Jacob's Story

http://jacobryansheart.blogspot.com/ 
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This is the story of our miracle baby,  Jacob Roth



St. Patrick’s Day was Jacob’s lucky Day. Jacob has been released from the Hospital. Jacob is week and full of medications; however, his feet are moving and he is on the go. I wish you could have seen Jacob realizing, not only could he walk, he can run. The irony is Jacob came home on St. Patrick’s Day after surgery number two as well. Jacob was so excited to come home. We arrived to a hero’s welcome. Our friends and family had decorated the house and left Jacob of few big surprises. The mailbox was full of cards and most of all everyone’s prayers have been answered. Jacob was so excited we had to calm him down. He wanted to play and roll around in the floor.

I can not stress this enough, Jacob is NOT ready to play and NOT ready to see all his friends yet. He can not get sick and has to be isolated from the world for a few more weeks. He has to have blood work almost daily now at CAMC. He is on a list of medications that would make your head spin. We will also be making several follow up trips back to Cincinnati in the next few weeks. We love you guys and miss everyone so much, but please give us some time to adjust. In many ways it will be harder to deal with things over the next few weeks than it was at the hospital.

I can not thank you enough for the love and prayers you have sent our family. It’s humbling to have felt so much love. My God bless you and all the heart babies.
 

03-16-11
Late last night, Jacob continued to complain about his belly. He was feeling more active but his belly/side hurt. His right side is getting bigger and harder. I asked his nurse what she thought and decided to bring a doctor in to look at it. By 1am this morning we were back in radiology to have more x-rays. It could be poop that got stuck but it looks more like a backed up liver from the Fontan. At 2:30am Jacob woke again crying “Rub my Tummy, daddy … rub it”. The nurse gave him some Tylenol and informed me of the test results. They doctors defiantly see something in the X-ray. At 7:30am during rounds they addressed the liver issue. It is backing up blood. I could see the large mass on their computer screens. Now that his inferior Vena Cava has been removed from the heart and attached strait to the lung it’s easier for blood to travel through it. Faster blood flow is good; however, his liver is not ready for the excess traffic if you will. Blood is pooling behind his liver and the liver itself is swollen greatly. His liver now extends several inches past his ribcage. It seems to hurt the most at night during his feeding through the feeding tube. The solution is a drug called Enalapril that will shrink/tighten his veins within the lungs. This will slow how much blood is traveling to and through his liver.

I can not stress this enough, Jacob is NOT ready to play and NOT ready to see all his friends yet. He can not get sick and has to be isolated from the world for a few more weeks. He has to have blood work almost daily now at CAMC. He is on a list of medications that would make your head spin. We will also be making several follow up trips back to Cincinnati in the next few weeks. We love you guys and miss everyone so much, but please give us some time to adjust. In many ways it will be harder to deal with things over the next few weeks than it was at the hospital.

I can not thank you enough for the love and prayers you have sent our family. It’s humbling to have felt so much love. My God bless you and all the heart babies.
 

I can not stress this enough, Jacob is NOT ready to play and NOT ready to see all his friends yet. He can not get sick and has to be isolated from the world for a few more weeks. He has to have blood work almost daily now at CAMC. He is on a list of medications that would make your head spin. We will also be making several follow up trips back to Cincinnati in the next few weeks. We love you guys and miss everyone so much, but please give us some time to adjust. In many ways it will be harder to deal with things over the next few weeks than it was at the hospital.

I can not thank you enough for the love and prayers you have sent our family. It’s humbling to have felt so much love. My God bless you and all the heart babies.

03-17-11 UPDATE
Liver under control. May go home by Friday. Should be sick by Monday

On a positive note Jacob had a better day today. He made two trips back to the playroom, watched two movies, and played hide and seek under his covers with a new nurse. Yes he’s a flirt...
.

