Romans Big Heart

Who's blog is this anyway?

2011-07-31T14:56:00.000-04:00

Well, it looks like I just might have to change the name of this blog from Roman's blog to include Addy as well. We went to the cardiologist on Tuesday with Addy, and it turns out that her murmur is more than a murmur. She has a hole in her heart.. The hole is not very big and the cardiologist thinks it might close up on it's own, but none the less he will keep an eye on her. The good side of this is that she will now qualify to get an RSV shot. I guess being born at 35 weeks isn't enough alone to qualify you for the shot. Roman had them and I swear by them. He didn't get his first cold until he was two. I sure wish they could figure out some of these mysteries to CHD. I might never know why, but seriously I don't do anything that would put me at risk. Then there are mothers who drink and smoke and their children are perfectly healthy. Darn it! Well, I guess it is just a waiting and watching game to see if it goes away on it's own.

New addition

2011-07-17T22:40:00.002-04:00

There is a reason why post have been almost all but absent on this blog. We added a new addition to our family on June 20th, 2011. The pregnancy was filled with many visits along with the typical morning sickness. I think most heart moms can relate to me when I say we held our breath most of the pregnancy in fear that she would also have a heart condition or something worse. We only slightly relaxed when the ultrasounds confirmed all was OK with her heart. However, I guess it turns out we are not completely out of the clear. When Addy was born she was born 5 weeks early. It seems her heart beats just a little faster than normal and she has a murmur. So it is off to the cardiologist once again. Hopefully, it is something she will grow out of and not something more serious. If you are reading this, we can use your prayers. I almost forgot, her name is Adelaide Louisa and she was 17 inches long and 4 pounds 3 ounces. She was born via an emergency c-section. I guess the placenta stopped working and thus she stopped growing. I also had low amniotic fluid. The good thing is that because of Roman I got extra ultrasounds, and was considered high risk. So in a way, Roman saved Addy's life.

4 years ago!

2011-05-25T07:00:00.001-04:00

4 Years ago, we were given an amazing gift. A rebirth of our son. At 5:30 am we handed over our son to the surgeon who would repair his heart. It was the most terrifying thing I have ever done in my life. What if he didn't make it? We held our breath until we got the call from the nurse saying he made it off by-pass. Then it was another two days before we knew everything was going to be OK. He was out of the woods. See, Roman was born with a Congenital Heart Disease called Tetrology of Fallot. This is a condition where not only is there a whole in the heart, but the pulmonary and aorta valve are not attached. Thankfully, this could be repaired. He still needs additional surgeries, but we are grateful for every day we have with this little boy. He is such a joy! I love when he makes up little songs and sings. I love how kind he is to everyone and his giant big smile. I love how he gets obsessed with an author like Dr. Seuss or Eric Carle and wants to read everything that author has written. He is totally obsessed with Super Hero's and the funny thing is he is my Super Hero. Thank you Heavenly Father for the gift of life!

October update

2010-10-16T09:28:00.003-04:00

Yahoo! It turns out Roman will not need surgery this year. It is truely a miracle because the last visit they said his valve was not growing and now it has recovered and it keeping up with his body. Even the cardiologist was really surprised. He had a huge smile come across his face as he told me the news. He also wants to hold off on doing the MRI in hopes that we will not have to sedate Roman to do the procedure. That sounds good to me. Since having Roman, I don't take things for granted. He truely is a miracle. On another Note, Roman is the sweetest boy on the planet. Full of love, hugs, and kisses. He loves to cuddle with him. His favorite movie right now is finding Nemo. I think we have watched it three times this week. He is also totally into puzzels and can sit for hours doing them on our living room carpet. He also has a great imagination and loves to play with his Super Hero figurines. Thank you everyone for your prayers!

Nervous!

2010-10-07T13:52:00.002-04:00

Tomorrow, Roman goes in for his cardio appointment. It has been six months since his last visit. Do these appointments ever get easier. I guess the reason why I am a little nervous is that on the last appointment they said his pulmonary valve looked very small. I didn't write about it because well I have been in kind of a denial that he will most likely need another surgery in the next year or so. I guess we were really hoping that he would make it to his late teens so that the technology would advance and so that he could get the mechanical valve. I really don't want to be on this road of needing one surgery after the next as he grows. The only good thing I can see about the whole situation is that maybe he can have his next surgery before entering Kindergarten, so that he will not have to miss any school. Otherwise, all is going well with Roman. He loves going to preschool. He is really forming friendships and loves his friends Peter, Tucker, and Joshie. Totally into puzzles and will sit doing them for hours. Totally into Super Hereos and can't wait to be Wolverine for Halloween even though I wanted him to be something cuter like an Indian or a Spider. Still not a very good eater and hasn't gained any weight in the last year or so, but we keep trying. Hope all is going well with everyone else. Wish us luck tomorrow. Kelleyn

Roman "Each Day is a Gift"

2010-07-14T11:59:00.001-04:00

A few months ago, I submitted a photograph of my son and I to a contest for photos that best depict being a mother. Our photo didn't win the contest, but last month they came back to ask me to write up the story behind the photo. See our third son was born with a Congenital Heart Disease and we didn't know if he would live or not. You can find his story featured on the Power of Moms blog.

http://www.powerofmoms.com/articles/each-day-is-a-gift.html

Happy Birthday Roman!

