Providing life where there is catastophe

Did you have a merry Christmas? I hope so. I bet you had a wonderful dinner surrounded by friends and family, complete with a full meal and lots of gifts.

There are many families that are lucky to even get food on the table. There homes have been wiped out by hurricanes, tsunamis or fire. Can you imagine your entire home being washed away? With nowhere to live and nothing to eat?

Thankfully there is an organization that helps those families with nothing. The World Food Program was created to help families who have suffered an immense loss and cannot provide food for their family. When I was reading their mission statement, my eyes got wide when I read one of the very last lines on the webpage:

"Normally, poor and hungry people are those who earn less then the equivalent of one dollar a day..."

Wow. ONE DOLLAR a day. That's about $30 a month. I spend that much just on crap, like a pair of shoes or a new dutch oven (true story). To live off $1 a day leaves me speechless.

I'm so thankful for organizations like this that take the time and effort to help those who are much more needy then us. What an amazing cause. Please take a moment to check out their website, share a link, or just watch this video. And don't forget, a small donation of $35 provides enough food for 2 weeks. Just think about it.

And while you're at it, try out this game. I came across this years ago and it only took a few minutes for me to have helped feed the needy. It takes less time then you take to check your Facebook.

Play Freerice and feed the hungry

Pulse ox saves lives, pass it on.

I put this together this morning, though I have to give full credit to my best friend Rachel for the quote!

Please share and pass it on!

The best gift of all: saving a live for Christmas

Did you know that every TWO minutes, a woman dies during childbirth?

What an awful tragedy, that a woman would lose her life while bringing a new life into the world.

There is a organization that has dedicated all it's power into preventing such a thing from happening. Maternity Worldwide wants to see a world where "every mother, wherever she lives, is able to give birth safely and without fear."

Through this organization, they:

- provide communities with information on maternal health and family planning
-improve access to health centers and hospitals
-train local midwives and doctors to help them provide safe births
-where necessary, provide the equipment and resources needed so hospitals and health centers can enable woman to give birth safely.

Maternity Worldwide has introduced an amazing idea: save a live for Christmas. Instead of buying someone a gift that they don't need, put that small amount of money towards helping a woman have a healthy and safe birth. 

For a donation of 15 pounds (little over $24) you can sponsor a safe birth.
For a donation of 50 pounds (little over $80) you can sponsor an emergency c-section.

Simply order a Safe Birth Certificate and pass along the true meaning of the season: life. 

The Corbin Story FUND! Honor Corbin for his birthday.

I have finally reached a dream.
I have the amazing opportunity to reach non profit status through becoming a fund!

I have found a local foundation that exists to help small groups become non profit without having to deal with the paperwork and legalities. Through this foundation I will be able to accept donations and in turn, put that money back into the community through an educational class, educational material, and events. The majority of the money will be held in an account that will gain interest and that will be donated directly to Heart Defect research.

I just need your help!
Right now I am focusing on sharing and letting people know about this fund and how I need to raise $500 to make it a reality. Then after that, I will be official!

My goal is to have reached official Fund status by Corbin's birthday: February 20th. I really hope that all together we can make this happen!

So lets do what we all do best and share!

REAL awards: nominate a health care worker that has impacted your life.

Save the Children has announced the first-of-its-kind initiative to bring attention to those who deserve it most:  our health care workers.

"Every year, awards are given to recognize the accomplishments of celebrities, actors, singers, athletes, and entertainers," said Mary Beth Powers, Campaign Chief for Save the Children's Newborn and Child Survival Campaign. "Alongside the Oscars and Golden Globes in January, we will begin to honor a group of people who rarely receive recognition or accolades -- health workers." 

 So if you know someone that you believe deserves this honor, visit to nominate them!
If you can't think of someone, please take a minute to read the stories of those already nominated and vote for who you think deserves it most!

You don't have much time though! The voting ends this Friday, November 29th.

Save the Children is the leading, independent organization that creates lasting change for children in need in the United States and 120 countries around the world. Follow them on Twitter and Facebook.

I just want a baby

I know I shouldn't be jealous but I am.
Three of my friends have just found out on that they are pregnant.
I can't help but ache with jealousy. How I desperately want to see those two pink lines and make those phone calls to family. I want to feel my belly grow, feel those kicks, feel those hickups that used to drive me crazy. I just want a baby.

Something that really bugs me is even if I were to get pregnant this moment, my next child would be 4 years younger then Monkey. That is a significant difference! They would be far enough apart that they wouldn't even stay on the same school very long.

I never really thought hard about this until that day Monkey was swinging and had a rock in his hand. He placed the rock on the swing next to him, pushed it back and forth, and told it "I love you rock". How it broke my heart. I do want him to have a sibling. I do want him to grow up with someone that he can share memories with.

I just want a baby.

Then my fears kick in. What if I have a miscarriage? What if I can't get pregnant again? What if something bad happens?

I can't help thinking these thoughts. I know it's normal to worry about such things but after losing Corbin, I just can't have those "normal" worries anymore. I know that one in four women have a miscarriage and that out of the thousands of births each day, many of those babies have birth defects and complications. I can't unknow what I know.

I can only do my best to stay healthy and hope and pray that a baby is in my future.

World Prematurity Day: supporting preemie awareness.

One in eight babies are born too soon.
Worldwide that translates to 15 million babies that are born too soon.

You may know someone who experienced this, or you may have yourself. But what I bet you didn't know is that out of those babies who are born too soon, many of them won't make it.

