Thursday, January 27, 2011

Shout it to the rooftops!

Lately I can't help but think about everything we experienced this year. About how blessed I am to have Jake in my life. 6 babies have died from HLHS this week, those are just the ones that I know about from facebook. I am angry. I am frustrated. I am heart broken.

Ask most people and they don't know what a CHD is.

CHD= Congenital Heart Defect

This is what CHD looks like.
Jacob post surgery

This needs to change. I can throw out facts all day long, there are many...
• CHDs are the #1 birth defect and #1 cause of death by birth defect
• 1 in 100 babies are born with a CHD
• 4000 babies born with a CHD won't make it to their first birthday
• Twice as many babies die from CHDs than all pediatric cancers combined yet pediatric cancer gets 5 times the funding.

Why don't people know what a CHD is?
Because children with congenital heart defects look healthy. People look at Jake and can't believe that he only has half of a heart. I am not down playing pediatric cancer so please don't think that. It is horrible and I feel so much for those children and their parents. I am just using it as an example. Everyone knows that kids get cancer. We see it. They show symptoms on the outside. CHDs are so deceiving. Kids with congenital heart defects look like any other kid. Their scars are covered by clothing yet deep in their chest their hearts tell the true story. They are sick. They are fragile. They could be taken from us at any moment.

Until the 1980's there was nothing that could be done for Jacob's heart condition. Now some institutions have a 93% success rate. But that is only for their child to live until age 5. There is no cure for congenital heart defects. My son will always have a single ventricle heart. He most likely will need a heart transplant at some point in time.

February is heart month. I beg each and everyone of you to help educate people about Congenital Heart Defects. We need people to know that they are out there. Knowledge is power. Awareness brings research. So many babies don't make it, many more are fighting this battle everyday. If you think it could not happen to you think again. CHDs know no bounds. Congenital heart defects can affect anyone. What if it were your child?

I plan on shouting to the roof tops. If I can educate one person on CHDs it is worth it. Our children need you. In the 80s HLHS was 100% fatal and now there is a 93% success rate, imagine what we could do in another 30 years. Spread awareness, Save lives!

Will you help me?

What I am doing:
• TV interview with WCHS8/FOX11 which will be part of a series the American Heart Association is doing on Survivors of Heart disease. We filmed this today and I have to say that Jake rocked his first interview! (Air date and time will be posted later)
• Article in the Go Red section of the newspaper promoting CHD awareness.
• Interview with WSAZ channel 3 to air on CHD awareness week (Feb 7th through 14th)
Heart Ball (Jake's story and why its so important to donate)
Daily Mail (Newspaper) article on Jacob's Journey
• Heart Walk: April, Huntington WV
• Heart Walk: September, Charleston WV
What you can do:
• Tell someone about CHDs.
• Donate blood.
Children being treated for cancer, premature infants and children having heart surgery need
blood and platelets from donors of all types, especially type O.

• Donate to help fund CHD research:
American Heart Association
Children's Heart Fondation
Congenital Heart Information Network
It's My Heart
Little Hearts
Mia Marrone Heart Fondation
Mended Little Hearts

Thank you for supporting Congenital Heart Defect awareness!

Sunday, January 23, 2011

Happy 10 month birthday Jacob!

Jake is keeping me VERY busy these days. He is everywhere and gets into everything. He still is not crawling but he is rolling all over the house. Army crawls here and there but not much. He has figured out he can get there 3x as fast if he rolls and boy does he get everywhere.

He also started clapping! I know its a small milestone to some but for us its a big one. He has been through 2 open heart surgeries in his short little life so those chest muscles are weaker than the average kid. I may have been a little to excited about the clapping because he realized every time he did it I would say Yay! Before I knew it he was clapping non stop and laughing at me as I followed his cue and said Yay!

Jake also has mastered an IPOD game. Yes you read that correctly, my 10 month old can play ipod. I downloaded a game called peek-a-boo barn for him. A barn pops up and looks like its shaking so they know to click on it. Jake learned very fast that if he scratched the screen the barn doors opened up and an animal would be in there. Then all on his own he touches it again so it closes and he repeats the process. He played the whole game by himself and was very entertained by it! Don't worry everyone who disagree's with letting kids play games/watch tv.. this is not a 24/7 thing lol. I am thrilled at how well he is interacting though. Developmentally he is doing better than I ever imagined.

Jake also started saying Ma-Ma! He is not saying it much but has said it a few times and of course I jump for joy every time I hear it. Aidan's first word was da-da so it was only fair that Jake say my name first.

We are trying not to use his g-tube much. He downed 8 ounces in less than 10 minutes earlier! He has never done that much before. Usually I just let him take what he wants and if its a good amount like 6 ounces I don't push it. If I know he has not taken much and its been a few feeds in a row then I make sure he gets the full 8. This method is really helping because he is taking more baby food by mouth which we wanted. He is just doing so well and I am so proud of him. I am still working with Speech and Nutrition to monitor his progress and they are both pleased. I ran this new feeding approach by his pediatrician who also said as long as he is gaining they are happy with how he is doing. He has consistently been in the 50 percentile range so his weight is remarkable for a hypoplast.

