Jacob's Journey

Faces of CHD: Zoe's Story

2012-02-11T07:22:00.000-05:00

It is Congenital Heart Defect Awareness Week. Each day this week I am sharing a different story featuring an amazing heart warrior. Thank you to all of the families who have allowed me to share their stories with you. These are the faces of CHD.

Day 5: The Story of Zoe Renée Fultz

After years of struggling with trying to conceive, pregnancy loss, infertility, countless day of heartbreak and tears... we learned we were expecting twins August 1, 2011. We thought this would be a perfect story ending, but that was not the case...

Our journey to be parents took us down another road of struggles and battles. On March 1, 2011, at 18 weeks pregnant, Zoe was diagnosed with Hypoplastic Left Heart Syndrome and Dylan with Down Syndrome and Esophageal Atresia. This was absolutely crushing and left us with wondering if there was any hope for a positive future with our children.

On March 25, 2011, at 21 weeks 4 days pregnant, we lost our sweet little boy. Our hearts were broken but we still had to fight for Zoe. I was unexpectedly admitted to the hospital with preterm labor on April 28, 2011. After countless days of trying to stop labor, Dylan was born peacefully sleeping on May 5, 2011 at 2:21 am.

That same morning I was sent to surgery to save Zoe from making a debut. We became a popular miracle at the hospital as labor stopped and Zoe continued to thrive. At 34 weeks pregnant and 8 very long weeks of hospital bed rest I was finally allowed to return home. This lasted exactly two blissful weeks.

Zoe decided to make a statement of her strength and was born on July 4, 2011. She arrived in this world like a little firecracker ready to battle for her life. At just seven days old on July 11, 2011, Zoe underwent her first open heart surgery, the Norwood, under the care of Dr Starnes at CHLA. After almost eight weeks of ups and downs she was discharged on August 25, 2011 to go home. We spend the next four months loving every moment as she continued to thrive and beat all odds.

On January 19, 2011, at just over six months old, Zoe underwent her second stage surgery, the Glenn procedure, again under the care of Dr. Starnes at CHLA. She had a spectacular and speedy recovery of just six days and home on the seventh day. What we hope to be Zoe's final surgery, the Fontan shouldn't be for a couple of years.

Graduating from "interstage" is wonderful and we now have a taste of what "normal" life is like. We cherish very moment with our daughter and are thankful that she is a part of our lives. Her smiles brighten our days, her giggles warm our hearts. Her half of a heart is more whole then we ever imagined.

For CHD week Zoe's family has decided to sell a heart awareness wristband (Pictured above). Their goal is to sell 200 of these bands! These are available for $5.00 each and will be going out by mail starting February 10th. All proceeds will be donated to help other families who face life with a congenital heart defect. Please help them spread hope and awareness while showing your support for their heart warrior, Zoe.

If you would like to purchase a wristband please email celebratezoe@gmail.com

To learn more about Zoe click here.

Faces of CHD: Xavier's Story

2012-02-10T06:57:00.002-05:00

My husband Nate and I were so excited to find out what we were having. We had been calling the baby "furda". As in this is "furda" baby. Silly I know. I was so ready to give my little peanut an identity. I thought for sure that I was having a girl. We started that appointment off with the ultrasound. She started pointing things out to us. The brain, lungs, legs, spine, arms, face. Xavier was face down, so she had to really work to get some pictures. All she said about his heart was that she was getting a good heart beat, but that she could not get a good picture. She said that it was most likely his position. She gave us the news that it was a boy. I was so excited. My heart was beating so fast. We left the room and she said to wait for the doctor. I can't explain it, but my heart never slowed down. I remember thinking as we were waiting, that I might pass out it was beating so fast. I just decided that it was because I finally knew that I was going to have a son and went on ahead sending out text messages with the good news.

Then we saw the doctor. She was very calm. She just said that she could not see all the chambers of the heart. She said it could be something. It could be nothing. Since he is in such a difficult position, she wanted us to go to a high risk doctor to get a 4D ultrasound done. Something inside me knew that something was wrong. I cried the whole way home. It would prove to be a very trying week in our lives. At that time I can honestly say that it was the worst week of my life.

So we all know how the story ends. High risk doctor informs us that our little baby boy will essentially be born with half a heart. Amnio is done...and the stages of morning begin. It was only about 3 hours between leaving the high risk doc and arriving at the pediatric cardiologist but if felt like a lifetime. My parents made the 4 hour trip from PA to be with me. It was such a blessing to have them there. We were not really presented with much hope from the high risk office. She really could not explain HLHS to us or give us any hope that anything could be done. She was grossly misinformed. I walked into the cardiologist office feeling like I was walking to the electric chair. He took us into his office and asked some general questions. Then with the warmest smile on his face he said..."If this is HLHS..I have places to send you where they can fix your son's heart. Its not going to be easy, but he can life a normal, healthy life". I am pretty sure that was the first time we took a breath since the week began. I knew at that moment I would go anywhere, pay anything, see anyone to give my baby boy a fighting chance!!

Xavier Thomas Ross was born on May 28th, 2011 at 8:04 pm. He was so pink and had big beautiful eyes and a wrinkly forehead. I loved him the minute I saw his little face. He did well and we were able to spend some time with him before he went to the CICU. He spent four days just chilling out and fliting with the nurses. On Wednesday, June 1st, 2011 he had his first open heart surgery called the Norwood. He did well and only had two set back during our first month in the hospital. He went home on June 22nd, 2011. He did great at home and had his feeding tube out by August. He had his second open heart surgery on Thursday, October 13th. It was hard to see him in so much pain, but he was such a tropper and went home in a week. It took about two months for him to really strat to act like himself again. Now he is thriving dispite HLHS...He is winning his fight. He still gets his Lovenox shots and still take medicine, but he is a normal, happy 8 month old!! And we are super proud of him.

To read more about Xavier check out his blog:
xaviersheartjourney.blogspot.com

Faces of CHD: Bodie's Story

2012-02-09T09:26:00.002-05:00

It is Congenital Heart Defect awareness week! Each day this week I am sharing the story of amazing heart warrior. I want to thank the Bennett Family for allowing me to share their story with you. Bodie was born a few months before Jacob. He was such an inspiration to me, this little boy is the true definition of a warrior. Keep kicking butt Mr. Bodie, we love you!

Day3: The story of Bodie Isaac Bennett

On October 1, 2009, our world changed forever - the day weheard "your unborn baby has a congenital heart defect." Although weknew it was serious, it would take weeks and several more ultrasounds and fetalechoes before we would have a final diagnosis of Hypoplastic Left HeartSyndrome. Our sweet baby was to be born with half a heart.

We spent the next 4 months crying, pleading with God andpraying for a miracle. We thought He would answer by healing our baby's heartbefore birth. But as God often does, he answered our prayer in another, muchbetter, way. He gave us a little boy who would have more fight in him than wecould ever imagine. A baby boy that would have not only half a heart, but oddgenetic arrhythmias and a ridiculously low resting heart rate to go along withit, but who would fight on and astonish everyone. A baby who would be a dailytestimony to the amazing power of our Lord.

Our sweet boy, Bodie Isaac Bennett, was born on February 16,2010 at a hefty 7lb13oz and 20.5in.

He had his first open heart surgery, the Norwood, on February 22, 2010.

He had a fairly rough recovery before finally coming home at6 weeks old. He had a paralyzed vocal cord but managed to take all of his feeds(thickened) by mouth. He also had an unexplained dependence on oxygen and wassent home on 1L of oxygen. Our life settled into a new "normal"between round the clock meds and oxygen.

3 weeks later, he became slightly lethargic during hisfeeds, so I took him to the ER just to get him checked out. Within an hour ofbeing there, his oxygen sats had dropped so low they needed to “bag” him andsend him directly to the CTICU. The next day, they sent him for a cardiaccatheterization. He coded on the table, and again once he got back to his room.We almost lost him that night, until an angel of a doctor decided to try pacingBodie externally. Within an hour, he turned around. A week later, he had hissecond open-heart surgery, to install a permanent pacemaker and change out hisshunt. He came out of surgery in great shape and flew through recovery, cominghome just 2 weeks later!

4 days after that, he was readmitted to the hospital withblood in his stool. During the week it took them to determine than it wasc-diff (a nasty hospital-borne infection), he contracted parainfluenza from aroommate. We almost lost him a second time as he was rushed to the CTICU andintubated. Once they got him on the right antibiotics, he was able to beextubated and recovered nicely. He was moved to the step down floor and spent30 hours there before being rushed back to the CTICU again in criticalcondition. He was again intubated and given medical support as they determinedthat he had an MRSA infection in his blood. He then spent 6 weeks in thehospital on IV antibiotics (5 of those weeks were spent in the CTICU as heneeded a heart medicine, milrinone, due to the beating his heart took from allof the infections).

The day he finished his antibiotics, he was discharged! Hethen spent almost 2 months at home, growing and thriving. He did amazingly wellwhile at home and we cherished our time together, as a family of 4, finally athome!

On September 13, 2010, at 7 months old, Bodie underwent histhird open heart surgery, the Bi-Directional Glenn. By all accounts the surgerywas a success. He was extubated the next day and home 4 days later!

Bodie has been home since then (other than a 1 night stayfor a virus induced tachycardia (high heart rate) in August 2011) and isthriving. He is now a rambunctious almost 2 year-old. He LOVES to climb (onANYTHING) and is in a perpetual state of motion – we call him the “tornado withlegs.” Honestly, other than getting more winded than your average kid (which hedoesn’t let stop him AT ALL) and giving him meds 3 times a day (which is noharder than giving a kid Motrin or Tylenol – it’s not nearly as bad as itsounds), he’s just like any other little boy. If you don’t see his scars, you’dnever know what he has been through. He is a ball of fire and keeps us laughingall day long. We are loving watching him grow up with his big sister.

We know Bodie has at least one more surgery in his future,the Fontan (probably Spring/Summer 2013, although it’s really up to his bodyand when he needs it), the "final" surgery in the 3-stage palliativesurgeries used to treat HLHS. And he will need pacemaker maintenance for life.But our lives are so normal rightnow. When we embarked on this journey, I could never have hoped our lives wouldbe this good. Our sweet fighter has had a rough road to be sure, but God hasanswered the prayers of so many faithful people who have been praying withoutceasing for Bodie and our entire family.

We could not be more blessed to have Bodie in our life. Hehas taught us so much about strength and determination and willingness to live.And about taking life one day at a time and enjoying the small moments. Heloves life. He has no idea life dealt him a bad hand. He was born with half aheart, yes. But twice the spirit. Twice the determination. Twice the love. Welove our little man and would walk this journey again in a heartbeat!

Click here to read more about Bodie!

Faces of CHD: Corbin's Story

2012-02-08T08:40:00.002-05:00

It is Congenital Heart Defect Awareness Week. Each day this week I am sharing a different story featuring an amazing heart warrior. I can't thank my next guest blogger more for sharing her story with us. Ruth has gone through more than any parent ever should. Despite what she has gone through, she is constantly fighting for our heart kids and has dedicated her life to spreading awareness and saving babies. Ruth, I am honored to call you a friend.

Day2: The Story of Corbin Walker Caruthers

When I first got pregnant, I had never heard about heartdefects and how they affected 1 in 100 babies. I didn’t know they are the mostcommon defect in newborns. I also didn’t know there was a way to help detectheart defects, called pulse ox. Now I know. I know a lot about heart defects and I want toshare what I know.

February 20^th, 2011 I gave birth via C-section to a tiny,wrinkled, little boy named Corbin. He looked like a little old man but I lovedhim instantly. We had no clue to the hardships he would endure for the nextthree months as he fought for his life. Corbin had an interrupted aortic arch, ASD’s and VSD’s (which are holes in the heart), double outlet rightventricle (problems with the structure of the heart), and aortic and pulmonarystenosis (narrow veins). All of this was caused by Williams Syndrome. agenetic disorder presented at birth where one tiny little section of one geneis deleted. It messes with the elastin which is why many Williams Syndrome kidshave heart problems. Corbin’s defects were pretty significant, and the doctorshad a hard time deciding what kind of procedure would be best.

Corbin underwent three heart surgeries to try and fix hisheart. He was an amazing fighter and I am so proud of him. He touched a lot ofpeople while he was in the hospital and there were many tears the day he passedaway. His room wasn’t just full of doctors and nurses, but of people that caredfor and loved my little boy.

It has been eight monthssince he was taken to Heaven, and every day I make it my mission to spreadawareness of heart defects and pulse ox. I want to reach as many people as Ican so that every mother will know what it means if her babies hands and feetturn blue. Or if their child is breathing heavily and can’t nurse and breath atthe same time. I just want to plant that little seed of knowledge so that whensomeone needs it, they will remember “pulse ox” and they can ask for help.

Thousands of babies are born each day. Some of them willhave Down syndrome, some will have autism, and some will have heart defects. Itis possible. It does happen. And it is common. Sometimes I feel like I’m talking to myself, that otherpeople aren't listening. Then I receive a message from a mother asking aboutpulse ox. They tell me they are pregnant and they heard my story and want toknow more about pulse ox. In those moments, Corbin is with me. He is helping tosave other lives and I am so proud that he is making a difference. So no matterhow many people read this, I hope it will reach that one person who needs itthe most. They will read that pulse ox is a cheap, non-invasive test that cansave their babies life and they will do something about it. Whether they simplyrepost and share or they tell their friend or sister that is expecting. Someway the word will be passed and lives will be saved!

There is currently a bill working its way through WV legislation. HB4327 was recently passed through the Health and Human Resources Committee at the House of Delegates and will be going to the Judiciary committee next. We hope to have this bill passed this year and name it in honor of Corbin. Pulse Ox testing is cheap, no-invasive an it can save lives.

Please help support HB 4327.

To get updates and alerts telling you how you can help get Corbin's Law passed in West Virginia please register at yourethecure.org

Learn more about Corbins Law, join the facebook page by clicking here.

Pulse Ox Advocacy Links:

If you would like to help, please visit this page to find apulse ox advocate near you! (http://corashopesanddreams.org/pulse-oximetry-screening-by-state/)
Here is a map showing which stateshave bills or have introduced legislation. (http://www.cchdscreeningmap.com/
Pulse Ox information and Resources: http://www.pulseoxadvocacy.com/

To learn more about Corbin's Journey visit: http://thecorbinstory.blogspot.com

Faces of CHD: Aly's Story

2012-02-07T16:35:00.000-05:00

My husband and I had been married for 3 years when we decided it was time to add one more to the family. On November 14, 2008 I found out we were having a baby! We were ecstatic! For some reason, I just knew I was pregnant. I bought pregnancy tests and took one everyday for 5 days before that. I just had this feeling~ I knew we were pregnant. Finally, I got a positive one! (2 actually - one for back up :) ) For the next 6 months we blissfully planned for the arrival of our baby. We painted a nursery, we registered for gifts, we picked out a crib... the fun stuff. :) At our 20 week ultrasound, the tech was really struggling to get a good view of the heart. She kept saying, "I can see it, I just can't get a good picture of it." She didn't seem concerned, she just kept laughing that we had a stubborn little baby who wouldn't move the way she needed her to. We laughed right along with her and didn't think twice about it. Never once did it cross my mind something might not be right.

On May 9, 2009 I went for my level 2 ultrasound to get a closer look. I wasn't nervous at all. Again, it never crossed my mind something might not be right. Our world came crashing down that day.

Our daughter was diagnosed with Hypoplastic Left Heart Syndrome at 30 weeks gestation. We were devastated but we didn't give up. We were thrilled to find out that the University of Michigan was ranked 3rd in the nation for treating this CHD and was located a mere 2 hours from home. Our daughter, Aly was born at U of M on June 30, 2009.

She scored 8 out of 9 on her APGAR tests and did very well on the days leading up to her first surgery. Aly was born via C-Section so I was unable to see her until she was over 24 hours old.

It was 7 days before I got to hold her. And even when I did I wasn’t really “holding” her. I was holding blankets and tubes and wires with a little tiny baby in the middle of it all.

This picture was taken just moments before she was taken to the operating room for her first open heart surgery.

She had her Norwood procedure on July 6, 2009. She survived surgery and did really well until they got back up to the Pediatric Cardio-Thoracic Unit. She had a rough patch that evening of trying to get stabilized but pulled through.

Underneath that heart shaped gauze is a yellow membrane that was covering her chest. We could look through the membrane and actually see her heart. Her chest was left open for 4 days following surgery.

8 days later, she went back into the OR for a shunt revision. The shunt that had been placed in her tiny heart was narrowing at one end and had to be shortened. 14 days later, we brought our baby girl home for the very first time.

We struggled with feeding and gaining weight, as many heart babies do, but we made it to her Hemi-Fontan procedure on December 4, 2009. Aly did unbelievably well and we were home 5 days later.

In March of 2011, Aly had her final of the staged surgeries, the Fontan. She showed us, yet again, how amazing she was and we were home 8 days later. Life for Aly is so normal. She is only on two medications and has absolutely no restrictions. In fact, we just got back from our first trip to Disney World, where Aly rode every single ride at least once and was still running around the park, happy as can be. Aly Jean is absolutely my hero and she amazes me every day by her strength.