I know a preemie named Eva. She was hospitalized at Ruby while Corbin and I were there, and our families were both staying at the Ronald McDonald house. I heard about them first because they had the running record for longest stay at the RMD House.

I soon got to meet the popular little baby girl that everyone couldn't stop talking about. She was tiny and fragile, but she also was a tremendous fighter. Watching her slowly grow and develop has been inspiring. Such a tiny little human that doesn't know the meaning of the word "fail", little Eva has truly had a very hard life, battling many health problems, but she also is full of life.

During this day, World Prematurity Day, our goal is to help spread awareness about premature birth but to also share stories of survivors, and to remember those who did not make it but will never be forgotten. If you have or know of a premature baby, please share your story here on this blog or on the March of Dime's Facebook page.

March of Dimes started this campaign in 2003 to raise life saving funds for education and research. They also started the Healthy Babies are Worth the Wait initiative to help support pregnant mothers by focusing on reducing deliveries before 39 weeks.

Watch this video below to learn how you can support this very important cause.

Giving Tuesday-lets start a trend!

I know you all have heard of Black Friday and Cyber Monday, but have you heard of Giving Tuesday?

Giving Tuesday is a call to action. A call to stop spending, to stop taking, to stop trampling people on your way to the electronics section, and to sloooow down and give. It takes place on Tuesday, November 27th, right after the craziness of Cyber Monday.

"Wait, what?" you say. "Give?"
Yes my friend, it is a new and glorious idea that instead of spending the money we worked all year to earn on meaningless toys and objects that we soon bore of, that we all instead give back.

Give back to your community, give back to your friends and family through acts of kindness, give back to the world by volunteering or donating to charity. Take the time, effort, and money you would have otherwise used in the rat race they call Christmas shopping, and instead turn it around into something bigger and better.

Not sure where to start? Here are some ideas!

- Launch a campaign to support your favorite cause.

- Invite your company to match employees’ donations on that day.

- Invite your organization to commit a portion of proceeds on #GivingTuesday to your
favorite cause.

- Invite your local retailers to add a donation to purchases for a charity for

- Announce a donation or new initiative of your own on your blog or social media

- Partner with shops to donate a portion of sales to a charity on #GivingTuesday.

- Organize a local toy drive, yard sale, or bake sale to raise money and
goods for charity.

It is much easier then you think to make a difference and help start a movement. Let's show the world that we are not all greedy and selfish, that we all do care and we all do want to make a change for the better. This season isn't about spending money on gifts, it is about showing your loved ones that you care and that you are thankful. Lets change the way we show that love. Let's help grow Giving Tuesday into a nationally recognized holiday!

To follow Giving Tuesday, you can check out their Facebook page, follow them on Twitter @GivingTues, or follow them on Pinterest. Don't forget to use the hashtag #GivingTuesday when talking about this on Twitter!

This post has been inspired by my work with the Global Team of 200, a team of moms blogging for good.

Envious of death

I haven't blogged in quite a while, which I guess is good meaning things have been pretty mild around here lately...
until today.

I attended the funeral of my best friend's step dad and it was tremendously harder than I ever expected it to be.

It started when I walked in the church and saw the funeral director from Corbin's funeral. All I could think was "you buried my son", all I could see was him pointing out the casket we would bury Corbin in, all I could hear was the overused, hardly sincere "I'm so sorry for your loss".
I had to nudge around him to sign the guest book. I just wanted to yell "get out of the way!".

The service was nicely done and very emotional. I sat behind the family picking my nails, trying not to listen to the heartbreaking words of the songs played, or the verses the preacher read out, or how every. single. time I thought of why I was there I just broke down because I was envious of this man's journey to the other side.
"He gets to see Corbin."

I couldn't get it out of my head.

"He gets to hold Corbin."

"He gets to hold my son's hand and touch his hair and tell him hello."

I was envious of this poor man who battled cancer and lost. I was envious of his journey to Heaven. I was envious that he has moved on to a place of pure love and no pain. Oh how I wanted to follow him.

But I couldn't. So I just cried and cried, aching to hold my baby one more time. To look into his deep blue eyes and tell him I loved him.

After the heart wrenching burial, which included a military send off that had me bawling, I drove across the road to the baby cemetery.

I had no words, only tears. I hadn't cried that much and that hard in a long time.

I hurt for my friend and her family over their loss and the heartache I know they are feeling. But I also ache to follow him to that where my baby see my angel.

Struck by lightning

A few days ago I was shopping for clothes with Monkey when we passed by a register where a couple was checking out. They looked like they were shopping for a friend who was expecting a baby boy soon and I could hear the employee ask when the mother was due.
I looked down at the counter to see what they were buying and it felt like I got hit by lightning.
There it was.
The silky.
A silky just like Corbin had except a different color. The second I laid eyes on it it was like time stopped. Just for that split millisecond I was back in Corbin's hospital room, holding his hand, adjusting his silky over his head. The nurses liked to put it over his head to help keep him warm. It was part blanket, part monkey.

I will never forget that feeling. Like I was frozen in time, in that room, with the beeping and the hospital smell, looking down at my beautiful son as he breathed with a tube down his was terrible. To be forced into that memory. To be shocked into that moment.

It only lasted a split second but it rocked me to my core. I literally shook my head trying to recover my senses. 
What a scary feeling.

A how-to on watermarking your child's photos

In light of seeing a scam on Facebook involving the photo of a baby boy I actually know has reignited my determination to let everyone know how important it is to watermark your photos.
If you are the parent of a child with heart defects, cancer, skin disease, or some sort of condition or disorder where pictures show them in any sort of way that would suggest they are sick; please pay attention.