Jake is 10 months old today!
(As you can see he is very excited about this)

It is hard to believe that this time last year I was preparing to move to Philadelphia to await his arrival. I am so proud of both of my children. I talk so much about Jake on here because its "Jacob's Journey" but Aidan is my hero as well. That little guy has been through so much this last year and never skipped a beat. He is the most amazing big brother and has never resented or complained about all of Jake's appointments, attention or even me being gone for so long after Jake's birth. I am amazed at how he has handled it all and could not be more proud of him.

Congenital Heart Defect Awareness

February is heart month so its going to be a busy month. We plan on doing a few newscasts and articles to help promote CHD awareness. The American Heart Association has taken to Jake's story and he will be a child advocate for them. They will tape Jake's story of hope and play it at this years Heart Ball and use it for news spots covering Go Red. I will post the newscasts when they air. More great footage to show Jake when he is older. His story has touched so many lives and I hope one day he is proud to have helped make a difference. Telling our stories is what will help open more eyes and inspire more research which hopefully one day can be life saving for our kids. We may be one small voice but together with all of the other parents and adults living with CHD we can make a difference.

I also wanted to say thank you to my Aunt Linda for purchasing a beautiful "Mia Charm" in honor of Mia Grace Marrone. Mia's mother Jenn has become a very close friend of mine. She designed and had these beautiful charms made in honor of Mia and to help spread awareness. Anytime anyone asks about this unique piece of jewelry it creates an opportunity to share Mia's story and educate others about congenital heart defects.

Learn more about baby Mia and see this amazing necklace in detail through The Mia Marrone Heart Foundation. You can print an order form by clicking here or by emailing a request to if you do not have a Facebook account.

Most Congenital Heart Defect kids don't look sick. You can't tell them apart from other kids, but their scars are VERY real. Most face more in their short lives than any person can imagine. Congenital Heart Defects are the #1 cause of death in children. CHD Awareness Week is Feb. 7-14.
Raise Awareness, Spread Hope.

Saturday, January 8, 2011

Reaching Milestones

Jacob has really been progressing lately. He got his two teeth and all of a sudden has decided that its time to take off. Jake sits so well now and no longer tripods at all. He would sit for hours if I let him. If I try to put him in his chair that he normally eats in, he pushes his entire body up as if he is trying to climb out of it.

He is also trying to crawl! He has figured out he can get places fast by rolling around so for the most part he rolls all around the room. At one point I remember I could not get him to go on his belly at all. Now I can't keep the kid off of it. He will tilt from one side to another until he scoots forward in somewhat of an army crawl to reach his target. The main target that he crawls to.... the remote control. This is the same tactic we used to get Aidan to crawl. Such boys!

Jake is still working on pushing himself up to the sitting position on his own. He gives it a good try but only makes it about half way. He is also figuring out how to get from a sitting position to a laying position. He goes from sitting to putting his arms way out in front to where he is almost doing a yoga position lol. He goes back and forth until finally he just throws his body forward and face plants into the carpet. He never cry's. Just goes on with his business and starts rolling around and going for whatever he sees.

Jake has such a strong personality. He knows what he wants and better get it when he wants it or look out lol. If he hears Andy or I and we don't come right over to pick him up, he lets us know he is angry. He arches back in his chair and looks at us and screams until we pick him up, then he is smiling and happy as can be. Can we say spoiled lol (He deserves it!).

Lately he has been staying up longer. His naps are becoming shorter and he is napping less. This could also be due to his big brother running around the house and me desperately trying to get ihm to calm down and let Jake sleep... Yeah right. Trying to get a 3 year old to calm down is not that easy.

I love how Aidan and Jake interact with each other all of the time. They play and laugh, its so great to hear them laughing together. Tonight Andy was holding Jake and pretending to chase Aidan. Jake was laughing so hard I was just in heaven listening to him and Aidan giggle.

Still no Mama or Dada although he does say MA... I don't think its related to me though. I say Mama to him and he laughs at me... Nice lol.

I met with Speech and Nutrition and we switched up his feeding a bit. He was taking 8oz bottles 4 times a day but I was having to push more and more through his tube because he just was not hungry. It was also very hard to get him to eat baby food since he was full. We cut him down to 8oz bottles 3 times a day and its working. He is drinking most of his bottle by mouth and is also eating at least 3 containers of baby food a day which makes up for the calories that we cut out from the other bottle. Lately he has taken a few more ounces right before bedtime, so he is still getting a little more.

Jake puts EVERYTHING in his mouth right now. I am constantly watching him to make sure he doesn't grab something when my back is turned. Anything he can reach goes. Aidan has been so good about protecting his brother. He knows that the baby gate MUST be closed at all times and makes sure he closes it. I really have the best kids!

Oh and Jake is 21 pounds! Go Jake Go! He is doing great.