03-10-11

What started off as an awful day for Jacob turned into a wonderful day for everyone? Jacob started off a very painful morning with a sick belly. By 6am Jacob was throwing up everywhere. All of his bandages had to be changed and the tears of pain broke my heart. If it hurts so bad to cough, I can only imagine what it felt like to hurl.I just had an amazing talk with one of Jacob’s doctors. After rounds he came to double check everything. He asked about Jacob’s spirits. I told him they where great. It was the first time in days I could truthfully say that. Jacob is starting to eat again and today they removed the IV in his foot; however, they replaced one in his arm that had closed. With his small veins the arms don’t work as well as the feet; however, we are getting his feet clear so he can play. Yes, Play! Jacob has a lot of fluid building up in his chest. The drainage tubes are still removing lots of fluid from surgery. They want Jacob up and moving to keep his lungs clear. When Jacob realized he could go to the playroom, he didn’t seem to mind (as much) for them to mess with the needles. His doctor continued to tell me “remarkable improvement”. The last few days have been rough. His doctor told me, “We get him up moving around, get these drainage tubes out of here, and you guys will done”. As I stood there I could not get the word “done” out of my head. That’s a word I never thought I would hear. Before Jacob was even born we knew he would have at least three major open heart surgeries. Now we are just weeks away from being done. No more surgeries, no more pick lines, no more IV’s, no more crying until you can’t breathe. We are almost done. Soon Jacob will be a normal little boy, with a cool scar.

Late last night, Jacob continued to complain about his belly. He was feeling more active but his belly/side hurt. His right side is getting bigger and harder. I asked his nurse what she thought and decided to bring a doctor in to look at it. By 1am this morning we were back in radiology to have more x-rays. It could be poop that got stuck but it looks more like a backed up liver from the Fontan. At 2:30am Jacob woke again crying “Rub my Tummy, daddy … rub it”. The nurse gave him some Tylenol and informed me of the test results. They doctors defiantly see something in the X-ray. At 7:30am during rounds they addressed the liver issue. It is backing up blood. I could see the large mass on their computer screens. Now that his inferior Vena Cava has been removed from the heart and attached strait to the lung it’s easier for blood to travel through it. Faster blood flow is good; however, his liver is not ready for the excess traffic if you will. Blood is pooling behind his liver and the liver itself is swollen greatly. His liver now extends several inches past his ribcage. It seems to hurt the most at night during his feeding through the feeding tube. The solution is a drug called Enalapril that will shrink/tighten his veins within the lungs. This will slow how much blood is traveling to and through his liver.

On a positive note Jacob had a better day today. He made two trips back to the playroom, watched two movies, and played hide and seek under his covers with a new nurse. Yes he’s a flirt...

03-15.11

03/15/11

Finally a good day! My wife sent me to bed last night. I got sleep and a shower. I feel like a new man and so does Jacob. He started off the day sore and yes with more blood work. His day improved with leaps and bounds. He had another eco this morning. That meant he could not eat or drink anything until 11am. After the eco, he ate a big breakfast. Later we were on his cool car/wheelchair and tearing up the hallways off to the playroom. That also meant that yesterday’s 103 degree temperature was gone. He has to pass inspection and receive a health pass before we get to go play. This was the first time we were not dragging his chest tubes around in the playroom. He pooped himself out after a solid hour of play time. Jacob is still complaining that his belly and side hurt; however, his spirits have returned and he is feeling better.

This evening Jacob ate a good late lunch and then returned to the playroom. The playroom really gets Jacob up and moving. The junk in his chest seems to magically disappear after play time. “Playtime everyday keeps pneumonia away”. We had to leave a little early because Jacob had a major blowout. Again good news since the digestive system can greatly be affected by his surgery. Jacob even had his first bath today. It was a bed bath but it was wonderful. We tried to explain that having a hot nurse give you a sponge bath was a good thing. Other than his belly and right side still hurting, Jacob had a great day and he smells good too.

