The day started off early. Around 2 am kind of early; I could not sleep.
So I got out of bed, cleaned up the house, got my things ready for the morning, and washed my hair. I tried to go back to sleep but I just lay there for hours. 2:30..3:30...4:00. I slept on and off till about 6:30 where I just waited for my alarm to go off.
Off to the capitol!
I was lucky to find parking relatively close to the capitol building then made my way inside.
(I knew wearing those heels would be a mistake.)
We, being me, Kathy (heart mom), Pete (heart dad) and our American Heart Association partners met in the capitol building under the dome.
It being my first time there, I took pictures like a tourist.
I was also interviewed by a local TV station about my story and why we were there today.
Every year the AHA throws a heart healthy luncheon for the female delegates, called the Woman's Caucus. We were there to share all three of our stories and why Corbin's Bill was important to us.
While we waited, we were able to watch some of the action going on by legislators inside the House Chamber gallery. It was really neat to watch them in action! We were really lucky to actually catch them talking about Corbin's Bill! They mentioned the bill, that it was passed in the Health and Human Resources Committee, then they sent it on to the Judiciary Committee. Exciting!!
Kathy and I were sitting next to each other and both our ears perked when we heard "HB4327" and we both grinned at each other. What luck to catch that!
We made our way back to the meeting room, lunch was brought up, and slowly the female legislators made their way in.
After they finished lunch, we began.
Our AHA associate, Chuck, introduced us, why we were they, and what we were going to talk to them about. Kathy went first and told Jacob's story. She covered very well on how a child with a life threatening heart defect, if caught soon enough, can go on to live a full and productive life. I saw her story bring smiles to much of the room.
Pete was next, to tell his Jacob's story. His story brought some tears to the faces of some legislators, and mine too, as he fought back the tears explaining how Jacob crashed after his first heart surgery. He did a great job of showing a dad's side of the story.
As Chuck introduced me, it was very difficult to hold back the tears. As I made my way to the podium I just knew this was going to be very emotional for me. The night before I had written up a speech to keep me from talking too much, but as I started my story, I didn't need the piece of paper.
I started by saying I had a normal pregnancy, then we found out about Corbin's heart murmur, then how at his echo we were told "get him to the ER or he will die."
I had to stop there.
It was very hard to go on.
I apologized and continued. I explained how Corbin spent three months in the hospital, had three heart surgeries, then passed away right before he turned three months old. I went on to say how pulse ox is so very important for catching defects like Corbin's and Jacob's because they could have died within hours or a week if left undetected. It is crucial for pulse ox to be done at 24 hours of life to ensure that baby does not get sent home with a clean bill of health, only to die at home.
I also said that hospitals have the pulse ox test already, nurses know how to use it, and it's cheap, easy, and painless. This bill makes sense, would not cost very much, and will save lives.
The feedback we received was fantastic.
One spoke up stating that she thought it was ridiculous that something so common sense requires a law to make it happen.
Others asked questions like, "so it (pulse ox) doesn't require a lab?"
No, it is small, portable, and cheap.
When I asked if there were anymore questions, one women said "Ya, how fast can we make this happen!"
I was all smiles at that comment.
I saw a lot of heads nodding, showing their support and agreement that this bill is necessary. Many came up to us afterwards to thank us for sharing our story, to shake our hand, and ask more questions.
One came up to me and asked if during my stay if there was "something we (the state) should work on?"
I was first, stunned that she cared enough to ask, and touched that she wanted to do something about it. I mentioned that besides what we were there for, we actually had a really good experience at the Ronald McDonald house and the Ruby staff are amazing. I did bring up the biggest negative was when we were told my husband no longer qualified for FMLA because Corbin was deceased. She seemed surprised that this was the case and mentioned that she would look into it and let me know. How awesome!