Follow us at www.alyjeansspecialheart.com to see what she is up to now!

Here’s Aly last week at Disney World enjoying her first Mickey Mouse Ice Cream bar…. For breakfast.

CHD Week: Jacob's Story

2012-02-06T07:21:00.004-05:00

Congenital Heart Defect Awareness Week starts tomorrow! This week I will be sharing stories of CHD warriors to help spread awareness. I thought I would kick off the week (a day early) by sharing Jacob's story. Most of you know his story but for those who don't , here is the story of my little heart warrior:

Jacob Baker

Hypoplastic Left Heart Syndrome
Intact Atrial Septum

November 18, 2009 was a day that I will never forget. My husband and I went for our 20 week ultrasound expecting to hear if we were having another little boy or a baby girl. The joy of learning that we were having another baby boy was short lived. Right after the ultrasound tech got extremely quiet and we knew something was not right. She told us that there was something wrong with the heart. We were devastated and so afraid for our son. The next day we went for a heart echo and his diagnosis was confirmed, our son was going to be born with Hypoplastic Left Heart Syndrome (HLHS). HLHS is a severe congenital heart defect where the left side of the heart is underdeveloped of not there at all. Jacob’s was small and completely closed off. He also had a restricted atrial septum. This is the only outlet blood had to move through his heart and children with that added defect have an even lower chance at survival. We wanted him to have the best chance possible so we decided to travel 9 hours to have him at The Children’s Hospital of Philadelphia.

Jacob was born on March 23, 2010. Within hours of his birth that Septum became intact and they were losing him. He was rushed in for an immediate heart catheterization to open it up. His xray showed his lungs were flooded and the doctors were afraid he would not make it. Jacob did make it, 9 days and 2 bacterial infections later on April 1st 2010 he was stable enough for his first open heart surgery (Stage1: Norwood). This was also the day we were able to hold our baby for the first time. Kissing him good-bye and watching them wheel him to the OR was the hardest thing I have ever done. I told him to be strong and that I loved him. Jacob did very well during his surgery and was off the ventilator 5 days later.

Jacob continued to improve however he had very labored breathing. He couldn’t drink much by bottle because it was too risky and to tiring for him. He had a g-tube and Nissen surgery done on April 20th. After a dose of Morphine I watched Jacob’s numbers on the monitor suddenly drop. The nurse ran in and started patting him and telling him to wake up. They continued to drop and I could do nothing but stand there and watch and pray. The resident ran in and put Oxygen by his face and they hit the alarm; a sound I never want to hear again in my life. The alarm meant they need the crash cart, it’s bad. As a parent every time you hear that alarm you are frozen with fear. About 50 doctors ran in, the room flooded so fast. Thankfully the oxygen brought him back and no further intervention was needed. His body had stopped breathing because the morphine was too much for him. I will never forget the fear I had that moment, thinking I lost him. It is not a feeling I would wish on any parent. It took a few days for the drug haze to wear off but he recovered from his surgeries and we were finally released to come home after 8 weeks in the hospital.

At 4 months old we went back to CHOP for Jacob’s second open heart surgery (Stage 2: bi-directional Glenn). They thought his septum had grown back and went in to cldear some more and a hole was punctured in the back of his heart. This is common when going back to get the septum. Thankfully he has an amazing Surgeon and he was able to (with difficulty) close up the hole and stop the bleeding. Jacob recovered amazingly well and we were home just 6 days later.

You would never have guessed he had just had open heart surgery. Jacob came home on Oxygen because his oxygen would drop whenever we tried to wean him at the hospital. He was on it for a month and then once fully recovered was able to keep his numbers where they should be.

Jacob started drinking by mouth and within a few months he no longer needed to eat by his g-tube. This kid has a HUGE appetite; he made up for lost time lol. When he turned a year old we had some more testing done because of his “unique” breathing. We learned that both of his vocal cords were paralyzed. Scar tissue had built up around the vocal cords tethering them together. His airway is the size of a pinhole. It is amazing he could even breathe without assistance. Only 5% of kids with the airway can breathe without a Tracheotomy tube and he not only has half of an airway but also has half of a heart!

Even though Jacob has continued to be able to keep his oxygen at a good level for his heart his breathing is dangerous for him. He is exerting too much effort just to breathe and as he gets older it will become more difficult. Doctors in the top two airway hospitals both agree that he needs a airway reconstruction surgery. He is scheduled to have it on April 25, 2012. They are going to first try to go through his mouth to cut the tissue and see if that works. If it doesn’t then they will have to go through his throat and use his rib to create a graft which will hold the airway open. We are so scared about this surgery. I guess because he is so happy and doing so well at home. I knew about the heart stuff, I was prepared for it. I knew that he needed that to live. I was not prepared for this. Jacob will also need at least one more open heart surgery (Stage 3: The Fontan) which he will have when he is 3 or 4 years old. It kind of depends on what happens with this airway surgery.

Jacob doesn’t speak much because it takes so much effort to breathe. He makes sounds and says 2 or 3 words. He is learning to use American Sign Language which has opened up a whole new world for us. I am so proud of him and amazed that he has found a way to communicate with us. It was so hard seeing him get so frustrated with not being able to communicate. When we learned about Jacob’s heart condition we were devastated. I never could have imagined that my life would have gone down this path. I hate that Jacob has gone through all that he has but I am blessed that he came into our lives. Jacob has taught me so much about the true meaning of life. He has taught me to slow down and cherish even the smallest moments. I won’t lie I still have days where I want to pull my hair out, I am a mom after all. The point is that even in those moments I realize how lucky I am to have those moments.

This life is scary; a little cold makes me worry that it could take him from me. This life is also beautiful; watching him smile and play like any other child. His smile is brighter than anything I have ever seen. I have formed relationships I never would have known had it not been for Jacob. I refuse to spend my life fearing Jacob’s death, instead I spend it focusing on the beautiful life that we were given. Jacob may need a transplant one day, but the way I look at it is 30 years ago his diagnosis was 100% fatal. Today some centers have a 92% success rate. Who knows what they will come up with in another 30 years. Where there is life, there is always HOPE!

It's Heart Month!

2012-02-01T23:56:00.000-05:00

This month is heart month which means it is a busy month for us! Spreading Awareness has always been very important to me and this month I pretty much go crazy with it lol.

CHD week is February 7th through 14th.

This year for CHD week I want to share with you stories of some pretty amazing kiddos. Other heart moms who I consider good friends of mine have allowed me to share their stories with you and I am going to highlight one story each day. What better way to spread awareness then to show you how it impacts other families and what they go through? I can't take all of the credit. One of my fellow heart sisters did this last year and I thought it was a brilliant idea. So thank you Jenny for letting me steal your idea for this year! Her daughter Aly will be the first story I feature on here!

So please check out the this blog beginning February 7th and each day after that until the 14th.

Also if you are on Pinterest there is a ton of awareness going on! A few moms started sharing the stories of our kids by pinning their story and pictures on their boards. We are all re-pinning them onto boards of our own so these stories reach many more people. Check out my board by clicking the link below and feel free to re-pin the stories onto a board of your own!

Spreading Hope... The Faces of Congenital Heart Defects

I am also very excited because this year Andy and I are attending the American Heart Association's Heart Ball at the end of the month. We have never been and are really looking forward to having a "Date Night". What better way than dinner, dancing and spreading awareness! I will post pictures after the ball.

I will also be working hard trying to get the pulse ox bill passed. If you haven't already and are a WV resident please click below to send a letter to your lawmakers telling them to support HB4327. It only takes a minute and we need to get the word out to our legislators to support this bill. This is so important. So many families are sent home undiagnosed only to lose their child at home. Please help us make pulse ox screening mandatory before any infant is discharged from the hospital.

CLICK HERE TO HELP GET THIS BILL PASSED!

Along with spreading awareness I have gone home improvement crazy. If you have not been on Pinterest yet, you may not want to because it is so addicting. It is basically a virtual pinboard. You can create virtual boards and find pictures of pretty much anything you are interested in (Style, Home, Craft Ideas, recipes). The great thing is it has so many great ideas that I can do with the kids. The bad thing is it gives me so many ideas for the house lol.

I decided to take on two pretty major projects at once. A few months back I moved the boys into one room and made Jacob's room a playroom. After finding some great idea's on Pinterest I decided it was time to kick it up a knotch. I painted the walls in the boys playroom and created a chalboard on the bottom half of the wall using chalk board paint. It turned out AMAZING. It looks just like the one on pinterest though lol but I love it. Most importantly the boys love it. Jake goes in there multiple times a day and just starts coloring. He is getting really good at it too!

How the room looked when it was Jake's bedroom.

Transformed into PLAYROOM!

Jake LOVES to color!

Hooks for Play Clothes

My second project was re-facing the kitchen cabinets. This started out as a simple idea, paint the kitchen cabinets white. Then my sister mentioned it would look awesome to add molding to the front of them for depth (My cabinets were flat and very plain). So my sister, my dad and I went off to Home Depot and I saw some Bead board and thought that it would look really great. Little did I know how much work it would be. My dad and I built them on the weekends (4 days, not bad for neither of us having any experience with this). We put the bead board in the center then cut the molding to fit and mitered the edges. I glued the bead board down and nailed in the molding then spent my evenings painting. We got some inexpensive pulls to put on the and now my kitchen looks like it is brand new but cost less than what one cabinet would cost to purchase! I LOVE IT! I can't believe how bright it is now.

Kitchen Before

Kitchen After!

A HUGE thank you to my dad for helping me build these and my sister for helping me get them hung up. I couldn't have done it without you guys. I owe you a dinner.

The boys are both doing great. Jake got over his cold and has another synagis shot this Friday. Please pray he doesn't catch anything this time. I hate bringing him into the office during cold and flu season but I have to for these shots. Jake is continuing to amaze me with his signing. Everyday he seems to learn a new sign. Last night he went to his room and signed "Sleepy". I put him to bed and he went right to sleep. Tonight I was putting him in the bath and he did the sign for "bath". He loves to watch himself sign in the mirror. I am so proud of him.

Aidan continues to make me beyond proud. He is so good with his brother. He is loving and never gets mad if Jake takes his toys. instead he gets Jacob another one before taking his back so his brother won't get upset. I can't believe how lucky I got with these kids. Aidan loves helping Jacob learn new things and cheers him on. We cheer Aidan on as well and always tell him how proud of him we are. Jacob gives him hugs everyday. It just melts my heart. This was what I dreamed of when I was pregnant with Jake. The day I could watch my boys playing and happy. I couldn't ask for anything better than seeing them smile.

Happy Heart Month Everyone.
Don't forget to check back next Tuesday for CHD week.

Some ways you can spread awareness:
1. Learn the facts and share them with someone.
  Click here for more facts about Congenital Heart Defects
2. Donate Blood
3. Donate to CHD research
  Children's Heart Foundation
  American Heart Association
4. Donate to Sisters by Heart! We provide care packages to newly diagnosed families. This month alone we   have sent out 32 care packages. Our packages include items to make their hospital stay easier and most importantly the gift of hope.
Click here to Donate!

Corbin's Law

2012-01-30T12:57:00.000-05:00

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

2012-01-06T00:26:00.004-05:00

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!

My little Rock Star...

2011-12-21T00:01:00.005-05:00

As usual Jacob was a rock star and I couldn't be more proud of him. I don't have the results of the heart echo yet but Jacob did so well today that he didn't need to be sedated for his echo.

The day started off with Jake waking up in the hotel at 5am. I don't think he liked not being home in his own bed. We had to be at the hospital at 7:30. Luckily when we got there they took us right back. The nurse looked at me with wide eyes and asked about his breathing. I usually tell everyone right away that it is from his airway but sometimes I forget that it is not "Normal" because I am so used to it. Once I told her about his vocal cords and that it is his "Normal" she was very relieved. Most people hear his breathing and think that he is in respiratory distress. The look in their eyes is always pure fear. The anesthesiologist was nervous about sedating him because of his airway. He said that even though it is fine right now he could get into trouble with sedation and he recommended we at least try it without sedation which I was hoping for anyway. Sedation is always risky for hypoplasts but especially with Jacob's airway.

At first Jake was fussy but once the nurse put on Thomas the Tank Engine he was a happy camper. He fussed again when they needed to look at the arch (They have to do an ultrasound up by his neck). By then we were aloud to feed him so we bribed him with some food and he did great. I have to give the team at Cincinnati Children's props. They were great with him and we were out of there by 8:30am! From now on I am going to insist we always try without sedation since he has done so well the past two times. We were home by 1pm. Both boys made me so proud and were so well behaved this trip (as always). I seriously have the best kids in the world.

Thank you everyone for all of the prayers. I will let you know when we get the results.

While at the hospital I dropped off a bunch of Sisters by Heart brochures for the them to give to new families facing this diagnosis. Sisters by Heart just celebrated its 1 year anniversary! We sent out 130 care packages in the past year. I am so proud to be a part of such an amazing group of women. I remember like it was yesterday how devastating the diagnosis is and how lost you feel. To be able to offer HOPE and SUPPORT to these families means so much to me.

If you haven't visited our site yet, please do.
www.sisters-by-heart.org

You can make a tax deductible donation by clicking here.
For only $35.00 You can ensure that a family somewhere in the United States receives practical items for the arrival of their medically fragile baby...and the incredible gift of HOPE.

VOTE FOR A GREAT CAUSE

Last but not least I have a quick favor to ask. There is a great organization called Apps for children with special needs (A4cwsn). A4cwsn provides iPads to children with special needs. They are trying to win a grant which will allow them to get 10 iPads for children who need them. They need your votes!

A4cwsn is running a contest to get votes. If we get 10 votes on our behalf then we will be entered into a drawing to win an iPad for Jacob. They will announce the contest winner on Thursday so we have one more day to get 10 votes on our behalf. It only takes a few minutes and we would really appreciate your vote. iPads have been proven to be an amazing tool with kids with communication issues and this grant would change the lives of 10 families who really need it.

HOW TO VOTE

1.Click on this link:
http://sunsuperdreams.com.au/dream/view/ipads-for-special-needs-children

2. Click the vote button on the right. It will ask for your first name and email address.

3. They will send you an email to verify you are a real person voting. Just click the link in the email to verify that you voted. Keep the email because if we win we need to prove we had 10 votes on our behalf.

4. VERY IMPORTANT: Click the link below and post on A4cwsn's facebook page that you voted on behalf of Kathy Baker. This is how they will tally how many votes are on our behalf.
https://www.facebook.com/a4cwsn

I promise it only takes a minute to do. They are in second place right now so please vote. I hope that we can get A4cwsn enough votes to win this Grant. They are so good to so many people and they deserve it!

Merry Christmas to everyone! I will let you know when I get Jacob's echo results. Thank you again for all of the continued support for our amazing baby boy.

Headed to Cincinnati

2011-12-19T10:49:00.004-05:00

We are headed to Cincinnati today. Jacob will have a sedated heart echo tomorrow to check his heart function. If everything looks good then he can wait until April for his airway reconstruction surgery.

Please send up a prayer that everything looks good. It is easy to forget that his anatomy is so different but when we go for an echo I can't help but get very nervous. Praying everything looks good!

Side Note: To make mommy worry even more Jacob has learned to climb and LOVES IT! Glad he hit this milestone but I am going crazy making sure he doesn't fall lol.

I will update when I can after we get back from Jake's echo.

A Christmas Wish...

2011-12-11T08:34:00.012-05:00

Merry Christmas to all of our blog friends!

Jacob has an echo scheduled in Cincinnati on December 20th. Please pray that everything looks good! I always get so worked up when I take Jake for an echo. It is so easy to forget that he has half of a heart because he looks so good. When he goes for an echo the fear takes over. I know he looks amazing so I am praying that everything looks great but it is still nerve racking. We are going to make sure that his heart function is still not being affected by his breathing. If it is then we would have to move up his airway surgery. It will be a quick trip, the boys, my mom and I will go up Monday night and come home after he wakes up from the sedation on Tuesday.

The boys are super excited for Santa to come. Jacob is loving the Christmas tree. We have no more ornaments on the bottom of the tree. Between Jake and the cats they have all fallen off and I put them at the top. Aidan keeps talking to Santa out loud which is hilarious. I told him that Santa is always watching so if he doesn't listen or does something that he thinks Santa would be upset about, he looks to the sky and yells "SORRY SANTA" lol. Love this time of year because Santa is my back up. I didn't get a picture of them with Santa this year. We don't want to bring Jake to the mall right now and Aidan is too afraid to sit on Santa's lap. He did peak at him from afar but we couldn't get him anywhere near the big guy.

Jacob has started hugging Aidan and it is the sweetest thing. He used to push him away but now he walks up to him and gives him a big hug. Aidan LOVES it. I couldn't believe it but Jacob comes up to Aidan's chin now. He is getting so tall! He is now 24lbs 9ounces and 31" tall. He is in the 48th percentile for his weight which is AMAZING for a cardiac kid. I am so proud of our big guy.