2010-02-13T20:27:00.002-05:00

Dear Roman! You bring us so much joy! Did you know I wanted you to be born on Valentines day? However, there was no room at the Inn (hospital), so we had to wait until the next day. However, after getting me checked in they realized that you were a cardiac baby, so they told me to get some sleep because they didn't have any cardiologist on call at the hospital that late at night, so you were born on the 16th. You sure gave us a scare with your 12 day NICU visit. We almost thought you might not make it, but finally you decided it was time to come home and meet your brothers. I can't help but smile when I look at you because you are always so happy. I do even mind that you know what you want and don't back down. I am glad. I think this will get you a long way. You are such a good friend to all you meet. You still don't like to get your hair wet, you love strawberry milk, and chicken nuggets. You love to be outside and can walk the whole 1 mile trail at the park. You have no problem standing up to your brothers and for the most part they let you have your own way. Over most toys, you love to paint and play playdough. While at one point this year we thought you might need speech therapy, we can't get you to stop talking. You kind of skipped the individual words for full sentences. The other day you surprised me with telling me about something that happened at Halloween. We love you! While we are sad to see you grow up we can't wait to see what the next year will bring us.
Love, Mommy and Papa

Hip Hip Hooray!

You are 3!

Happy Birthday Darling Boy!

You are the light of our lives!

Photo taken by Butler Family Photography.

Off to see the Govenor CHD Awareness week

2010-02-09T23:52:00.002-05:00

Roman and I went to the Capitol on Tuesday with other children who have Congenital Heart Disease and their families to bring attention to this cause that effects 1/100 births. It is the #1 birth defect and they don't know what causes it. We are hoping to find more money for research that we can love the number of babies born each year with this condition. The photo sucks because the assistant to the Governor took my camera before I could set the settings and tell her how to use my camera, and I could run over to help her because there were film crews there from the local news channel. I am hoping the Governor's photographer was able to get a few could photos and I can replace mine with a better photos. Do you see Roman and I sitting next to the Governor?

Merry Christmas 2009!

2009-12-25T03:06:00.001-05:00

We would like to wish you a very Merry Christmas and a Happy New Year!

All is Well!

2009-10-13T12:57:00.003-04:00

It has taken me a couple of weeks, before I was able to write this update. Three weeks ago, we visited the cardiologist and everything seems to be going well. Infact, if he has another great visit in 6 months, then we will be switched to a yearly visit program. You probably are wondering why then it has taken me a couple weeks to post this good news? I learned that Roman will most likely never be able to ride a roller coaster. While this seems trivial in the grand scheme of things, I couldn't help but cry every time I thought about it. Not so much that he can't ride roller coasters with his brothers, but someday he will be a dad (at least I hope some girl will fall in love with him despite he has CHD) and he will never be able to go on the rides with his children. I kind of knew this in the back of my mind, but to actually hear it from the cardiologist broke my heart. Sometimes no matter how hard one tries to stay positive about everything it is hard not for just a moment to cry about what will never be. For now, though I am looking at the positives and that is Roman is finally talking and in full sentences, so this is something to be happy about. No speech therapy -Yeah! I was starting to worry. All is well! All is well!

Reflections on having a child with CHD

2009-08-26T23:00:00.001-04:00

Tonight I am feeling a little reflective. I think every ones lives change when they have a child, but I think our lives changed even more when we found out that our child had a Congenital Heart Disease. It was like we were children ourselves who were forced to face the hard reality that our child may or may not grow up to be an adult. He may never get married or have children himself. While Tetrology of Fallot is one of the most repairable of the Congenital Heart Diseases, with every procedure comes more risk. There isn't a moment that goes by that we do not worry if he is OK. We ask each other, "does he look blue to you?" Then wonder if we should call the pediatrician to get his oxygen levels tested. His heart will never be like yours or mine. It will always be a repaired heart. His heart leaks and someday he will need another surgery to replace his valve.

Tonight, I found out another heart baby has passed away. My heart is aching for her family. http://oliviahuelsbergen.blogspot.com/

While I have a strong testimony in my Savior Jesus Christ and his atonement, at times I am scared and angry. Angry that while Congenital Heart Disease is the number #1 birth defect it receives very little in terms of research dollars. How can we not pay attention to something that affects 1/100 children? One article that was written in the WSJ last week said that doctors often don't have the equipment or tools to treat children without a little guess work because the procedures and tools were not designed for them, but rather for adults. The are also left guessing on the amount of medication given to these patients. After our son had his surgery, I had to drive to several pharmacies because ours didn't carry that medication. While I am grateful for the American Heart Association they spend the majority of their budget studding preventive measures for adults. You read that right preventive! So that you and I can live a longer life, but children aren't even given that same chance. We can prevent heart disease by the choices we make, but congenital is something that you are born with.

Today hug your babies a little closer. Tonight pray that we can end the fighting. May we start putting our energies into finding a cure for Congenital Heart Disease.