So overall, I had a great time, we made some great connections, and the support we saw was very encouraging. I know we do have a long process ahead of us, that there will be bumps in the road and not everyone is going to support us, but this was a very good day. :D
We did good Corbin. It's all in your honor <3
So I got out of bed, cleaned up the house, got my things ready for the morning, and washed my hair. I tried to go back to sleep but I just lay there for hours. 2:30..3:30...4:00. I slept on and off till about 6:30 where I just waited for my alarm to go off.
Off to the capitol!
I was lucky to find parking relatively close to the capitol building then made my way inside.
(I knew wearing those heels would be a mistake.)
We, being me, Kathy (heart mom), Pete (heart dad) and our American Heart Association partners met in the capitol building under the dome.
It being my first time there, I took pictures like a tourist.
I was also interviewed by a local TV station about my story and why we were there today.
Every year the AHA throws a heart healthy luncheon for the female delegates, called the Woman's Caucus. We were there to share all three of our stories and why Corbin's Bill was important to us.
While we waited, we were able to watch some of the action going on by legislators inside the House Chamber gallery. It was really neat to watch them in action! We were really lucky to actually catch them talking about Corbin's Bill! They mentioned the bill, that it was passed in the Health and Human Resources Committee, then they sent it on to the Judiciary Committee. Exciting!!
Kathy and I were sitting next to each other and both our ears perked when we heard "HB4327" and we both grinned at each other. What luck to catch that!
We made our way back to the meeting room, lunch was brought up, and slowly the female legislators made their way in.
After they finished lunch, we began.
Our AHA associate, Chuck, introduced us, why we were they, and what we were going to talk to them about. Kathy went first and told Jacob's story. She covered very well on how a child with a life threatening heart defect, if caught soon enough, can go on to live a full and productive life. I saw her story bring smiles to much of the room.
Pete was next, to tell his Jacob's story. His story brought some tears to the faces of some legislators, and mine too, as he fought back the tears explaining how Jacob crashed after his first heart surgery. He did a great job of showing a dad's side of the story.
As Chuck introduced me, it was very difficult to hold back the tears. As I made my way to the podium I just knew this was going to be very emotional for me. The night before I had written up a speech to keep me from talking too much, but as I started my story, I didn't need the piece of paper.
I started by saying I had a normal pregnancy, then we found out about Corbin's heart murmur, then how at his echo we were told "get him to the ER or he will die."
I had to stop there.
It was very hard to go on.
I apologized and continued. I explained how Corbin spent three months in the hospital, had three heart surgeries, then passed away right before he turned three months old. I went on to say how pulse ox is so very important for catching defects like Corbin's and Jacob's because they could have died within hours or a week if left undetected. It is crucial for pulse ox to be done at 24 hours of life to ensure that baby does not get sent home with a clean bill of health, only to die at home.
I also said that hospitals have the pulse ox test already, nurses know how to use it, and it's cheap, easy, and painless. This bill makes sense, would not cost very much, and will save lives.
The feedback we received was fantastic.
One spoke up stating that she thought it was ridiculous that something so common sense requires a law to make it happen.
Others asked questions like, "so it (pulse ox) doesn't require a lab?"
No, it is small, portable, and cheap.
When I asked if there were anymore questions, one women said "Ya, how fast can we make this happen!"
I was all smiles at that comment.
I saw a lot of heads nodding, showing their support and agreement that this bill is necessary. Many came up to us afterwards to thank us for sharing our story, to shake our hand, and ask more questions.
One came up to me and asked if during my stay if there was "something we (the state) should work on?"
I was first, stunned that she cared enough to ask, and touched that she wanted to do something about it. I mentioned that besides what we were there for, we actually had a really good experience at the Ronald McDonald house and the Ruby staff are amazing. I did bring up the biggest negative was when we were told my husband no longer qualified for FMLA because Corbin was deceased. She seemed surprised that this was the case and mentioned that she would look into it and let me know. How awesome!
So overall, I had a great time, we made some great connections, and the support we saw was very encouraging. I know we do have a long process ahead of us, that there will be bumps in the road and not everyone is going to support us, but this was a very good day. :D
We did good Corbin. It's all in your honor <3
