Presenting our 21st warrior, Steve!

I have to keep adding that exclamation point at the end of these titles. How come? In my head and heart, every single name reflects a warrior who is either still fighting, or has fought the good fight. If I could put each name in blinking lights and in neon, I would. Each name is celebrated over here at Queen of Hearts. Each name means a story and name that deserves to be shouted at the top of our lungs.

Steve is one of those stories and names.

Back in 2007, I had a blog called “The Bent Bunch” or something of that nature. I only say that because the name changed. I started it in 2005 as homage to our firstborn, James. Then we had Natalie, the blog name changed again and I really lost track of the title changes. Still fresh from our newly diagnosed newborn girl as having half of a heart, I wrote a little about my feelings coping with it. Most importantly, updates of Natalie’s (almost) daily and weekly doctor visits, weigh-ins and pulse ox checks, so family and friends could catch up and we could minimize our phone calls and focus on keeping our daughter stable. The blog, by a huge distance, was never a big read in the blogosphere. But any followers we gained were an immense gain to me. But, we lost readers and comments when I broke out the news about Natalie’s “special heart” in May of 2007. It’s expected. People freeze up and aren’t sure what to say. So they give distance when the distance wasn’t necessary. All purely innocent and  you can’t take it personally. But moving forward, we gained some new followers of Natalie’s story when she was an infant. The very first CHD-related connection our family made was with Steve.

Steve Catoe left a comment on one of the Bent blog, reaching out to our family with support and advice. I was so preoccupied with our life handling a sick infant and active, healthy toddler that I took a little time finding out who this Steve was. How did he know what he was talking about? Who is he? How is he so awesome? I was in for a real treat. Not only did Steve share the exact same defects as our daughter, but he received open heart surgery and treatment for quite some time at Johns Hopkins Hospital in Baltimore- the hospital who cared for Natalie’s heart for almost 2 years. We walked the same halls at Hopkins that Steve walked. We felt the same feelings Steve’s parents felt. It’s incredible.

Steve Catoe began blogging in 2008 at Adventures of a Funky Heart. He made a huge imprint in the Adult Congenital Heart community, as well as the CHD community as a whole. He wore many hats- warrior, survivor, friend, advocate, supporter, blogger, and the list goes on and on and on. Every word he said or wrote was valued and still is to this day. He had a knack for taking huge medical terms and allowing all of us readers to understand every single bit. The impact is huge and it’s still felt in the community. His imprint will forever exist.

We were all incredibly blessed to have him.

On November 29th, 2010, while doing what he loved- writing at his computer, Steve suddenly passed away.

155112_179287075416924_4038825_n

Below are just a few of my personal favorite blog posts by Steve at Adventures of Funky Heart:

August 27th, 2010: When I’m Not the Funky Heart

“One of my Facebook friends is highly agitated… with good reason:

‘I’m SO sick of hearing “Aww so now are YOU the one with all the heart problems?” I mean HONESTLY…Do you people think that’s a nice thing to say? People don’t say that to cancer patients so why say it to us?’

Preach it!

Personally, I don’t mind talking about my heart. (Hey, I write about it every day!) But I do have a few pet peeves. There are times when I just want to be me. This is an invisible disability, after all, and occasionally I want to remain invisible. Just one of the group, nothing unusual about me. When I hang out with my friends here at home, I’m not the Funky Heart and the wordsCongenital Heart Defect rarely cross my lips.

Another major irritant is being introduced not as a person, but as a health issue. Don’t you dare. If you introduce someone as “having a heart problem”, you’ve marked them. You have defined them by their medical status, and placed them at a disadvantage. Certain segments of the population will see them as “less than”. And if the other person is a young lady that I might have an interest in… well, you just threw that opportunity out the window. I want her to get the chance to know me. There’s a lot more to me than just my heart. If things go well, I will be the one who decides when it is time to have The Big Discussion, not you.

