Long overdue update!

Well I guess I need to apologize for not updating this blog sooner but we have been quite busy with the Heart Walk and raising funds for Saturdays walk. Jacob has also been keeping us busy! He is always on the go and never tires out which is good for him and draining for us.......LOL. In any case our super hero is doing fantastic!


Jacob has been very busy as well. He and Jacob Baker are the Co-Chairs for this years AHA Start Heart Walk. They have been on billboards all over the Charleston area, TV commercials, news stories, and radio spots. These boys are both walking miracles and we need to thank organizations like the AHA for their survival. If not for donations to the AHA which funds research our boys may not be here today.

See what our little guys have been up to!

Our boys at University of Charleston shooting their commercial and photo shoot

The official Co-Chairs of the 2011 Greater Charleston START! Heart Walk

Our cool logo designed by Jacob Bakers mom Kathy!

Below is the link to the litte TV interview they did for our boys

http://www.wchstv.com/newsroom/eyewitness/110912_6599.shtml

I also need to post the video of Jacob's ball delivery at the Great American Ball Park in Cincinnati.  Most of you have probably seen it on Facebook, but I will post it on here as well, eventually.  Also waiting on a DVD of the commercial we cut for the AHA this year as well.  We will get all that posted as soon as we receive it! 

Thank you so much for all of your support! 

Pulse Ox West Virginia (Corbin's Law)

I recently had the pleasure to meet and become friends with Ruth Caruthers, a fellow heart mom.  Eventhough her story and mind differ dramatically we share a common goal; to get pulse ox testing mandated in the state of West Virginia.  Kathy Baker, myself and Ruth are working on getting a bill put before Legistlature to make this a law and we are meeting with the AHA today to get started.

Ruth lost her son Corbin early this year to multiple heart defects caused by Williams Syndrome.  Had her son had been monitored by pulse ox when he was in the hospital after birth the defects most likely would have been caught and his life may have been saved.  Ruth is a very strong woman and I respect her tremedously for what she is doing.

Check out the link below to see Ruth and myself interviewing with WVVA News and please support Pulse Ox screen by signing the petition at the end of this post.

Moms Trying to save lives of CHD infants

Wont you sign it to save the life of a new born?
PULSE OX PETITION

Why I'm Walking for Team Jacob

At 28 weeks into my pregnancy we found out that our baby had "something wrong" with the heart. We had just learned hours earlier that we were having a boy whom we would name Jacob. Excitement turned to fear and uncertainty when I received the phone call later that day. Darkness loomed with thoughts that our baby may not survive the pregnancy let alone surviving after birth. Boy we were wrong!


On July 6th, 2008 Jacob was born at 7lbs 2oz and 19 inches long, and "healthy". We had learned in previous months that Jacob had Tricuspid Atresia. This is condition in which the right side of the heart failed to form.

On July 30th, 2008 he has his first heart surgery (pulmonary artery band) that would allow him to stay awake eat, and grow as needed until he was able to have his second surgery.

His second surgery (bi-directional Glenn/atrial septectomy) was completed on March 13, 2009 and we went home four days later on St. Patrick's Day.

His third surgery (Fontan) was performed on March 8th, 2011 and we again went home on March 17th, St. Patrick's Day.

I walk for my son and to raise awareness for Congenital Heart Defects. I walk because if not for research and funding these procedures may not exist. I walk because my son is a "SURVIVOR" and I want to support him anyway I can. I walk because my son is alive and thriving. I walk because I love my son. I walk because I want every parent and child affected by a CHD to know that there is hope and that they have all the support they may need. I walk because I believe in miracles.

http://jacobryansheart.blogspot.com/

Life is not measured by the number of breaths we take, but by the moments that take our breath away.

Easter/Spring Pictures

Below are some pictures we took for Easter/Spring down in my hometown of Rocky Gap, VA at my moms place.  :)  We love it down there and there's no place like home!



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!

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 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 17th, 2011, 8am



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!