Watermarking your photos is important because there are people out there who will steal your photos and share them in a scam that has some sort of sad story attatched. The photo will have a caption that claims "for every share this baby will get $1", or "share and this baby gets a free heart transplant", or even something silly like "like this photo and send a prayer, leave a comment and 10 cents will be donated". Sadly, there are thousands and thousands of people who fall for this every day and contribute to the hurt a family feels when they find out their child's pictures have been stolen. 

It is very easy to add a watermark to your photos and I have outlined three programs you can use and how to use them.

1. Picasa. 

A free and easy photo program that you can download here. If you don't have it, download it first, then upload any photos you have that you wish to watermark, choose the photo, then on the left with be an option to add text. Simply type in what you wish, ex: Caruthers Family-do not save, and add the watermark to cover up the photo. You want to place it where it cannot easily be photoshopped out. Then simply go to the top left of the program, under File, then hit 'save as' and you're done!

This is what it should look like:

2. Photoshop Elements

This is what I use to watermark my photos. It is not free, but compared to the full version of photoshop (which can run over $500), it is not too expensive running from $80-$120 (click to buy from Amazon).


free website that makes it easy to upload photos from Flikr, Facebook or Picasa, add a watermark, customize the mark, then save the photos, share them, or download them to your computer. It has an easy 1,2,3 format that guides you through the whole process. I suggest this site for people who are not that familiar with photo applications like Picasa or Photoshop, as it has really simple to follow instructions.

This simple steps can save you much heartache and help prevent your precious photos from being stolen. Please follow these instructions and watermark your child's photos and don't forget to share this post online so that others can learn how as well.

If anyone has trouble doing this or has any questions, please don't hesitate to contact me at:

***Update: Someone posted on my FB that "watermarks are very easy to remove or blur out in photoshop, FYI". I want to address this:
1. No they're not.
2. It's much easier to steal a photo with no watermark.

I use Photoshop on almost a daily basis and I know that it is not that simple to remove something from a photo. You can delete a part of an image but it leaves a black space where it used to be. You then would have to copy the surrounding pixels and copy them into the black space to fill it in. This takes a lot of time and it will most likely not look perfect. If someone did indeed take the time to steal a photo of yours with a watermark and tried to erase the watermark, you would be able to see where it used to be. That being said, I will reiterate: adding a watermark to your sensitive photos WILL HELP PREVENT them from being stolen. I never said that it was a fool proof, 100% effective way of preventing them from being stolen. I am simply saying that if you add a watermark, most likely, if someone is looking for a photo to steal, they are going to pass over the ones with a mark because it would take too much time and effort to remove the watermark.

My best friend brought up a great analogy: "It's like saying locks are easily picked, but that doesn't mean you shouldn't lock your door!" It is a preventive measure to help protect your photos, like how a lock on your door helps prevent a break in. It may not work 100% of the time, but it, for damn sure, will most likely turn someone off from trying!

Newborn screening: a video

I remember filming this video; it was in May, I had met my fellow Task Force members for the first time and we were in the mecca of newborn screening. I didn't realize how amazing our stories would be when put together like this. I absolutely love it.
Check it out...

Like always, please share! Tweet, pin, share on FB, or email to family; help spread the word about newborn screening!

Newborn screening: your stories.

I hope you have been following along with Newborn Screening Awareness month! I have shared a few newborn screening stories and some education material, but this post is geared towards you!

I want to hear your stories.
Did you know about newborn screening (NBS) when you were pregnant?

Did you ask about the results?

Did you have a negative result?

Personally, my answer to all those questions is no. I knew nothing of NBS when I was pregnant with both my boys. I didn't know what they tested for, or how many my state tests for, or what it even involved. I knew nothing till after Corbin passed away and I started educating myself and getting involved.

You're not a bad parent if your answer is no to these questions as well! That's why there is NBS awareness month! To help educate parents about NBS and to spread the word about these life saving tests.

So tell me, what are your NBS experiences? 

Newborn screening: A graphic to share part two

I hope you have been following along with newborn screening awareness month! To make it a little easier, Baby's First Test created this stunning graphic for you all to share and help spread the word. Save it, pin it, tweet it, or print it off; it's yours to share as you wish!

Newborn screening: Sydney's story of life thanks to pulse ox

I heard Sydney's story thought Facebook and immediately messaged her mom to ask if she would guest post on my blog. When reading her story, my heart broke for the babies who are missed during screening and it soared knowing that this little life was saved.