And the younger you are, the worse it can be. It’s a delicate balance – Mom, I know that you are grateful that your child survived their heart defect and any related surgeries, but your 7-year-old really isn’t in a position to ask you to hush and just let him be a kid. This would be a very good time to sit down and have a good talk with your child, and learn what they think. Perhaps talking about their problems while he/she’s present makes them uncomfortable.

The worst thing I have ever seen is a mom who insisted that her child pull up his shirt and show off his scar. You could see that the child felt like a Show and Tell object…. and mom was oblivious to the entire thing.”

July 6th, 2010: You’ve Been Warned

“Hey Heart Defect! We need to have a talk.

Yeah, you and me – I just wanted to warn you that things are about to get ugly.

I have no idea why you chose me, and for quite a while now you’ve had your way. I’ve been pretty much at your mercy because I did know how to fight back.

I didn’t know that you could fight back. You had me convinced that I was one of just a few people who you picked on, and I just accepted it.

But I’ve learned better, and while you weren’t looking, I started paying attention.

I’ve stopped being the usual, run of the mill, Woe is me! sick guy. I’ve learned how to take care of myself. I learned how my heart is supposed to work, and what you’ve done to it. I’ve learned how it really works. I even read the medical literature. Dad-gum it, that was hard, but I’ve figured most of it out and I’ll Google what I don’t understand.

I’m no longer passive – I am an active, intelligent, involved patient. I don’t just sit quietly and fill my prescriptions; I ask questions, I learn, and I follow up on important things. I do what I have to do to keep you under control. I found a really good Cardiologist, and not only do I have him on my side, I’ve got his partner, a bunch of good nurses, and a whole freakin’ hospital backing me up.  Anytime you want to cause trouble, you’re gonna meet my crew. And we ain’t going to fight fair.

And from now on we’re going to be playing by my rules.”

June 15th, 2010: The Funky Heart’s Rules

“Fans of the TV show NCIS are familiar with “Gibbs’ Rules“, a series of life lessons condensed into short phrases by Team Leader Jethro Gibbs. The Funky Heart also has a basic set of principles.

1) Never take from the Congenital Heart Defect (CHD) community; only give. This one should be a no-brainer. Unless they are lucky enough to be well off, Heart Families have to burn through a lot of their resources in order to help their Cardiac Kid. Medical staff, ICU, drugs, equipment, hotel for mom and dad… all this costs a lot of money. And a CHDer who doesn’t take prescription drugs is a rare thing. In case you haven’t noticed, drugs can be expensive.

CHD Support Groups are also financially strapped.  Most have razor-thin budgets and are barely making it themselves – especially in this economy. If they are lucky enough to generate any revenue, the odds are that money is reinvested in the organization. So I can’t in good conscience take money from these people or organizations – they need every bit of it. When I am invited to attend a CHD conference, I personally pay for my own airfare and my hotel room. My family has been just where these families have been: stretching that dollar until it breaks.

2) It’s not about Awareness. Think about it – most of the readers of this blog are already painfully aware of Congenital Heart Defects. Rather than being about awareness, Adventures of a Funky Heart! tries to focus on CHD Education: Can my child live a productive life? My child has an oxygen saturation of 87%, is this normal? Is Hypoplastic Right Heart Syndrome a defect? I answer these questions by writing about the latest research, new Congenital Cardiac Technology, and stories from my life and the lives of other CHDers I know.

3) NEVER lie. Don’t believe me? If I’m giving you a report or other information, the statements I make are backed up by a link, like this one:The sun rises in the East. You don’t have to believe me, but you can read for yourself and see why I think the way I do. Not that long ago I was accused of using “scare tactics” after I wrote a post listing the side effects of Amiodarone. But I had links to other articles and to a blog written by an Electrophysiologist (a doctor who would normally prescribe Amiodarone) and I stand behind every word of that post.

