So much awareness... so little time!

This has been a busy week in the heart community and I am so happy to share with you all of the good that is being done. I am juggling quite a few projects right now and am very excited about all of them. I am just warning you this post will be full of links and information. It is all for a good cause so please check it out!

First here is your... JACOB UPDATE

We have all had bad colds this week but are all doing well and getting better. Jacob's oxygen levels have been where they should be and despite a runny nose and cough he seems to be handling it VERY well. I took him in to his doctor just to be on the safe side and she gave me a prescription for Nasonex which has been helping with his drainage.

He also is getting in his 4th molar so that has made for a fussy boy. He has not been taking more than one nap a day but has more energy STILL than any of us. He is also walking a whole lot more. He is walking 6ft gaps now without falling. He still prefers to hold onto walls and furniture but he is going further everyday despite his cold!

(See updates are shorter now that I am blogging weekly! But don't get too excited the next part is really long but well worth the read!)

*As a side note I not only encountered a physical virus this week but also a computer virus while on my mission to spread awareness lol. Anyone that knows me also knows that nothing can stop me when I am on a mission, not a computer virus or any other for that matter lol.

Here is a run down of what I have been working on and how you can get involved!

Pulse Ox West Virginia

Facebook has exploded this week with pages dedicated to promoting Pulse Oximetry Screening all across the country. Each state is trying to petition their legislation to pass this law in all 50 states. I along with two other heart moms (Ruth and Michelle) have joined forces to try and get a law passed in West Virginia that would make Pulse Oximetry Screening mandatory in every hospital for all newborns prior to discharge.

A pulse ox test is simple and non-invasive. It also costs less than a diaper change. It looks like a little band-aid that is wrapped around the infants foot or hand. It then displays the oxygen level and heart rate on a monitor. I am sure if you have ever been in the hospital you have had a little white clip attached to your finger, that is a pulse ox.

Photo of Jacob wearing his pulse oximeter when he was first born.

1 in 100 babies are born with Congenital Heart Disease (CHD). For some of the most severe cases, a simple check of oxygen saturations in the newborn can indicate the presence of a heart defect. Pulse oximetry does not detect all heart defects, but is effective in the more severe cases. Time is of the essence when a child is born with a severe congenital heart defect. The quicker treatment is established, chances of survival increase. It is even more important in our state because many residents live at least 3 hours from the nearest Children's Hospital. Sadly, many newborns are sent home undiagnosed only to pass away a few days later. This simple test saves lives!

Recently two states (Maryland and New Jersey) have passed this bill into law and it is our dream that West Virginia follow in their footsteps.

We are calling this Corbin's law in honor of baby Corbin. He was born on February 20th with a congenital heart defect that was not detected in-utero. Sadly Corbin passed away 2 days after having open heart surgery. We are fighting to get this bill passed into law for Corbin and for all of the other babies who are no longer with us and for those like Jacob who are still fighting everyday.

Click here to read more about Corbin's Story

How you can help...

1. Like our facebook page.

This page will keep you up to date on what is going on with the bill and how you can help. We will also be posting new articles and information as we get it. Please show your support for this bill by clicking on the link below and clicking the Like button on the top of our page.

Click here to visit Pulse Ox West Virginia (Corbin's Law)

2. Write your Senator petitioning to pass this law in West Virginia

A fellow heart mom Kristine McCormick has made this easy! Kristine's daughter Cora was born on November 30th, 2009. On December 6th Cora died suddenly and unexpectedly in her mother's arms of an undetected congenital heart defect while she was breastfeeding. Her mother has been fighting to make it mandatory for Pulse Ox Screening to be done ever since. Cora lives on through all of us fighting to make a difference in her honor.

Kristine has set up a site that is dedicated to Pulse Oximetry Advocacy. You can find sample letters, articles and a ton of other information to help you in petitioning for Pulse Ox in West Virginia or any state across the country!

Click here to Visit Cora's Hopes and Dreams

Five Easy Steps to Pulse Oximetry Advocacy- by Kristine McCormick

Here is the contact information for our local Government.

Office of the Governor
State Capitol
1900 Kanawha Boulevard, East
Charleston, West Virginia 25305

Email our State Senator:
jeff.kessler@wvsenate.gov

3. Educate yourself on Pulse Oximetry Screening.

Here are some articles to help you educate yourself and for you to attach to your petition!

New Jersey Signs Bill requiring New Jersey Hospitals to Screen Newborns for Congenital Heart Defects

Maryland Governor Signs Bill that Will Help Newborn Screening for Congenital Heart Disease

http://www.cardiacscience.com/blog/2009/08/pulse-oximeter-newborns/

Map of where we are in the US on Pulse Ox Screening. We have a long way to go!

4. If you don't live in West Virginia but still want to help out your state, you can!

Facebook pages for every state are being set up all over the country. To see a list of States who currently have a page click here. If you don't see your state, start a page of your own!

Don't forget to click here to check out a list of states that currently have or are in the process of getting a pulse ox bill approved.

5. Spread the Word.

Share our facebook page with everyone you know and help spread the word about Pulse Oximetry Screening.

Thank each of you in advance for helping us reach this dream and literally helping us save lives!

American Heart Association Start! Heart Walk

Team Jacob is going full force and we are excited to announce we have already collected $680.00 to help fight Heart Disease. We still have a long way to go to reach our goal of $3000.00 but I know we can reach that by September!

Donate to Team Jacob

Michelle Roth my fellow team captain has also set up a fun way that you can help Team Jacob and get some goodies for yourself as well. Thirty-One will be hosting a online fundraiser and 20% of each order will go to Team Jacob! So start shopping you have until June 15th to buy great products for a great cause.

Click here for the Thirty-One Fundraiser

We are also still looking for people to join our team. We would love for you to come out and walk with us and support heart disease. Can't make the walk? Don't worry you can still join and help Team Jacob raise funds for the American heart Association. Simply click on the link below. Select Join a Team and search for Team Jacob.

Click here to Register

Here is a sneak peak at this year's shirt design...
It am still working on the back but here is a sneak peak at the front of the shirt.
I will let everyone know when we are ready to take orders!

Finally, As you all know I am part of an amazing group of women called Sisters by Heart. We send care packages out to families who are about to have or have just had a newborn diagnosed with Hypoplastic Left Heart Syndrome. This mission is so close to my heart and I can't describe to you how good it feels to be able to help others who are just beginning their journey. There is nothing better than being able to give them hope and support through such a stressful time.

There have been many great things that we have been working on. Sisters by Heart recently sent out our 50th Care Package! We also have purchased a new web domain and email address:

New Web Address: sisters-by-heart.org
Email: info@sisters-by-heart.org

(You can still access us through heartsisters.blogspot.com, it will just redirect you to the new domain.)

Our new moms and dads will be getting these new bags filled with goodies for mom, baby and siblings! These new bags will really come in handy for carrying things to and from the hospital.


Look for more exciting news in the upcoming weeks. We hope some projects we have going on will allow us to help even more families!

Until then don't forget we have a new blog post every Sunday night and you can help us give the gift of Hope by donating through our paypal link on the right hand of our site.

A donation of $35 will pay for a package to be sent to a family who is just beginning this journey. The items will help make their stay easier, the support and realization that they are not alone will give them strength and most of all HOPE!

Once again I want to thank you all from the bottom of my heart for all of the support you have shown us over the past year. I hope I can help make a difference and pay it forward! Stay tuned...

Love,
The Baker Family