Sydney’s Story
A few days ago I found out that the Minnesota Newborn Screening Advisory Committee voted unanimously for all Minnesota hospitals to perform the pulse ox test on all newborns! This is great news! Fortunately, I gave birth to my baby girl at one of the very few hospitals in Minnesota that performed this test before this passed.
Our little Sydney was born on July 19th at 8:23am weighing 8 pounds, 11 ounces, and 22 inches long. After almost 4 hours of pushing, they decided to use a vacuum to assist in the delivery; five minutes later our daughter was born. Every doctor and nurse that checked her out – listened to her lungs and heart and said ‘you have a very healthy baby girl!’ At this point we had no worries; everyone was telling us we had such a healthy baby. Well that all changed in a matter of 24 hours.
The next day the nurse came in to tell us that they were taking her to do the 24 hour testing. I didn’t know at that point what it all really consisted of; she just simply explained a few of the tests they were going to do. About an hour later the nurse came back to our room, with Sydney, and advised that she did NOT pass the oxygen level testing and that they would be taking her back down to do the same test two more times and if she failed to pass those, an echocardiogram would need to be done. I started to get a little nervous, but figured she had two more chances to pass the test, so I wasn’t going to get overly anxious quite yet. Well much to our surprise the nurse came back yet again and advised she did not pass either of the two tests so an echocardiogram was scheduled for later that day. The nurse did her best to keep us calm and reassured us that all was going to be ok. I lost it at that point and couldn’t hold back the tears, I knew something wasn’t right.
Later that day they performed the echo on her heart and they also took an x-ray of her lungs as her CRP levels were coming back high. After all of the testing they brought our little munchkin back to our room and we went about our day. Since she was only a day old, there were still family members that didn’t have the chance to visit us yet, therefore on that Friday evening we had several first time visitors stop by as well as my sister and two nieces from Arizona who were leaving to go home the next day. It was around 7:00pm when the nurse came in and said they had to take Sydney right away to the Sensitive Care Nursery so they could start her on oxygen. It all happened so fast I didn’t have time to really think things through. All I could think of was the worst – my baby is being put on oxygen, something is not right. The visitors continued to come through the night and we had to explain what was going on and of course it brought me to tears every time I thought of sweet Sydney or had to tell people where she was at.
Fortunately, my sister was there and because of her connections through the organization she works for, HopeKids, she was able to reach out to a few of the moms who have dealt with this same situation and who also knew more about the testing that was being done, etc. After hearing that only a few hospitals in Minnesota, Maple Grove being one of them, I realized how blessed we were that Sydney was at this hospital and had the pulse ox test done. In fact, Maple Grove Hospital recently, just 6 months ago started performing this test along with the other 24 hour tests (hearing, etc.). I didn’t realize the importance of this test until my sister did some more explaining. Thousands of babies have been affected by this test NOT taking place. Heart defects and other issues can be detected by this test and because it is done so early, precautionary measures can be taken to begin treating any issue found. While my husband was in the Sensitive Care Nursery, a doctor came to talk to him and the doctor stressed the importance of this test and said that if the test wasn’t done, they would have sent us home and everything could have been OK. However, there is that 1% chance that we could have been sent home, and then awoken to a blue baby the next day or a few days down the road.
For those of you who do not know the extent of the pulse ox test – it is a simple procedure where a cuff is put on the bottom of the baby’s foot and it measures the oxygen flow/level in their body. A normal range is between 95-100%, and Sydney’s was at 88%. The reason for her low levels could have been because of the vacuum assisted delivery or she was simply just having a hard time adjusting to life outside the womb and needed some help to transition. Without this test our baby appeared healthy, however little did we know that there was a silent killer on the inside. Thankfully her echo came back showing a healthy heart, yet it did show the issues she was having with the oxygen levels. They kept her in the Special Care Nursery for a week as it took her a few days to slowly be weaned off the oxygen and to hold her own levels of 95-100% for 72 hours. Also, because of her high CRP levels, they treated her with antibiotics for 7 days.
I hope and pray that this test will be approved and mandated across the United States at ALL hospitals. There is no reason that a simple test such as the pulse ox cannot be done as a precautionary measure as it could save many lives!!

Newborn Screening: a graphic to share

Please save, share, email, tweet, stumble, pin, or print and hang up on your refrigerator! Newborn screening saves lives and the more who know about it, the more babies who will have a fighting chance.

Stay tuned: next week I will be sharing an amazing story from a heart mom whose daughter was saved by pulse ox testing. 

CHD awareness on CSPAN!

This is just amazing.
A fellow heart mom was able to share her story at the Democratic National Convention! Stacey Lihn, mom to Zoe, told the world how 1 in 100 babies are affected by congenital heart defects. It gives me chills to think of the hundreds of thousands who heard those words.

Watch her speech here

Isn't that amazing?! I was sitting on the couch at my house anxiously waiting to see Stacey walk across the stage, and when she finally did, I threw my hands up in the air and squealed! There she is! It was so exciting to watch CHD history being made.

If you would like to know more about Zoe and her amazing journey, you can read the family's blog or visit Cora's Story to read an interview Kristine gave Stacey.

Please share this video on Facebook, Pinterest (I pinned it so all you have to do is repin), Twitter, and any other social network you are a part of!

Liam Lyon: gone but never forgotten

I hate writing this.

Another heart baby passed away yesterday. William Elijah Lyon, affectionally called Liam was born 5 weeks early but looked great. Turns out he had a life threatening heart defect called Hypoplastic Left Heart Syndrome, which if left untreated, is deadly. Liam's doctors decided right away that he needed a heart transplant, but while waiting, he got worse. So they went ahead with the Norwood, one part of a three part surgery that hypoplastic left heart (HLHS) babies receive. But it didn't help enough and he soon underwent the Glenn, the second surgery, but that also didn't help enough and he was sent to the top of the heart transplant list. He thankfully received that much needed heart transplant some time later, but poor Liam's body was getting weak. Liam was about one year and seven months old, only spending ten days of his life at home, when he grew weak. He fought like the brave lion tens of thousands of people know he is, but it was too much.
Sweet Liam Lyon passed away yesterday at about 8:30pm, in the arms of his loving and amazing family. Liam's strength and courage cathered over 80,000 followers on his facebook page and his chubby cheeks could light up a room.

If you would like to help the family, an account has been set up to accept donations to help with the funeral and other expenses. Please visit their Facebook page to see how to help.

Liam will always be in my heart with his chubby cheeks and heart warming smile, as well as his amazing fighting spirit. Please help me remember Liam by wearing red, lighting a candle, turning on your porch light, or by spreading the love that he was so full of. 