Little Heart ,Big Problems WSJ

2009-08-11T12:44:00.006-04:00

By RON WINSLOW
Matthew Emmerling was just three days old and barely home from the hospital when his mother noticed his feet were unusually cold to the touch. Hours later, doctors determined that he was born with a critically narrowed aortic valve that prevented his heart from getting an adequate supply of blood to the rest of his body. He was in shock, and without quick intervention, his life was in danger.
View Slideshow Andrew Spear for The Wall Street Journal
Joe Emmerling and sons Matthew (left), 3 years old, who was born with a heart defect and is now healthy and active, and Daniel, 5.
To avoid risky open-heart surgery on the infant, doctors figured they could thread a tiny balloon into his heart and inflate it to stretch open the obstructed valve. The problem was that a balloon designed and approved to treat heart defects in patients as tiny as Matthew didn’t exist. Instead, Robert Beekman, a pediatric cardiologist at Cincinnati Children’s Hospital Medical Center, chose an angioplasty balloon that normally serves a different function: opening up clogged kidney arteries in adults.
The adult kidney balloon “is the right size for a newborn’s aortic valve, so we use it,” Dr. Beekman says. But, he adds, using a device in small children that wasn’t designed for that purpose puts them at heightened risk for procedural complications and medical errors.
Matthew’s situation highlights an enduring reality for children born with life-threatening heart defects: Hardly any of the myriad drugs and devices developed for the multibillion-dollar market for cardiovascular disease are designed with kids in mind. Children with heart disease represent too small a segment of that market to justify companies’ investing the time and resources needed to develop specialized products. Litigation worries over products intended for children—and the challenge of conducting clinical trials for treatments often administered to newborns—are other impediments.
It all adds up to what Jim Lock, chief of cardiology at Children’s Hospital Boston, calls a “profitability gap” between the market for children and the much-larger business of treating adults with heart disease. Matthew Emmerling’s doctors had to use an adult-size kidney balloon to open his aortic valve when he was a few days old. The result is that in treating some of medicine’s sickest patients, physicians often must rely on instinct, back-of-the-envelope calculations and anecdotal case reports swapped at medical meetings, instead of the more rigorous clinical evidence that underpins much adult heart treatment.
In a study presented last March at a meeting of the American College of Cardiology, Dr. Beekman and his colleagues found that 63% of 473 patients treated at Cincinnati Children’s Hospital between 2005 and 2008 got devices that hadn’t received regulatory approval for the purposes for which doctors used them. Doctors at Children’s Hospital Boston say that of some 1,000 tubular devices—known as stents—that doctors put in vessels in children’s hearts in recent years, not a single case involved a use that had been approved or evaluated by the Food and Drug Administration.
Some recent efforts aim to change that. An FDA advisory panel recently recommended approval of a heart valve that could be used in children. Various clinical trials, sponsored by the National Institutes of Health and other groups, aim to compare different surgical approaches and different drug regimens in children with congenital heart defects. And the American College of Cardiology next month plans to launch a registry that will allow doctors to compare the outcomes of catheter-based procedures done on children at centers around the U.S.
“We adopt things known to work in adult patients in pediatrics because we’re sort of desperate,” says Gail Pearson, a pediatric cardiologist and medical officer for the Pediatric Heart Network, a clinical-trial cooperative of children’s medical centers sponsored by the NIH’s National Heart, Lung and Blood Institute in Bethesda, Md. “We are trying to move more toward a paradigm where the norm would be if you’re a child with complex clinical heart disease, your care would be guided by a research protocol” based on studies of children, she says.
About one in 100 children is born with a heart defect, which in the U.S. translates to between 35,000 and 40,000 births annually. Some of the malformations heal on their own, but in thousands of cases, either open-heart surgery or less-invasive catheterization procedures are required to repair the problem and often to save the child’s life.
Adapting Adult Devices
While heart surgeons and cardiologists who perform catheter-based procedures have proven remarkably adept at adapting adult devices for use in children, their patients are nonetheless at heightened risk of complications. Devices that don’t fit properly in a blood vessel can become dislodged and “float away” to a vessel in the lungs, requiring an additional procedure to remove them.
Matthew Emmerling as a newborn in Cincinnati Children’s Hospital.
Most stents used to prop open blood vessels in infants and small children are designed to be implanted in the bile ducts of adult livers. “They work pretty well, otherwise we wouldn’t do it,” Dr. Beekman says. “But they’re not designed for blood vessels at all.” He recently implanted three stents in vessels in an infant’s heart, and a few days later, they filled with blood clots—a life-threatening crisis that was resolved with blood thinners, he says.
Drugs also pose a dilemma. Children younger than 7 or 8 typically need medication in liquid, not pill, form. But many common heart drugs, such as beta blockers and ACE-inhibitors, aren’t readily available as liquids and have to be specially prepared.
Devising medication regimens for children also can be difficult. Doses are often based on a child’s weight and are typically calculated from standard doses given to adults, a strategy whose safety and efficacy don’t have substantial backing in scientific studies. Pediatric cardiologists have to deal with patients ranging from “a 400-gram infant born prematurely all the way to a 400[-pound] extremely obese adolescent,” says Marlene Miller, a doctor at Johns Hopkins Children’s Center in Baltimore, who led a recently published study of heart-drug medical errors in children. “That’s enormous variation. Adults don’t vary that much in size.”
Among the few devices approved for pediatric heart patients is a plug for such small hole-in-the-heart malformations as septal defects. Now a heart valve, being developed by Medtronic Inc. for both children and adults with congenital heart defects, is poised for regulatory approval in the U.S. An FDA advisory panel last month unanimously recommended its approval based on data from 99 patients, including several children between 7 and 12 years old. The device, implanted via a catheter and a balloon instead of open-heart surgery, is designed to replace the pulmonary valve, the gateway for blood to get to the lungs for oxygen. Different balloon sizes enable doctors to use it in children and adults.
The FDA panel voiced concern about the tendency of the device to fracture in a small number of cases and put restrictions on its recommendation. But the panel said it was impressed by the likelihood the device would enable many people to delay or avoid repeated open-heart surgeries. The device isn’t perfect and not designed for very young children, says Dr. Lock of Children’s Hospital Boston. Still, he says, assuming the FDA approves the valve, “it’s going to change the field and improve the lives of children and young adults with heart disease.” Dr. Lock says he has no financial relationship with Medtronic.
Recent studies also are focusing on treating young heart patients. At the NIH, officials are preparing to report the results of two major clinical trials comparing treatments for children born with just one ventricle, or pumping chamber, instead of two. One study compares two different surgical approaches; the other looks at whether giving the ACE-inhibitor enalapril to such infants on top of other medicines improves their outcomes.
The national registry of catheter-based procedures being launched by the American College of Cardiology, called Impact, aims to serve as a resource for pediatric doctors in the same way that adult-patient registries help cardiologists guide and improve their treatment.
“We hope Impact will become the standard by which safety and quality are judged for hospitals” that treat congenital defects, says Gerard R. Martin, co-director of the Children’s National Heart Institute in Washington, who heads the registry effort. Dr. Martin expects the registry will eventually enable doctors to see whether surgery or less-invasive catheter-based procedures achieve better results for a variety of heart defects, including the aortic-valve malformation that Matthew Emmerling had.
Leaking Aortic Valves
By inserting the kidney balloon into Matthew’s heart, Dr. Beekman tore open the tiny leaflets in the aortic valve that were fused together and blocked blood flow from the heart to the rest of the body. Even when this procedure is successful, the valve typically leaks, causing blood to flow backward into the pumping chamber. But Dr. Beekman says he was disappointed to find more leaking in Matthew’s heart than he had expected. “How can anybody expect perfect results from devices that were never designed and developed for these uses?” he asks.
Dr. Beekman says he told Matthew’s parents after the procedure that the infant would likely need another treatment soon, perhaps even open-heart surgery, to address the problem. But a checkup after several months revealed that the leak had stabilized and now, three and a half years later, Matthew—whose story was reported in the local Cincinnati press—is a healthy, active child whose heart is working effectively.
“He’s a monster,” says his father, Joe Emmerling, a customer-service representative at Hewlett-Packard Co. “I’m just thrilled that they were able to do what they did without open-heart surgery. That doesn’t come from the manufacturer; that comes from doctor know-how.”
Matthew isn’t out of the woods yet. He’ll eventually need surgery to replace the defective valve—even an approved pediatric balloon wouldn’t have spared him from that. But the kidney balloon “allowed him to skip several early childhood surgeries,” says Dr. Beekman. He is hoping that since there are no replacement valves available designed for young children, Matthew can avoid surgery until he grows.

