Corbin's Law

Corbin Walker
Corbin was born with an undiagnosed CHD. He fought for 3 months before he sadly passed away. We are fighting for this bill in Corbin's memory.
To learn more about Corbin please visit his blog: 
http://thecorbinstory.blogspot.com/

A while back I had wrote about pulse ox screening and how it can literally save lives. I have been working with 2 other moms along with the American Heart Association to pass a bill in WV that will make it mandatory for all newborns to be screened prior to being discharged from the hospital. Pulse Oximetry screening is simple, painless and very inexpensive. Have you ever gone into the hospital and they put that white clip on your finger? That is a pulse ox monitor. For a baby it looks like a small band-aid that is wrapped around their finger or foot.

Congenital heart defects (CHDs) are the world’s most common birth defect, occurring one in every 100 live births. Nearly 40,000 babies will be born this year with a CHD in the United States. Sadly, anywhere between 25-40% of CHDs go undiagnosed before or at birth – and those babies are sent home without necessary intervention. Many “common” murmurs are left for re-evaluation at the baby’s one-week well visit. In a short period of time, these undiagnosed and untreated defects will cause significant medical complications. In the worst cases, undiagnosed babies die. Research supports that early diagnosis of critical congenital heart defects leads to favorable outcomes in quality of life and survival rates. This is especially important in West Virginia since most families live 4 hours from the nearest Children’s Hospital. 

Currently, hospitals test for PKU, Down Syndrome and a host of other maladies, and yet, oddly enough, heart defects (the primary birth defect) is not routinely screened. 3 other states have already made it mandatory for newborns to be screened and we hope that West Virginia will be next.

I am really excited to say that this bill was introduced last Friday. We have 4 amazing sponsors (Delegates Hatfield, Poling, Brown and Staggers) backing us and hope to be able to pass this bill this year. We can't thank them enough for supporting this cause. The bill will be referred to the Health and Human Resources Committee and then to the Judiciary Committee.

WSAZ did a story about this bill on Friday. Thank you to the whole WSAZ team for helping us get the word out!

Just a few corrections about the story.
1. The black and white photo is not Jacob. The baby is Corbin, son of Ruth Caruthers. Sadly Corbin passed away at 3 months old due to congenital heart defects. He was not prenatally diagnosed and we are fighting to get this bill passed in his memory. Ruth has been at the forefront of this campaign and I am so proud to be working with her, Michelle and with the American Heart Association to get this bill passed.
2. The bill has not passed in 20 states however we hope it is soon! 

HOW YOU CAN HELP

We can't do this alone. If you live in West Virginia and you have not signed up already please go to yourethecure.org and sign up to receive alerts letting you know when to contact your lawmakers. You will also receive updates about the bill's progress.

The first alert came out today. Please click the link below to contact your local lawmakers. It is easy! Just follow the link. There is a letter already written, you can add a personal story if you would like. By signing up You're The Cure will send the letter to your local lawmakers for you.

CLICK HERE TO TELL YOUR LAWMAKERS TO SUPPORT HB4327!

To learn more about Pulse Ox Advocacy and research, click here.

Tis the season

Hello blog world. 

 So much to update you on but first I have a favor... Please say a little prayer for Jacob. He has caught a virus and is not feeling well at all. He woke up this morning with a temperature and very fussy. He has not let me put him down all day and is not eating or drinking or playing. I took him to the doctors this morning and I just have to say how much I LOVE Dr. Shields, Jacob's pediatrician. She could see right away how bad he looked and was very thorough. They tested for flu, rsv, did a chest xray and bloodwork. 

His ears, throat etc. were all fine. He tested negative for RSV and the Flue (THANK GOD!). The chest x-ray was clear and the blood count was a little low. Low is indicative of a virus. Thankfully it was not elevated so it doesn't look like an infection. We were just at the doctors office two days ago getting Jacob's synagis shot (His monthly shot to protect him against RSV). So most likely he came away with more than his synagis shot. As soon as Dr. Shields saw us this morning she said "Oh no, he caught something from here didn't he?". I said yes and we would like to return it lol. Unfortunately it doesn't work that way. 