You will never be forgotten brave Liam Lyon.

Newborn screening: the importance of communication

As some of you know, I am part of a workforce group under Baby's First Test that was formed to help educate parents and spread awareness of newborn screening by sharing our personal stories. The following story is from a fellow workforce member, Chantel, who tells us about her newborn screening experience with her son Christian.

When you think of newborn screening, what comes to mind? Well, I realize that it just depends on what perspective you look at it from. I am both a parent of child that had an inconclusive diagnosis from the newborn screen, which later was determined positive, and the perspective of a neonatal critical care nurse that must obtain the newborn screen according the state policies of Delaware. 
  My son was diagnosed with Cystic Fibrosis at two months of age, starting with the newborn screen. We then did a sweat test at a major medical center and DNA samples to confirm the diagnosis. Once the diagnosis was made, I had to ask and seek out more education about resources available. I don't recall from my experience that my OB reviewed this with me at all, neither did my sons pediatrician.
 As a matter of fact when my son was born the hospital policy was to do the newborn screen prior to discharge and preferably in the first 48hrs of life. Well, he was being discharged without his screening being done. We were ready to leave the hospital when I noticed it wasn't completed, questioned the nurse about it, and they quickly took him into their nursery to complete it. He is ten now, so it seems like since then more awareness and education has been made which is definitely a positive thing! 
I have vowed that I do not ever want a parent to feel the same lonely and confused type of way that my husband and I felt when our beautiful, happy bundle of joy was diagnosed with an incurable disease. We realized that we can’t take anything for granted. Everyone assumes a child is supposed to be healthy. Well, I now believe that every child born to this world as purpose by God.. He has control over their life and the lives they touch. For this reason I advocate for parents and consumers that want more education about newborn screening. No one should feel alone or that there are not resources and support groups to help. 
Today Christian is an outgoing 10 year old that excels at basketball and his newest passion is Hip Hop Dance. Every obstacle that is associated with his disease he is overcoming.  He loves to spend time with his family and has a way of making us all value every day we are alive. 

Do you have an experience like this? Share your story with us!

Newborn Screening awareness month is here!

In honor of Newborn Screening (NBS) awareness month, I will be sharing a few stories about NBS as well as education material throughout the month. If you would like to contribute, please email me at:

What is newborn screening?
Newborn screening is a series of tests that screen, or help determine, if your baby may have a certain disease or disorder. The tests are run using blood from the heel stick they give your baby soon after birth. Since most of the conditions they are testing for may not show symptoms or signs yet, as your baby is only a day or two old, the screening allows doctors to catch and identify a problem early so that treatment can be started if needed.
It is important to know that this screening is not a solid positive or negative. The screening shows if your baby is more likely to have a condition, that way a follow up test can be run that will tell you for sure if something is wrong and needs to be addressed.

Right now, screening is available for over 60 disorders, but not all states screen for everything. Every state is different as it is not mandated evenly through the country, but instead state by state. If you would like to see what your state screens for, visit Baby's First Test and click on your state to find out.

Each year, over 5,000 babies are born with a condition that is tested for during newborn screening. Most of those disorders do not show signs right away but could be lethal by the time symptoms occur. Thankfully, newborn screening is required to be run on every single newborn born in the United States so that those conditions can be treated before it is too late.

Have more questions? Please visit Baby's First Test to learn more about these life saving tests. 

An award, but so much more

Yesterday was a very busy day for me.
It started early, around 7am, waking up with the Monkey.
Conference call at 9:45 for Work Force job through Baby's First Test.
Meeting at 12:30 for my 1st part time job.
Then there is some scrambling around so that I won't be late for my own award ceremony!

When I arrive, I first notice the two news stations and the newspaper reporter, then I see there is a table with a giant heart shaped heart. I look up to see a few friends, my parents, some people I don't know, and my people from the American Heart Association. I'm tickled to see a friend of mine from gym class; she saw my Facebook post about heading to the hospital for a ceremony and since she works there, she thought she would stop by and see what was happening.
After saying hi, they began.

My dear friend Molly, who works at the hospital, teaches the newborn and pregnancy classes, and was there for both of the births of my boys, said a few words first. She mentioned the cover photo on my FB profile and how it says "Don't you ever. Don't ever give up." and how she felt that was my mantra through the past year and how she was very proud of all I had helped accomplish.

Then she introduced Dr. Phillips, who was one of Corbin's cardiologists. He spoke of how he met me and how he was impressed that I had taken something so tragic and made something good come out of it. He said that in his line of work, then sadly do have babies that do not make it and how he sees how the parents are affected. He said some "let their childloss define them, but there are a few who take that loss and do something great from it."

Here I am trying not to cry.

Next was Chuck from the American Heart Association. He also spoke of how he met me and about our journey through introducing the bill and having it pass so successfully.

He then presented me with the Distinguished Achievement Award for 2012 from the American Heart Association. It is simply beautiful; made by a six year old, three time heart surgery survivor named Alexa. I was so touched, I started crying and could not get my thank you out. I had to take a minute to gather myself before I could go on. 
I said thank you, and how I could not have done it without the AHA, my heart mom's Kathy and Michelle, and the thousands of people who sent emails to legislators. That support is was got our bill passed and I am eternally thankful. I brought up what Dr. Phillips said about some parents that take loss and do good from it. I said there are parents who lose a child and can't go on, but that is ok. There is nothing wrong with grieving your child. I just felt like I could not go on after losing Corbin and not share what I had learned. I could not let this happen to anyone else. I knew there was something I could do and my loss was my drive. Corbin taught me so much and I had to share that with the world.