This Article proves that as parents we need to be more active in bringing CHD to the attention to the law makers and raise money that scientist can create devises that work for our children-Roman's mom

New CHD Video

2009-07-29T22:51:00.002-04:00

Roman is one of the 100 children featured children in this video.

Being Two

2009-05-21T07:36:00.001-04:00

A picture say a thousand words. Two year olds are so much fun at least most of the time until they learn to have a tantrum. Roman seems to also have a huge fascination with other peoples shoes. The photo above is of him walking in his grandpa Nerney's shoes. It was so funny to watch him walk in the shoes because they are bigger than the average persons shoes. My dad is 6 foot 6. Roman even wants to wear his crocs to bed. He is really starting to talk. New words are Come on, guy, cat, dog, owl, don't know, milk, bowl, bed, night night, go, toes, eye, and nose. Oh, did I tell you he wants to do everything for himself even though he can't do it all by himself. His favorited tv shows are Mickey Mouse Clubhouse, The movers, and Yabba Gabba or something like that.

You Gotta Believe!

2009-02-20T00:35:00.004-05:00

Make video montages at www.OneTrueMedia.com

Roman the last 2 years with you in our lives has been the best. When the doctor told me that there was something wrong with your heart. I just had to believe that everything was going to be OK. When the doctor said, "You can still abort this baby." I couldn't! I had to believe. If I had only one minute, three months, two years, or a lifetime, I had to believe. We spent so many nights on our knees praying that everything would be allright. You have changed our lives forever and changed our hearts too. Thank you for being apart of our family.
To play this and hear the music you will have to go to the bottom of the page and pause the playlist music. Enjoy!

