Help save a live by blogging, tweeting and sharing.

Did you know you can help save a life by sharing a link on Facebook? Twitter? or Google+? You can if you join me in Save Babies through Blogging campaign!

The mission of the Save Babies through Screening Foundation is to educate all parents, whether you're expecting, a new parent, or have been a parent for 20 years, about newborn screening tests and how they can save your baby's life. Their goal is to make sure every newborn in the US is "screened successfully, effectively, and comprehensively."

According to the American College of Medical Genetics, there should be a minimum of 30 disorders that should be including in the screening. There are a possible 36 more disorders that can be tested for and some states screen for up to 50 conditions.

As a young new mother, I had no idea about newborn screening or what it involved. I knew my baby would be tested by a blood sample and that it was to help detect certain disorders but I did not know how many disorders it really tested for or how it can save lives. I also did not know you can request an extended newborn screening panel. This is something, for sure, I will be asking for next time I am expecting. *Some states are not able to run the extended panel, so make sure to ask before you deliver.

Visit here to see how many disorders your state tests for. I'm honestly a little disappointed to see WV only tests for 29 disorders. That will have to be my next project!

So if saving lives is something you would like to help with, join in! You can start my sharing this link on Facebook, tweet if you have Twitter, or just email this blog post to your expecting friend! Together we can make a difference!  And be sure to watch the following video.

It's official!

Last night at 8:04, I read a message that will change my life, and the lives of newborns across the state, forever.

HB 4327 requiring pulse oximetry testing for all newborns has completed legislative action, having been approved by the House of Delegates and State Senate, and is awaiting signature of the Governor!
We did it! Thank you all!

I could not believe it. I still don't believe it! I cannot wrap my head around the fact that in three months, we introduced a bill, rallied our friends and family to the point of harassment to send emails, and got a bill passed! WE MADE A LAW. We three moms, and with a mountain load of help from the American Heart Association, got a bill passed.

I want to thank everyone who sent emails, who shared our statuses, who tweeted and retweeted, who told your pregnant friends about pulse ox, or who just were there to be excited with us. With your help, we got this done. We could not have done it without your support and we are eternally grateful. Because of all your help, lives will be saved.

Thank you for helping me make Corbin's legacy real, for helping me make a difference in honor of my son, and for helping all the thousands of babies that will be saved by Corbin's Bill!

Thank you! and WHOO HOO!!

Corbin goes to the White House, part two.

So after a restless sleep, I awoke before my alarm at 5:30 and couldn't go back to sleep. I checked my email and Facebook, then tried to go back to sleep, but no such luck.

Breakfast was early, 6:15, where I met three women; one was a heart attack survivor, one whose husband was a heart attack survivor, then a mother whose son had died at age 17 to Long QT syndrome, which Corbin had. She told me that after his death, she was able to get a defibrillator in every school, police station, and fire station. I admired her spirit and courage, though you could tell she still was angry about her son's death, she had done so much in his name that I felt really connected to her.

After breakfast, all of us walked the 6 or 7 blocks to the Jackson House, which is a townhouse in front of the White House where they hold meetings.

That's the hotel in the background, on our way to the White House!

There were about 70 volunteers from the AHA, along with Woman's Health advocates and heart attack and stroke survivors.

We had to drop off all our belonging since we were not allowed to bring anything with us to the White House tour, except our ID and cell phone. We all then made our way to the White House were we stood in line for about 30 minutes, went through three Secret Service checkpoints, got sniffed down by one giant, snarling German Shepard, walk through a metal detector, then were finally allowed inside.

This is my first time touring the White House and I'm super excited. But when I get inside, it's kind of a let down and I'm disappointed. I guess I just thought it would be nicer, more official and not so much like a museum. I did really enjoy the paintings of all the presidents, my favorite was actually of Benjamin Franklin. The majority of the paintings were a posed portrait of the person facing the painter. But this one is so personal and relaxed that it really stands out from the others.

It's a self guided tour, so I'm able to make my way through pretty fast. I enjoy the architecture and the paintings, but it was kind of boring for me, not going to lie.

After the tour, we all head back to the Jackson House to grab our belongings, then make our way to the Eisenhower Building for the Briefing. 

By now it's starting to rain and I didn't bring my umbrella and my flats are getting soaked. Some of us started joking around saying that "Oh great, here we are for a White House meeting and our hair is frizzy, our clothes are wet, and our shoes are muddy." :P

Again, we go through two Secret Service checkpoints and a metal detector before we are allowed in. We make our way downstairs and all funnel into an auditorium.

Ignore the crazy look on my face, I was just a tiny bit super excited. :)

Bill Corr, from the Department of Health and Human Services introduces first, then different people from various backgrounds and professions got up to speak.