My Christmas Wish ...

My Christmas wish it to be able to communicate with Jacob. He is still not talking but is coming along really well with learning American Sign Language. The whole family has been learning. He still gets frustrated with not being able to communicate but we are working with him a lot. He can now sign: sign, baby, more, all done, please, milk, play, boat, book. He wants to watch baby signing times all of the time.

I want to try and save up for an iPad for Jacob before April of next year. I have read so many studies on how iPads have helped children who are non-verbal. There are hundreds of apps out there to help children with speech development. It is a wonderful tool to help children communicate. Children who were completely non-verbal started speaking whole sentences after using the apps. Jacobs birth to three therapists think he would greatly benefit from having one. There are sites completely dedicated to apps that help children with disabilities. A really great one I have found is A4cwsn.com.

Jacob also is hospitalized for procedures and surgeries a few times a year. He has a HUGE fear of doctors and getting poked and prodded throughout his hospitalization. He has sensory issues as a result. The iPad would be an incredible tool to assist with his fear and anxiety during hospital stays and lend itself as a distraction during his most trying times. My ultimate hope is that Jake would be able to communicate with us using pictures or signs and hopefully words to tell us his needs or if he hurts. Jacob wants to communicate so badly and gets frustrated because he can't. I know that this would be an amazing tool to help him do that.

The problem is they are very expensive. We are going to use any Christmas money we get this year towards it. There is a website called Babies with iPads. They have a grant that specifically gives iPads to children with disabilities. I was going to apply and still may however they do not currently have any funding available.

If anyone knows of anywhere that is selling a used or referbished iPad please let us know. We really would love to be able to purchase one to help Jacob learn to communicate. You can email us at thebakertrio@gmail.com.

Thank you all so much for continuing to help and support our amazing little warrior. We hope everyone has a Very Merry Christmas! I will post updates about Jacob's heart echo after we get home from Cincinnati.

Hello Blog World...

2011-11-19T18:39:00.014-05:00

Once again life has taken over and I have not had much time to blog. The family is doing great and I have lots to update.

Halloween

Jacob and Aidan went trick or treating in Grandma's neighborhood. Aidan was Woody from Toy Story and Jacob was Buzz. Unfortunately it was pretty cold so Jake went to a few houses then we bundled him up in his stroller. He still seemed way to cold for my comfort so I had grandma take him back to her house while we hit the neighborhood with Aidan. Andy and I loved watching him run from house to house with such excitement. He even hiked a pretty big hill to get to a house. It was a great night for the whole family, even Jake who spent most of it in the nice toasty warm house lol.

Cardiology Update

Jake went to see our favorite Cardiologist the other day. As usual, Dr. Heydarian said how impressed he was at how well Jacob is growing and how good he looks. Jacob wouldn't sit still and showed off his high energy. We discussed him getting an echo to make sure that he can wait until April for his airway surgery. CHOP was ok with waiting that long as long as we had an echo a few months before to make sure his breathing is still not effecting his heart. Dr. Heydarian said if he were having lower heart function he would not have as much energy as he does. Let me tell you Jake never stops. From the time he wakes up to the time he goes to bed at night he is constantly going. I can barely get him to take a nap anymore. I lay him down and walk by five minutes later and he is standing up laughing at me. Such a silly kid.

So I will update when I find out the date for his echo but our little rock star is doing great!

Cold, flu and Synagis Season

The dreaded cold and flu season is here again. This is the worst time of year for me because I worry so much about Jacob getting sick. I blogged a little while ago about him having a cough and doing great with it. Well he had a cold a few weeks ago that made that cough look like nothing. Jacob and Aidan both came down with a cold around the same time. It was a few days after halloween. Jacob was so congested and had a croupy cough. I was really scared about his airway. Luckily he already had an appointment scheduled to get his Synagis shot.

The Synagis shots are monthly shots that act as an antibody for RSV. It doesn't mean that he won't get RSV but it does protect him from it and if he does get it then the case is usually much less severe. As you know RSV puts healthy children in the hospital. For a child with a heart like Jacob's it could be deadly. Because of this he qualifies for the shots. You have to practically jump through hoops to get your child qualified because the shots are so expensive. Thankfully we have a medical card for Jake as a secondary insurance. We found out that after our main insurance pays their portion our co-pay would still be $926.00 a shot! That is almost $1,000/month. He needs to get them through March. It is crazy. I mean our kids need this protection and it would cost insurance companies a lot more if they are hospitalized... but I digress.

So I took Jacob in for his appointment and they ran an RSV test just to make sure that was not what he had. Thank God it came up negative YAY! The doctor said that his lungs sounded fine so as long as he keeps his oxygen levels up he should be ok. She wanted us to try Pulmacort breathing treatments to help with all of his croupy cough. Jacob was not a fan of the nebulizer. He screamed bloody murder anytime you came near him. So we did the breathing treatment when he was sleeping. I swear he slept with one eye open because he kept waking up so I didn't get much in him. The next day he lost his voice. This freaked me out because if you have ever been around Jake you know how loud his breathing is. To hear him silent made me feel like he was not breathing. I kept him hooked up to the pulse ox most of the day and the kiddo held his oxygen levels around 86! That is higher than he normally is when not sick. He is usuallly around 80.

We decided not to do the pulmacort because of the no voice issue and within a few days he started getting better. I must have asked Andy if we should take him to the hospital 10 times those few days. I called his doctors and everyone agreed he would be exposed to more germs there and they would monitor him just like I was doing. Turned out everyone was right and he did get over it. Still I was worried sick. Have I mentioned I hate this season?

His cardiologist said that until he gets that airway opened up we need to play it safe. So we are once again putting ourselves in our little Baker bubble. I ask all family and friends to please not come over or invite us over if you or anyone you have been in contact with recently is sick. If you do get sick and were recently around us I would really appreciate it if you could let me know so I can watch out for symptoms with Jake.

The scary part of our world is that it is the little things that sometimes take the lives of hypoplasts. Just recently a 4 year old passed away from dental work. He had made it through 3 open heart surgeries. Hypoplasts tend to have problems with their teeth rotting from all of the medications, tubes etc. Jake will have to be on antibiotics even when he has a cleaning to protect him from infections. This little boy passed away when he was getting his teeth capped. So if I seem overprotective... I am. Wouldn't you be if it were your child? I have seen families lose their children from colds, the flu, you name it. It is just the reality that we live in. Things are much harder for our heart kids. I need to do whatever I can to protect him. My kids are my life so if it means taking extra precautions and not going out much during the winter, so be it!

Just Jake

Jacob is growing up so fast! He still hasn't progressed with talking but he is signing a lot more.

He signs:
Baby
Sign
More

All done
boat (kind of)
Block
Ball
Play

I can't tell you how much I love that he is taking to signing. He watches "Baby Signing Times" all day long. If it isn't on he brings me the DVD or the remote and signs "Baby signs". It just fills me with pride. Aidan also has gotten really involved with it. He gets excited when he learns new signs. Even I find myself signing throughout the day to help Jake learn. I really think it is making a big impact. He seems to really be showing us that he understands what we are saying.

Jake also likes to dance now. He basically stands still but moves his arms back and forth really fast and laughs. He obviously inheritted his dancing skills from his daddy lol (I am going to get in trouble for that one). Seriously its really cute.

Jake copies pretty much anything he sees us do. The other day Aidan bounced on the bed so now Jake likes to go on the bed or the couch and he lifts his arms up so his bottom comes off of it a bit and he laughs so hard. You say bouncy and he just bounces away. I of course am right there the whole time so he can't fall off. It makes me nervous but at the same time he is just getting this personality and I love it. Have I mentioned how much I LOVE my kids. They are just awesome.

Photos of the kids have become so important to me. I have always had pictures of our family all over my house but it has become even more important to me with everything we have gone through with Jacob. I guess I just want to hold onto each moment. We recently won a free photo session with Kristi Dornon from Pikture this Photography. She took beautiful photo's of the boys at a near by park. These photos were taken at Pumpkin Park in Milton WV. It is so close to our home and I never knew how beautiful it is there. I want to share some of the pictures with you. You can see all of them by clicking here. She did an amazing job. Thank you Kristi so much!

Told you they were beautiful! If you are interested in having her do your photos you can click the links below.

Kristi's Facebook Page
Pikture This Photography

Well I think that about covers what has been going on with us. We are looking forward to spending Thanksgiving with our family.

Happy Thanksgiving!

Love,

Love beyond words...

2011-10-30T00:28:00.010-04:00

Wow I can't believe this is my 200th post! So much has happened since I started this blog and I am honored that so many people have fallen in love with our little miracle!

Jacob is such a blessing and has been through more in his short life than many go through in a lifetime. Jake is the strongest boy I know and I am so proud of him for everything he has overcome and for the amazing boy that he is. One day I hope to share this blog with Jacob and show him just how much he has overcome and how many wonderful people followed his story and rooted for him! Thank you for allowing me to share his story with each of you. Tonight I want to vent a little for my own sanity about this next hurdle in Jacob's Journey.

As a parent you always worry about your child. As a parent of a child with a life threatening disease this is of course multiplied. But it is not just the major things that worry me. Lately I have been so worried about Jacob's development. Not because I am afraid he will be delayed because that doesn't matter to me. No matter what obstacle we face I know that we will be stronger for it and I will love Jacob with all of my soul regardless. I worry because I see how frustrated he is getting with not being able to communicate with me and that breaks my heart.

Jacob says some words but it is more like baby jabber than really talking. He does say "Mama, Dada, yeah and things like that but he just jabbers them. It is not like he looks at me and is calling my name. He is progressing slowly and recently has started saying a lot more sounds. For instance when Aidan takes a toy from him he puts his hands out and says "Ma" "Ma" really short and fast but we know that he is saying "Mine". I can't imagine how hard it is for him to talk when it takes so much effort just to breathe. The fact that he can jabber at all is a miracle. Still as a mother I desperately want to give him a way to communicate. The more time that goes by without him talking the more I fear how hard it will be for him to begin to talk.

We have tried to point to pictures but he is not interested in that. The one thing that he seems to love is Baby Signing Times DVDs. My mother in law gave them to us when we had Aidan and they were a huge success with him. He loved them and would watch them non-stop. I recommend them to all parents! I started them with Jacob a few months back and the past few weeks he has really grown to love them. If they are not turned on then he brings me the DVD case and hands it to me. If I don't put it in fast enough he starts to throw the remote at me lol. So he does seem to understand what he wants and is starting to tell me things in his own way. If he doesn't want something he shakes his head back and forth very fast or pushes it away. Most of the time while screaming. Jake also loves to imitate you. Because of this we think that he does understand us. He will interact with me and with his toys etc.

The problem I have seen lately is his frustration is growing. He gets irritated over the littlest thing and throws himself on the floor, throws his head back and does a inch worm crawl on his back while screaming. I have place my arm on his chest or touch his face and tell him it is ok. Rubbing his feet seems to soothe him as well. It is happening more and more and I feel so helpless. I also really want to make sure that he recognises the objects we are playing with. I have started placing objects on a try and then asking him to point to the ball or point to the car. So far he just plays with the one he wants and doesn't really respond to my request. His therapist did point out that up until now we haven't really "Asked" much of Jake with things like that so it may take time but it doesn't mean he doesn't understand. He may just not want to give us the car etc. He does give me a kiss if I point to my cheek and say Kiss Kiss. He leans in and gives me a big open mouth slober kiss on the cheek lol. He is also really great at building with blocks. He loves to build towers out of blocks and when he uses them all and his tower is standing he claps and it sounds like he is saying Yay. Tonight Jake did do the sign for "More" and the the sign for "Signing". That was a huge break through for us. Before he would watch the dvds and move his hands around but tonight it was obvious he was wanting more signing times.

This life has taught me so much about taking the little or big things for granted. I know Jacob is still young and most likely he will catch up and be able to talk. I also always knew that because of the lower oxygen levels he may have delays. His therapists have told me that his motor skills are very good and boys tend to focus on those before their talking. Girls are the opposite. I know he will talk when he is ready if he can and if not, we will find our way. This is just one more path along Jacob's Journey and one more lesson in patience for both him and I. It is so frustrating to see him get so angry and so frustrated but I know that together we will find a way to communicate and we will be stronger for it.

Thank you for letting me vent and get my worries out here. Tomorrow the boys are having their pictures done then we are going to spend the evening carving pumpkins and just enjoying time as a family.Then Monday is Halloween. The boys are trick or treating dressed as Woody and buzz from Toy Story. I let Aidan pick the theme. He is so excited. Happy Halloween everyone!

Aidan and Jake at the duck pond...

Jake was not a fan of the ducks.

Mommy & Me

Hanging out in our new Toy Story PJs!

We have a date for surgery...

2011-10-19T20:50:00.010-04:00

I can't believe another month has flown by. Some people have been asking when I would be posting again. Like I have said in the past, if it is a while before I post please don't worry. No news is good news :)

But now I do actually have some news...

(Jake doesn't want to hear it)

I talked to CHOP yesterday and we have a date for Jacob's airway reconstruction surgery. It is set for April 25th, 2012. Originally they mentioned doing it in January but the thought of Jacob being in a hospital on the ventilator during the peak of flu season didn't thrill me or Jacob's doctors. Then we discussed March 28th however then we would most likely miss Aidan's 5th birthday. We already missed one birthday because of hospitalizations so we really didn't want him to have another birthday without his Mommy. Mommy didn't want to miss it either :)

So we settled on April 25th. Jacob has a cardiologist appointment on November 15th (almost 2 years to the day we learned our unborn son would be born with HLHS). I am going to talk to Dr. Heydarian and see if we can schedule a cardiac echo some point between now and his surgery to make sure that his heart function is not going down due to his breathing. As long as his heart stays the same then we can wait until spring.

The nurse mentioned that they book the OR for the whole day for this one surgery. It is the only surgery done that day for ENT. This worried me thinking about how major this surgery is on top of everything else he has gone through. However Bert from Dr. Heydarian's office mentioned to me today that instead of thinking of how serious it is. Take it as a blessing that the doctors will have pleanty of time to focus on Jake and not be tired or rushing through it.

I am still praying they will be able to cut the scar tissue by going through his mouth but am preparing myself for the complete airway reconstruction. That way I won't be taken off guard. Still the thought of it makes my stomach turn.

I am looking forward to Jacob being able to run around and breathe without struggling. Now when he is active he can't catch his breath. Still he has more energy than any of us lol. I can't imagine what it will be like when he has a whole airway to breathe through.

As for the post last month about leaving our "bubble" and putting Aidan in pre-school. Well we are back in. We tried it but it was not working out. Jake and Aidan were both sick the whole month he was in. Aidan had such bad anxiety he would non-stop worry about having to go to school even on the weekends. He kept asking when he would be sick again so he wouldn't have to go. My car broke down one morning and he jumped for joy because he knew he wouldn't have to go to school. If it were just for the fact that he would scream and cry when I dropped him off I would have stuck to it but there were so many things. He cried every night, on weekends, was acting out. That plus the kids both being sick and we just were not ready. If Jake was getting every cold that went by now then he would most likely also get RSV or FLU and that scares me to death.

So new plan. For now I will continue to teach Aidan at home. He loves doing his workbooks and learning. Jake will have his airway surgery this spring. I will feel much better about Aidan being in school once Jake has a full airway and is not so high risk. Aidan is ahead of the game as far as development. He knows so much for a 4 year old. I mainly wanted him to be in school for social reasons. I am thinking we may try and enroll him in sports in the spring. Something to get him to interact more with other kids. We are also going to be doing more play dates with friends. I know the transition to Kindergarten will be harder but I know in my heart that this was the right choice for our family.

Jake is still not talking much. I asked his speech therapist to start coming twice a month instead of once. We are working on object recognition with him. Sitting him in a chair and putting objects on the tray and asking him to hand them to us, pick up the block etc. We are also still doing the baby signing times videos. He loves them! He even brings me the DVD case during the day so I put it on for him. We are hoping he will start talking once he has his surgery. He works so hard just to breathe that talking would be very hard on him. He is making a lot more sounds though. His favorite thing to say is "Yeah, Yeah, Yeah Ma'ma". He has a lot of baby babble but as far as words he isn't saying much. We are getting there though! Vowel sounds are the first step and he says all of them. He will talk when he is ready but for now I am focusing on signing and trying to give him other ways of communicating (Other than screaming lol).

Jake's motor skills are great. He is practically running now. He thinks its hilarious to hide in my room and close the door then laughs when I open it up and find him. He doesn't even mind if it is dark in there. I open the door and he is all smiles. His favorite thing to play with right now is blocks. He loves to build them into a tower then smiles and claps when he is done. He says yay. He is so proud, and so are we. He plays with trucks and trains, typical boy.

We are getting ready for Halloween. Aidan is going to be Woody from Toy Story so Jake is going to be Buzz. Jake's costume is just a pair of Buzz Pajamas but I think that will be more comfortable for him. I will post pictures after we trick or treat :)

Until then... Happy Halloween!