At the Capitol

2009-02-11T07:45:00.003-05:00

This week is Congenital Heart Disease Awareness week, and to make it official our Governor Sunny Purdue signed it into law. Hopefully, this will bring more attention to this Disease that is the number #1 birth defect. Hopefully than researchers will be able to get more money, so that they can discover why this is happening to our babies. Please check out the new website created by Tommy Wood and his family to help spread awareness to this cause. You can get there by going to the We Support section on this blog and clicking on Congenital Heart Disease Awareness Org. Tommy is also in the process of trying to make a documentary that would help people understand that they can have hope. That link is also posted on the side under Selma. It is only through us parents that a difference is going to be made. Thanks Tommy for making a difference!!!!!

Roman's Blanket Project

2008-12-04T22:27:00.006-05:00

Last night, children ages 8-11 gathered to make blankets for the cardiac babies at Sibley Heart center. The children had a blast and felt rewarded in knowing they were doing something good for someone else. These blankets are just a start in a much larger project called Roman's Blanket Project. This project will not only provide baby blankets, but will also make burp clothes, pillowcases, crayons and coloring books, and hopefully a list of needed items. Today we delivered snacks for the parents lounge, cookies for the ICU waiting area, and 110 of the 300 blankets that were made. We also delivered 50 coloring books and 50 crayons.
This project has been made possible by bake sales and donations given from the faculty members of the Georgia Tech Business School, the Homework Center, and the Church of Jesus Christ of Latter-Day Saints.

Look at you now video!!!

2008-11-16T21:42:00.001-05:00

A Must See!

2008-10-08T19:12:00.002-04:00

For all of you Heart moms, this is a must see movie. It tells the story of how they discovered/learned how to repair the heart. I am so thankful for people like this who feel compelled to find the answer to problems and sacrifice themselves in the process.

Visit to the Cardiologist.

2008-09-05T14:31:00.004-04:00

Since Roman's surgery we have gone to the cardiologist every six months. When we are there he gets weighed, his blood pressure checked, his oxygen levels checked, and then they usually do an EKG and an Echo cardiogram. The EKG from my knowledge checks the electrical impulses the heart makes. The ECHO is similar to an ultrasound; however, it looks and takes pictures of his heart. These procedures are painless, but can be upsetting to a little one who doesn't want to hold still. I was really dreading the appointment because on the last visit Roman didn't want to hold still and cried. He was such a sweet little boy and was such an angel. We got to skip the EKG since he isn't having any problems. The appointment took about an hour and a half. Roman is doing great. He has mild to moderate stenosis, and mild to moderate on something else; however, now a day later I can't remember on what. I guess I should have written it down yesterday. The good thing is he is looking good and that is the most important thing. We do not need to go back for another six months.

18 Months

2008-08-16T18:11:00.002-04:00

Wow! I can't believe that Roman is 18 months. Well, he will be on Monday, but since we are going away for the weekend I thought I would post now. He is such a sweet little boy. All smiles; especially when he is being naughty. He has learned to like the swimming pool finally. His favorite food would be chocolate with any noodles coming in second. He says Mama, Oma, and dada. We are working with him to say more, but he has two languages to figure out, so this might be the reason for delay. He can make cars sounds and waves bye bye. He adores his family; especially, his big brothers. He likes to walk in everyone shoes and loves all things ball. This morning he colored for the first time on something other than paper and he was so proud of himself though mommy was really sad. He can throw a full blown tantrum and throw himself on the ground. It is so funny! Funny because he doesn't stay upset for very long-like 2 seconds. He has come a long way from a baby who was really sick and having to have open heart surgery at 3 months. We can't wait to see what else is to come. Being his parent's is such a joy.

CHD Awareness

2008-05-28T15:51:00.002-04:00

Make an on-line slide show at www.OneTrueMedia.com

Life

2008-05-09T08:42:00.005-04:00

It has almost been a year since Roman's surgery. He is doing great. He has learned to walk and he is starting to talk. We continue to go the cardiologist which is about every 6 month now. We continue to be amazed by what a miracle he is. I don't regret one minute of our journey with him because he brings so much joy and happiness into our family. He is adored by his big brothers. Yes, I wish he never had to have surgery, but don't we all only wish our children not to have to go through pain. I hope this blog has helped you and given you answers. We were scared too, but have courage and thankful for the medical technology we have today. God Bless !