03-12-11 Morning


03-12-11 Afternoon

Just when I thought this day couldn’t get any better, Jacob got to go to the playroom. He was so excited. We thought he would continue to be afraid to move, we were so wrong. They brought Jacob a hot rod go cart that doubled for a wheel chair. He could hook all his monitors and drainage tubes to the car and then drive it up and down the hall with a little help from mom & dad. His legs did not work to good a first, but he was ready to go. We raced to the playroom with everyone armed with cameras. Jacob was on his first of many trips to the playroom. He played with Dinosaurs and trucks, fished in the magnet fishing pond, and most of all forgot that he just had surgery. He played so hard he worked up an appetite and even his first bowl movement in almost seven days. After all the excitement today it was fitting that today was the day they removed his chest bandages. He still has his drainage tubes, but now you can see the damage, or should I say repair.
 

-3-12-11
Jacob’s chest continues to drain. He is doing well; however, many of the warnings his doctor told us about seem to be happening. Concerns are now with his digestive system. With all the changes in pressure and Oxygen levels, often the body needs some time to adjust. Jacob is having trouble keeping food down; this includes food from his feeding tube. He’s afraid to eat since every time he tries, he throws it back up. Doctors are giving him things to help him get the food moving. Yes we want to change a poopie diaper.

Although it was not planned, Michelle got to hold Jacob today. He vomited his overnight feeding early this morning. His bed and even bandages all had to be changed. As his bedding was being changed, Michelle got to hold him in the rocking chair next to his bed. Jacob was still hooked to many pieces of equipment and she could not squeeze as hard as she would like, but it was wonderful. Jacob snuggled his nose into her chest and that sparkle returned to my wife’s eyes. Late in the day after trying to feed Jacob with no luck I tried my dad trick. Jacob and I have a thing where we often sit in the floor with an apple and knife. I cut off slices of apple and he steels them from me. I’m glad no one walked into the room since all I could find was a hunting knife from the car, but it worked. I sat next to Jacob's bed cutting my apple in slices. Before you knew it Jacob had an IV in one hand and an apple in another. He ate four or five slices and so far so good.

03-11-11

 

The good news is Jacob’s stats look great. His O2’s are up to 95 without any additional oxygen. Just days ago we celebrated if we kept them above 80. Jacob is also starting to eat a little on his own. They removed the arterial line stitched in his arm today. Now Jacob can scratch his nose and hold his apple juice all by him self. The greatest news is that Jacob was released from the ICU to step-down this afternoon. We are now in A6 Central. Yes, Jeff may be right. Jacob does want to come home as fast as possible. Last night after being such a tough dude all week, Jacob looked up at mommy and said “I want to go home”. The tears rolled down his little cheeks into big puddles on his pillow. We so want to pick him up and squeeze him tight; however, it’s still too soon. Jacob will still smile when you ask him to, but I think he’s just about had enough of this place. The nurses love him for being so polite. He’ll actually say “thank you” to them even though he doesn’t want them to do anything more. He’ll also say “Cheese” every time they bring in the fire truck X-ray machine to take his picture of course. Moving out of ICU is a little scary since his sill has all his drainage tubes still in; however; it’s one step closer to home. If all goes well it is possible that we could go home in a week or so.
 


03-09-11

One of Jacob’s favorite movies is The Incredible. He loves the theme music and loves to make his Superhero pose. He’ll spread his legs; stick one arm up in the air with the other angled on his hip, singing “dun, dun, DUNNN”!! Today, two of the RN’s were working on him and bragging about how good he was. One even said “I wish all the patients would be this good”. Out of nowhere Jacob says loudly “I’m a Superhero”. There is no better way for me to describe to you how good and strong this little boy has been. Our superhero is trying harder and complaining less than any adult ever would. He is so strong and we’re so proud of him.

The reality of the last few days is now kicking in. It’s easy for everyone to take a big breath of relief after the surgery is over; however, the real work for Jacob has just begun. Everything is a challenge. Earlier today something was bothering him more than normal. The RN and I tried to figure it out for several minutes. Finally we realized his nose was itching. You forget he can’t even scratch his nose. Coughing is a huge hurdle for him. He has a lot of fluid that has to come out. They need him to cough and blow; however, the pain is unreal. Every time he tries, tears of pain run down his face. He’ll hug his teddy bear for comfort and support but there is little that can be done. They brought him a toy wind wheel and even bubbles to blow.