This is Janet Wright, a cardiologist, presenting about the Million Heart project (which is to prevent a million heart attacks and stokes over 5 years), how to change the way hospitals and doctors look at patients, and about healthy eating to prevent heart disease.

This dude was having a hard time staying awake! And he wasn't the only one actually, I noticed a few others around the room who were actually asleep. That brought back some college day memories...

This is Dr. Diane Bild, Associate Director of Prevention and Population Sciences, cardiovascular division. 
(Say that 5 times fast.)
She presented about the National Heart, Lung, and Blood Institute, improving understanding of heart health and disease, and the need for more studies. 

There were more presenters (I got so absorbed, I forgot to take pictures), a lot of questions from those who attended, and lots of great conversation and debate. During the entire briefing, we all heard some very moving stories from advocates, survivors, and doctors. There was one 13-14 year old boy there, who had survived multiple heart surgeries and he was able to stand and share his story. The crowd loved him, he was so honest and so cute in his suit; he was a crowd favorite.
There was a mid-20s man there who had also survived a late-detected heart defect, along with surgery. There were heart attack and stoke survivors, and one woman specifically stands out who survived 11, ELEVEN, heart attacks. The entire room gasped and started clapping for her. What an amazing story.

A doctor stood up at one point and started off his story saying he went out to dinner the other night, how it was a fancy club that required a jacket and tie, how they provided him with one, etc. He said during dinner, a woman at another table suddenly collapsed to the floor. She had died. He jumped up, started CPR, and asked the restaurant owner if they had a defibrillator, they told him no. NO!? He passionately expressed how stunned he was they they had extra jackets and ties for any gentleman who required one, but they did not have a defibrillator. Amazing. The woman was resuscitated and taken to a hospital, and the last he heard, she was doing fine. 

Then up last was Jon Carson, the Director of Public Engagement for the White House. He got up and basically said "I'm here to hear your story." So you can bet I had my hand up at every pause. After about 15 minutes, someone said they had time for one more questions, and he finally picked me!!
I took a deep breath, stood up, and told Corbin's Story. I said I was there to represent the part of heart disease that you may not think about, and that is heart disease in babies. I pointed out the two other CHD survivors in the room, spoke about how important early detection is, our pulse ox bill and how fast it has been moving..then the room started clapping..I blushed..cried a little, and I had the attention of everyone in the room. 
It was awesome.
Then we all broke for lunch! A few people came up to me, thanking me for sharing my story, handing me their business cards asking for more information and shaking my hand. I was on cloud nine, I could not have been happier at that moment.

After a really fast, heart healthy lunch of chicken nuggets, I ran outside to get a picture of the White House before our next meeting.

See the two men behind the tree? The one of the left had a HUGE machine gun in his arms. I'm talking blow-the-roof-off-a-tank kind of huge. Scary stuff.

Next we were back to the town homes for breakout sessions related to heart health. I was a little disappointed in the options, I was expecting more then just three, but oh well. I had no interest in Clean Air or Tobacco so I went with the Childhood Obesity meeting.

The room wasn't big enough for the amount of people that showed up! Some of us were joking around that you would expect a White House building to have bigger rooms. 

The meeting was directed by Robert Post, Deputy Director for the USDAs center for Nutrition Policy and Promotion.
He had a very detailed and well presented slide show, but did not allocate time for questions! About 30 minutes into his presentation, someone interrupted with a question and from then on, it was over. We never did allow him to continue his presentation. Don't get me wrong, he was going a great job! But the room was busting with questions!
So that was fun, I shared my opinion about WIC, since I was probably the only person in that room that actually used WIC. The big wigs can talk about how it helps "low income" families be healthy, but I wanted to know what kind of well balanced meal was I supposed to make with 2 loaves of bread, 4 boxes of cereal, 24 cans of beans, and 6 jars of peanut butter. Really. 

After that, the day was over for most who attended, but as for me I had been invited to attend a Twitter chat inside the West Wing of the White House! :O

Here is the teen and 20-something year old heart defect survivors I mentioned earlier. I tried to take pictures of everyone before we all split into different directions but this is really the best picture. After waiting a while, our small group came together and made our way to the back of the White House for our Twitter chat!

AGAIN with the secret service and their checkpoints. Oi. By this point, we were running super late for our meeting, it was pouring rain, and we were a mess walking into the West Wing. 

The chat was fun! We weren't able to chat as long as planned, but it went smoothly. I didn't plan very well by giving my Twitter followers a heads up about the chat, so I was super excited when one of my followers got involved and started asking questions! I was really flattered when Jon Carson tweeted my blog link to his 6,000+ followers! 

Here we are, trying not to laugh, while we all tweet on our various electronic devices.