So after 4 hours at the doctors office/hospital the diagnosis is that Jake must have picked up a virus. Luckily, his Oxygen Saturations are staying around the low 80s which is normal for him. All I can do is give him Tylenol and snuggle him until he feels better. It is scary because I have never seen him feel this bad. He just cries and whines and won't let me put him down. The not drinking thing really worries me THANKFULLY WE HAVE THE G-TUBE! Most kids that don't drink fluids could go downhill quickly, especially a hypoplast. Jake has no choice when it comes to hydration because I can push it through his tube. He doesn't like it but he needs it. I pushed 6oz of pedialyte into his tube tonight. I am praying he will drink and eat tomorrow but if not, in the tube it goes. 

If you could please send up a little prayer for Jacob to feel better soon. I hate seeing him like this. I feel so helpless. My poor baby has never looked so unhappy. Thank you! 

Now for the rest of the update:

ECHO RESULTS:

Jacob's echo looked great. For those detail junkies his arch was wide open, very little tricuspid regurgitation (YAY!), Heart function was normal (Double Yay!), everything looked awesome. So the breathing is still not affecting his heart. My son is amazing, just beyond amazing. I hit the jackpot when I got my boys. They are perfect. This good report means Jacob can wait until April for his airway surgery like we planned. 

Ironically I got some interesting news. I had a heart echo done a few weeks ago because I was having some shortness of breath/chest tightness. I figured it was probably just anxiety but since we have so much heart disease in our family I figured I better check it out. I really expected they would call and say that I was just being silly and it was fine. Instead they said that my heart function was good but... BUT! I had some mitral valve regurgitation. There is nothing to do but keep an eye on it so they are going to do another echo in a year. My Uncle has severe mitral valve regurgitation and heart issues so that worried me. From what I read it can cause shortness of breath but most of the time people live their whole lives without it getting worse or causing issues. 

I decided to call our favorite Cardiologist and ask Dr. Heydarian what he though. He said that it was most likely an issue with the machine since there is no significant murmur. That as long as there was no murmur (Which there isn't) then not to worry. We all could have a small amount of leakage from time to time. So... I have decided to put it out of my mind. I will get another echo next year and if it gets worse then I will worry, not now. 

CHRISTMAS

The boys must have been really good this year because Santa really outdid himself. It was a Lego Christmas! We had a wonderful holiday and the boys even got a surprise from Rudolph. Can you believe he left them each a bell from their harness, a old one too. Aidan was really excited :) The biggest surprise was from my parents and Uncle Kevin. They got us a iPAD!!!!!!!!!!!!!!!!!!!! Jake and Aidan area already pros at using it. Jake watches his signing times on it and I have downloaded some pretty cool communication apps. I can't tell you how excited I am. This is going to open a whole new world of opportunity for both of our boys. Aidan has a bunch of letter writing/reading apps that he loves to do. It is amazing. We LOVE LOVE LOVE LOVE it! Beyond thankful for all of our gifts we received and family we got to see, we are so blessed! 

We spent Christmas with my parents and Andy's mom, Sister and her two girls. The day after Christmas we packed up then headed to Missouri to see Pappy and Mimi. Pappy gave us a scare and was in the hospital earlier that week with HEART ISSUES! Seriously what is with the heart issues in our families. Thankfully, he is ok and just needs to take an aspirin a day. Take care of yourself Pappy, we love you! 

We had a great time and got to meet the newest member of our family, baby Tristan. 

  

  

The boys were very happy to meet their new cousin. She is so tiny and so precious. We were also lucky enough to meet a fellow HLHS survivor, also named Tristan. I have talked to his mom on facebook for a while now. Our boys were born a few weeks apart. 

Happy New Year, wishing everyone a blessed and HEALTHY 2012!