So we have the all clear for visitors as long as they are NOT sick. Jacobs O2 level was 95, which is great considering it was 78-80 before the Fontan. His INR test came back normal, this test is to check to see how the coumadin is working.

On our way out of the office Jacob started doing his super hero pose in front of all the doctors and nurses! They were laughing so hard, they loved it!

Jacob still has to get blood-work every two weeks until the coumadin gets leveled out. After that it will be once a month. No rough housing for another two weeks, but normal boy play doest exclude rough housing. He just can't have anyone sitting on his chest.....duh or take any direct hard blows to the chest. Other than that he is good to go! Guess I need to start posting post-op at home updates now.

Thanks again to everyone for praying for our little super hero!

4-4-11 UPDATE FOR JACOB

Jacob has had a fantastic recovery, and even though it's been almost 6 weeks he still has a long way to go to be completely recovered.  We  have to make sure he doesn't have a direct blow to his chest and also make sure that he is not around anyone that is sick.  Yesterday we ventured outside again since it was so warm (I had a hoodie on him of course) and played some baseball, threw some frisbee and jumped on the trampoline believe it or not.  Below is a short video of the "triumphant jump".

We spent about 3 hours outside playing and he loved it!  We will be going back to Cincinnati on Wednesday (April 6th) for a post-op check up.  Hopefully we will get the all clear and he can go back and visit his buddies and the babysitters.  He really misses them.  Please continue to pray for Jacob as he still has a very long road ahead of him even though the surgeries are finished.  He will fight a life long battle with infection, weight gain, and if something goes wrong possibly another heart surgery which could be a heart transplant.  Right now though he has more energy than he knows what to do with!  Thank you all for the prayers and thoughts for Jacob and our family.

The Roths

3-16-11 Update

Well last night wasn't so good. About midnight daddy told me that Jacob was really complaining about his tummy hurting. His liver is really swollen because of all the readjusting of blood flow. So they took him down for x-rays around 1:30am. They didn't show any obstructions in the intestines but did show that the liver is swelling and blood flow is backing up going into the liver. The liver has now swollen several inches past his rib cage.

They started him on Enalapril to slow the blood flow. It will slow down the flow to the heart and as a result slow down the blood going to the liver so it can adapt. This is one of those things if left unchecked and untreated it can cause liver failure. Just keep praying for him and that his liver will adjust to the new flow of blood. I will update again once we hear from the docs. Thanks for all the prayer and again keep them coming.

Decent Night, Better Morning...

ECHO went perfect. They will not need to sedate him which is good because his tummy growling and we just ordered him breakfast. Ofcourse the first thing he asked for was APPLE JUICE!!!! LOL

When he woke up he was really sweaty as usual so I took some pictures after I sweat styled his hair...LOL

And here are some when Daddy got here this morning to play PEEK 'N' HIDE.....LOL





He is smiling a alot today which makes me feel really good! So now we just wait for echo and blood results for today and take everything as it comes. Still no word on when we are going to get to come home but I'm not in a hurry because I want him to be completely ready since we are so far from Cincinnati. Keep praying because even after we get home we still have risk for infection for quite a while.


Love and Heart Hugs

Michelle, Pete and Superhero, aka Jacob



TUBES OUT AND PARENTS POOPED

Ok, sorry I haven't posted in a while. Its been kind of stressful here the last few days. Jacob didn't have a very good day yesterday, and today didn't start off that great either. He had blood drawn three times today and he is running out of places to stick. He had a fever today of 103.1 (which they said was common in Fontan patients) and they gave him Tordal for that. His fever came down and they came in to remove the chest tubes. They tried the right side first and it wouldn't come out, it was stuck. So they called in his surgeon and he came in to take it out. The left side came out with no issues. It was not very pleasent to watch.

