Wednesday, April 20, 2011

The dreaded first cold...

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.

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.

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

Saturday, April 16, 2011

Help us fight the #1 birth defect!

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!

  • 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


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!)

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.

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!

Friday, April 15, 2011

Aidan's Birthday Cake

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

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.

Tuesday, April 5, 2011

Baking a difference!

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 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