadn't even grasped that detail yet. I know the day actually went by quickly - I am not sure if I had to move out of my hospital room that day, but somehow we had things to do and the time did go by pretty quickly.

I remember we got our update as they said we would, one hour into the surgery from a nurse named Laura who was actually going to be watching the whole thing (she had never seen a "truncs baby" before). Looking back to the day while we waited for the news, I don't want to remember... so we'll just stop here. I'm sure it's on the blog.


Okay, now for the reality of CHD according to us. This week, for CHD Awareness Week, 2011 - CHD parents are posting photos in the days after surgery to help the world see the truth of what it looks like. It is a "silent disease" because the scars are covered and the kids appear very normal after leaving the hospital - few people see what these kids surmount. Here's our contribution;

Have a look. Be amazed - please don't avoid it - take it on and see it - so that it's not only the burden of the parents to know the definition of a complex CHD requiring surgery.

Look at the photo below and remember how far Gwen came - how fast she recovered - and see why we want everyone to know about congenital heart defects - because currently this can happen to any baby because the cause for most CHD's is still unknown.

We need to know why and how to stop heart defects from forming if we can. I believe that will happen. ( I can't wait to share all the CHD research headlines of astounding findings all just in the year Gwen was is yet something else that I'll get to here on this blog). I want everyone to be as excited and hoping for a cure as all CHD's families are...

I also want everyone to know how to advocate for their baby and how protect their baby before they get pregnant. There are some things you can do to lower your risk and believe me, while there is so much HOPE for these kids... you want to avoid this for your child at all costs if you can. (I'll be posting about that later this month for sure - it is important to me to arm every woman with the knowledge they need - every woman of child-bearing age.)

Back to that day... a little more remembering...

I know when she returned, we saw they had to leave her chest open...which wasn't the best case scenario, I know the surgeon hoped to not have to do that. She had a pacemaker - I didn't know the pacemaker also, wasn't the best (I thought all open-heart surgery babies needed them and that they all used one during recovery).

I remember how helpless it felt to see you baby completely sedated and full of meds. I learned how tenuous it was when she had a little bit too much morphine and we almost lost her - but they brought her back - while we watched.

You never believe your going to loose your child. You can't. It's not in the DNA of the parents. But you also know something is very, very wrong when you see them after surgery. It's a weird place to be. Myers has shared with me since, that during both times to the hospital, CHOP and here the day she left - he never thought she could die, not while she was there in the hospital. I don't know if I did either - I think I was more worried because I knew we might think that... (which in that case would mean it had happened.)

Yet I witnessed one of the most amazing things that occurs every day...I never knew a thing about it before.

I saw my tiny, newborn baby have her heart repaired and her little body heal up... I'm humbled. Completely, entirely "brought to my knees" as one "CHD parent facebook status" being passed around perfectly describes.

But that is enough. Gwen was enough and yet she is one of thousands... No parent needs to be so-humbled.

If this is the best we can ever get - we'll take it. But so long as there is a chance that we can do even more for these little "CHD Warriors" then, that is where I am. If we've been blessed to come this far in our abilities to help these kids...why shouldn't I hope and pray for an even brighter future?

And in the meantime - the simple things matter. That is really what my little-loud advocacy is for...the little things each of us can do. Giving blood. Little donations here and there. And looking at your healthy children with awe - and letting that bring you to your knees.

Don't miss that. Every breath you share in the same time and space that your child breaths... don't miss that.

(Thank you Marianna for your visit. For stopping in and surprising us. For meeting Gwen and for getting one more photo we would not have had... sweet little girl in the onesie her Grammy bought her... little polka dots, my little Springtime baby... Look at those deep blue eyes... in my sweet friend Marianna's arms.)

Posted by Picasa


  1. Sweet Laura. How I pray for you and Myers and Lilly! I love how you are speaking up for those who cannot speak aloud. MUCH love to you.

  2. Gwen looks beautiful in that polka dot onesie. I can see why you're thankful for that precious photo. Thanks for sharing all you've learned.


Ten years loom and as always seems to be the case, I find myself struggling the most in the days ahead of the anniversary  - be it her birt...