I was then interviewed by two news stations about the bill and my story. They asked if Corbin had been tested earlier with pulse ox if it would have saved his life. I said no, I don't believe he would have been saved since he did show a couple signs of there being a problem, BUT there are babies out there who look great, are pink, have good apgar scores, but have a hidden heart defect that could be deadly. That is why pulse ox is so important. To catch those babies and to save a life. 

Next there was a lot of picture taking, some cake, and a lot of hugs. 

I cannot adequately describe the amount of love I felt that day. It was just so warm in that room, so full of happiness and hugs, I loved every minute of it. It felt great to be recognized for my work and to be honored in such a way. It felt surreal to have that much attention on me but I give all the credit to Corbin and his amazing life. I would  not be where I am now without him, my family, my friends, and all the amazing, inspiring people I met along the way. It was just divine.

Next, Molly, Dr.Phillips and I headed upstairs to the nursery. A mom had volunteered her newborn son to be tested with pulse ox on the telemedicine system as a sort of presentation. The news stations didn't follow but the newspaper reporter did. 
Forgive me for not taking pictures!! I wasn't sure if I could and I was just so overwhelmed, I didn't bring my camera into the room. 
They brought in this tiny little newborn boy into the nursery and on the right is a computer monitor that is connected to they system in Morgantown so the doctors can chat in real time. The quality is AMAZING. The cardiologist on the other end can tell accurately is the baby is jaundice, or pink, if they are breathing heavy or normal. It's amazing. 
So Molly hooked up the pulse ox to baby Ethan and I got real nervous. No one had told me if he had been tested already, or if this was his first time. I just started praying "please don't fail, please don't fail". I could not handle it if that little boy failed the screen, right there in front of me. It took probably about a minute or two before his percentages climbed and stopped changing, but oh Lord, I was nervous.
Dr. Phillips turns to me and whispers "Wouldn't it be awful if he failed right here?". I nervously laughed and said "Already thought about that!". 
Turns out this was his second screening so they knew already he had passed. But no one told us! It's sort of funny looking back, but I never thought about how I would feel if I was present when a baby got tested. I will leave that to the nurses, I cannot handle that kind of suspense!

 There was an earlier conversation that could possibly be a life changer, I don't want to say just yet, but do say a prayer for me that this good news does come to pass!!!!!

I left out a lot of conversations and hugs but just imagine a room full of the most important people in your life who are there to say they love you and they are proud of you. It had to be my most favorite day yet. 

Besides the day the bill passed of course!!

Finally, here are the two news pieces from that day.


What a day! Thank you to everyone who came to support me, I truly cannot express how thankful I am and how loved I feel right now. Thank you, thank you!

A midnight trip to the ER

I was at work when I got the call.
"Monkey has a fever."
Usually I'm not too worried when The Kid gets sick. I buy some meds, make sure he's comfortable and rested, and let his little body kick some virus butt.
But this time his fever rose over a degree in an hour and he was hotter to the touch then he ever has been, so the Hubby decided to take him to the ER just in case.
I'm on the phone with Hubby, as he tells me that they are getting ready to leave, and I say "You know they might hook him up to an IV right? You know I can't handle that and neither can you."

All I hear is a sharp breath in and silence as we both go back to that day Corbin was admitted to the ER. I shake the image from my head as he tells me he'll ask his dad to come with him.

I turn to tell my boss and my co-worker that Monkey is on his way to the ER and I start crying. I'm not worried so much about the fever, I tell them, but what they might do to him. Monkey is so perfect and healthy, I just cannot handle him being poked and prodded with needles. I pray that they don't need to do anything like that.

Thankfully I was training a co-worker to cover my position that night, so I was able to leave. I work at a restaurant so I just can't leave, someone has to be there to cover. My boss and co-workers shoo me out, saying everything will be ok, and to let them know how it goes.

As I'm getting into my car, I see my Hubby and father-in-law pass by. I jump inside and follow behind them. There is one car between us and as we get to where the road spreads to two lanes, I see the caution lights start blinking and they take off.
I'm just thinking, Oh God, something bad has happened, and I take off behind them. I just pray there isn't a police officer sitting around because we were going a good 20 miles over the speed limit.

We all get to the hospital, I park really fast, and head inside. Turns out Monkey vomited three times and covered the back of the truck. He's crying and crying and cannot be consoled.

It's about 10pm by this time and there's not a lot of people waiting so were are able to get through triage pretty fast. By the time the doctor comes back to see us, Monkey's fever has done down already and he has fallen asleep on the hospital bed.
The doc tells us that his left ear looks pink and his tonsils are really inflamed and full of pus. He mentions strep, then tells us that all he really needs is fever reducer and some antibiotics.

It's been a day and a half since this happened and Monkey is just fine, back to his old self. I know this wasn't a huge emergency and it could have been a lot worse, but just that little ER visit brought back some anxiety. The smell of the hospital, the beeping...oh the beeping really gets to me. It just took us right back to that long, white hall way in Morgantown. I'm so thankful Monkey is super healthy and doesn't need to visit the hospital very often.

Fierce Pierce

I really don't know what to say, but I want to write this down so that more people know his story and will never forget the amazing life of Fierce Pierce.