Friday-surgery

2008-05-08T18:00:00.006-04:00

Thursday night I didn't sleep much. The doctors and nurses started coming into the room around 2:30 am. It was so hard not to feed him. He was hungry. He was good though and didn't cry to much. They took him away for various test like blood and chest x-ray. At 5am my husband arrived and with a member of our church they gave Roman a blessing. After that we were escorted down stairs with Roman in our arms. We sat in a room with other families and their children waiting to be taking to the operation room. My husband was crying. He lost his father to heart surgery 30 years ago. His father was only 42. It brought back all the memories for him of saying goodbye to his father before his father left for surgery. Eventually, around 6 am the anesthesiologist came and got Roman. We moved to the waiting room. Both of us tried to read books, but we couldn't. Around 7:30am a nurse came out and told us they had begun surgery. Time seemed to move so slowly. I can't remember at what time they called us, but they told us Roman was OK and was on by-pass. A few friends called us in the mean time to let us know that they were thinking of us and that they would be praying for him. Then around 11:00 another nurse came out and told us that Roman was off of by-pass and that the doctor would be out soon to explain everything. We were relieved, but I can't say we were happy. The surgeon came out not much longer than that and said that the repair was complete. However, they were not able to completely save his pulmonary valve. It was very tiny. They had to cut it. Which means that he will need at least one more surgery if not more. 12:30p came and we saw Roman. It was so hard to see him with all the machines and wires. The nurse came over and explained everything to us. We were not able to stay long with him because another baby crashed and they had to open his heart right there. They told us they would come and get us when everything was OK. I think we might have ate lunch, but I am not sure. 2 hours later we were able to see Roman again. We kissed him. Told him we loved him. He was asleep. We were told to go home, and that if there were any complications they would call us. We went home. I hadn't seen my other children in days. I slept for a few hours and went back to the hospital at 5a. They had started to take a few tubes off of him. That day was long. By Sunday, he was off all the tubes and was ready to be moved to his room. I was happy. I was also surprised at how fast he was able to come off a majority of the machines. Tuesday we were discharged. It was Amazing! They sent us home with Lasik which helps them not retain water and become swollen. Roman did not like this. For pain he was just given plain Tylenol. We were also given intructions on how to hold him and care for him. We ran out of their as fast as we could.

A Poem

2008-05-08T17:43:00.001-04:00

I found this poem on another mom's website. I hope they don't mind, but nothing could express more the feelings of handing over your baby. Your special little one.
Tomorrow...she'll walk down that hallway...
While holding her son's tiny hand...
Tomorrow...he will leave her arms..
For surgery as planned.
Tomorrow...she will kiss cheek...
Say mommy loves you...then...
I know she will be thinking...
Will I hold him just like this again?
I know these feelings all too well...
I've walked this road before...
It's true...no one can tell you...
Exactly what's in store...
That crystal ball we joked about...
Is not around to say...
You need not have a worry...
Things will go well today.
Tomorrow...she will watch him go...
(She does not have a choice)
She'll lose her concentration...
Her thoughts...her words...her voice.
And to the waiting room...she'll go...
With a mother's heart of fear...
While other's say what can I do?
She'll say...I'm just glad that your here.
She'll try to stay focused...
She'll try to stay strong...
But, I know she will wonder...
What's taking so long???
Nauseous, scared and so unsure...
Of what this day may bring...
Praying, hoping, waiting...
Not sure of anything.
Tomorrow...seems to have a way...
Of coming as it should...
You cannot hold on to today...
(As many wish they could)
Tomorrow she will let him go...
And then she'll likely pray...
Lord....please hold him in your arms...
And let him be okay."
---Stephanie Husted (thank you for expressing exactly how heart moms feel on surgery day)
mom to Braeden HLHS

Home

2008-05-08T17:07:00.006-04:00

Being home was great! We were so glad that he was no longer in the NICU. We are grateful though for the care that he got from the doctors and nurses, but it was good to be home. No long drives to the hospital. Over the weeks we stayed low key. Except for going to the doctors we didn't go any where. It seemed like we were going to the doctors all the time even though I know we really weren't. He received an RSV shot to protect him from the up coming cold and flu season. He also has two big brothers who go to school. We made everyone wash their hands like crazy. We even limited our visitors. We could not chance him getting sick and not being able to operate on him because he was sick. The most frustrating thing was not having a surgery date. We were told anything from 3 months to a year. They just didn't know. They try to wait as long as possible. The grandmas went home and we hired a nannie to take care of our boys. We didn't want them to feel neglected. It was nice to have her there, so I could go to the store or run errands. Everything wasn't perfiect during this time. Roman had a couple of tet spells.
This is where the baby turns blue from not getting enough oxygen. He recovered each time by pulling his knees to his chess. They teach you this at the hospital. They also teach you infant CPR. We didn't need to call an ambulance. We called the pediatrician and we were scheduled for visits. There they would check oxygen levels and listen to his heart. It always seemed like something more should be done. It was hard to go home and to feel like everything was going to be ok. Finally, we were given a surgery date of June 1st. We were excited! We couldn't wait. Which seems so strange because one doesn't want surgery for their children. However, you know that this is the only way they can be healed.

This photo was taken just a few days before his surgery. Roman never made it to his scheduled surgery date. We had been to the cardiologist a few days prior to this and he said eveything looked ok. His oxygen levels were in the 80's , but this was ok. He would be having surgery not to far now. At this point he was sleeping 2o hours a day and began to have less and less of an appetite. What made me really worry though was that on Wensday, I noticed that he was sweating like crazy. It was warm that day, but not that warm. I tried getting a hold of the pediatrician, but she hadn't called back. I put an emergency call into the cardiologist. He had had a tet spell just the day before. The cardiologist called me right back. I told him everything and he told me to go to the Emergency Room at Childrens right away. He would most likely need to stay. He was going into cardiac failure or the begginings of it. I called my husband who was at work and told him to meet me there. It was rush hour. the ER was a little crazy. Even though I told them what was going on. It took hours for anything to really happen. He was so dehydrated that they couldn't get an IV in and had to place it at the top of his sull. I cried. It was so painful to watch. We were helpless. We said a prayer and called our bishop, so that they could call the member of our church to let them know that he was in the hospital. We needed their prayers.
Our cardiologist surgeon was out of town and would not be back until Friday. We had to wait a day before they could confirm his surgery. He had one tet spell in the ER when they tried to put the IV in, but he didn't have any more. He was a happy baby except for the IV which he would have loved to pulled out if he could. The surgeons associates finally came by and confirmed his surgery for Friday-a week early.

