Let's kickoff #CHDweek!

Hi there! I hope you have found this site because you are taking part in our second annual photo a day challenge!

If you have never done one before, don't worry, it's easy.
Each day has a corresponding word. You simply take a photo of anything that the word inspires you to think of. If you want to describe it literally or metaphorically, that's ok! You can write a poem, draw a picture, or even post a video. Whatever you like, just don't forget to use the hashtags #chdweek and #1in100 so that others can see your post and so that I can see your beautiful photos!

Here is the list. Feel free to share just do not alter or make your own in any way.

Have fun!

Here is my post for day one: Diagnosis
#chdweek Day 1: #Diagnosis. It was February 25th, 5 days after Corbin was born. We had just gotten out of an ultrasound appointment with a cardiologist whose exact words were "you need to take him to the ER or he is going to die." I ran from the room bawling, leaving my mom to gather up the baby. Luckily the ER was right across the street, although they ignored my heartbroken pleas to see him asap. They insisted on doing the stupid paperwork while I paced the room, praying he wouldn't die right there in the triage room.
Here he is being hooked up so they can check his heart. I had to leave when they tried over and over to get an IV in his tiny vein.
A complete stranger came up to me, said "you must be the mama, let us pray", grabbed my hand and starts praying for Corbin. I'll never forget her kindness.
That was the day we found out Corbin had life threatening #heartdefects.
(I watermark most photos of Corbin just in case) #chd #chdmom#heartmonth

CHD awareness week is a month away!

I'm SO excited to be able to host this for our second year! Last year's photo challenge was a great success and I hope to surpass that this year with an even bigger event!

CHD Week starts February 7th and runs till the 14th but the whole month is dedicated to spreading heart defect and heart disease awareness. It's all about spreading knowledge because knowledge can save a life!

If you have never participated in a photo challenge before, don't worry, it's easy!
Each day of the challenge has a work prompt. You are to take a photo or screenshot or draw a picture of something that the day's word makes you think of or inspires you to post.
Post the picture to your Facebook, Twitter, Instagram, Pinterest, or Google+ with a description of your post.
Don't forget to use the hashtags #CHDweek and #1in100 in your post so that they can be seen.
That's it!

**This is a Corbin Story original. Do not alter or make your own in any way. You are free to share and tag as much as you would like!**

First time parent

I seriously feel like a first time mom. It is the strangest feeling. Even though my son will be 5 (what?!) in two months, it's like he was here the whole time; like he's always been a part of our family and this is my first time having a newborn.

Weird I know, but I have a theory.

We had Monkey just over a year after we got married. We were, what I consider, still young and we hadn't been married very long. We were still getting to know each other, let alone trying to figure out how to raise this little human. As some of you know, I got pregnant with Corbin just three months after I had Monkey. So there was a lot going on!

All of that plus Corbin passing away changed us. We were not the same couple that had gotten married just two short years ago. That whole experience changed our faith, our emotions, the way we deal with each other, and the way we handle new experiences.

So Hubby and I were a new couple when Babygirl arrived. We were more sensitive, thankful, aware, humbled, and broken at the same time. You may not realize that EVERY SINGLE second of every day, we are thinking of Corbin. So having a newborn again and getting to watch her grow outside of the hospital is earth shattering to us. The simplest things break my heart; like the day we brought her home. Nothing happened.
"Well that's a good thing" you say.
YES!! It is!!
Nothing happened. There was no "well, we hear something wrong in her heart" or "we have scheduled you for an echo."
The very simple fact that we could take her home with no follow up doctor's appointment the next day was mind-blowing bliss.

The third day we had her home. Nothing happened.
There was no follow up echo to drive to. No heart breaking diagnosis of a heart problem.
Nothing happened.

Day five.
Yup. Nothing happened!!
We stayed home with our beautiful, healthy, amazing girl whose heart beats strong and even. Day 5 with Corbin, we were in the emergency room, waiting on an ambulance to take us 4 hours away so our newborn could have heart surgery.

Babygirl is a month old today and she has been here in this house longer then Corbin ever could. Every day, there is something she does that Corbin never got the chance to and there isn't a word to describe that feeling.

So yeah. I feel like a first time parent, getting to experience these amazing newborn moments and just feeling my heart almost explode with happiness and gratefulness.