4) Always be positive. Despite the high survival rate for some heart defectsand the declining mortality of CHDs, deaths due to a heart defect still occur. Each one is tragic, a life cut much too short. I do my best to project a positive attitude – you can do it, you’re strong, just hang on. You’re going to get through this. And while I do discuss death when necessary (Jim Wong,Eliza Huff, and Gracie)  I don’t dwell on bad outcomes. Especially in a crisis, that’s not what a mother needs to hear all the time.

5) Be there. Sometimes all you can do is spend time in a waiting room, or just sit and listen (or read an email) as someone pours their heart out to you.”

 May 16th, 2010: George“My friend George spoke at the recent Lobby Day event in Washington DC. I wish all of you had been there to hear him.Like many of us there, George has a Congenital Heart Defect (CHD). His defect is Tetralogy of Fallot (ToF) and he is a retired Pathologist from out West. That’s right – a retired Pathologist. I’m not going to insult him by listing his true age, but George worked a full career with a major heart defect.He’s quiet and unassuming, probably the result of his years in the medical field. Pathology is a very scientific branch of Medicine; attention to detail is a must and you do not jump to conclusions. So when George stood up to speak, I wasn’t expecting what came next.

Long story short: George tore the house down! He stated that he had recently celebrated a birthday and then he said;

“I firmly believe that one day those of us with heart defects will routinely live to be eighty, ninety, and even one hundred years old.”

That did it for me right there. I’m 43 years old, but I’m 42 years, 7 months past my “expected” life expectancy. And here’s a respected member of the CHD community, a retired scientist, saying that he thinks that one day we’ll live a good long time? And might even hit the century mark? And all we have to do to start down this path is obtain funding for the Congenital Heart Futures Act? Right then, I was ready to walk down to the Capitol (Three blocks away), climb the dome, and rip that statue right off the roof!

George also has a very dry wit; he can tell a joke with such a deadpan expression that you don’t even realize he’s joking. But his humor can bite, as he proved when he recalled an exchange from his younger days.

“When I attended medical school they taught me that people like you didn’t make it,’ a doctor told me. I didn’t know what to make of that so I didn’t say anything.”

People like you? Wait a minute… that includes me!

“A few moments later the doctor asked me `Have you thought about which medical school you would like to attend?’ I answered, `Not the one that you attended.’”

You tell ‘em, George!”

And may I say? Our family has had the utmost pleasure to meet George last year while volunteering for the Congenital Heart Walk with The Children Heart Foundation, last summer in Aurora. We love you George!

Here is a really wonderful clip of Steve sharing his (very moving) story a few years back at the Regional Forum of Congenital Heart Disease. Please please watch it. IT’S SO WORTH IT..

Rest in Peace, Steve. We love you forever and your Funky Heart, too.

Presenting our 20th warrior, Carly!

Reading Carly’s story has proven that there are many “Queens” out there in the world of Congenital Heart Defects. Carly is one of them. Her spirit and strength are just as bright as her gorgeous red hair. For the past 19 days we have shared CHD warriors stories and every single one of those stories is completely unique. Carly’s story is just that. Her mom, Devin, has been so gracious to share Carly’s story with us. Warning: the cuteness is almost overwhelming.

“On May 27,2011, Carolynne Sue “Carly” Simmons was born. We were told that Carly was born healthy. When she was 16-18 hours old she started turning blue in the nursery. First, the doctors thought she had a heart mummer. From there it went to hole in her heart. We was transferred to WVU in Morgantown, West Virginia to find out Carly had HRHS (Hypoplastic Right Heart Syndrome). From WVU we was airlifted to UVA, in Charlottesville, Virginia. Here, we find out that Carly couldn’t get a shunt after having a catheterization the doctors found out that Carly’s coronary arteries pumped back in to her right chamber and the shunt would put too much pressure on Carly’s heart, which would cause her to have a heart attack. At 18 days old Carly was put on the transplant list as a 1-A . Carly was in UVA’s nicu for almost 4 months moved to the floor at 4 months old so mommy and daddy could stay nights with Carly. After less than a month on the floor, November 4,2011 at 9:45 pm we got the call. After only 4 and half months of being on the list.