NICU

2008-05-08T15:43:00.004-04:00

These are pictures of Roman with his GI tube. When he would get tired, and not finish his bottle they would just put it in the GI tube. Usually, they try every other feed to give a bottle, so that they can give the baby an opportunity to rest and not get too tired. Being in the NICU was frustrating because you have to deal with so many doctors and nurses. Everyone of them has a different personality and a different opinion. One nurse who was very young told me not to hold my baby too much. She said we have what is called "touch time". What? I didn't know you could hold a baby two much except when they are preemies any they need to stay warm under the lights. Touch time is holding the baby during feedings. I just about cried. She said I would spoil him, and he would want to be held all the time. I didn't care if he got spoiled because what if he didn't make it through surgery. I would never get to hold him again. I talked to my doctor and he spoke with that nurse. I could hold him when ever I wanted because there was no medical reason not too.

Happy Birthday Roman!

2008-05-08T09:11:00.004-04:00

Roman was born in February. He was born through c-section, but this had nothing to do with his heart defect. He just was stuck. He didn't want to turn his head the right way which matches his personality. The doctor even tried flipping him in the right direction, but he flipped right back to being sideways. I also wasn't dialating anymore and was stuck at an 8 after being on pitosin for hours. He was a beautiful baby boy. Look at the photo. You wouldn't know there was anything wrong with him. He was classified as a pink tet baby because he came out with perfect oxygen levels. As part of the routine though they still took him to the NICU to look him over such as give him an echiocardiogram, chest x-ray, etc, I couldn't get out of recovery fast enough. I wanted to see my baby. I had kissed him, but when you are strapped down to the table you can't hold him. My husband brought some pictures. It wasn't enough. Two hour later I got to see him. He was adorable. However, he was having some trouble feeding. They said not to worry. Sometimes c-section babies throw up because they still have fluid in their stomach. I asked when could he come to my room. They told me as soon as he feeds. It was late, so I went to my room. A couple of hours went by and still no Roman. They couldnt get him to take a bottle nor was I allowed to breast feed him. With heart babies, feeding is everything. They need to gain weight, so they can perform surgery. They like them to be around 12 pounds. The doctors spoke with us and told us that it looked like he would not need a shunt. That was good news! This means one less surgery. Need less to say, Roman stayed in the NICU 12 days. It was terriable. My husband had to work to save time to take off during the surgery. I couldn't even drive myself to the hospital. Thankgoodness for my friends at church and the help of my mother-in-law who watched my two other children. We could have never gotten through this time without them. Roman did not tolerate the formula very well, so they tried switching him to a high calorie soy milk. I pumped and saved all my milk. He didn't tolerate the high calorie soy milk, so the settled for just normal baby soy milk formula. We still do not know why, but he had a hard time sucking. We are not sure if it had to do with his heart of not, but then one day he must have deceided he had enough and wanted to go home. He began taking all of his bottles. We were so happy. We could finally bring him home, and his brothers could see him.

Sibley Heart Center

2008-05-08T08:25:00.003-04:00

Part 2
The next day we drove to Atlanta. We were tired. We cried the whole night. We prayed the whole night. We called our friends and asked them for their prayers. How could our baby have a heart defect. Even though I am a little older mom, I was healthy and had taken all the prenatal vitamins even months before I got pregnant. Our two other children were healthy. We didn't even know any one whose baby had a heart defect. Anyway, we went to Sibley Heart Center at Atlanta Childrens Hospital. There they gave a echocardiogram to the baby. Very similar to an ultrasound except that this machine has better capablity to see the babies heart and measure it's heart function. They measure the heart. They measure the arteries. They measure the number of heart beats per minute, and they measure the amount of blood flow going in and out of the pulmonary and aorta valves. During pregnancy there is very limited danger for the baby because the mother's body does all the work, but after birth the babies heart must work on it's own. Since in Tetralogy of Fallot the valves are not attached the blood does not know where to go and will choose the path of least resistence. This means two things that the baby is not getting enough oxygen (thus sometimes these babies are called Blue Babies) and the arteries become weakend, or in technical terms they say stenosis. The heart thus has two work harder and the heart becomes larger or has a thickening of the wall. Eventually leading to cardiac failure. After the echo they took us into a room and explained everything that needed to take place in order to repair our sons heart. They also suggest we get a amnio to determine any chromosonal disorders since this condition is also linked to Downs and Di George syndrome. However, if we choose not too a chromosonal test would be ordered at birth in order to know how to best treat the baby or in other words to know if there are any other complications that we would be dealing with. I choose not to get the amnio because I was afraid of miscarriage and it really didn't matter to me what other complications my child had. I was going to keep him no matter what. I also tend to worry and didn't want to spend the rest of my pregnancy thinking how bad things are. Not that I wouldn't worry about his heart, but these test could not really tell me how severe either of these syndromes would be if he had they. It can also tell you what you might expect, but there is a hugh range of outcomes in both syndromes. I went home feeling more at peace. My husband was deeply sad and continued to worry. Over the rest of the pregnancy I continued to have multiple ultrasounds and echocardiograms, but otherwise my pregnancy was pretty normal -just like any other mom and just like my two other pregnancies.