Awareness post: Mesothelioma

On average, people diagnosed with Mesothelioma are given 10 months to live.
That’s 300 days.
300 days to make the most out of your time with your family. To see sites you’ve dreamed about and to experience things that have been gathering dust on your bucket list.
In honor of Mesothelioma Awareness Day, I’m sharing the story of Heather and her fight against this disease. In 2005, just months after giving birth to her daughter Lily at age 36, Heather was diagnosed with pleural mesothelioma (affecting the lung’s lining in the chest cavity). She is believed to been exposed to asbestos when she was a young child, almost 30 prior, when her father worked around asbestos.
She was given just 15 months to live.
She and her husband immediately went out to find the top specialist in mesothelioma cases, and soon they found Dr. Sugarbaker, a renowned surgeon in Boston’s Brigham and Women’s Hospital. Heather was put through a ring of tests to see if she qualified for surgery, and two days before Christmas in 2005, she underwent the intense surgery to remove the lining of her lung, her left lung, 6th rib, half of her diaphragm and the lining of her heart. After recovering from surgery, a couple months later she started chemotherapy. After a few months of chemo, she then started radiation therapy and underwent an astounding 30 sessions and finished just under a year after her symptoms first appeared.

It has been 8 years since Heather’s diagnosis and she can happily say she is a survivor! She continues with checkups every 6 months, but thankfully has stayed cancer free! She has made it her mission to spread awareness and help others going through their own journey with mesothelioma.
You can watch more of her story here: http://www.mesothelioma.com/heather/
Mesothelioma is an aggressive cancer that attacks the lining of the body cavity called the mesothelium. The only known cause of mesothelioma is exposure to asbestos. The terrifying fact about asbestos is that “on average, 30 million pounds of asbestos are still being used in the United States today. The substance can still be found in many homes, schools, and commercial or industrial buildings. The EPA estimates that there are asbestos containing materials in most of the nation’s approximately 107,000 primary and secondary schools and 733,000 public and commercial buildings.”
Mesothelioma is hard to diagnose because the symptoms can be mistaken for something else, or are too subtle to accurately diagnosis at first. Symptoms can take from 10-40 years to appear after exposure; it is very important to talk to your doctor if you know/believe you have been exposed to asbestos and to see a specialist.
While there is no cure, treatments typically include surgery, chemotherapy and radiation therapy. Surgery options are to remove the tumor, or to remove the lung itself. Sadly, there is a high chance the tumor will reappear after removal since it is very hard to remove it entirely, without taking the lung, so usually surgery is accompanied by radiation therapy.

Asbestos is STILL NOT BANNED in the US!

Symptoms include:
·         Shortness of breathe, muscle weakness
·         Lower back pain, side chest pain
·         Coughing up blood
·         Weight loss, fever, fatigue, persistent cough
·         Mesothelioma can sit dormant in the body for 20-50 years after exposure.
·         It is commonly diagnosed between the ages of 50 and 70.
·         You can be exposed second hand from a family member who works in an asbestos affected workplace.
·         Asbestos remains the number one cause of occupational cancer in the US.
·         NO amount of exposure to asbestos is save.

If you live in a home built before the 70’s,
please have it checked for asbestos!!

If you would like to contribute your voice to this cause, please visit:

Newborn screening month- raise hell

There are 11 days left in Newborn Screening Awareness month! Have you bought your shirt yet?

Where are all those people who said "If you need anything, just let me know" or "let me know anyway I can help!". Where are those people?
We really need your help to reach our goal of 100 shirts. This isn't a fundraiser just to raise money for the heck of it..this fundraiser will benefit one of the top newborn screening organizations in the country and help save lives! Your t-shirt purchase saves babies. What are you waiting for?

I've been in the advocacy world for almost 4 years now. It doesn't get easier. I always feel like a bit of a nag and annoying, but I DON'T CARE. 

If we are silent, who will speak up?

I could say I'm sorry for saying the same thing over and over...that I'm so sorry I've interrupted your casual facebook scrolling with the public service announcement, but there always needs to be that person who raises hell to change the world. 

So I'll ask again, what are you waiting for?

Visit www.booster.com/savebabies to help change the world.

Newborn Screening Month: Fact 3

Pulse oximetry screening is a type of newborn screening. It can help detect the number one birth defect in newborns: congenital heart defects, or CHDs. 

What is pulse ox?

Pulse oximetry is a painless, non-invasive screening that measures the amount of oxygen in the blood using a small sensor attached to a band. The band is wrapped around baby’s hand and foot, the sensor detects the percentage of oxygen in the blood, and the results are compared to see if there is a possible problem.

Why is this important?

Pulse ox screening is important to know about because it is not mandatory across the US yet. A lot of states have added it to their screening panel, others are working on it, and a few still have work to do on the issue. It is important for parents to ask about the pulse ox screening in every state!
Visit www.cchdscreeningmap.org to see where your state stands on pulse ox screening. 

Here is a great video that explains more:

More questions?

Visit www.pulseoxadvocacy.com