Look what I can do Mom!

I have mentioned that Jake has been walking along furniture and walls for a while now. The past few days he has been letting go a little more each day. Today he finally realized that he can do it without holding on. He has been walking all over the house today. He is a bit wobbly but doing so good. I can't tell you how proud of him I am. He and Aidan both started walking at 15 months old. I worried that all of his surgeries, low oxygen and all of the other challenges he faced may delay him but he is hitting all of his milestones on time.



We are so proud of you Jacob. We love you and Aidan more than words can say!

We head to Missouri tomorrow. It's about a 12 hour car ride so we hope to get a lot of the driving done while the kids are asleep. Wish us luck! We can't wait to spend a great week relaxing with family.

Have a blessed and safe Fourth of July everyone!

Love,
The Bakers

My Little Big Boy

Sorry I didn't get this post up on Friday. We had company at our house so I didn't get a chance to get on here much. Like I have always said please never worry if I am late getting a post up. No news is GOOD news.

I thought this week I would write a little bit about the boy Jake is becoming. Jake is so much like his older brother. I have been noticing him doing little things that Aidan used to do. He hooks his feet together when laying down or sitting. He lays down when playing with cars or anything with wheels so he can watch them roll. He LOVES to watch Jungle Junction and Mickey Mouse. He will be watching it and just start laughing at the TV.


He LOVES trucks and trains just like his big brother. He also has quite a strong personality, just like his older brother. He lets you know what he wants when he wants it. If you are feeding him and he doesn't want a bite he will shake his head no until you give up and wait for him to open his mouth again. If he is mad, you know it lol. As soon as you tell him no he starts screaming and throwing a temper tantrum. Another thing he gets from his brother hehe. He is also super sweet just like Aidan. When he is sleepy he lays his head down on my lap but he fights the sleep as long as he can. Bath time is his favorite time of the day, as soon as I start the water he is right there squealing with excitement. It is adorable.

He is growing up so fast. I recently decided it was time to see if he would chew his baby aspirin. He gets 1/2 a baby aspirin a day. Many heart moms have started earlier than this but I worry about his vocal cords and tend to hold back a little longer. Turns out I didn't have to. Jake took it right out of my hands and chewed it up like it was candy. He looked at me like "Why haven't you always fed it to me this way". I was thinking the same thing since I have had to crush it up and mix it with water, this was MUCH easier.

Jake is walking SO much now. He still prefers to hold onto walls and furniture but if he is holding his binki he forgets about his fear of not holding on and he will walk the length of the hallway and living room without falling. He is so cute with his little waddle. He gets so excited when he reaches me at the other side of the room, he flashes me a big old smile and of course I cheer him on the whole way.


Both of my boys are growing up. I am so proud of them both and couldn't ask for better kids. Aidan is so good with his little brother. Sure he has to "Test" out all of Jake's toys and he is still working on the whole sharing concept but he also is always sneaking hugs and telling Jake he loves him. The love he has for his brother is obvious to anyone that sees them together. I know he will always be there to protect his little brother. I love watching the boys play. During the most scary times of my pregnancy when fear took over, I held onto the dream of my boys playing together and laughing.

That dream has come true. I am truly blessed.

I may not get another update in this week. Friday we head to Missouri for Pappy's 60th birthday party! This will be an adventure since we will be driving 12 hours. Unlike his brother Jake HATES the car. Can't blame the kid since every time we go on a long car trip he has surgery or tests done. Pappy actually turned 60 last year but we were in the midst of open heart surgeries so we could not visit. He was so great and decided to post pone his celebration to this year so we could attend. He can't wait to show off Jake and Aidan to all of his friends. I am sure I will be armed with hand sanitizer but it will be great to show off my boys!

2 weeks after this trip we will be headed to Philly on July 27th for Jacob's scopes and to discuss surgery. Please continue to keep Jacob in your prayers.

Ms. Zoe Lihn

Please also keep this little beauty in your prayers. Zoe Madison Lihn is Jake's HLHS buddy from CHOP and his future wife (arranged marriages are still around, right? lol just kidding). Zoe's family is from Arizona and flew to CHOP to give Zoe the best chance possible. There were 4 of us who met on facebook prior to the delivery of our heart babies. Stacey was one of the other 3 women. We were all due around the same time and helped each other during the difficult times. I was blessed to meet each of them and their sweet babies. Sadly baby Mia and baby Gweneth passed away a few months after they were born. Despite the different paths our lives have taken us on we have all remained close. They each own a special piece of my heart.

Stacey has been such an amazing support system for me and I can't imagine going through this journey without her. Recently, Zoe's heart function has decreased a bit and they are concerned her pulmonary artery may be narrowed. She will go to CHOP for an MRI and a possible heart cath on July 7th. Please keep her in your prayers and send possitive energy her way. Stacey Jake and I send our love and will pray non-stop that Ms. Zoe gets nothing but good news.

To follow Zoe's journey with HLHS visit: thelihns.blogspot.com

Pulse Ox Update:
I mentioned in a previous post that we were working on getting a bill introduced which would mandate that all hospitals in WV screen infants for CHDs using a pulse oximetry test. This inexpensive, non-invasive test could literally save lives.

Working on the pulse ox packets to mail out to WV Senators and Delegates

I am so excited to announce that Delegate Patrick Lane has offered to write this bill and introduce it to the Legislature. How exciting! I can't describe how grateful I am to Delegate Lane for helping us turn this dream into a reality. I will be meeting with him in a few weeks to get started on drafting this bill. Michelle, Ruth and I will also be meeting with the American Heart Association to come up with the protocols and work on the language for the bill. This means so much for our State and our children.