Thank you for the continued prayers for our family. Life has thrown us many curve balls this year. If you told me a year ago about everything that we would have gone through in the past year I would have gone into a panic. But this last year has just taught me so much. I don't look at what we have lost or the changes that have happened. I look at what we have. I have two beautiful baby boys sound asleep in their rooms, hopefully having sweet dreams. Life is very uncertain for our family right now. Our eyes our now open to things we once took for granted. I know we have many more struggles to face ahead of us but in my heart I just feel that we will be ok. Until then we are just going to take lifes curveballs, smile and throw them right back.

Heart Hugs,
The Baker Family

Sweet Dreams!

Sunday, January 2, 2011

Give Back and Light the Way

Ask any heart parent about the moment their child was diagnosed and they can tell you, in great detail, exactly how it happened, who was in the room, how they felt, what else happened that day. One of the most difficult aspects of the heart parent journey is that moment of diagnosis - the moment when your life changes forever. There is so much to process at that pivotal point and in the days and weeks to follow. Most newly diagnosed heart parents turn to the internet for answers and information about their child’s heart condition. Hypoplastic Left Heart Syndrome (HLHS) is, in particular, an extremely complex condition and much of the medical information available online is out-of-date and speaks of hopelessly outdated survival rates and lack of quality of life for single ventricle children. As a result, many newly diagnosed parents are left feeling hopeless and very much alone, forced to make critical decisions about their unborn child without a true understanding or complete picture of how well many of these children actually do.

I, along with nine fellow heart moms, would like to reshape the outlook for HLHS infants and children. Over the last few months, we formed Sisters by heart - an HLHS support group - to provide support and resources to newly diagnosed HLHS parents. It is a way for us to give back and light the way for another family following behind us on an otherwise very dark path. We want to give hope, to give love, to give support, and to give practically. We provide care packages for newly diagnosed parents which includes many items we’ve found useful to us along our journeys (pacifiers, mini-notebooks, specialized baby clothes that allow for tubes and wires, etc.), bio sheets on our children (there is nothing to give you hope quite like seeing an older child with your child’s same condition who is flourishing) and informational booklets and fliers providing current information on HLHS and options for newly diagnosed parents.

I know many of you who read my blog have been touched by Jacob’s story and the stories of so many of his heart friends and are eager to find a way to help. Here is your chance.

Sisters by heart is comprised of 10 heart moms from various cities around the United States. We are seeking help with our initiative, either through donated items or financial assistance. (Please understand that we are not yet incorporated as a 501(c)(3) – we have not ruled this out, but it is not yet something we have pursued – so any financial contributions will not be tax-deductible at this point.) We hold Sisters by heart dear to our hearts, as we realize there is a significant need and lack of direct support to newly diagnosed HLHS parents. To help Sisters by heart or to learn more about our mission, please visit our blog at or email with any questions.

Please, join us in giving back and lighting the path for newly diagnosed heart parents.

From our hearts to yours,

Saturday, January 1, 2011

Here is to a Happy and HEALTHY New Year!


So I had intended to do a blog entitled "2010: Year in Review".... seriously it would be way to long and I have no clue where to even begin. It seems like yesterday that I was pregnant with Jacob and telling my husband that we just needed to get through 2010. We did it! 2010 was quite a roller coaster for us. We have felt fear, heart ache, anxiety and cried many tears. We have also felt love, compassion, strength, courage and so much HOPE. Most of all we have been blessed.

This year we had an amazing little boy named Jacob. In his short 9 months Jake has been through 3 heart caths, 2 open heart surgeries, 1 g-tube/nissen surgery, more tests than I can count and so many x-rays that he and I should both glow in the dark by now. 3 months of the year our family was split up as Jake was recovering in Philadelphia. We have been lucky enough to have the best doctors, nurses and specialists both in Philadelphia and here at home looking after our son. We also have the BEST family who has been there for us more than I could have ever asked for. Our friends and even perfect strangers have shown us so much love and support which I hope to be able to pay forward one day.

We have also gained a new family... our heart family. We have met so many amazing parents and children. We have also felt the pain of others who have had to say good-bye to their sweet angels, yet we have witnessed their continued support and love for the CHD community. This is not a group I ever imagined joining but I am so proud to call my self a Heart Mom. They have shown me strength and compassion like no other. I am more than proud, I am honored to be a part of this family.

I sat here tonight watching my two boys laughing together while banging pans and tooting their New Years horns and I felt so blessed. I remembered being pregnant with Jake and saying that I looked forward to the day where I can watch my kids laugh and play and I would know that I have made all of the right choices and that I could finally breath a sigh of relief. Well I am not sure I will ever breathe that sigh of relief but it did melt my heart as I knew that all of the heart ache, fear and tears were nothing compared to the joy that I feel today.

Josh Wilson wrote a song for a friend of his who has a son with HLHS. Anytime I need some courage or strength I listen to this song and it pushes me through. This song puts into words exactly how I am feeling. Our fight is far from over, but the pain can't compare to the amazing joy that Jake brings into our lives.

Josh Wilson- Before the Morning (Chorus)
Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning

Our New Year Resolution:

From the bottom of our hearts we wish everyone a very happy,
HEALTHY New Year full of blessings.

Here is to 2011!