Many of his meds have been removed. Some of the chest wires have also been removed including his intracardiac lines & pacer wires. He still has two large drainage tubes on each side of his ribcage. These are constantly draining fluids from the surgery. They tell us it will be a while before those could be removed. One of the lines they removed today has sprung a leak. Fluids have been pouring out of that small hole and causing a mess. His bed has had to be changed from this one small leak, just inches away from the main drain lines. When you see Jacob smile it’s hard to grasp what his little body looks like under the sheets. One of the best moments of the day was Jacob asking for pancakes. He wants to eat. He begged and begged for pancakes this morning until they let him try solid foods. The good news is he got his pancakes; the bad news is it hurt too much to eat. He only got one bite down before he cried no more. Lunch was almost the same. Dinner on the other hand included ice cream. Ice cream with a side of oxycodone won that battle. He ate almost the whole cup.

The highlight of the day came when Jacob got to talk to “bubby”, his big brother. Today was the first day that Jacob was well enough to talk on the phone. I don’t know who needed to hear each others voice more. Jacob kept saying “I love you Bubby”. I could hear Conner’s voice cracking as he realized his little brother was Ok. They talked for several minutes before the pain meds kicked back in. Conner loves his little brother and misses him greatly. Thanks to my mom Connie and my wife’s mother Bertha, we where also able to get a little much needed sleep this afternoon. The granny squad is taking over afternoons in the ICU. I can not tell you how important it is to have great family support both emotionally and physically. Our friends, our Church, our family, and all the wonderful people praying for us have been so wonderful. Thanks for laughing and crying with us. We love you all.
 



03/08/10

Jacob did it!!! How do I thank you for all the prayers? How do I begin to tell you about this day? All I can say is God is great. Jacob is now resting in ICU. He came off the vent late in the day much faster than I expected. He didn’t like it and kept fighting it all evening until they said enough. Once again Jacob is begging for apple juice. The water sponge across the lips every so often is not cutting it for Jacob. I know he’s thinking “what’s a guy got to do to get a drink around here”.

We had to stop all food & drinks the night before surgery. At 6am Jacob was begging prep. My wife is the strongest person I know. She’s an amazing mother who’s been through more than anyone should ever know; however, she has to do this while battling anxieties attacks. She tried so hard but could not avoid one of the worst I’ve ever seen the minute the elevator door opened for check in. One of the hardest things to deal with as a parent is the walk to the OR. To carry your son down that long hallway reassuring them is will be ok when you yourself are scarred beyond words. This time was different. Jacob carried us. As my wife was trembling being pushed in a wheelchair, Jacob keep reaching out of my arms to pat mommy. He keeps saying ‘It will be ok mommy”. When we got to the operating room door we could see all the equipment. This was the seen when Jacob usually screams as he’s separated from us, instead Jacob patted mommy again and said in that little two year old voice “It’s ok there’re going to check your blood pressure.”

Every hour we would have updates, and ever hour we would get more positive news. Each time our team would give thanks and pray. After six hours of surgery we got the best news ever. “He did well”. We cried and cried. I observed some others people crying as they watch us cry and pray together. Shortly after, we met with his surgeon who explained the ordeal. It would still be several hours until we could see our son. Despite doing this twice before, it’s still overwhelming to walk into the ICU and see your little one hooked up to everything. All things considered, Jacob looked great. He would begin to wake up around 7pm. The wake up process was rough. Jacob was scared and most of all he did not like the vent. What ever this thing was had to go. After the vent was removed Jacob had two very important things to say. “I love you mommy” and of course “Apple Juice”.


8am - 3/8/11
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.

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 with his second at seven 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

 
One of the hardest things today was not letting him eat or drink. He begged & begged for apple juice all morning. The first thing he said in recovery was “apple juice” in the most pathetic-desperate voice I’ve ever heard. Let’s just say he got his hard earned apple juice. It was so good to hear his little voice again. I don’t think anyone in the recovery unit will forget the second thing he said. Just shortly after getting his juice and still very groggy from the drugs, we heard a rumble followed by Jacob saying, “I TOOTED!!!” That’s my boy.