303200_275284389182265_1168806123_n

Look at this beautiful queen. What a fighter!

The transplant only took 6 and half hours felt like 100 hours. Carly did great, her new heart starting beating on its own. 1 year and 2 months post transplant Carly has only had two stays at UVA both of which are due to Carly not wanting to eat solids yet. Carly has had 4 post-transplant catheterizations to check for rejection and all 4 have looked great. Carly is a little delayed, but she is picking up fast. She is crawling everywhere now and pulling herself up. In the last week Carly has stared eating solids more.”

294267_10150415617263714_2090171322_n

Someone’s enjoying a yummy bottle : )

65244_10151541851203714_1588698487_n

It doesn’t get any cuter than this, folks. What an incredible warrior! You’ve got this, Carly!

Presenting our 19th warrior, Gabby!

I don’t know what I love more about this family.. The fact that we live in the same state or that we have SO much in common with our stories! Looking at Gabby’s photos, you can’t NOT smile. She is one adorable kiddo, who’s going to go places. Actually, I could make a really long list of reasons why this family rocks, but instead I ask you to read Gabby’s story. Her mama does an amazing job:

“My pregnancy was a healthy and long one (2 weeks overdue), so I had to be induced. Gabriella Gross entered this world on October 27, 2011, and was quickly labeled a beautiful healthy baby girl. About 3 hours after birth, we began missing the first signs of CHD. Gabby didn’t want to wake up for like 5-6 hours. All the nurses were freaking out and telling me to wake her up and feed her. I kept trying to wake her up. She didn’t want to wake up. I didn’t really know any better so I actually wasn’t nervous and eventually she woke up.

At home Gabby and I began the process of sleep deprivation and breastfeeding, but again I missed the same sign that my little one was basically sleeping through the night on the first week. I joined a local lactation group where I could weigh and feed her, and I quickly noticed Gabby never ate over 1.5 ounces at any feeding. Plus, she would fall dead asleep after eating. I also started noticing her weight was dropping off. But I had two pediatricians and two lactation consultants telling me this baby is healthy, “look at those cheeks”, “this baby is getting everything she needs”, and “your milk supply is fine”. Ironically, I was even given a therapist card and I was told maybe it was postpartum blues.

Gabby started getting older and more awake, and then she wanted to eat, what felt like, every 45 minutes. I decided I didn’t have enough milk so I switched to the bottle when she was about 2.5 months. I remember my girlfriend feeding Gabby the bottle and saying “I know why you didn’t breastfeed, this girl won’t even finish a bottle without stopping and pausing numerous times.” Even after a month of bottle feeding, Gabby wasn’t gaining much weight. She had fallen from 50% to 15% in weight. Still, the pediatrician said this is such a healthy baby, and being a new mom I went home. Another month passed and I was visiting a friend in St. Louis when we weighed Gabby on the baby scale at a children’s museum. This time, she hadn’t put on any weight. But I thought the scale must be wrong.

Fast-forward, and Gabby is now 4.5 months old. It was time for her 4 month check up. I had a list of questions I wanted to ask the pediatrician that morning (1) Do you know why Gabby would turn purple when we go up to the mountains? (2) Do you hear Gabby’s grunting when she tries to do tummy time……like she’s working so hard? (3) What do you think of Gabby’s weight and feeding? Well, I never got to ask my list of questions (which ironically were due to her heart problem), because Gabby had cold symptoms during RSV season. Because of the wheezing the doctor pulled out the pulse ox machine. After 10 minutes later we are off to the hospital in an ambulance (her pulse ox was bouncing between 60 and 80). RSV and other tests were negative, so eventually an echo was ordered for the following morning.