2011-09-26T10:38:00.003-04:00

Hope you like the new layout! I thought I would switch it up a bit for the fall. Not to mention the fact that Jacob's picture was from almost a year ago! Hope everyone has a great week.

Walking for a better future.

2011-09-24T23:14:00.001-04:00

Happy Autumn!

This is my favorite time of year. I love the Fall! Pumpkins, pumpkin coffee, pumpkin candles (Notice a theme here lol), the perfect cool weather. I just love it! We took the boys to Gritts Farm today. They have a giant pumpkin patch and other fun things for the kids to do. I got some great pictures of the boys but you will have to wait until the end to see them. I have much to catch up on so here it goes...

TEAM JACOB

Last Saturday was the American Heart Association Greater Charleston Heart Walk! We were blessed with beautiful weather and they had the biggest turn out they have ever had. I am so excited to report that Team Jacob raised $4,293.00! We more than doubled what we raised last year!

Equally as important we were able to set up a table at the walk and have information for people to take about congenital heart defects. We had pictures showing what our boys have gone through. We were also able to speak at the walk. We talked about how important funding is so that medical advancements can be made, advancements that could one day save thousands of children.

Jake waving to the crowd
(Such a superstar)

This smile is everything to me!

It warmed my heart to see everyone come out and show their support for Jacob. Jacob even walked some during the 5k. Seeing Jake walk just filled me with more pride than I could ever express in words. It was very emotional for me. I made custom shirts for both Jacobs that said "I'm a Survivor". They had a custom made heart sewn from different fabrics. It was beyond awesome to see the boys walking with us sporting their shirts with pride. They are a picture of strength and an inspiration to all of us.

I have said this before but I don't think I can say it enough. We walk not only for our boys but also for the thousands of babies who are no longer with us. 4,000 babies do not make it to see their first birthday. This is not acceptable and we have to keep fighting for research and for medical advancements that can save them.

I want to say a special thank you to an amazing woman I met recently. Her son Corbin passed away due to a CHD after a few short months of life. He was such a brave boy and he fought a valient fight. In the end it was just to much for his little heart. His mother Ruth has been at the forefront of Pulse Ox Advocacy. Despite her own pain she fights for all of our children. Ruth came out to walk with us on Saturday. I can't imagine how hard it was for her to come but she wanted to support Team Jacob. Ruth drove over 2 hours to walk with us.

Jacob, Myself and Corbin's mommy Ruth

I believe Corbin's spirit was there with us as well. He knew that we were walking for him. I know he is so proud of his mommy. We were walking for every life that has been lost due to a CHD and for every life that may be saved from the funds that were raised and the awareness that was spread. I am so blessed to have Jacob here with us. We almost lost him multiple times, his future is uncertain (more so than most) but I will always cherish each day, each minute, each second I get to spend with him. I plan on raising them to know how precious life is and to never take anything for granted.

Lori just had a hip replacement 12 weeks ago.
She walked the whole 5K. Lori you ROCK!

Thank you to each and every person who helped us raise funds and who came out to walk for our boys. I can't tell you how much it means to our entire family. I am already looking forward to next year! Go Team Jacob!

Meet Bella

Ok so everyone is going to think I have lost my mind and I quite possibly have. We got a kitten. We didn't plan on getting a kitten but we have one and I have to say she is ADORABLE. I had been talking with my mom about how we get these jumping spiders downstairs and how when we had cats I never found them (alive). Now that we don't have a cat we can't ever seem to get rid of them. The other day one made its way upstairs and some how made its way into MY SHIRT! I felt something strange and scratched, imagine my surprise when a spider fell out of my shirt. Lets just say my husband woke up to me screaming for him to kill it lol.

So we were talking about this and then realized that we were right by the animal shelter. So I decided to take Aidan to see the kittens. I should have known I wouldn't walk out empty handed. I have to say it was a touching moment I will never forget. Aidan picked her out and instantly fell in love. There were about 30 kittens but he went right to this gray and white one and wouldn't look at any others. I think he picked the PERFECT one. First of all its a girl so I am finally not the only female in the house lol. She is quiet and very lovable and social.

She and Aidan play all day long. Jake doesn't give her a second glance lol. He is not a big animal fan. He pushes the dog away anytime he comes near him and he acts like the cat doesn't exist lol. The dog even likes her and she doesn't mind him. She has even cuddled up to him a few times. So our family has grown with a tiny 2lb kitten named Bella.

Last but definitly not least...

Jacob is 18 months old!

Happy year and a half birthday to my beautiful baby boy. Many people probably don't think a 1/2 birthday is a big deal but for our little miracles they are something to be celebrated. Each day is such a gift and each day represents another day our heart warriors are beating the odds. Time is precious and I hope if Jacob's story has taught you one thing, it is to slow down and celebrate the little things in life!

Now, here are those pictures I promised...

Breaking out of the bubble (Cautiously)...

2011-09-10T01:55:00.002-04:00

Hi blog world! I know it has been awhile since you have had your Jacob fix so here is what has been going on in our world.

DEVELOPMENT

Motor wise Jake is right on track. He is all over the house. He loves playing with trains, trucks anything with wheels. He lays down and watches the wheels move just like Aidan used to. He smiles and lights up the room. His laugh just echos through the house. He has learned to blow kisses and is becoming so much more cuddly. He is OBSESSED with his shoes lol. If they are off for even a minute he throws them on me over and over until I put them on. He even holds up his feet for me to put them on.

Speech wise we are not doing so good. Jake still doesn't say much. He mainly says "mama" and "dada". He should be saying about 25 words by now but who is counting lol. His therapist is not to concerned, everyone agrees that they think it is due to his work of breathing. He works so hard and makes so much noise just to breathe that it makes sense it is hard for him to "Talk" a lot also. Don't get me wrong I am so proud of him and even if he never talked I would be proud of him. That being said I want him to talk because he gets so frustrated. The good thing is he is communicating other ways. If he is done eating he shakes his head no, he has started to sign some. He hands me things he wants like snacks and his shoes lol.

His speech therapist recommended taking photographs of objects he uses such as his binky and bottle and holding them up to give him another form of communication along with saying the words. Hopefully once he has his airway surgery he will start talking so much that I will read this post and laugh at the fact that I was begging him to talk.

MEDICAL UPDATE

I spoke to GI and the results from his GI probe were great. His reflux medication is controlling the reflux well so there is no need to go up on his medication. They also cleared him from a GI stand point for his airway reconstruction.

After I talked to GI I called CHOP's ENT department to discuss when his surgery will be. The nurse scheduling his surgery told me it looked like it would be January before they could do the surgery. I was not ok with this. Having Jacob admitted to the hospital for a non-emergency procedure during the peak of flu season is way to risky. I told her how I felt and asked if she could talk to his cardiologist at CHOP and his ENT surgeon to see if we could wait until spring. His last heart echo looked great and had not changed from the one they did in March. Both ENT and Cardiology had told me that it doesn't look like his labored breathing is affecting his heart at this point. They do want him to have the surgery because as he gets older he will be moving more air through and the work of breathing is not good for his heart. That being said neither doctor seemed to think it was something that we needed to do immediately.

I have not heard back from CHOP yet but I am hoping that his surgery will not be until next spring. The nurse said they do get a lot of flu patients so my concerns were warranted. The downside to waiting longer is that Jake will go through another flu/cold season with his airway. He will once again be getting Synagis shots to help protect him from RSV and he will also be getting his flu shot. Still it is always a concern especially since his airway is so small.

COLD AND FLU SEASON REARS IT'S UGLY HEAD

A few weeks ago the cold went through our house and the boys both had a bad cough. I immediately took Jake in to the doctors to make sure he was ok. He sounded great and his oxygen levels were in the mid 80s which is good for him. I monitored him on the pulse ox machine overnight and he continued to keep his oxygen levels up. Jake once again has shown me how strong he is. A few days ago, Aidan got the same cold AGAIN! Jake has just started coughing again but so far it seems to be pretty mild. (As I am typing this he just woke up coughing again. His oxygen is actually 90 which is amazing for Jake and his doctor said as long as his oxygen is ok then she is not worried). So looks like he will be hooked up to the pulse ox at night for the duration of the cold. Please pray it doesn't get worse.

BREAKING OUT OF OUR BUBBLE

After A LOT of going back and forth and discussing it with Jake's doctor and our family we have decided to send Aidan to pre-school. I had thought about it a while back but decided not to do it because I worry so much about Jake being exposed to germs. This is actually a HUGE step outside of the bubble I have been living in for so long. We got a call a few weeks ago from the Head Start program in our area about enrolling Aidan. My first reaction was no. The more I thought about it the more I thought it was a good idea.

I want my boys to grow up living normal lives. I know our lives are NOT exactly normal but I want to do everything in my power to give them both the best of everything. Yes, there will be hospital stays, doctors visits, lots of non-normal things however I feel it is my job as a mother to make it all alright for them. There is so much I can't change but this is something that would be so great for Aidan. He is the smartest 4 year old that I know but socially I worry about him. He has such separation anxiety. I can't go to the store without him crying and begging me not to leave. Can you blame the kid? This past year and a half he has had to deal with so much. His mommy has had to be in the hospital with his brother while he and his father were back at home.

I have started taking Aidan with me when we go out of town to the hospital and trying to do something fun before we go home so that he doesn't view it as another "Medical trip". That has helped but he still needs to be around other kids and do kid stuff. Aidan is such a serious child. I took him to the dentist a week ago and when the hygienist told him to open wide like a lion he looked at her and said "I'm a person". From then on she would say "Open wide like a person lol". I know that most of it is his personality. Everyone tells me that his vocabulary is so advanced and he seems like a little adult. I love that he is so smart but I also really want him to have fun. Going to pre-school will help him learn to just be a kid and will also help with the transition to Kindergarten.

I talked to Jacob's pediatrician and she agreed that we have to live our lives. We can't live in a bubble, it wouldn't be fair to any of us especially Jake and Aidan. We discussed things that I can do in order to help prevent the germs from coming into our home. When Aidan gets in the car I sanitize his hands and we change his clothes when he gets home. Is it fool proof? No. But lets face facts the boys have had two colds the past few weeks... all BEFORE Aidan started going to school. So even staying home doesn't prevent Jake from getting sick. I also talked his teacher and she is going to call me if anything is going around like the flu so I can keep Aidan home from school that week. That is the great thing about pre-school. We can be flexible. I don't HAVE to send him if it is not safe for the boys.

Aidan went to pre-school twice last week and had a very hard time with me leaving. He cried so hard it broke my heart. It didn't help that he had a cold ( I know, I was the mom bringing the sick kid to school but his teacher said to bring him and he wasn't that bad at the time.) I kept him home on Thursday because he was up Wednesday night coughing a lot. He is having a hard time, mainly with nap time lol. They don't have to actually sleep but have to have quiet time. It is right before he leaves for the day so I have been trying to pick him up before then. I know that it will get easier and honestly it is probably harder on me leaving him as he is crying. I know once I leave he has fun.

We are going to stick with it and see how it goes. If he is sick too much or it starts to become a problem for Jacob we will reevaluate but he has to go to Kindergarten no matter what next year so it is inevitable. I just have to find the balance between giving my kids a "Normal" life and protecting Jacob's health. It is a fine balance but I will do everything in my power to protect my kids and give them the best life possible!

Oh as if we didn't have a busy enough week last week our only car decided to die WHILE driving on the interstate. It was 100 degrees and there I am on the side of the road with Aidan eager to get to a birthday party. Thankfully I got it started (after 5 tries) and made it to my parents house. So on Aidan's first day of school I had to borrow my brothers car take Aidan to school, take Andy to work, get my car towed, found out they couldn't fix it, got it towed again to the Toyota dealer and found out it was the computer (Went into panic mode) then found out it was recalled, Praise GOD! So they fixed it for free and covered the (Second) towing bill!

So there have been a lot of changes going on but I really think that we are finally living life instead of fearing it. I am proud of that. We will see how it goes but I feel in my heart that we have made the right choice and that both boys will benefit from it. So here we are breaking out of the bubble (cautiously). Wish us luck!

Love,
The Baker Family

Helping Hearts Car Wash

2011-08-28T11:41:00.009-04:00

Team Jacob will be hosting our first ever Helping Hearts Car Wash TODAY! 100% of the proceeds will go toward Team Jacob's goal for the American Heart Association's 2011 Greater Charleston Heart Walk. Come on down and get your car washed for a great cause!

EVENT DETAILS:
The Art of Tint of St. Albans
Sunday August 28, 2011
2pm to 5pm

Can't make the carwash? Donate online:
www.heartwalk.kintera.org/charlestonwv/teamjacob

A big Thank You to The Art of Tint of St. Albans
and Auto Zone for donating the location and the supplies for the car wash!

Jacob's First Haircut

2011-08-12T12:16:00.006-04:00

As much as I hated to admit it, it was time to cut off the beautiful curls. Jacob's cute curls had started becoming a curly mullet and the hair in the front was so long it had started getting into his eyes. So it was time for my baby boy to get his first haircut.

Before

As you can see... Jake was NOT happy about this.

He cried... ok more like screamed through the whole thing. Big brother Aidan was so sweet telling him that it was ok and he would be out of that place soon lol. Aidan is such a good big brother. He kept saying "Jakie its ok, your ok Jakie". He even had his haircut first so Jake would see that it was ok. I am so grateful to have such great kids.

Jake was having none of it. Thank God we had such a great hairdresser. She was amazing and his hair looked great despite his thrashing around.

After it was done, he was his normal, happy self... with a big boy haircut.

Here are my beautiful boys sporting their new haircuts.

Home, Sweet, Home...

2011-08-07T22:31:00.006-04:00

We are home! We got home last Monday (Sorry it has taken me this long to post!). I have been unpacking and getting shirt orders together for Team Jacob. I will write a longer post updating everyone on Team Jacob later but tonight I just wanted to tell you how happy we are to be home. No one is happier to be home than Jacob!

Since getting out of the hospital, Jacob has been so excited. He has had a smile on his face non stop. Even at the hotel he would just run around and play. When we got back to our house he kept saying "yay" and would clap his hands over and over. He would wake up from his nap and start clapping. He is just so happy to be here. We all are!

Overall I think the trip to Philadelphia went as well as we could have expected. His heart looks great (for him). This made me let out a big sigh of relief. We will go see his cardiologist on Wednesday of this week. I should find out the results of his GI reflux test in about a week and then we can discuss when his surgery will be. It will most likely be in September or October. We would be very grateful if you would continue to keep our brave heart warrior in your prayers. We are praying that they won't need to do the COMPLETE airway construction. He is a fighter and we are just taking it one day at a time.

Thank you again for all of the support and well wishes! A Special thank you to our neighbor Mrs. Beckett. We are so grateful to you for all of your prayers and support. And a Special thank you to my Mom and Mimi for coming to Philadelphia with me to help with the boys. I don't know what I would do without you guys. I am so blessed to have such amazing friends and family. I love you all!

VIDEO: Happy to be home!

Punch Drunk

2011-07-29T15:47:00.004-04:00

Hanging with Mommy before surgery.

I just wanted everyone to know that Jacob did wonderfully. He won't need surgery for a few months. GI said he looked wonderful. ENT said his scar tissue is a bit thick so when he has surgery they will book the O.R. for enough time to do the major airway reconstruction however they are still going to try the minimally invasive procedure first. It is still surgery on his airway but the recovery time is much better since they would not be cutting through his neck. If it does not work then they will go ahead and do the major surgery.

GI placed the GI probe. 2 hours later Jacob decided to yank it out. We had to wait another 2 hours to get it in and are praying he doesn't pull it out again. I feel bad though because his arms are covered so he can't grab it. He is sleeping now. He has not eaten since last night. We are waiting to see if the X-ray turned out good before we can feed him. Hoping to hear soon because I need to feed my baby boy. The GI probe will remain in overnight and we will be discharged around noon tomorrow.

Funny moment of the day:
They gave him Versed to calm him before they took him to surgery. I was about to cry and told him I loved him, just then he started cracking up. He then would crack up laughing every time someone looked at him or talked to him. It was so funny. How could I cry when he was so hysterically happy lol. Thank you to my beautiful warrior for making it easier for mommy today.

The anesthesiologist said he laughed the whole way down to the O.R.

Here are some pictures of our beautiful boy drunk off of his meds lol.

Love you Jacob!

My Little Rock Star!

2011-07-28T19:50:00.004-04:00

Today went as well as I could have asked for. As you can see by the picture Jacob is also pleased with how today went. Jacob is such a rock star and I never tire of people telling me how AMAZING he looks. Here is a breakdown of our day.

8:20AM - ENT
We met with ENT and answered a ton of questions about our little guy. Then the speech therapist came in and talked with me about how kids handle these airway surgeries and what she tends to see with them. She was so great and answered every question I had. She said that Jake is actually the perfect combination for doing great after the surgery because he has a g-tube so they can get his nourishment in while he is on the vent but he also has a huge appetite and desire for food which makes it easier for him to adjust to the new airway. So many cardiac kids have an aversion to food. Jake is the opposite. He will have his own dinner then beg for mine lol.