What is Tetralogy of Fallot?

2008-05-08T08:02:00.001-04:00

Tetralogy of Fallot

What It Is -->Tetralogy of Fallot has four key features. A ventricular septal defect (a hole between the ventricles) and many levels of obstruction from the right ventricle to the lungs (pulmonary stenosis) are the most important. Also, the aorta (major artery from the heart to the body) lies directly over the ventricular septal defect, and the right ventricle develops thickened muscle.

Because the aorta overrides the ventricular defect and there's pulmonary stenosis, blood from both ventricles (oxygen-rich and oxygen-poor) is pumped into the body. Sometimes the pulmonary valve is completely obstructed (pulmonary atresia). Infants and young children with unrepaired tetralogy of Fallot are often blue (cyanotic). The reason is that some oxygen-poor blood is pumped to the body.
Surgical TreatmentTetralogy of Fallot is treated surgically. A temporary operation may be done at first if the baby is small. Complete repair comes later. Sometimes, the first operation is a complete intracardiac repair.
Temporary OperationIn small and very blue infants, a shunt operation may be done first to provide adequate blood flow to the lungs. This lets the baby grow big enough to have a full repair. The shunt is built between the aorta and the pulmonary artery. The shunt is removed when a complete intracardiac repair is done later.

Complete RepairComplete repair tends to be done early in life. Once it was more common to do a temporary operation first and a complete repair later in childhood.
To do a complete repair, the surgeon closes the ventricular septal defect with a patch and opens the right ventricular outflow tract by removing some thickened muscle below the pulmonary valve, repairing or removing the pulmonary valve and enlarging the peripheral pulmonary arteries that go to both lungs. Sometimes a tube is placed between the right ventricle and the pulmonary artery. This is sometimes called a Rastelli repair.

Ongoing Care MedicalIf you've had tetralogy of Fallot repaired, you'll need regular follow-up with a cardiologist who's had special training in congenital heart defects. You may need to take medicine after your operation to help your heart muscle contract or to control heart rhythm abnormalities. Your cardiologist will follow your progress with various tests. These include electrocardiograms, Holter monitors, exercise stress tests and echocardiograms. (See the Glossary.) This will help determine if you need another procedure such as a cardiac catheterization or more surgery.
Activity RestrictionsYou may need to limit your activity, particularly for competitive sports. If you have decreased heart function or rhythm disturbances, you may need to limit your activity more. (See the section on Physical Activity.) Your cardiologist will help decide if you need limits.
Endocarditis PreventionPeople with tetralogy of Fallot are at increased risk for developing endocarditis. People with unrepaired and partially repaired tetralogy will need antibiotics to prevent endocarditis before certain dental procedures. If your tetralogy of Fallot has been repaired, your cardiologist will let you know if you need to continue to receive these routine antibiotics.
For more informations see the American Heart Associations website

The beggining

2008-05-08T04:56:00.005-04:00

Part 1

It is only after some time has passed that I can begin to write our story. However, I want to write our story for other families who might be experincing what we have been through. Roman was born in February of 2007. He was born with a heart defect called Tetralogy of Fallot. He was diagnosed at our 19 week ultra sound appointment. I remember that day clearly. We were so happy. We even brought our middle child Winston. We wanted him to see the baby. It began just like any routine ultrasound. They also told us the sex-a boy. This makes 3 boys for us. I was a little disappointed because I wanted a girl. However, I thought to my self. Well, the most important thing is that the baby is healthy. My husband brought our middle child out into the waiting room. The ultrasound continued. Shortly after that they brought the perinatologist in. I didn't think anything of it because I was 35, and I had met him at a 13 week appointment. About 20 minutes or maybe longer passed, and I thought this isn't right. I don't remember them taking so long with the other two. I asked him if there was something wrong. He answered, "Yes, I think you need to go get your husband." He wiped the jelly off my belly. I stood up and got my husband and then he escorted us to a side room. I new something was really wrong. I began to cry. With my husband and I both seated. He says,"I think there is something wrong with your babies heart. In fact, I am pretty sure there is something wrong with his heart, but I just am not sure how severe it is. I am having a hard time getting a clear view of one of his arteries-the pulmonary artery. He then explained to us that our son has a condition called Tetralogy of Fallot. Our heads began to swim as he started drawing diagrams of the heart. After he was done, he also explained that in the state we live in we would have another 4 weeks to have an abortion if we didn't want to continue with the pregnancy. We were mad. What? We couldn't he was our little boy know matter what. I was in love with him. Heart condition or not I was going to keep this baby. He then scheduled us an appointment for the next day with the Sibley Heart Center in Atlanta. What a day!