On a good note, the chest tubes are out and only has his feeding tube and IV remaining. We just returned from x-ray where he did totally awesome. He said "CHEESE" when they said to smile........LOL it was hilarious and the technicians loved him. Tomorrow he will have an echo and lets hope they don't have to sedate him for that. They didn't have to for the first one so hopefully he can go 2 for 2. Keep praying as he is afraid to walk as well. He is very unsteady and is scared to stand up, but can you blame him? He has been through a lot in the past three days, not to mention the prior 4 days. But he is indeed a trooper and the prayers are keeping him strong.

On the way to X-RAY



We are worn out from worrying so much but now that the chest tubes are out we can rest a little easier. Now just pray there is no pneumonia in his lungs as he has a lot of fluid and is coughing a lot.







I will update again tomorrow if I don't forget. Funny how all this can make you forget stuff....LOL







With Thanks and LOVE







Michelle, Pete and SUPERHERO (Jacob)

Breakfast anyone?

Jacob's appetite is coming back! He kept all his feeds down lastg night. We ordered breakfast and he ate three bites of egg, half a piece of bacon, three good size bites of apple sauce, one bite of banana, three drinks of orange juice and of course his apple juice. He is sleeping peacefully now. They plan to take off the bandage on his incision and get him up and walking since he started having a congestive cough last night. He still has his chest tubes but they did take out the IV in his foot and had to replace the one in his right hand. The got it on the first stick and were able to draw 4 viles of blood quickly without it clotting. They want him up and walking today so the congestion will break up so he doesn't get pneumonia. Jacob said he wanted to go to the playroom too! He will have to make it with his chest tubes still in but I think he will do fine. Keep on praying because he still has a long way to go, but the prayers that have been prayed are working for sure. THANK YOU GOD!!!!!!

Below are some pictures I took this morning.

Sleeping after breakfast and a new IV

Cards and drawings from Connor, Myles, Lucas, Nikki and Josh (his buddies back home, thanks guys)

Ballons from Aunt Sarah, Uncle Michael, Taylor and Kayleigh (he loves them)

Ballon and teddy bear from WVU Childrens Hospital (thanks everyone)

Woody doll from Gram and Papaw (Pete's Mom and Dad, love you guys)

And again snoozing after all the action this morning

Mommy and Daddy Love you Jacob.  Keep up the good work!  We will always be here for you SUPERHERO!!!!!

3-11-11 update

Sorry I haven't posted an update to the blog since the day of surgery.  I didn't have the link to post from my phone until today.  In any case Jacob has been having some issues holding food down and I think they finally found the meds that will work for him. He vomited twice and it was very painful for him, plus they ended up having to change all of his bandages since they got soaked. 

However this did allow me to hold him for the first time since Monday morning. He did eat some gold fish crackers, a few bites of apple and two small bites of apple sause today.  It got to the point that he was afraid to eat for fear he would throw up again.

This evening he has been nibbling on the gold fish crackers and hasn't stopped drinking apple juice.  The have him on a regular regiment of Miralax, lasix, analapryl, cumidan and zantac.  I am hoping that these will work together to get him eating so they can take out the feeding tube.  He still has his chest tubes as he is still putting out a significant amount of fluid from the chest cavity.  They will be removing the bandages from this incision tomorrow but I'm not sure if the will remove the intracardiac and pacer bandages.  He has been leaking from those as well.

They will be drawing blood tomorrow morning at 4am and I am hoping he will not get so upset that he vomits all his feed up from tonight.  His nurse told me they were going to try and hold off on bloodwork unitl like 8 am to ge give the food time to process through before they get him so upset.  I also asked about a PICC line to get blood and give meds through as this would be alot less painful for him as he wouldn't feel anything when they drew blood and gave meds.  I am waiting to hear in the morning if they decide to do it or not.  I will keep you posted.

He always smiles when we ask him to, and it makes us feel good about everything.  Please keep him in your prayers.

He is back in the OR

They told us it would take an hour to an hour and a half to get the lines started.  They will let us know when the surgeon makes the incision to start getting to the heart.  Been pretty tough this morning, had another anxiety attack when we got here, long story short I ended up in Jacobs bed.  Just pray because it's going to be a long day.  Jacob kept telling me that it would be ok.....so sweet and brave.