I met with Dr. Zur and I LOVED her. She was so nice and spent a ton of time with us. She trained at Cincinnati where we had his original scopes and came very highly recommended by them. She said that looking at their images she was very optimistic and agreed that we should try the less invasive approach first (This made me SOOOOO happy). She said the rest of his airway looked BEAUTIFUL! It was just the vocal cords, they are tethered down by scar tissue. Dr. Zur did a scope through his nose to look at the cords while he was awake and she said that it looked like they were trying to move but couldn't due to the scar tissue. This is a great sign because that means the nerves might be ok. There is still a chance the nerve is paralyzed from his heart surgery, only time will tell.

Less Invasive Surgery:
Basically they are going to go in in using an endoscopic approach (through his mouth) and cut through the scar tissue. They would then balloon it open and we would see how it healed. He would need the vent in for a day (Much better than 7) and he would stay a few days to make sure he had no issues with swallowing/eating. If he was ok we could potentially go home in only a few days!

He would have follow up scopes in Cincinnati to check and make sure the scar tissue does not grow back. If it doesn't grow back then the procedure worked and we hit a home run. If it doesn't then we need to do the Airway Reconstruction surgery.

Airway Reconstruction Surgery:
For this surgery they would make an incision on his chest and shave a piece of his rib off. They would then have to open up his neck and insert the graft created from the rib into his vocal cords and snap it into place. This surgery would be much more invasive obviouslly. He would also have to be on the venitlator for a week and in the hospital for at least another week learning how to swallow with his new airway.

Of course we are praying the first approach works. Jacob is very high risk so I am glad they agree with Cincinnati and are going to try the less invasive approach first. Dr. Zur said she would have done it tomorrow while in there doing the scope but he is on Aspirin so they don't want to risk it. She said that she is not concerned about him because he is gaining weight well and has been doing so well despite his airway. She said that after they get the results of the scopes we will talk scheduling.

9:45 am - Cardiac Anesthesia
They basically went over his history and took his vitals. They discussed the procedure and eating/medicine information. The best part about this part of the day was she kept saying how Jake didn't look like a hypoplast. She couldn't believe how good he looked and kept saying he looked like a million bucks.... he is certainly worth that much (Literally after the cost of the surgeries lol). Ok all jokes aside it went great.

12:20 pm - GI
GI went well also. We discussed Jacob's eating and he examined him. He said we have a lot of room to move up with his reflux medicine. He also said that although Jake is doing great weight wise he would like to add some more calories. Jake is in the 25th to 50th percentile for weight and 50th for height. Since his height is growing more rapidly they want the weight to match. He said we should add carnation good start to his milk. I personally think Jake will love the flavoring. He also gave me more tips on increasing calories.

He discussed the procedure tomorrow and what they would be doing. GI's scope will only take about 10 minutes. They are going to biopsy some of the tissue in his stomach, intestines etc. They said in Jake's age they can get more information that way because it is hard to see everything. The main thing we need to know is if there is inflammation in the area of the vocal cords. If there is and he is refluxing we need to adjust meds and fix that because if it is irritated it is more likely that the scar tissue will grow back.

They are also going to put in a GI probe which is a small tube inserted through his nose into his stomach. This will have to remain in for 24 hours . It will measure the reflux he has and give them a better picture on what is going on with that so we can adjust his medication accordingly. The results will not be in for a few weeks but Jacob will remain in the hospital Friday night and be discharged on Saturday morning.

2 pm - Cardiac Echo
Jacob has been sedated for the last few echos he has had so when Dr. Szwast said she wanted this one non-sedated I thought... No way he will sit still. BOY did he ever prove me wrong. Jake had been dealing with the hospital since 8am so I thought he would be so irritable. He laid back with his legs crossed and watched Phineas and Ferb the whole time without fussing! I was in shock and oh so full of pride. He did scream at the end during the part where they put the ultrasound probe on his neck but by then they had the important information they needed. My son is seriously a ROCK STAR!

GIVING BACK
The highlight of our day was bringing Sisters by Heart care packages to the Fetal Center for Diagnosis and Treatment at CHOP. This is where new moms go to their appointments and prepare for the birth of their child. They are the only hospital in the country with a unit like this where mom's can have their baby in the children's hospital so they are right where they need to be for immediate care. It also allows the mom to remain close to the baby while she is still in the hospital.

I brought 12 Sisters by Heart packages with me to deliver to the unit for new moms. While waiting for Denise Donahue (My coordinator when I was pregnant with Jake) I saw the Doctor that delivered him. She was so excited to see Jacob. It was so fun showing off how great he looked. I told her about the packages and right away she said they had moms of HLHS babies in the unit right now and would LOVE for them to get our packages.

Denise came out and it was so great to see her. Denise is amazing, she is such a beautiful soul. I remember her calling me after I requested a second opinion from them and she was so compassionate and treated me like a friend I had for years. After talking to her I knew I had to deliver him at CHOP. Denise gave me a big hug and was so happy to see Jacob. I showed her all of the items in the packages and she was so excited to have them to give to their moms. She said she would bring some to the mom's in the Special Delivery Unit and give some to new parents who come in and get the diagnosis of HLHS. This is such a dream come true. To be able to have HOPE given to these parents. I also gave her a bunch of brochures and told her I would bring more packages when we came back for Jacob's surgery.

I was glowing after leaving there. It just felt so amazing to personally drop off these packages. Showing off my little Rock Star was pretty fun also.

When we were leaving we stopped by the cafeteria to bring back food to the hotel. I happened to see Dr. Rome who was the Dr. who performed Jacob's cath when he coded at birth. This cath saved Jacob's life. His atrial septum collapsed and blood had no where to go so his lungs flooded. Dr. Rome acted quickly and opened it up. Jacob was very sick and no one know if he would make it to his surgery but thanks to Dr. Rome he did. So it was not only Dr. Spray who saved our boy with the surgery but also Dr. Rome. I stopped him and told him who I was and what happened 16 months ago. I thanked him for saving my baby boy. Dr. Rome has always been very quiet and serious when I have met him in the past but today he smiled and thanked me for letting him see Jacob and for telling him. He looked as if he was humbled and it felt good to be able to make him see how he touches lives and saves lives. I don't think he is told that much. The heart surgeons get the credit and I think that the caths are overlooked some times.

I can't tell you how amazing I feel right now. I don't think today could have gone better. I am PRAYING tomorrow is the same.

Jacob's surgery will be at 7:30am, we need to be there at 6am. Please pray for a smooth surgery for Jacob and that he will tolerate the anesthesia and not have any problems tomorrow.

I will update as soon as I can.

Thank you as always for all of the continued prayers. God Bless.

Love,
The Bakers

Philly Bound...

2011-07-26T21:09:00.007-04:00

I can't believe it has been a MONTH since I last posted on here. I was doing good updating weekly for a while. Sorry for the lack of posts. The boys are both doing great. Jacob is walking EVERYWHERE.

We have been preparing for our next journey to Philadelphia. We are leaving tomorrow morning and will be in Philadelphia through Monday. My mom, Aidan, Jacob and myself are driving there and Andy's step mom (MiMi) will be flying there to meet us.

Here is the plan for the next few days:

WEDNESDAY

Driving to Philly and "Trying" to relax with the boys

THURSDAY

8:20am: Meeting with ENT
9:45am: Meeting with Cardiac Anesthesia
12:45pm: Meeting with GI
2:00pm: Jake will be getting a heart echo to check his function. Jake will most likely be fed up by this point so pray they can get a good picture of his heart. It will be a non-sedated echo.

Sometime during the day I am dropping off 12 Sisters by Heart packages to CHOP's Center for Fetal diagnosis and Treatment to be given out to new families about to have a child with HLHS.

FRIDAY

Jake will go under cardiac anesthesia and have scopes by ENT and GI. They will give us the time on Thursday evening. GI may leave a probe in that will stay in overnight. If they leave it in then he will be spending the night at CHOP in the cardiac unit.

SATURDAY

Hopefully if all goes well then Jake will be discharged Saturday morning. If he is back to himself then I will bring him back to the hotel where my mom and Mimi will watch the boys. I will then go back to CHOP to attend the Cardiac Seminar they are having. The seminar is from 8am to 5pm and will discuss their Single Ventricle Survivorship Program. I won't be able to attend the whole conference but I would love to at least get the information. I am really interested in enrolling Jake in the survivorship program when he gets older. I also look forward to hearing what advancements have been made and seeing some friends I have met along this journey.

SUNDAY

If Jake is back to his old self and we feel comfortable doing so then we hope to take the boys to the beach for the day for some relaxation. We will of course have to play it by ear and also see what the weather is like as well.

MONDAY

COMING HOME!

Planning this trip has been very emotional for me. I know Jake will do great with the scopes, I am just nervous about what happens next. After the scopes I will discuss surgery with his doctors. I don't know if they will want to do his surgery right away, in a few months, next year. I know we will be in the best possible place for Jacob and I feel better knowing his cardiac team is there. I am just so nervous about this surgery. Jake is a fighter, he is the strongest boy I know. As his mother I just want to protect him and make the best choices that I can make for him.

I know that his breathing is not normal. Now that he is walking (Which he is doing everywhere now!) his breathing is very labored and I do worry about what it will do to his heart. I would love to see him walk across the room without needing to stop to breathe. I know he NEEDS this surgery, still it never gets easier handing him over. So many "What ifs" go through my mind. I hope to be able to ease some of these fears after talking to the specialists. Anyone that knows me also knows that the more I know the better I feel. There is so much about this surgery that I don't know. I know that they need to shave a part of his rib to use as a graft... I don't know how they need to get the shaving. I know that his voice will be affected... I don't know how much. I know that he will need to be on the ventilator for a week while he recovers... I don't know how he will tolerate that. I know that if they don't get enough of his vocal cord removed this time then he will need to have the surgery again... and possibly again.

I am nervous. But I have faith and most of all HOPE. I have seen Jacob come back from so much worse. He is my warrior and I will be by his side. I KNOW if anyone can beat this next hurdle in our journey it is him.

I will update when I can. I am not sure if I will be able to update Thursday after I speak to the doctors, it will be a LONG day. I will update Friday when we get Jacob settled and let everyone know how he did and what the doctors think. Please pray for Jacob. The last time he had these scopes he screamed and thrashed for 2 hours straight and there was no GI probe that time. Also, Please pray the doctors can make the right choices for our beautiful boy. And if you could, pray for strength for our entire family.

Thank you so much for all of the prayers and support.

Love,
The Baker Family

Look what I can do Mom!

2011-06-30T16:33:00.003-04:00

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

2011-06-25T18:51:00.014-04:00

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...

2011-06-17T23:53:00.005-04:00

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!

2011-06-10T14:44:00.031-04:00

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!

2011-06-03T18:19:00.008-04:00

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!)

Baby Steps

2011-05-26T11:48:00.019-04:00

I know I have been slacking on blogging. I have started doing the Sisters by Heart blog every Sunday and having it on the schedule has helped me tremendously. I thought I should do the same system for Jake's fans! I will start posting a blog every Friday night. If things are hectic I will try to at least give you a quick... "Things are great" and a few cute pictures to look at. Again, I will TRY to do this. Please do not panic if you don't see a post one week. I promise, no news is ALWAYS good news around here.

Jacob Update...

He is starting to walk! Jake has been pulling up for a while now and walking along furniture. The other day he took 2 or three steps without holding on. He did it again today. He is up more than he is crawling now. He will hold onto anything he can find. Jake's physical therapist commented the other day on how good his depth perception is. If he thinks that it is to far even by an inch he will drop down, crawl then stand back up and start walking along the furniture again. He has all of the necessary skills, he just needs the confidence. Each day I see him get more and more daring. Today he trying to stand up without pulling up on something. It ended up being a funny looking downward dog yoga position and then he would fall over. It was really cute.

Like always the boys are keeping things busy around the Baker household. I have realized lately how hard it is only having one car for the family. Andy has to take it to work so we are stuck in the house. Wouldn't be a big issue except it has rained for almost 2 months straight (feels like that anyway). Andy is off for the next 3 days and it is supposed to be sunny everyday so watch out world the Baker's are breaking out lol. Can't wait to get some sun. We are thinking about going to the wave pool with the boys on Monday. It would be fun to see Jake swim for the first time. He LOVES bath time so I am sure he will enjoy it. It is supposed to be really hot though so we are still not sure. If we go we are going to go first thing so we can get a spot under a tree or something. Then I will most likely cover Jacob with sunscreen an inch thick lol. Honestly it doesn't matter what we do. I am just looking forward to spending time as a family... OUT OF THIS HOUSE!

How we have entertained ourselves on rainy days.

Face Painting- Don't we looks adorable!

Good ole' Fashion Fun. Built a tent under the kitchen table

Baker Friday Night Movie Camp Out!

Jake is growing up so fast. Language wise he is still just saying Ma-ma, Da-da and Na-na (for no). He has started shaking his head no as well... mainly at bed time lol. He FINALLY started waving. It's so cute, he waves to himself with both hands. He has also learned how to give high fives. He thinks that is the best thing in the world. The smile is so contagious. He has been letting go of furniture and standing upright without holding on for quite a while.. like I said, the skills are there he just needs to go for it!

Aidan has been so good with him. Every morning he says "Lets go get Jacob". He already looks out for his little brother. Of course he also likes to take his brother's toys. What kind of big brother would he be if he didn't test them out and make sure they were safe right lol.

I have to brag on Aidan as well. He is not able to go to pre-school/daycare right now because we can't risk the germs. I know we can't keep Jake in a bubble but when Aidan was in school he was sick every other day. With Jacob's tiny airway we can't risk that. It could kill him. That being said, we don't want Aidan to fall behind because he WILL start kindergarten on time. Therefore, we have school time at home. We work on letters, writing, math. I have purchased different pre-school workbooks that we work from. He is so smart. I sat him down the other day with a brand new writing workbook. It works on skills kids need before they can write. Mind you he has been practicing letters for a long time, I just wanted to get him more practice. He zipped through that thing in about 10 minutes. He did everything he was supposed to and did a great job. I am so proud of him and know that he will do great come kindergarten.

Health...

Jake's cardiology appointment a few weeks ago went well. No news is good news. His chest xray looked good and he sounded great. He got an A+ from Dr. Heydarian. We don't have to go back until after his scopes in Philly. Oh how the thought of that makes my stomach churn. I thought it would get easier but I was kidding myself. I cried like a baby the last time I handed him over for scopes. My child has been through 2 open heart surgeries and I was crying over a little scope. It just gets harder. I am not worried about the scopes in Philly. I mean don't get me wrong any time he has to go under cardiac anesthesia it is not good but I know he will be ok. Its what happens next. Surgery. I wish to God I could run away with Jake and hide him from all of this but I know there is no escaping his issues. Everyone tells me how strong he is and how this is nothing compared to what he has been through. I know how strong he is, I just wish he didn't have to be. I want to be strong for him. I HATE this. I can't fix it, I can't protect him. As a mother I am supposed to protect my baby from pain and danger. Instead I have to hand him over for another major surgery which could take him from me. How can I do that?

I have to be strong. For Jake. I will hand him over because I have to put my faith in his doctors and in God. Jake is struggling to breathe. I don't want him to struggle and I don't want his breathing to weaken his already weak heart. I will hand him over because I know that this is the best thing for him. I will be strong because being strong is my ONLY option. If Jake can fight like he has then I can fight to.

I love you baby boy. Mommy will ALWAYS be here fighting alongside of you, holding your hand. ALWAYS!

Spreading Hope... How can you help?

I was talking to a mom today and it brought me back to when I was preparing to have Jake. It seems like so long ago but at the same time like it was just yesterday. We met through Sisters by Heart. She received one of our care packages. She was talking about how she was afraid to jinx things and buy anything for her baby. Her baby is due in July with HLHS. It brought me back to when I was pregnant with Jake and how I had those same fears. I wouldn't let anyone buy any baby gifts because I didn't want to have to come home to them if he didn't make it. It made me realize how sad it is. As an expectant mother you should be excited and preparing for your baby. Not fearing if you buy a onesie or paint a room that you will jinx everything. It just makes me realize how important the work is that we are doing with Sisters by Heart.

To be able to give these moms the items they need that will be useful to them and even more so to give them some HOPE. I am so proud to be a part of such an amazing group of women. Most of all I am proud that through Jake I am able to help others who are just beginning this journey. I feel 100% that this is my purpose on this earth. I am sad Jake has to go through so much and I would take it away in a second if I could. In my heart I know he was given to me for a reason. I just feel it. Together we can help create HOPE and help spread awareness. Together we can make a difference!

Despite all of the HOPE and success stories far to many children are still fighting this battle and sadly so many don't make it. 4000 babies this year will not live to see their first birthday.

This week a beautiful little girl named Vivian passed away. It came as a shock and I was heart broken to learn of her passing. Vivian was having complications post-Glenn (second surgery for HLHS). She went in for an MRI to see what was going on and sadly never recovered from anesthesia. Please keep her family in your prayers as they feel a pain NO parent should ever feel.