March 15, 2012 is a day I will never forget. The echo technician arrived at 7AM (before Joe even got back to the hospital). She told me, the doctor will review the results today and call you this afternoon. The echo begins, and I could tell the technician was getting frustrated with Gabby’s lack of cooperation. So she said, “I’m going to go find her a pacifier” (even though I told her Gabby doesn’t like pacifiers – probably another sign we missed). The technician came back and started up the echo again, and after a couple of minutes she says, “oh the doctor is going to stop by on his way in to work”. THUMP THUMP THUMP went my heart and I just felt like puking and crying. I knew something was really wrong when the doctor was going to stop in on his way to work.

The next words I heard that day many CHD families understand…. being told the diagnosis that your child has a severe congenital heart defect that would require a lifetime of surgeries.  Gabby has been diagnosed with Tetralogy of Fallot with Pulmonary Atresia and MAPCAs. MAPCAs stands for Major Aortopulmonary Collateral Arteries which is actually rare; about only 300-500 kids a year are born with it. You know it’s rare when we were interviewing doctors and they wanted to do an echo for free, just because they wanted to see the MAPCAs again.

GABBY LIVED FOUR MONTHS WITHOUT A PULMONARY ARTERY.

Gabby’s MAPCAs were so large, they were adequately compensating although she was obviously starting to struggle more.

Gabby wasn’t diagnosed during ultrasounds, and no one heard the murmur or checked a pulse ox before leaving the hospital (the pulse ox would have caught it).  Sometimes I am sad when I look back on so many of the missed signs. That if I had been educated and I had known the signs 1) she slept and slept and slept the first 3-4 days (and later at 3 months old she would fall asleep while playing) (2) feeding wasn’t going well (3) we took her to the mountains twice and she would  turn blue (4) she was grunting or heavy breathing when she tried to roll over or do much activity (5) and she was even retracting when she was breathing (6) she did have rapid breathing rates which I know can’t help but see on old videos. But I cannot be sad or resentful for things that I cannot change. I only hope that I can help change the world that so many families live in. I hope to help change the world of CHD for the better. I hope to be a resource to new families with CHD, and I hope to raise funds for research for CHD, and hopefully I will continue to educate as many pregnant family and friends as I can on the signs.

Gabby had her first heart surgery (all defects corrected)…

Post Operation Picture  690

Gabby, post-op..

and she is doing great. She will need many more surgeries to replace her pulmonary artery as she grows, and her MAPCA’s have a high risk of getting smaller rather than getting bigger. But Gabby is doing great right now!!

gabby xmas 2  678

She walked at 11 months (even after an open heart surgery at 7 months). She is a thrill seeker at 15 months (loves swings and climbing and riding any moving car or horse). She is so interactive with us and is trying so hard to start talking. I can’t imagine life without her, and I’m so glad she was born in 2011 and not 1951. I pray daily for our family, families like us, pulse ox legislation and stem-cell research.”

everybabybutton2

Right on! ; )

family hike  675

Gabby enjoying a hike with her family. : )

Presenting our 18th warrior, Jessica!

481764_383163611757720_1038569089_n

A few years ago, I met Jessica and I can’t begin to explain how lucky I am to have connected with her. I’ll definitely try. Not only is she a Congenital Heart Defect adult warrior, but Jessica has been full of a wealth of information and support for families and other survivors. She has turned her experiences into lessons for others- which in my humble opinion, has been the best of information, even compared to information I’ve received from doctors. Jessi has traveled (and still travels) to meet other CHD warriors who she calls her “heart family”. She lives with her CHDs but she never lets them own her. Jessi (as she likes to be called) is way more than her heart defects. She is funny, cool, and super-talented in photography and loves editing photos for other warriors and their families! She’s a wonderful friend, sister, aunt, and daughter (and I know that list goes on). Jessi is a true warrior in every single sense of the word. I think that if you search the dictionary for “warrior”, a picture of Jessi would be there right along with a beautiful, smiling face. She’s a good friend of mine who just happens to have half of a heart. One of these days we’ll come to her and visit.