A note from Dad

We don't hear alot from Heart Dad's out there so I thought I would post a little something my husband wrote last night.

03/08/11




I wish I could see the world the way my two year old son does. Always smiling, always happy, always looking for someone to play with. Last week after having his heart catherization for his upcoming surgery he didn’t want to leave the hospital. He enjoyed playing in his “Boy Cage” as he called it. It was actually his hospital bed that doubled as a crib and medical tent. He loved to have us lock him in it with the sides fully closed. He kept calling it his boy cage to the nurses who he constantly flirted with. One even made him a sign which read “Jacob’s Boy Cage” after his playful acts. While Jacob played in his boy cage still hooked to heart monitors and IV’s, he would occasionally ask doctors and nurses to sign his baseball. See when Jacob was born he got a baseball and display case. It was intended to put his date of birth and measurements on; however, It became much more than that. Jacob was a heart baby, born missing the right side of his little heart. He had his first open heart surgery at only 7lbs (19 days old) with his second at eight months old. Somewhere along the way his mother and I thought it would be neat to have the doctors sign his baseball, after all they would be responsible for him playing ball. By the time each procedure was over there was not enough room for one more initial. Jacob is now ready for his third and Lord willing final surgery. With this surgery comes a new baseball, only this time he’s proudly asking with his little golden voice, “Will you sign my baseball”?



We had a few days in between the heart cath and actual surgery so they let Jacob out of his “boy cage”. Believe it or not he didn’t want to go. After all the needles and test he didn’t want to leave. He loved all the toys. He loved the doctors and nurses. He loved his own TV in his room, and he loved watching the fish in a big tank just down the hall. He kept saying “I don’t want to go” as we checked out of the hospital. We assured him we would be back and he could play with the fish later.

This morning, later has arrived. We will stop and look at the fish..ies on the way to the surgery ward. Today, Jacob will have his third open heart surgery, only this time he’ll know what’s going on. By now his mother and I are taking the most painful walk of our life. We get to carry our son to the operating room doors where we kiss him goodbye for his 7:30am surgery. Doctors tell us this procedure will take 5-6 hours minimum, followed by several hours in recovery before we can see him. One even explained that it takes longer to cut through all the scar tissue from the past two procedures. That includes the wires that held his little rib cage together from the past two.

Relax; Jacob is a pro at this. He’s already had his little heart stopped twice. The first was when he crashed a few hours after his first surgery in the ICU as his mother and I watched. The second was on the table during surgery #2 when they removed parts of his heart and rearranged others before restarting his heart. Now it’s time for one more pitch. Remember, three strikes and we’re out of here. Good Luck Jacob. Don’t forget your baseball.



Love, Dad

Surgery date moved again.........

The doctors called us as we were about to leave for the day to let us know they had to postpone Jacobs surgery because they had two babies coming in that required emergency surgery.  They had initially wanted to reschedule the surgery for April which would have been impossible for us to do since we have already made arrangements to be gone for March.

They did call us back to let us know that they could get him in for surgery on Tuesday of next week, March 8th.  He will still have to have his heart cath tomorrow at noon, then another chest x-ray.  We will give him a day to recoup and then head home Thursday to wait out the weekend.  We will come back up Sunday as he has blood work scheduled for Monday morning, then surgery Tuesday. 

We will keep everyone updated with any other news we have.

Thanks for all the prayers and support, we love you all.

Pete, Michelle, Jacob and Mamaw

IT'S OFFICIAL

The meeting with the gov. went really well. He talked with us for a little bit and shook Jacobs hand. It was so cute! Below are some pictures they sent us today.

Now we just have to keep spreading the word and keep raising awareness so that these kids have a chance!  Thank you Gov. Tomblin and staff for fitting us into your busy schedule.  We appreciate it from the bottom of our hearts!