Vivian Gorgone- Gone from this earth... forever in our hearts!

It is because of Vivian that I fight for awareness, because of all of the babies who have lost their lives and for those who continue to fight every day for what most of us take for granted... a chance at life. This HAS to change. We HAVE to change it.

Our children look healthy while their anatomy speaks a different story. People don't know about Congenital Heart Defects so they don't know to donate to promote funding. Please continue to help us fight this disease. Continue to spread Jake's story and spread awareness for Congenital Heart Defects. Our children need us to be their voice. We need to fight for their future.

Will you join me? Here are ways that you can help...

1. Tell someone about Congenital Heart Defects

Tell Jake's story or another story of a child with a heart defect. Simply tell someone a CHD fact or that they exist! You would be surprised at how many people don't know they even exist. I was one of those people.

Facts:
• 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.

2. 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.

3. Donate to help fund CHD research:

American Heart Association
Children's Heart Fondation
Congenital Heart Information Network
It's My Heart
Little Hearts
Mended Little Hearts

3. Donate to a group who offers support to families dealing with Congenital Heart Defects:

Sisters by Heart
Wyatt's Warmth from the Heart
Mia Marrone Heart Fondation

3. Join or donate to a heart walk or start one of your own!

Join Team Jacob: If you are local and you would like to walk with team Jacob you can do so by clicking here. When asked, select that you want to join a team and type in Team Jacob.

Event Info:
Where: WV State Capitol Grounds, Charleston
When: September (actual date coming soon!)

DONATE
Our Goal this year is to raise $3000. Last year we raised $2,000 and we are starting much earlier this year. Please help us reach that goal.

CLICK HERE TO DONATE

Thank you so much for supporting Jake and all of the special heart babies out there. Your support and love means so much to all of us.

Love,
The Baker Family

The Greatest Gift!

2011-05-08T23:06:00.008-04:00

I had such a great Mother's Day. Last year I was in Philadelphia with Jacob as he recovered from open heart surgery. My husband and Aidan were back in West Virginia. It was heart breaking to not be with both of my boys on Mother's Day. I can't tell you how blessed I felt to have our whole family together this year. It was the greatest gift I could as for.

The boys bought me pink roses (My favorite!) and a sweet card. They also brought me breakfast in bed and my husband cleaned the house! Seriously, I could get used to that. We spent the day at my sister's house with my parents. Aidan had a blast playing with his cousins and enjoying the beautiful weather. My sister has a small bridge that goes to a fish pond. The bridge was missing a few planks so Aidan said he had to make it safe and spent hours bringing old bricks over and "Fixing" the bridge. He had SO much fun. Thank you again to my amazing family for a great day!

I was also excited to find out today that Sisters by Heart is officially a nonprofit corporation! Our next step is to obtain our 501(c)(3) status so that all of your much-appreciated contributions will be tax deductible! I am so honored to be a part of such an amazing group of women. We have sent out over 40 care packages to families of children who are newly diagnosed with HLHS. We appreciate all of the continued love and support! To learn more visit our site at heartsisters.blogspot.com.

I hope each and every mother out there had a beautiful day. A special Happy Mother's Day wish to all of the mothers out there who have had to say good-bye to their precious angels. Know that you and your sweet angels are in our hearts always. I pray you were able to find some peace and comfort today.

As a tribute to all heart moms I am excited to share with you this beautiful poem that I came across. It was written by Stephanie Husted, a mother to a son with HLHS. Stephanie has such an amazing gift and her words touch my heart so deeply. Thank you Stephanie for sharing your poems with all of us. You really do need to write a book!

A Mother's Day Poem

This is for the Mother's...
(Each mother that I've known)
Whose greatest hope was someday,
To have children of her own.

For the ones who proudly rocked their dolls,
And kissed them each goodnight,
This is for the Mother's...
Who were told..."Something's not right".

This is for the mother...
Who when faced with such a trial,
Sits beside her child's bed,
Just praying all the while,

For mom's who learned of patience,
In a way that no one should,
For the mothers who know sometimes,
Life is anything but good.

When dreams of all the "oohs" and "ahhs",
As doting friends arrive,
Become instead...a battle,
To help their child thrive.

This is for the mothers...
Who refuse to face defeat,
Who become their child's advocate,
Who teach their child to eat.

Appointments fill their busy lives,
It's time to go again,
With feeding pumps, and specialists,
A tank of oxygen.

As people stop...to take a look,
Just wondering...what's wrong?
I've seen that look, a hundred times,
"You must be very strong".

The oohs and ahhs...don't matter,
Now life seems much more clear,
I'm lucky I'm his mother,
I'm blessed that he's still here.

This is for the mother....
Whose shaking hands release,
The child that she loves so much,
(And then she prays for peace)

"We will take good care of him"
The nurse says carefully,
This mother's thoughts are simple,
"Lord bring him back to me.

His life no longer in her hands,
She wonders what's in store,
This is for the mothers....
Who has walked this road before.

This is for the mother....
Whose worst fear comes to light,
"Were still not certain what went wrong...."
"We'll watch her through the night."

For mother's who sit powerless,
Praying...please let her survive,
For mother's who must go on somehow,
When their miracle doesn't arrive.

As some wake up on Mothers day...
To kisses, cards and laughs,
Other's have just memories,
and well worn photographs.

This is for the Mother's....
Who knows that it's a treasure,
To have a child...love a child,
Their is no greater pleasure.

For runny eggs and blackened toast,
Arranged upon a tray,
With a bunch of wilted dandelions,
"Mom does it taste okay"?

For every busy restauraunt,
And every crowded mall,
The words...."I love you mama" are...
The greatest gift of all.

~Stephanie Husted
Heart Mom to Braeden

To be a mother...

2011-05-07T22:29:00.010-04:00

I once thought that to be a mother meant to keep your children safe, teach them right from wrong, kiss their boo-boos and read them a story before bed each night. Last year I learned that being a mother is so much more. When I had Jacob I not only became a mother (for the second time), I became a a stay at home mom, a nurse, an advocate... most of all I became a heart mom.

I have laid my child in a surgeons arms not once but twice, I have slept upright in a hospital chair, I have listened to the beeping of machines and been thankful, I have smiled through the tears, I have found strength when there wasn't any left. I am a Heart mom and this weekend is Happy Mothers Day! A Mothers love is the fuel that enables a normal human being to do the impossible.

This quote was passed around on facebook tonight and I had to share it because it is a perfect description of what our family and so many more go through. People ask me how I am so strong or how do I stay so positive. The answer is easy, I am a mom. When you have a sick child you go into survival mode. The first night Jacob was out of the hospital I held 8 syringes in my hand and cried thinking "how was I going to do this?". How was I going to keep this fragile baby alive? I was scared and didn't sleep a wink that night because I couldn't stop watching his machine to make sure his heart rate did not drop to low. He couldn't eat by mouth so he was tube fed, I had to monitor him all of the time. I wondered if he was too blue or too puffy. Should I call the doctor or is it just normal baby stuff?

I don't know exactly when it happened but it all became normal to us. Pretty soon I was pushing meds without thinking about it and I could tell you his heart rate just by listening to his breathing. I was a heart mom. I was Jake's mom. After his second surgery he was on oxygen, constantly connected to his pulse ox machine, on even more meds (I believe 8), and still on the feeding pump. Again I worried if I would be able to do it. This time I knew I could. I was no longer afraid because it was our "Normal".

Being a mother is about so much more than bedtime stories. It is about doing WHATEVER it takes to give your children the best possible life. It is about the joy you feel when you hear your child laugh or see them smile. It doesn't matter how many hours of sleep you lose or how hard life gets because that laugh and that smile just makes it all worth it. I asked Aidan what he was getting me for Mother's Day. He looked at me, smiled and said "Love". Absolutely perfect. Seriously I am the luckiest mom on earth.

Happy Mother's Day to all of the mothers out there.
A special Happy Mother's Day to my own mother, who has put her own life on hold so many times to help my family. I love you so much Mom and am so lucky to have you as my mother. Thank you for everything you do!

My Beautiful Mama

Love my boys!

My Heart Hero

2011-05-04T21:38:00.015-04:00

I am happy to say there is no real news to report. Jake is amazing as always. Thank GOD the cold never amounted to anything. He had a little cough for a week or so and that was it. He never had any other symptoms and his oxygen levels stayed in the 80s which is where they are supposed to be. The last time I checked him he was actually registering at 90 which is awesome for him.

Jake has a cardiology appointment on Tuesday with his best buddy Dr. Heydarian. It is just a routine check up so it should be uneventful but I will write a post next week letting everyone know how it went.

Until then here is a quick run down of what we have been up to.

EASTER

The Easter bunny was great to Aidan and Jake this year. They both got big baskets full of goodies. Aidan and Jake both helped make brownies to take over Grandma's and Grandpa's for Easter dinner.

Aidan had so much fun this year doing an Easter hunt with his cousins. A special thanks to my sister for buying all of the goodies for the egg hunt and organizing it. And to my parents for an amazing dinner as always!

MY HEART HERO

On Saturday Jake got a special gift in the mail. A Heart Hero cape! I heard about them on facebook and requested one for him a few months ago.

Heart Heroes was created by 3 moms who have children with congenital heart defects. After seeing their children face the challenges of heart operations and cardiology appointments, the moms of these heart heroes decided to create the opportunity for all children with Congenital Heart Disease (CHD) to have a Heart Hero Cape. Thank you Heart Heroes for Jake's cape. Big brother Aidan also had lots of fun wearing it and pretending to be a super hero.

Click here to learn more about Heart Heros

Click here to Donate a Cape to a child with a CHD

DAY IN THE PARK

It has rained here everyday for as long as I can think back. We were all getting pretty sick of being stuck inside. Luckily we had a break from the rain on Saturday and I was able to take the boys for a playdate at the park! My friend Natalie and her little boy Alex joined us and we had a great time.

It was so nice for Aidan to be able to play with friends. I feel bad that he doesn't get out more often. We had to take him out of daycare when we had Jake because we couldn't risk Jake getting sick. Aidan was sick every week when he was in daycare. Since we took him out he has only had one cold in a year! It has been great for his health but I feel bad that he doesn't get to play with kids his age very often.

It was so fun watching him run around with all of the other kids. He kept talking about all of his friends that came to play with him. I think he thought the park belonged to him because everytime someone left he would say... "You're welcome to come back anytime" lol. Everyone had a blast. I even let Jake out of his germ bubble and let him play with the big kids!

I can't wait until all of this rain subsides so that we can go to the park more often. The boys enjoyed it and so did the Mommies!

The dreaded first cold...

2011-04-20T23:15:00.003-04:00

I am so sorry that it has been so long since I have updated everyone on Jacob. The boys have been keeping me on my toes!

To say Jake is mobile is an understatement. This kid is EVERYWHERE. Jacob is either crawling at warp speed down the hallway or walking along the furniture.

Unfortunately, the moment I have been trying to avoid like the plague as creeped its way into our home. Jake has his first cold. Aidan has been congested for a few weeks. It gets worse when he is outside so I was not sure if it was a cold or allergies. I am thinking its a bit of both. I guess I should be grateful that we were able to avoid it for a whole year, through 2 open heart surgeries! Still, for Jacob colds are extra scary because of his tiny airway.

So far its just a cough. His breathing sounds a little "Junky" so I think he is a bit congested in his chest but he is handling it well. I have been checking his oxygen saturation periodically and he is always around 85 which is great for Jake. I called his pediatrician to let her know and she agrees that there is no need to bring him in unless he has a fever, decreased appetite or low saturation. Even though he is acting normal part of me is still nervous every time I hear him coughing.

Despite the cold Jake has not slowed down a bit. I swear I look away for a second and the kid is down the hall in my room with the vacuum, lol. Jake LOVES the vacuum cleaner. Aidan used to at that age as well. I pulled out Aidan's old toy vacuum thinking it may distract him but he is no dummy. He wants the real thing. He loves to chase it around the room as I am vacuuming. He gets this big old grin on his face, super cute.

I think one of the main reasons I have not written a post in awhile is that I have been having a hard time with the new diagnosis of Jake's vocal cords. It's hard for me to sit down and think about or write about the fact that he is going to have more surgery this year. I know he has been through much worse and I know he is a fighter, but he is also doing so well and I don't want him to have to fight through even more.

I have always said that I won't live Jake's life fearing his death. This is true, but there are times where you can't help but be afraid. Right now is one of those times. My mind is so full of "What-ifs". I am having a harder time with this surgery than his last open heart surgery. I know that sounds crazy! I think it is because I have always known that he NEEDS the 3 open heart surgeries in order to survive. I don't know that he NEEDS this airway reconstruction surgery. Jake has always proven to beat the odds and fight things that most can't. 95% of kids with his airway need a tracheotomy immediately. Jake has half of a heart and a tiny airway yet he continues to do amazingly well. His heart function is great right now.

The fear is that Jake is working so hard to breathe it may eventually wear on his heart. We need to protect his heart at all costs. We do not want him to end up needing a heart transplant because he wore it out with his breathing. As Jake gets older and more active he will be needing to push more air through his airway which means it will also become increasingly more difficult for him to breathe. So even though Jake is doing well now it is a risk to let it go on like it is.

THE PLAN
We will be heading to Philadelphia in August. On August 11th we will meet with the ENT and GI teams at CHOP, we will also be meeting with cardiac anesthesia. We will hang out in Philly for a week and then his scopes will be on the 18th. It is very hard to get all of the different departments coordinated on the same day so that was the closest they could schedule our two appointments.

On the 18th, Jake will once again be put under cardiac anesthesia and ENT and GI will each perform a scope. The reason GI is involved is they need to make sure Jake is not aspirating. If he is then it could cause severe issues after they open up his vocal cords. Once they are done we will discuss surgery. I plan on making sure they feel this is 100% necessary. I am also going to talk with his cardiac team while there about the risks. I want to make sure everyone agrees that this is the right choice for Jacob.

If everyone agrees then they will schedule his surgery. It will most likely be a month or two later depending on how urgent they feel it is.

THE SURGERY
I don't have all of the details right now and I am trying not to let myself Google. From what I do know they will have to shave a part of Jake's rib off and use that to make a graft which will be placed in his vocal cords. They will be removing part of the vocal cord which is irreversable. They can only take a small amount because opening them up will effect his voice and eating. They want to take the least amount while also allowing a good amount of airflow. Jake will then be on the ventilater for a week and sedated. This is the part I fear the most. I have not seen Jake on the Vent since the first few weeks of his life. It was the hardest thing I have ever had to go through. I know it will be 5x harder now since I have had him at home and watched him grow and develope. Please pray he does well and has no issues being extubated.

They will do a scope a month later and see how he is doing. If he still has issues then we will have to repeat the process. They want to do a scope every few months. I am hoping we can go to Cincinnati for the follow up scopes because I can't drive him to Philly every month and flying would be way to expensive.

So that is the plan. Please keep Jacob in your prayers as he begins this next part of his journey. I will make the best choice I can based on what his doctors think and what Jacob needs. The rest is not in my hands. I just have to keep the faith and pray that it will be ok. A few more prayers would be appreciated!

Heart Hugs,
The Baker Family

Jacob and Daddy

Help us fight the #1 birth defect!

2011-04-16T08:57:00.008-04:00

Team Jacob is once again participating in the American Heart Association Start! Heart Walk.

Jacob R. and Jacob B.

These two boys were both born with a severe congenital heart defect. Jacob R. (Left) is missing the right side of his heart. Jacob B. (Right) is missing his left side of his heart. Together they are making a difference!

THE FACTS:

Congenital Heart Defects are the #1 birth defect. Source: March of Dimes
Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes
About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation
Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation
This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation
The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation
Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation
Though research is ongoing, at least 35 defects have now been identified.
4-8% born with CHD have Hypoplastic Left Heart Syndrome
4-10% born with CHD have Atrioventricular Septal Defects
8-11% born with CHD have Coarctation of the Aorta
9-14% born with CHD have Tetralogy of Fallot
10-11% born with CHD have Transposition of the Great Arteries
14-16% born with CHD have Ventricular Septal Defects
Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood. Source: March of Dimes
It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications. Source: March of Dimes

WHAT CAN YOU DO?

JOIN TEAM JACOB
Please help us make a difference. If you are local and you would like to walk with team Jacob you can do so by clicking here. When asked, select that you want to join a team and type in Team Jacob.

Event Info:
Where: WV State Capitol Grounds, Charleston
When: September (actual date coming soon!)

DONATE
Our Goal this year is to raise $3000. Last year we raised $2,000 and we are starting much earlier this year. Please help us reach that goal.

CLICK HERE TO DONATE

Funding= Research. Research saves lives.

Please help us create a brighter future for both Jacobs and thousands of other children fighting heart disease.

Thank you!

Aidan's Birthday Cake

2011-04-15T22:32:00.007-04:00

I want to once again thank Icing Smiles and Rose for helping our family. I had originally written Icing Smiles to create a dream cake for Aidan. I was unable to be home with him on his third birthday because I was with Jake as he recovered from his first open heart surgery.

