Praying for good news

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

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

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!

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!

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

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?

CHD WARRIORS
Video by Alexia Boesen
(Jake is at the end!)