The nearest Children's Hospital is at least 3 hours away for many of us. Time is so precious with our babies so every second counts. Children should not be sent home undiagnosed and this bill would help prevent that from happening. It won't catch all CHDs but it will catch many of the severe defects where time is of the essence. I will keep you updated as we learn more. You can also show your support for the bill by joining our facebook page Pulse Ox West Virginia. Thank you as always for all of the support not only for Jake but for all of the amazing heart warriors out there.

Heart Hugs,
The Bakers

The Dates are Set...

I spoke to Philly today and it looks like we will be heading that way on July 27th. Jake will have appointments with ENT, GI and Cardiac Anesthesia on July 28th and his scopes will be on the 29th. GI may also put a probe in that will need to stay inside of Jacob until the following day. He will be spending the night at CHOP however we do not know if he will get to stay in the CICU or not yet. I would prefer him to be on the cardiac floor since he de-sats from anesthesia sometimes however the summer is a busy time due to elective procedures so they don't know if they will have a bed open. If not then he will have to stay in the PICU.

I am scared, nervous and anxious. Even though this is not his airway reconstruction surgery it is still considered surgery since it is done in the OR and Cardiac Anesthesia will be involved. Last time Jake had scopes he did not like the anesthesia and was already showing fear of doctors. He screamed and thrashed for two hours straight that night. Handing him over to the team of surgeons and doctors never gets easier for me, if anything it gets harder. I wish I could do it for him but I can't.

I know that Jake struggles to breathe. I know that they need to get more information to prepare for surgery. I guess that is what scares me the most. After these scopes we will have the discussion on when to do his airway reconstruction. The surgery I have been dreading. Any surgery is major for a hypoplast but this one is big. As his mother I just wish that I could make it all better for him but I can't. I can only be there for him and do my best to make it easier on him. It's hard because despite Jake's tiny airway he seems to be doing so well. It's hard not to let the what if's get to you but I am trying. I know that even though Jake appears to be doing well despite the small airway its too risky to let it continue. His heart needs to be protected and this labored breathing is putting more wear and tear on his already weak heart.

So despite my fears I am TRYING very hard to imagine how great he will feel once it's done. There are so many "What if's" in this life that if you dwell on them you will literally go insane. I need to let his team of doctors figure out what the best route is for Jacob and have faith that he will continue to beat the odds and kick some HLHS bootie!

The good news is on July 30th there will be a educational conference at CHOP for families of children with cardiac defects. I am not sure how much of it I will be able to go to because it depends on what time Jake is discharged that morning. Still it looks interesting and I am hoping I can at least go and hear about the single ventricle survivorship program. I have been wanting to learn more about that and how to get Jake into the program. I am pretty excited to see programs being developed to improve our children's future!

Here are some of the topics that they will be discussing:

• The impact of CHD therapy on neuro-developmental issues
• Pre- and post-operative experience of the child with CHD
• What's new in CHD research
• Exercise, nutrition and growth for the CHD patient
• Transition to adult care
• Single Ventricle Survivorship Program
  
• "In Their Own Words": CHD patients and parents share their experiences
• Sessions for adolescents and young adults (ages 15 to 25)

Please continue to keep Jacob in your thoughts and prayers as we approach this next chapter in our Journey. Here are some pictures of my two beautiful boys... Enjoy!

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

Fun in the Sun!

It's Friday and I am keeping my promise to try and put up a new blog post each Friday. Not a whole lot to update. Jake is walking along walls now as well as furniture. Still not walking without holding on but progressing everyday. I forgot to mention last time that Jake's cardiologist gave us the approval to take Jake to Pappy's house this summer. Pappy turned the big 60 last year and we were not able to celebrate with all of Jake's surgeries. They are having a big celebration for him on July 3rd so we are driving up there for the week.

It is a 13 hour drive so wish us luck! Jake is not a big fan of the car. I think its because for the first year of his life the only time we went in the car was to go to doctors appointments or hospitals. Can you blame the poor kid? We plan on leaving at night so the kids can sleep most of the way. We are going to play it by ear. If the kids stay asleep we may try and do the whole 13 hours. If they are restless or we get sleepy then we are going to spend the night half way. Should be an adventure!

We will be home from there a few weeks then back on the road to go to Philadelphia for Jacob's testing. I will update more on that when I get definite dates. Right now we are looking at July 28th and 29th. That would be perfect because there is a seminar for parents of cardiac kids at CHOP on the 30th. I would love to attend.

Last weekend we had beautiful weather and spent everyday outside enjoying the sunshine. My sister had a party at her house on Sunday and I had my sister and parents over our house on Memorial Day. Jake went in the pool for the first time, it was cold so he did not like it at all. Aidan had a great time playing with his friend Draegyn. Thank you Joe and Edy for coming!


It was great getting to hang out with adults and sit by the campfire. The kids enjoyed roasting marshmallows and using sparklers (with our help of course). We stayed at my sisters until 12:30am! Ok I know that doesn't seem late to many people but for us it is lol. We are ALWAYS home for the kids bedtime. Aidan had a minor meltdown because he wanted to go home but I went inside with him and watched Shrek until he fell asleep. Jake loved hanging by the campfire and stayed up until 10pm! Then he went to sleep in his pack and play. We really had a great time. Thank you Kelley for the great food and for getting me out of my house!

Enjoy the pictures!
(All photos taken by Edy Reynolds... Thanks Edy!)