When I contacted them about his cake they offered to not only find someone to donate a beautiful cake to Aidan but to Jacob as well. I can not say enough GREAT things about Icing Smiles!

A HUGE thank you to April from Rainy Day Cakes. She created the most beautiful, delicious cake! I can't say enough great things about this masterpiece. Thank you so much April, Aidan loved his cake!

Aidan had such a great time at his party. Thank you to everyone who came and who made this day so special for him. We love each and every one of you and are so blessed to have you in our lives!

April, Aidan and his amazing cake!

Front of the cake

Back of the cake

Edible dump truck made from rice crispy treats... YUMMY!

Happy Birthday Aidan! Mommy loves you so much. I am so proud of you!

Bringing Hope to Broken Hearts

2011-04-15T17:23:00.005-04:00

Sisters by Heart is continuing its mission to inspire and support newly-diagnosed HLHS families.

With your help, we can reach more families and spread the word that a diagnosis of HLHS is not the end, but just the beginning of a life-changing and rewarding journey.

Our children, both survivors and angels, bring us HOPE for the future of HLHS. Please, share our message so that we may continue to reach out to those in need.

Baking a difference!

2011-04-05T21:57:00.016-04:00

Icing Smiles is an amazing non profit organization that provides custom celebration cakes and other treats to families impacted by critical illness of a child. Their goal is to create a custom cake for the ill child or their sibling that will provide a temporary escape from worry and create a positive memory during a difficult time.

I contacted Icing Smiles about doing Aidan's cake this year. I was in Philadelphia with Jacob last year and was unable to be with him on his birthday. I really wanted this year to be special for him. He has had to deal with so much this last year and has been amazing through it all. I am so proud of him. I received an email from Rose at Icing Smiles the same day I emailed them and was blown away by the fact that she not only said they would find someone for Aidan's cake but they also wanted to get Jake a cake.

There is nothing in this world better than this smile!

Sara Lane (WV Cake Lady) of Custom Cakes, llc designed a beautiful cake for Jacob and I can't thank her enough for helping us celebrate this major milestone for our little miracle. Jacob loves Jungle Junction so we decided to have the characters on a brightly colored "Topsy-Turvy" style cake. Here are some pictures of Jake enjoying his delicious cake and 1st birthday celebration.

Jake's beautiful Jungle Junction Cake!

Mommy and Jake.
(His mouth is full, he kept eating the yellow pieces off of the bottom of the cake lol)

More Party Pictures

Big brother Aidan and friend Sophie blowing out Jake's candle

He was so tired but would not stop eating cake.

It's my party I can cry if I want to!

Jake and best buddy Alex.

Thank you again to Icing Smiles, Rose and Sara Lane from Custom Cakes, llc for helping us celebrate Jake's first birthday with such a beautiful cake.

Visit IcingSmiles.org to learn more about Icing Smiles. If able please make a donation so this amazing charity can continue to bring smiles to sick children and their siblings.

See more beautiful cakes by Sara Lane at www.wvcakelady.com

Happy Birthday Jacob

2011-03-26T02:00:00.005-04:00

We are so proud of you Jacob. You have been through more in one year than many go through in a lifetime.

Make video montages at www.OneTrueMedia.com

Thank you Culloden Elementary!

2011-03-22T21:01:00.007-04:00

I would like to say a big thank you to the kids at Culloden Elementary School. They recently participated in Jump rope for heart to raise money for the American Heart Association.

I would like to extend a special thank you to Hannah, Emily, Jacob and Ethan who raised $300 in Jacob's name.

Also thank you to Kelsy who also jumped in Jake's name at her school.

Thank you again to all of the kids who jumped and I am sorry if I left anyone out who may have jumped for Jake. It means so much to our family that you are helping fight to create a better future for everyone who is affected by heart disease.

Jacob Van Nostrand

Hannah & Emily Armstrong

Article in the Charleston Daily Mail

2011-03-17T21:42:00.005-04:00

Monica Orosz of the Charleston Daily Mail did a wonderful article about our amazing little heart warrior. I couldn't believe how beautiful the print edition turned out. What a great keepsake for my little man. Thank you Monica, we love it!

Click here to read the article

Pajama holes

2011-03-13T14:22:00.002-04:00

So I got a call from my dad the other day and he was saying he couldn't believe I have a picture of Jake on the blog with a hole in his pajamas. I started laughing and informed him that all of Jake's PJ's that have a zipper have holes in the foot. I cut the foot out so that I can hook u his pulse ox machine at night while he is sleeping. He also has a small hole on the side which we used to use for his feeding tube at night.

This started making me wonder how many other people think my poor kid is in ratty clothes lol. I thought I better post this to reassure everyone that the clothes are not falling apart... they are like that on purpose.

The things we take for granted...

When most parents go shopping for baby clothes they buy things because they are cute. When a parent of a sick child goes shopping we have to look for clothes that accommodate wires, tubes and medical equipment. I am now starting to be able to put Jake in two piece pj's which is better if I need to check his oxygen however I have to tuck in the shirt or he will try and pull out his g-tube.

The good thing is that now Jake is pretty much wireless! At one point in time he had 3 wires attached to him all night. He had the pulse ox, feeding pump and oxygen. This was so nerve racking because everyone knows you don't put things in a babies crib so imagine my fears with him having CORDS in his. He had to have it though. Now we check his pulse ox as needed so he never has cords in his bed at night (YAY!).

So my dad will be happy to know that I have stopped cutting holes in Jake's clothes!

Jake's visit to Cincinnati Children's Hospital

2011-03-05T21:49:00.007-05:00

We left for Cincinnati Children's Hospital on Wednesday. The last few days have been an emotional roller coaster but I am glad we finally have the answer to Jake's "Unique" breathing. Warning: This will be long.

THURSDAY

We had an appointment at 8:15am with the ENT that would be doing one of Jacob's scopes the following day. We figured it would be a quick uneventful appointment and never imagined we would learn what we did. They wanted to look at Jake's vocal cords to see if they were paralyzed. He needed to be awake so they would be able to see if they were moving while he cried.

I was anxious to see what they found since there has always been the question about his vocal cords and whether they were paralyzed or not. I thought if they were then at most it would be partial since his voice was normal. I was wrong. The scope showed complete bilateral paralysis of the vocal cords.

When we breathe our vocal cords open, when we talk or eat they close. That is why Jake has never had aspiration issues and his voice is normal. However it does affect his airway. Jake only has a small opening for air to move through. The only movement in the vocal cords is when he exhales and that is just from the force of the air being pushed out. When he inhales he has to suck all of the air through the small opening. When he is active his breathing gets worse because he is trying to move air through. In 95% of the cases of bilateral vocal cord paralysis the kids need to get a tracheotomy immediately because they can't breathe at all. The fact that Jake is strong enough to breathe is amazing, add that to him only having half of a heart... I am just in awe of my son.

This explains why he has always had issues needing oxygen after his heart surgeries. His body was in a weakened state and could not breathe through that small hole until it was healed. Its amazing he was able to get off of the vent so quickly or even at all.

The doctor said that Jake won't need a tracheotomy because it would only be a temporary fix. In order to correct this Jake would need surgery. Right now Jake is doing great however as he gets older he will become more active and need to push more air through and he won't be able to do it. He also said that this could put more strain on his already weak heart so they may want to do the surgery sooner than later.

I know it sounds silly but I felt just like I did the day we learned about his heart. We left that day feeling like our son was just handed another life threatening diagnosis. Fearing even more the inevitable day when he gets his first cold. Fearing that if his airway swells even slightly that he would not be able to breathe at all. Happy and so proud that he is one of the 5% who don't need a tracheotomy but so very scared that one day he will stop breathing and I wouldn't be able to get him help in time. It was a very emotional day but we decided to make the best of it for the boys.

After getting the "OK" from the doctors we took them to the Cincinnati Zoo. We wanted Aidan to do something fun since he had to spend so much time at the hospital with us. We never take Jake in public so this was a big deal for us. However he was so bundled up that he slept most of the day lol. Aidan had a great time.

Friends of ours from back home were in Cincinnati because their son (also named Jacob) is having his 3rd open heart surgery on Tuesday. Their Jacob is missing the right side of his heart. His mom Michelle reached out to me after she read an article about awareness I did while pregnant with Jake. They came to the Zoo and we had a great time visiting with them. It was so nice seeing our Jacob's together.

Jacob Roth (Tricuspid Astresia)
Jacob Baker (Hypoplastic Left Heart Syndrome)

FRIDAY

We arrived at the hospital at 10:30am. Jake was having 2 seperate scopes, one from Pulmonary and one from ENT. They were also removing his skin tag and doing a heart echo while he was still under cardiac anesthesia.

Aidan was not allowed in the pre-surgery prep area so he and daddy stayed in the waiting room while I went in with Jake. He was not happy about not being able to eat and let everyone know it. We answered many questions and I also was able to speak to the pulmonary doctor who was doing his scope. He was so great and talked with me for almost an hour about the vocal cords and what would happen if he needed surgery. He also told me that it is common to paralyze the left cord during heart surgery but very rare for them both to be paralyzed.

I walked with Jacob into the Operating Room where I told him I would see him soon and then began crying as soon as I left him. I know that it is nothing compared to everything else he has gone through but it is just so hard as a mother to hand your child over for any procedure especially when their anatomy is so fragile.

We waited almost 2 hours before I was finally able to go see my sweet baby. We then went to a conference room to talk to the ENT and Pulmonary Doctor. They told us that they were able to see that the vocal cords are being held together by scar tissue. Most likely this is due to him having to be intubated so quickly when he crashed right after birth. There was not much time because his oxygen was down to 30% so they had to act fast. He was then intubated for 2 weeks after. This explains why when CHOP looked they were moving some, he was only 4 weeks old so the scar tissue must have just started growing over them. Now they are completely tied down by it.

The good news is that there is a possibility that Jake's vocal cords are not paralyzed. The problem is we won't know until we get rid of the scar tissue. They explained that they could go in through his mouth and cut the scar tissue out and once he heals they can look at his vocal cords and see if it worked. They said it has not been very successful in the past. Maybe 1 in 10 cases are successful. They said that if Jake were a healthy child they would say to just go ahead with the vocal cord surgery however since he is not they think he should do the least invasive route possible. If it doesn't work then we can schedule surgery. Most likely it would be in a few months.

They also said that he does not have tracheomalacia. All of his breathing issues are from the vocal cords.

SKIN TAG
They were able to remove the skin tags on Jacob's left ear. It did bleed quite a bit but they stitched it up with dissolving stitches.

HEART ECHO
Jake's heart echo looked great! They were very pleased with his heart function and there was very little Tricuspid regurgitation. The Glenn shunt looked great. YAY for good news!

RECOVERY
Jacob had a very difficult night and I am so glad I asked them to keep him for monitoring. He did not like the feeling of the anesthesia and I am pretty sure it gave him a headache. He screamed and thrashed for 2 straight hours.

He kept trying to rip out the IV's so they took one out and just left the one on his foot. He also was very gassy so I vented him a few times and was shocked at how much air came out. I think this was also a big reason he was so uncomfortable. Many kids vomit after they first eat when coming out of anethesia, Jake has a Nissen so he does not throw up. I suspect instead the air sat in his belly and caused him a ton of pain. He also kept grabbing the ear where they cut off the tags.

Dr. Heydarian's daughter is a cardiologist at CCH and she stopped by during this time and had them order him Toradol because he was so miserable. She stayed for an hour and a half to make sure Jake was ok. I told her she did not have to stay but she was so sweet and wanted to make sure that he was ok. We are so lucky to have the Heydarians in our life!

He woke up throughout the night but each time it was easier to get him to sleep. I also realized that Jake has already started fearing doctors and nurses. Every time one would come in he would start crying. The staff were all extremely nice and tried not to bother him except when they had to take his vitals. It broke my heart to see him hurting so bad. I started crying myself. He would just look up at me and say ma-ma. It was so hard to not be able to make it better for him. He also has started saying na-na anytime he doesn't like something.. his word for No. We didn't get much sleep but by morning he seemed to be back to normal. THANK THE LORD!

The Surgery

If Jake needs to have the vocal cord surgery they said that he would be in the hospital at least a month. He would be on the ventilator and sedated for a week. They basically would have to take a small piece from his vocal cords and see how that works and if its not enough then they do it again. They can't take a huge chunk out because as you remove some of the cord you also lose voice quality. They want to find a good median. They also would put a graft in using part of his rib. It sounds like a very difficult surgery/recovery so I am praying we hit the crazy odds once again and cutting the scar tissue works.

If Jacob needs the surgery his voice will not be great quality no matter what. He will have a voice but because the cords won't be able to shut completely, his voice will become hoarse or wraspy. He also may have trouble drinking think liquids. The goal is to cut the least amount as possible but also allowing him to have more airway. As much as I don't want his quality of his voice affected I also know that his airway is more important.

WHAT'S NEXT?

I have been keeping Jake's cardiologist at CHOP informed every step of the way. Cincinnati is sending them the video and images from the scopes so she can show them to the ENT team at CHOP. Cincinnati is #1 for ENT however if Jake is going to be intubated for a long period of time and have such a difficult recovery I would feel more comfortable knowing that he is in CHOP with his cardiac team who knows all of his curve balls and history.

CHOP will most likely need to do their own scopes. I had hoped they wouldn't need to but Cincinnati told me that CHOP would need to do their own because images/video is not enough. You need to be looking with your own eyes to really see whats going on. This means we will probably have to go to CHOP soon for scopes. Then their ENT dept. will talk to Jake's cardiologist and surgeon and they will decide the plan of action.

We had hoped that Jake would not need surgery this year but as we know life with a hypoplast is very unpredictable. Right now we are just so happy to be home and so blessed that Jake is doing so well despite his challenges. He is my hero.

Thank you so much for all of the prayers and well wishes.

In the OR

2011-03-04T13:09:00.003-05:00

Jacob is in the OR. Pulmonary and ENT are each doing a scope, they are removing his skin tag and he is getting a heart echo.

Yesterday they looked at his vocal cords and it looks like they are both paralyzed. 95% of the kids that have this need a tracheotomy immediately after they are paralyzed it is amazing he is doing so well. He will most likely need surgery to open up his airway in the near future.

We will learn much more after today's scopes. I will do a very long update with everything tomorrow. I am staying the night with him in the hospital tonight so will not be able to.

Please keep him in your prayers as he always has trouble with SATs after Cardiac Anethesia and yesterday it was found that his airway is very very small.

Thank you!

Praying for good news

2011-02-27T22:09:00.004-05:00

YOUR JACOB FIX

Jacob is doing very well. He is crawling everywhere and does really well getting up and down and pivoting from the sitting position. He has started getting all of his brothers toys so the dreaded sibling fights have begun. I have to say I LOVE IT! It is so blissfully normal lol. He is gabbering really well now too. He now says da-da all of the time and ma-ma here and there. Andy and I are pretty sure that he thinks I am da-da. I recently went on a short vacation with 2 of my fellow Heart Sisters and Jake did not talk much while I was gone. They said he laughed and was happy but would not say da-da. As soon as I walked in the door he started saying da-da like crazy lol. He is also saying ba-ba and a few other random sounds. Its so cute hearing him talk. I can't believe how big he is getting. Where did my little baby go? Before I know it Jake will be running all over the house!

We still are tube free! He loves to eat. I swear Jake would eat all day long if he could. He especially loves snack time. I have never seen a kid shove cheerios in his mouth so fast lol. He can chew really well now thanks to the new teeth! He now has 2 bottom teeth and 2 on top, with 2 more coming in. Overall he is developing so well and we couldn't be more proud.

ROUGH WEEK AHEAD

Jake will have testing done this week at Cincinnati Children's Hospital. Please send positive vibes his way as its going to be a rough week for him. On Wednesday the whole family will be traveling to Cincinnati for Jacob's appointments. We were going to leave Aidan with my parents but their house was attacked by the FLU so that is out of the question. They have been quarantined from seeing the kids until its been out of the house for at least a week. We can't risk it! So the whole gang is headed to Cincinnati.

On Thursday we will meet with the ENT and discuss the scope they will be doing the next day. We will also discuss the skin tag they are going to remove from his ear.

Friday the ENT and Pulmonary doctors will team up and do two separate scopes on Jacob to look at his upper airway and figure out why his breathing is not improving. They will also be removing his skin tag and then he will go for a Cardiac Echo.

These are minor procedures compared to everything else Jake has been through however he will undergo cardiac anesthesia. I get nervous anytime he goes under because his oxygen levels tend to be lower for a while afterward and there is always risk involved especially for a hypoplast. Jacob's will most likely stay overnight to be monitored. I feel much better knowing he will be in a hospital in case he does have oxygen issues.

Please pray that Jacob handles everything well and is able to be released on Saturday. Also please pray that the results do not show vocal cord paralysis and that it is nothing severe. I still have the fear of the word "Tracheotomy" creeping in. Jacob is so happy and is starting to talk so well. His voice sounds normal when he is saying words like da-da and ba-ba but we do need to know why he continues to have rapid, noisy breathing. This will better prepare us for when he does end up getting a cold. The fear is that his airway could close which would be fatal so it is important to know exactly what is going on. Praying that it is something that will resolve on its own and our baby won't have to go through anything else.