Then it was over as fast as it started! We made our way back outside, then stopped to take pictures in front of the West Wing door, next to the frozen, door-opening, Marine-looking, statue guy. No really, all he did was open and close the door. And he was the only guy dressed like that, someone explain that to me, because I still don't get it.

The crazy, busyness wasn't over yet. I still had to catch my plane home!
I had made plans earlier with the heart attack survivor I had met at breakfast, for the two of us to ride to the airport together. So once they finally figured out what street I was on, we were on our way out of DC. I was sad it was over! I could have stayed the rest of the week doing this. I loved every minute of it.

I really would have loved to see the sights again, but these were as close as I got that day!

Goodbye DC :(

We made it to the airport with plenty of time to spare, but when I went to the kiosk to print my ticket, it told me "Your flight has been cancelled and you have been rescheduled." 
*insert minor freak out*
I go up to the desk, turns out there are tornado warnings around Roanoke, Va where I was supposed to land. But thankfully, there was a direct flight from DC to Charleston, WV that would get me there at the same time the Roanoke flight would have. What luck!

I said goodbye to my new friend, then settled down for a three hour wait.

When it got close to boarding time, I made my way to the end of the airport and waited some more. They kept announcing "All passengers flying to Charleston, WV, please come downstairs to 34E."
Ok. I am at 34E, I'm good. THEN I hear: "Ruth Caruthers, LAST CALL, please come downstairs to catch your flight." I jump out of my seat, quickly ask where am I supposed to go, then run down the escalator.

I did NOT know my place was boarding way out on the runway. I thought I was boarding like you normally do: down a hall way then onto your plane. But it turns out, there are only 4 people, including me, who were flying to Charleston that night. So we were lucky enough to take a bus out onto the runway, run through the pouring wind and rain to the smallest plane I have been on in a long time. 
Oh joy.
There are storms, tornadoes, and pouring rain and you want us to fly a couple hundred miles in a sardine can?! Sure, I'm good with that.

Let me tell you, I was nervous. I have never been that nervous on a plane before, ever! My anxiety was on full throttle as I waited. I could see where a strip of plastic above me was coming away from the side of the plane. My crazy mind is telling me that the plane is falling apart, this window is going to fall off, and I'm going to get sucked out of the plane then get chopped up by the propeller. Just like in Final Destination. 


So after the bumpiest, jarring, tossing side-to-side take off I have ever experienced, we finally made it to cruising altitude. 

Goodbye DC!

The flight attendant was a riot. She had this awesome New Jwersey accent and was so sweet. She saw my name tag, still around my neck, and asked what my job was. I told her I was a volunteer with the American Heart Association and I had just went to a meeting at the White House. She's like, "Oh wow! I have a heart defect." 
What are the odds? Really? 
She goes on to tell me she had heart surgery, but she didn't go into what for, and that her sister just had open heart surgery and was recovering well. 
That blew my mind. What a small world.

The flight wasn't that bad. There were a few bumps and it took longer because the head winds were so strong, but we made it! Landing was nerve wracking again, I was holding my seat belt so tight, my fingers were white. But our pilot did great and we made it with no problems!

You would think my story would be over now, but not yet!

My husband makes the two hour drive to come pick me up, and tells me as we make our way out of the airport that we need to get gas in Beckley. Ok.
He asks how my trip went, and I start telling him. As I'm explaining about the Twitter Chat, he goes "Oh crap." My heart drops.
"We forgot to get gas, and we're on empty."
I just groan. Oh great.

SO we run out of gas, 5 miles from the nearest gas station, 1:30 in the morning, in below freezing temperatures. 
Yup. I'm in a good mood now.

We call Courtesy Patrol (THANK YOU WV for finally doing something right) and tell them we ran out of gas. They show up about 10 minutes later to help us out. He gets his gas tank out, and oh, well, he has literally two cups of gasoline. 
So he calls the other Patrol guy to help us out. He shows up in no time but he doesn't have that much more gasoline with him either. The car is still showing we're on empty, the fuel pump can barely pick up on the gas, and we can't get the car started. So they finally come up with an idea to roll the car back, because apparently there is a barrier the fuel has to make it over before the engine will pick up on it. So they roll the car back, Hubby fires it up, and it starts! 
He yells "thank you!" out the window and we take off. We barely make it home, lucky we only lived a couple miles down the road.
But what I want to know is, WHY are automated pumps turned off at night? There were 4 gas stations within 10 miles, 3 of which had automated pumps, but yet ALL were turned off. WHY?? That is so stupid. If the Courtesy Patrol hadn't had enough gas, we would have had to wake up Hubby's dad to drive 45 minutes at 1:30 am to find a Go-Mart and get us gas. Crazy.

Anyway, we make it home with no more problems and head straight to bed.
What a night!