Pierce was born premature, with heart defects, and also had Heterotaxy Syndrome. He needed surgery to help correct his defects and the hospital he was at could do the surgery, but his mom wanted the best. She wanted to take him to Boston to the experts, who had done the surgery many times. The hospital where Pierce was admitted had only done the surgery once or twice in a very long time but Medicaid denied the transfer since his hospital was able to do the surgery. They didn't feel it was necessary to transfer him if help could be found within the state.
You can imagine the commotion his amazing mother made to get her son to the experts in Boston. She rallied  online for support and got the media attention she needed that eventually had her and Pierce transferred to Boston. 

Pierce fought for his life for just over a year but sadly passed away this morning in his sleep. 

He was loved by thousands, and will be missed greatly. I just hope that those close to Jessamyn and Pierce never forget his amazing life and how he inspired strength and hope to people around him. I cannot say that I know Jessamyn very well, but I do know that she fought like hell for her son. She fought against doctors, insurance, naysayers, and ever her own family to get her son the help he needed to save his life. She is truly an amazing woman and I can only pray that she receives the love and support she needs in this terrible, tragic time. 

So remember Pierce with me. Make this picture your profile picture, share his story, let the world know that he lived and he is loved. 
We will never forget you Pierce. 
Love from West Virginia, 
Corbin's Mama.

Full circle

Today Corbin came full circle.
Today my baby's legacy came alive.

The very hospital where Corbin was born, where his heart murmur was detected, and where his very first pulse ox test was taken, has started screening every newborn with pulse ox because of Corbin's short life.

It feels like only yesterday when we heard the news he would need heart surgery. The long drive in the rain to Morgantown to await surgery, the Ronald McDonald house, the waiting...oh the waiting. Three months of waiting. But my baby fought so hard. He fought for his life, but Corbin did not lose his battle, he was instead freed from the pain.

 "God saw him getting tired,
a cure was not to be.
He wrapped him in His loving arms,
and whispered, "Come with me."
He suffered much in silence,
his spirit did not bend.
He faced his pain with courage,
until the very end.
He tried so hard to stay with us,
but his fight was not in vain.
God took him to His loving home,
and freed him from the pain."

It has only been 15 months since Corbin passed and some days it feels like a lifetime ago, yet on other days, I'm right back there in that waiting room, eyes pressed shut, praying to God that my baby makes it through another surgery.
To say I'm stunned we got a law passed in three months is putting it lightly. I am in awe, shocked, speechless, amazed, and humbled how God has helped me and my family through this hard time. For my son to go through so much and not make it, but then to change the world and save lives!! Oh, how it takes my breathe away.

I want everyone reading this to know that all it takes is one loud voice to make a difference. If you have a passion for a cause, all you need to do is roar, and change will happen. Do not stop. Do not falter. You have a purpose and a passion that can affect the world; do not let that go.

So here's to Corbin. Here's to the Peanut who showed my what life was really about, how to be patient and understanding, how to slow down and appreciate the little things, and especially, how to make a difference. Thank you Corbin, my little lion. Mama loves you so very much.

Yesterday I was lucky enough to stop by the hospital right as they were about to test their very first baby with pulse ox. I got to talk to the nurses and the very doctor that detected Corbin's heart murmur. I thanked him for what he had done and told him that this bill never would have come to pass if he had not caught Corbin's murmur. By that one act, he has in turn saved other lives.
Monkey went with me to the hospital and got to see the very pulse ox machines that are going to save lives.

All thanks to his little brother.
I am one proud Mama.

To Corbin.

Another graphic, please share!

Pretty much speaks for itself, don't ya think? :)

Dear Adele..

I heard you were expecting your first child, congratulations! I'm sure this is a very exciting time in your life and you must be anxious to find out boy/girl.

I wanted to share something with you. Did you know heart defects affect 1 in 100 babies? Don't worry though! There are some questions you can ask and a test to help check your baby's heart.

At your 20 week ultrasound, take this flier with you to help you ask about your baby's heart.

I know finding out the sex if your baby is the most exciting time! I was nervous and excited with both my pregnancies to find out. What I wish I knew then were these questions and maybe we wouldn't have been surprised when my second son was born with heart defects.

There is also a test to help detect heart defects after birth. It is called pulse oximetry. It is quick and painless and you can hold your baby while it is done. This is another thing I wish I knew about when I was pregnant. Don't you want to feel the extra security of knowing whether your child has the most common birth defect? Every mom I have told this to has assumed it was done already, but that's not always the case. In most places you have to ask for this test, but that's ok! I have another flier to help you ask!

I hope you don't mind me sharing this with you. I'm not trying to scare you, only educate you. When you are a new mom there are a lot of scary things when it comes to babies! I simply want to help ease those worries by letting you know a few life saving tips.
1: ask about your baby's heart at your 20 week ultrasound
2: ask for pulse ox
Not to hard to remember right?!

And just in case, here are the signs of a possible heart defect for you to be aware of. I hope you never have to refer back to this.

Again, congratulations! I wish you a healthy and beautiful pregnancy that ends with a snugly, pink, healthy bundle of beauty.

With all my love,
Corbin's mama

New design and a new flier

First, what do you all think of the redesign?
The background behind the banner isn't permanent but I'm not sure where the code for it is within the whole HTML sooo...

Second, I made a new flier that I am so proud of. I just cannot stop smiling.
Check it out..

Please don't hesitate to share! The more we all share, the more people we can reach, and the more lives we can save.

Don't forget: CORBIN and learn the signs of a possible heart defect!

Want to help save lives?

Do you want to help me save lives?

It's really easy.
All you have to do is share. Share Corbin's story, share his legacy of Corbin's Bill, share information about pulse ox and newborn screening.

So easy.