Also as always we are praying his cardiac echo continues to look good. This is a huge fear for me right now with the news of Travis passing. Every time you go for a heart echo you can't help but fear what they will see. Pray Jacob's heart function is good and there is no narrowing and no leakage from his tricuspid valve.

I will update when I can however I will not be leaving his side at the hospital so please don't worry if I don't post on Friday. I appreciate all of the prayers so much.

Love,
The Bakers

A Tribute to Travis- Another angel taken too soon

2011-02-27T21:15:00.008-05:00

My heart is heavy tonight as it has been for a week now. One of my fellow Heart Sisters had to say good-bye to her 15 month old little boy last Saturday. Any time a child is lost it is painful. Unfortunately in the CHD community we see this all to often. This unexpected loss was extremely painful because it was a child I have watched grow into a beautiful boy.

Travis Gary DiCarlo holds a very special place in my heart. When I learned about Jacob's heart defect I was lost. I was so full of fear and I refused to let hope in because I thought that I was going to lose my baby boy and I didn't want to give myself false hope. I refused to join support groups afraid to become a part of a world that I could not wrap my head around. All of that changed when I found Travis. I was researching HLHS praying to find a glimmer of hope like I did for hours upon hours every night. I came across the DiCarlo family blog www.teamtravis.info.

Travis had just been born the month before and was in the hospital recovering from his first open heart surgery. I remember studying his story trying to see exactly what we were about to face. It was scary but there was also hope. I saw a baby not just a terminally sick child but a baby who was recovering and fighting. I found hope. I remember fearing the post surgery pictures thinking how can I watch my baby go through this but Travis did get through it and he did get to go home. He had bumps in the road just like most hypoplasts but I remember getting strength from his parents words and for that I will always be grateful.

Showing love for Travis

His mother Nicole once told me that this world is so hard watching so many children pass away. Now it is her that I am watching grieve and grieving for. I wish I could take that pain away. We all know that our children are "Fragile" but you never expect it to be your child or a child that you are close to. I never met Travis but my life was touched by his. I am blessed to be able to know his mother and consider her not only a friend but a sister. I am blessed to have been able to watch him grow into such a beautiful little boy, to see his smile and hear his laugh.

Nicole and Roger are amazing parents. Even in their grief they did the most selfless act possible and donated his organs so that he may give life to another child in need. The family requests that those who loved Travis please consider organ donation, the greatest gift of life.

A Celebration of Life will be held on March 6, 2011.
Donations can be made to the family at teamtravis.info, HeartSisters.blogspot.com,
or the Children’s Heart Foundation

Fly high with the angels beautiful boy. You will never be forgotten.

Video by Mom2Lo

CHD Awareness 2011

2011-02-13T20:24:00.005-05:00

CHD Awareness week is coming to an end tomorrow...

but don't worry, I intend on spreading awareness to everyone I know 365 days a year! Our children need us to be their voice. Please help me in educating all of your friends and family about Congenital Heart Defects and lets help find a cure for this silent killer. Its simple. Just let people know that 1 in 100 babies are born with a CHD.

Awareness=Funding. Funding=HOPE!

We love you baby Jacob. I will never stop fighting for you!

AWARENESS VIDEOS 2011.
Please take a moment to watch these videos and learn about the #1 birth defect!

Fired up about CHD Awareness!

2011-02-09T18:33:00.004-05:00

Amy Bennett is an amazing heart mom that I have been blessed to have in my life. She recently put a post on her blog which put into words exactly how so many of us are feeling. This post puts into perspective why we fight so hard for awareness for our kids. I had to share it with everyone. Thank you Amy for writing this amazing plea for awareness!

Amy and her beautiful heart warrior Bodie

First... here is a little bit about Amy's son Bodie:

Bodie was born on February 16, 2010 having been prenatally diagnosed with HLHS. All of Bodie’s surgeries have been done at Children’s Hospital Los Angeles by Dr. Vaughn Starnes. Bodie had his Norwood at 5 days old, a shunt revision and pacemaker placement at 2 months old, and his bi-directional Glenn at 7 months old. Bodie spent 5 weeks in the hospital after his Norwood, 11½ weeks after his shunt revision due to hospital acquired infections and only 5 days after his Glenn. Despite his incredibly rough start, spending 4½ of the first 5 months of his life in the hospital, he has truly defied the odds and is now doing amazingly well. He looks and acts just like any other baby – he is an absolute joy for us. He continues to inspire us and we are grateful every day that God chose to bless us with Bodie.

Bodie Bennett
hopeforbabybennett.blogspot.com

Why am I fired up about CHD awareness
by Amy Bennett

I know a lot of you reading this are probably wondering "why is Amy STILL going on about CHD awareness and research? I mean, Bodie had a horrible start, but he's doing great now. Why can't she just let it rest and get on with her life?" (it's ok if you're thinking this - I'm sure you're not the only one)

Here's why...

I cry out for CHD research because my son's life depends on advances in medical technology. Currently, 75% of HLHS kids will make it to the age of FIVE (and that's the most positive statistic I've read - other stats say it's closer to 60 or 65%). How would you feel if you looked at your baby, knowing those odds? Wouldn't you fight with everything you had to improve those odds? Wouldn't you pour your heart and soul into asking everyone you knew to pay attention to CHD's and fund CHD research?

I cry out for CHD research because my son will never be healed. He will always have a CHD. His BEST case scenario is at least 1 more open heart surgery and pacemaker maintenance for the rest of his life. He will always either have a half a functioning heart (the half that was never intended to pump blood to the body, by the way) that's been rewired to work as a whole heart the best it can. Or he'll have someone else's heart beating inside his body. At the moment, those are our only options. If and when the day comes that he needs a transplant, it will bring a whole host of issues, including forever worrying about rejection and the possibility of future transplants down the road. He will always have exercise limitations of some sort. The extent of those limitations will be up to his heart, his lungs and his body, but at the very least, we know that he likely won't be permitted to play contact sports.

I cry out for CHD research because, when my son is a teenager (God willing, he will live that long), instead of assuming he will live forever like most teens do, he'll have to face his own mortality at the same time as he's growing into an adult. How do you do that? I don't know. The oldest people with his condition are in their twenties and there's only a handful of them. Dusk and I struggle with how we'll help Bodie at that point - we know what it's like to raise a child with a "questionable" life expectancy, but we can't know what it's like to be the one actually living with that questionable life expectancy. How do you find a spouse who loves you in spite of a questionable future? Of course, no one is guaranteed a specific future, but it's just human nature to take our best odds, right? Don't get me wrong: we will do EVERYTHING in our power to raise our son to live a normal life, and we have every reason to believe he will fall on the favorable side of these odds, that he'll lead a happy, normal life. We will teach him about God's plan for him, and encourage Bodie to use his journey how he feels called to use it. And so I shove these worries to the back of my mind...but the realities are still there.

I cry out for CHD research because it's not just about MY son. Truly, Bodie is doing incredible right now. But far too many babies are lost every year to CHD's. CHD's are the #1 birth defect and the #1 cause of infant death before the age of 1. 4,000 babies will not live to see their 1st birthday from CHD's alone this year. CHD's can happen to anyone. Yes, we have a history of heart issues on Dusk's side of the family. But the fact is, I have met more families affected by CHD's with absolutely no cardiac family history than I have met with a cardiac family history. Cardiac babies can be born to healthy parents. Parents who have NO inkling what a CHD even is.

I cry out for CHD research because, like so many CHD's, no one knows what causes HLHS. How the heck are they supposed to figure out how best to treat it if they can't even figure out what causes it? I see so much money going to pediatric cancer research, and cancer is horrible, don't get me wrong (my mom is a breast and kidney cancer survivor, so believe me, I am all about cancer research as well), but CHD's kill almost twice as many babies every year as all pediatric cancers combined, yet pediatric cancer gets 5x the funding of CHD's? What the what??? It doesn't make any sense.

Most of all, I cry out for CHD research, because treatment for CHD's has come SO FAR in the past 20 years. Praise God that my son was born in 2010, not 1980 or 1970. But in 2010. A time when we can now say 75% of kids with his defect make it to the age of 5. He is truly on the cutting edge of medical technology. And I am so grateful for that. But I am greedy. I'm his mother. He's my son. I want more for him. I want the statistic to be 100%. I want to rest in the blessed assurance of knowing my son has a really great chance of making it to adulthood and living a normal life. And the more money that goes to CHD research, the greater chance we have of that happening.

So why am I so fired up about CHD awareness? I can't help it. It's in my blood now. I hope maybe it'll be in yours a little bit, too - and you'll be inspired to make a donation to the Children's Heart Foundation, one of the few organizations that gives a substantial amount of money to CHD research!

Jacob Update!

2011-02-07T22:13:00.011-05:00

With it being heart month I have been posting a lot about CHD awareness and have not given you all your Jake fix lately! There is so much to share. Jake seems to be growing up so fast lately and hitting so many milestones.

Jake's last cardiology appointment went very well. He is doing great and doesn't need to go back for 3 months! That is huge considering when we first got home from Jake's first surgery he was going weekly. He is still in the 50th percentile for his weight. He weighs almost 21 pounds! Go Jake Go!

We will be going to Cincinnati Children's Hospital on March 7th and 8th for Jake to get his scopes. They will be looking at his upper airway to see if his vocal cords are paralyzed and hopefully find more information about his unique breathing. They will also be doing a heart echo while he is sedated and may be removing his skin tag that is on his ear. I am very nervous about this trip but also very excited to hopefully get some answers and see where we go from here. I will be sure to blog once we get home and let everyone know what we found out.

FEEDING/SPEECH

The biggest news is we have not used Jacob's g-tube for feeding in weeks! Jake was taking so much by bottle that his doctors and I discussed just letting him take what he wanted and not pushing the rest. Jake has done so amazingly well with this. He usually takes 3 to 4 eight ounce bottles a day and has no problems chugging it down. Since we are no longer pushing formula all of the time he is also taking 3 containers of baby food a day and snacks. You would never know this child ever had any feeding issues in the past. He LOVES to eat.

I can't tell you how unbelievably good it feels to not have a forced feeding schedule. To be able to just feed him when he is hungry and let him decide when he is full. To have some normalcy. Jake is much happier as well. No more sore skin around the tube site or feeling too full. Thank you GOD!

Jake is also eating snacks without gagging. It seems like yesterday he would gag when I fed him Stage 2 foods and now he is eating cheese puffs, cheerios and even cookies without a problem. Boy does he love them! I have to watch him though because he will try to shove a whole handful in his mouth at once.

Best buds eating snacks and watching Toy Story 2

I do still use the tube for his Prevacid right now because I have been warned by his pharmacist that it tastes very bad. I am picking up a new prescription tomorrow which will have flavoring and then I hope to give him everything orally.

As for when the tube comes out, we don't know. Usually they leave it in for at least 6 months after it is no longer needed just in case. Taking it out is easy, its like taking an earing out and letting the hole close up. However if you need to put it back in that requires surgery. I am hoping to have some more answers after we get his scopes done in a few weeks. They should know more about his vocal cords and upper airway which might affect the decision to take it out or not.

MILESTONES GALORE!

Jake is just doing so much these days. He loves to imitate us. He is clapping, waving and his new favorite trick is to put his hand in his mouth and make his voice vibrate. It's easier to show you what I am talking about...

Its so fun watching Jake learn. He watches us all so closely. His favorite game is playing peek-a-boo. I don't think he could ever get enough. He is learning what all of the functions on his toys do. And just like his brother he loves trying to get the computer. If he sees it he will roll right over to it and start hitting the keys. He loves trying to play with anything Aidan is playing with. Aidan doesn't like that so much. Jake is always trying to take Aidan's toys and Aidan is really good about it. He just looks at me and says "Mommy Jakie is teething on my toys" lol. Jake puts every thing in his mouth so Aidan says he is teething on them.

Jake's crawling skills have really improved as well. He knows he can get where he needs to go by rolling around and he is super fast! I look away for a second and he is across the room. Lately he has been pushing up on his knees with his belly off of the floor and trying to scoot forward. He moves by teetering and lunging forward. It takes him more time but he is crawling!

So to recap.... we are clapping, waving, blabbering, crawling and TUBE FREE!

LITTLE STAR
Jake has also been quite busy raising awareness. Jake's CHD Awareness news cast will be airing on WCHS8/FOX11 on February 28th. Be sure to tune in and see Jacob's first TV interview. I will post the newscast on here when I get a copy of it. I am very excited to see how it turned out.

Jake's story was also was published in the local newspaper in the Go Red section of The Charleston Gazette and the Charleston Daily mail.

Here is the text from the article:

Life as a heart mom
By Kathy Baker

My husband and I went into my 20-week ultrasound excited to find out if we were having a boy or a girl; we left not knowing if our baby would survive. Our son, Jacob, was diagnosed with a severe congenital heart defect called Hypoplastic Left Heart Syndrome. The left side of his heart did not form. He only had half of a heart. We were told we had to decide to either terminate the pregnancy, have the baby and hold him until he passed away or choose for him to have a series of three open heart surgeries, the first of which would take place a few days after his birth. We chose to fight for our son and I thank God every day for that decision.

We traveled to Children’s Hospital of Philadelphia, where Jacob would be born in one of the top hypoplast centers in the country. Jacob had a very rough start. The first time I saw him, he was on a ventilator, and two hours after he was born, an extra piece of tissue in his heart collapsed over the only opening the blood had to travel through in his heart. He crashed and we almost lost him. The doctors rushed him into the catheterization lab and re-established blood flow. Jacob was very sick and no one knew if he would survive surgery. I held my sweet baby for the first time when he was nine days old. He was covered with wires and was about to have his first open heart surgery.

Thankfully, Jacob not only survived his surgery but he continued to grow stronger.

We were finally able to take him home when he was eight weeks old.

At four months of age we returned to Philadelphia for his second open heart surgery. Jake amazed us all and was home just six days later.

Jake continues to have rapid breathing due to the restriction in his lungs at birth. We will be going to Cincinnati Children’s Hospital in a few months to assess his airway. Jake continues to stun his doctors with his constant progress. He weighs more than kids without a cardiac condition. He is developing normally and enjoying life.

Life as a heart mom is not easy. There was a time when I was giving him eight different medications a day, some multiple times a day. You constantly worry, is he too blue? Is he sweating? Does he look puffy? I had to monitor his oxygen saturations closely since they are lower for a baby with his heart defect. He was on oxygen and a feeding pump. He also has a g-tube due to the strenuous work out on his heart from oral feeds. In a moment, I went from a pregnant mom excited to find out the sex of her baby to a fulltime nurse. I may not have chosen this life, but I can say, without a doubt, that I am proud to be a heart mom.

Jacob has taught me so much about life and what really matters. He has also taught me the importance of spreading CHD awareness.

One in 100 babies are born with a CHD. Four thousand babies each year won’t make it to see their first birthday.

Congenital Heart Defects are the #1 birth defect and the #1 cause for death from a birth defect. Yet it is underfunded.

Twice as many babies die from CHDs as all of the pediatric cancers combined, yet pediatric cancer gets five times the funding. I never even knew what a CHD was until I had Jacob. I feel like I owe it to him and to all of the other children to be their voice. Thanks to groups like the American Heart Association, we can share our stories and spread awareness and hope. Thirty years ago, HLHS proved fatal 100 percent of the time. Parents were told to take their baby home to die.

Today, experienced hypoplast centers are seeing 93 percent success rates.

With awareness, funding and medical advancements, I can only imagine what we can do for CHD children in another 30 years.

Jacob is a pioneer in this field. The doctors feel that children with HLHS may one day need heart transplants. We have learned that each day is a gift and we live life one day at a time. I pray that if Jacob, one day, requires a heart transplant that medical advancements will make that easier.

There is so much hope for CHD infants and children.

Jacob shows each of us, every day, that miracles do happen.

Please donate to the American Heart Association and help us fight heart disease, foster hope and build a future for hundreds of thousands of children.

Learn more about Jacob at jacobsspecialheart.blogspot.com

Thank you as always for all of the prayers for Jacob. Please keep them coming as we head to Cincinnati in a few weeks. Also please continue to help spread awareness for Congenital Heart Defects. Jake and all of the other thousands of children need us. Thank you for helping us make a difference!

Love,

The Bakers

CHD Awareness Week

2011-02-06T21:54:00.012-05:00

CHD awareness week is the 7th through the 14th of February. Please join me in spreading awareness for the #1 birth defect.

I will be posting CHD videos in the next week. These videos will be hard to watch but please take the time to watch them. Some images may be sad but they are so full of hope. Our children need you to see these images so everyone will know how serious this is and why we need to raise awareness. We can make a difference, the more awareness that is spread the more funding for research.

Our children are such fighters and we owe it to them to be their voice. I plan on fighting for awareness until every person I meet knows what a CHD is. Will you help me?