Jacob will have the rest of his test Monday with the BIG surgery Tuesday morning at 7:30 sharp. He is first in Tuesday. This procedure will be between 6-8 hours. Wish us luck and thanks again for the prayers and concerns.  


 

3/2/11 update
Just wanted to give everyone an update on Jacob. The trip to Cincinnati Monday went well despite leaving during a tornado warning. Jacob spent Tuesday having test, x-rays, blood work, EKG, Eco's, all the good stuff they want to do before surgery. His doctor was delighted with how well he was doing and said he was at the perfect size for the Fontan operation. We met with the Heart Cath department to prepare for his heart cath Wednesday morning. The cath is scheduled for 10am.

 

Late in the day, we had a surprise in our schedule. Jacob was supposed to have his actual surgery Thursday. He would recuperate from the Wednesday heart cath and then be taken from that room to surgery Thursday. The hospital has just received two more babies that have to have emergency heart surgery. As a result, Jacob's actual surgery has been moved from Thursday, to Tuesday 3/8. Although the delay is frustrating it's also a reminder of how far Jacob has come. It wasn't too long ago that our Jacob was the Emergency. My wife and I know all too well what those parents are about to go thru. Please pray for their needs as well. Jacob must have this surgery to survive; however, he still has a few more months before he would be critical again. A few more days are not going to make a big difference for us; however, it will save these babies the same way they saved our sons life. The extra days may even make it possible to put a dent in all the junk food our friends & co-workers sent with us. Thanks again for all the prayers.

  


In March, Jacob heads back to Cincinnati for his 3rd heart surgery. Yes - Ed & Michelle
and Jacob's big brother Conner, ask for your prayers and we want to keep you posted on his progress.
Plus Jacob's journey will educate you on Congenital Heart Defects. Please pray for this
wonderful family and this incredible little man. By sharing their experiences and providing information,
Ed & Michelle hope to raise public awareness about conditions that affect approximately
40,000 babies each year in the United States alone.

Jacob, along with his Mom, Michelle and Ed Roberts, pose with WV
Governor, Earl Ray Tomblin. Governor Tomblin has declared the week
of February 7 -14, 2011 as Congenital Heart Defect Awareness Week.


Jacob Ryan Roth was born on July 6, 2008 with a major Congenital Heart Defect called Tricuspid Atresia. Simply put, the right side of Jacob’s heart is missing. The valve and lower chamber never formed. Jacob would only survive for a few short weeks before his CHD would overtake his little body. To treat Jacob’s CHD, a series of three operations would take place within the first few years of his life.


On July 30, 2008 Jacob endured the first of three procedures. At three weeks old weighing less than eight pounds, Jacob had his first open heart surgery and received a PA Band. This procedure would protect his lung function and buy a few more months of growth before needing his next surgery.


Jacob’s Bi-Directional Glenn and Atrial Septectomy took place March 13th, 2009. Jacob was eight months old. Blood enters your heart from two locations. One of them has now been removed and attached directly to blood flow entering the lungs.


Like any two year old Jacob is full of life. He loves his Mom, Dad, and big brother Conner who he calls “Bubby”. Life after surgery has been wonderful; however, Jacob’s time is almost up. His body has almost out grown the last procedure and his O2 levels are dangerously low. We knew this day would soon arrive. Jacob’s third and hopefully final surgery called the Fontan is scheduled for March 3, 2011. When this surgery is finished, Jacob will only have half a heart. All right side functions will no longer exist. Blood flow will go directly to the lungs bypassing the heart. Only the left side of his heart will exist, pumping blood from his lungs to his body.


My family cannot thank you enough for all your thoughts & prayers. Jacob has come a very long way but still has many obstacles to overcome. Jacob will have a 1 in 5 chance of still needing a heart transplant in his late teens. Thousands of babies are born with CHD’s. Please keep all Heart Babies and their families in your prayers. They will need them.