I finally got around to creating a FB page for this blog and along with it, I created a button you can share on your own blog!

Just copy the code to the right>>>>>
 add it as an HTML gadget on your blog, and you're done!

Want to share Corbin's Story? Share this blog or the FB page!

Share information on pulse ox:

Share information on newborn screening: or

Together we can make a difference and save lives.
All you have to do is click.


Ok everyone, I need your help!
I knew this would come up eventually but I didn't think it would be so soon. I am working on a project right now to print off and distribute flyers about pulse ox and heart defects to the WIC offices across the state. I have gotten the go-ahead from the WIC director and he suggested I start out with 800 flyers.
The problem with that is:
1. I can't print 800 flyers from home, I just don't have the time, the paper, or the ink.
2. I can't afford to pay a printing service to print off 800 flyers. Just 200 flyers was over $120.
3. It would be great to have these by Monday for the Local Agency WIC directors meeting.

So I'm making a call to all of you to help me think of ideas! I suggested to the WIC director that I just focus on one WIC office at a time so it would be possible for me to keep up. I can easily print off 50 flyers at home and take them to my local WIC office, that's no problem. I just don't have the money or time to take care of 800 flyers for the state.
Should I hold a fundraiser to help pay for a bulk flyer order?
Should I enlist the help of friends and family to have them print off flyers as well?
Should I tackle this one office at a time?
How do I pay for paper and ink?

Keep in mind, I don't have to have this done by Monday; that is the day of their directors meeting so it would be easier to hand out flyers for all the regions.

I trust you all to help me figure this out! Please leave a comment and let me know what you think! 

One year anniversary in DC, part two

To continue part one, later that evening before we broke for dinner, the entire Work Force, plus Kristine, came with me to release balloons for Corbin's one year anniversary of his passing. When I originally signed up for this trip, it never registered that I would be here on this anniversary, but once it actually came to the day, I was grateful to have such amazing newborn health advocates there with me. It was also incredibly bittersweet to have three other angel parents there who understood. I hate that I wasn't home with my family or able to visit Corbin's grave but Husband and Monkey made sure to send me pictures.

Monkey was very excited to let go of the balloons for bubby <3

Elizabeth, who works for Genetic Alliance, was a total sweetheart and got a giant bunch of red balloons for me. Me and Kristine were searching up local florists and calculating how far they were and how long it would take to walk; I'm so thankful she took care of that for me. (Thank you Elizabeth!)

Here I am with Annamarie and Kristen before the balloon release.

We step outside the hotel to a small garden area right in the middle of the intersection to release the balloons..

 I try to muster up something to say..but nothing comes out. I only look around at all the amazing people surrounding me and be so touched by their kindness in this moment. As soon as I look as Kristine, I start crying. She runs over and gives me a big hug; I can only cry...

and Bill does the same. It was nice to have them there, in that moment. It really made me so proud to be Corbin's mama and I was blessed share that moment with them.

My new favorite picture, this is going up on the memorial wall. 

After wiping the tears and a few more hugs, we went on to dinner. Here we were all finally able to meet Mark and discuss out projects for Baby's First Test. As part of our agreement with Baby's First Test, we all have to come up with some sort of project to do in our area, some way to spread awareness about newborn screening. We went around the table, speaking about our ideas, and bouncing tips and suggestions around the table. It was incredibly inspiring to hear the great ideas, to see the passion, and to feel the emotion from every person around that table. You could just see the excitement in the air as these passionate advocates spoke about their ways to help save lives. 

After dinner a few of us had a beer, talked about our children, and how we got involved in the Work Force. Then it was off to bed.
Friday's meeting went by fast as I had to leave at about 2:30 to catch my super shuttle to the airport. They pick you up hours early to make sure you don't miss your flight. It's a good thing too, because I got there an hour and half early, yet with Dulles being so gigantic (you can't tell though because it's all underground), I only had 20 minutes of downtime. 

When you first walk into the airport, it doesn't seem that big. The wait for self check in flowed pretty quickly, but once you get downstairs to the security check it is Hell. I actually got patted down. UGH. I went through this huge scanner thing where I had to put my hands on my head and spread my legs. Once I got through, the security lady told me she would have to "sweep" under my bust. I knew why she was checking, damn wire bras, but it was very annoying none the less. And on top of that she checked my hands with some kind of wipe test. I just want to go home people! I don't have time to doing anything sketchy. Geez.
This photo is of the SUBWAY you have to take to get to your terminal. First time ever that I've had to do that! 
The flight back to Staunton was uneventful, then a FOUR hour layover (ugh), then back to Beckley, then a drive home. I left the hotel around 3 and got home a little after midnight. Again I could have drove home faster. 

I can't remember exactly when I took these, but here are some extra pictures. 

Bill speaking about his son, Grayson.

Kristine talking about Cora. It was so great to see her speak in person!

A slide of their talk about CCHD screening. I actually got up and said a few words. :)

The hotel.

Beckely airport: smallest airport ever.

And that was my trip to DC! 
I was, and am, very honored to be picked for the Consumer Task Force and to be chosen to represent Baby's First Test in DC. The whole experience is very humbling, educative, and enlightening. I hope to do it again soon! 

I also want to say a huge thank you! to everyone who helped me remember Corbin on that day. Some angel mothers just want to be alone on such a hard day (and I don't blame them one bit) but I'm the kind of person who doesn't want to be alone on such occasions. I really do enjoy the company, the talk, and the reminiscing over old memories. Those kinds of things are what helps me through. I like to talk about how I'm feeling. So thank you <3

For Corbin <3