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.