Michelle, Pete and Jacob Roth

CHD WEEK hits the Govenors office

On February 11, 2011 Jacob and our family will venture to Governor Tomlin's humble abode.  He will be officially signing the CHD Awareness Proclamation that we submitted to him.  We do this in hopes to raise awareness about CHD's and their affect on families here in West Virginia and around the world. 

CHD's take the lives of more children than all childhood cancers combined so we need to spread awareness and help raise research funds for these illnesses as well. 

Won't you join us in thanking Governor Tomblin for stepping up and proclaiming that February 7th through the 14th is CHD Awareness week in West Virginia and wish us luck at the signing tomorrow.

With love and many blessing
The Roths

Surgery date moved up

We received a call from Cincinnati on Friday that Jacob will have surgery on March 3, not the 4th. So a day earlier.....just one day closer to getting this all over with and getting our super hero home! Continue to pray for Jacob and very painless recovery. Blessings to all Michelle

A Moms Perspective

I saw this poem on another heart site and had to post it........its great and it tell exactly how we heart moms feel at every possible moment.

A mother’s perspective.



by Stephanie Husted






You passed me in the shopping mall...(You read my faded tee)You tapped me on the shoulder...Then asked..."What's a CHD?" I could quote terminology...There's stats that I could give...But I would rather share with you...A mother's perspective.






What is it like to have a child with a CHD?


It’s Lasix, aspirin, Captopril…


It’s wondering…Lord what’s your will?…


It’s monitors and oxygen tanks…


It’s a constant reminder to always give thanks…


It’s feeding tubes, calories, needed weight gain…


It’s the drama of eating…and yes it’s insane!


It’s the first time I held him…(I’d waited so long)


It’s knowing that I need to help him grow strong…


It’s making a hospital home for awhile…


It’s seeing my reward in every smile.


It’s checking his sats as the feeding pump’s beeping…


It’s knowing that there is just no time for sleeping…


It’s caths, x-rays and boo boos to kiss…


It’s normalcy I sometimes miss…


It’s asking do his nails look blue?


It’s cringing inside at what he’s been through.


It’s dozens of calls to his pediatrician…(He knows me by name…I’m a mom on a mission)


It’s winters homebound…and hand sanitizer…


It’s knowing this journey has made me much wiser.


It’s watching him sleeping…his breathing is steady…


It’s surgery day and I’ll never be ready.


It’s handing him over…( I’m still not prepared…)


It’s knowing that his heart must be repaired…


It’s waiting for news on that long stressful day…


It’s …praying…it’s hoping…that he’ll be okay.


It’s the wonderful friends with whom I’ve connected…


It’s the bond that we share…it was so unexpected…


It’s that long faded scar down my child’s small chest…


It’s touching it gently and knowing we’re blessed…


It’s watching him chasing a small butterfly…


It’s the moment I realized I’ve stopped asking why?


It’s the snowflakes that fall on a cold winter’s day…


(They remind me of those who aren’t with us today)


It’s a brave little boy who loved Thomas the train…


Or a special heart bear…or a frog in the rain….


It’s the need to remember we’re all in this plight….


It’s their lives that remind us we still need to fight!


It’s in pushing ahead amidst every sorrow…


It is finding the strength to have hope for tomorrow.

Cardio Visit

Jacob had his final cardiology visit before his suregery today.  His O2 stats were between 81 and 82.  He weighed in at 30lbs 2oz and is 34 inches tall.

 Dr. Garmany was very pleased at how well he is doing.  His function and flow looked great she said.  When we asked her if she thought we were rushing into this last surgery she immediately said "no".  She said that it was better to do it when they are smaller, but when their bodies are ready as if it is done when they are older and in school infection risk would be higher.  So we were happy to hear that.  As for now, we simply wait to drive up to Cincinnati for his echo on March 1 and then wait another 3 days for the surgery.  The waiting game is so hard when it comes to "matters of the heart" if you know what I mean........no pun intended. :)  Well that's about it for now, just keep the prayers coming and we will update you again when we have more news!

Love and blessings
The Roths