Here is Jessi’s story as told in her own words:

“My name is Jessica, but I prefer Jessi. I’m 23 years old and I am surviving CHD. I was born October 3rd 1989. I asked my mom a lot of questions about her pregnancy and delivery with me. It was a normal pregnancy, no problems whatsoever. But now looking back she remembers her doctors would always listen to my a heart beat a little longer then normal. Maybe they heard something, but it was 1989 and they didn’t have great technology back then. Labor and delivery where normal and I was born in the early morning.

406295_344058382334910_1371694522_nShortly before discharge my mom was trying to nurse me and I just wouldn’t wake up and eat. The nurses told her she just didn’t know what she was doing, but I have an older brother, she knew how to nurse. So the doctors took me away and managed to wake me up enough so I would cry. I turned blue. My mom knew something was wrong when the doctors and nurses came back without me. They told her I had a heart problem, it wasn’t anything serious, probably just mitral valve prolapse and I’d be fine. I got my first ambulance right before I was even 24 hours old. When my mom finally got discharged her and my dad came to see me, and what awaited them was a much worse diagnosis.

I have Tricuspid Atresia, Severe Hypoplastic Right Ventricle, Mitral Regurgitation, 2 superior vena cavas and a VSD and an ASD. My parents were told the ASD and VSD were the only reasons I survived my birth. I had my first surgery, via cardiac catherization at 2 day old. A balloon septostomy to make my ASD and VSD bigger so the blood would continue to flow. I got to go home a week after my birth and did okay until I was 3 months old. That’s when they had to do my first BT shunt. At 9 months old I needed another BT shunt. Both were done through my back and I have scars underneath each shoulder blade. At 1 1/2 I had my first open heart surgery. I went in on mother’s day and got out on father’s day. They did the Glenn, but it failed and they couldn’t get me off bypass. So they did another procedure (this one I don’t know the name of) and again, they couldn’t get me off bypass. My heart just wouldn’t beat. They had one more option but they weren’t sure if it would work, it was so new. But it was all they had left, so they did the Fontan. Luckily, it worked and they finally got my heart to beat. But a 4 hour surgery turned into a 12 hour surgery. Because I was on bypass for so long there was swelling in my brain and I had a massive seizure and was in a coma for 2 weeks.

819415_423499781057436_795033335_o

A very young (and adorable) Jessi!

549615_344069689000446_1229659761_n

Jessi rocking her Holter in the 1990s!

July 24, 2009 I had the Fontan revision, Maze procedure to fix my atrial fibrillation, atrial reduction (they removed part of my atrium) and a pacemaker implant to help the sinus bradycardia.

528930_344072502333498_1842347099_n

422232_344069285667153_299477410_n

See how she still smiles! She rocks.

Its been a crazy 3 years since my last surgery. I was in a car accident in November 2010 and was told the only reason I survived it was because my pacemaker kept my heart going. The Maze procedure failed and my atrial fibrillation came back about 2 months afterwards. I had a cardioversion in September 2011 and we are watching it again and if it gets bad again we will try an ablation. It’s now called chronic atrial fibrillation. At my last appointment my doctor told me I have the best ventricle function post Fontan out of everyone he sees in his clinic, and I’m quite happy about that. I’ve been diagnosed with an auto immune disease and I’m in a lot of pain, but I try to keep going.

297826_363625823711499_1104826473_n

My cardiologist says it’s just a matter of time before the heart failure comes back and I’ll need a transplant. But I’m taking it one day at a time. I’m enjoying my life. I’m trying to get disability because as much as I’d love to work I know I can only do it part-time. I love meeting new CHD families and go to visit children in the hospital whenever I go for my appointments. I also love meeting them outside of the hospital too. I’ve been told I give them hope and I am proud of that. They help me feel not alone. I’m enjoying being an aunty and hope to sometime become a mom (through adoption) myself. I love my life and am thankful for the doctors who gave me a chance to live it.”

380767_394958220578259_927546616_n

Jessi and her nephew!

31485_425887144152033_619147073_n
Please visit Jessi’s Facebook page and send love and support! She’s the best advocate that anyone could meet when it comes to CHDs.

Screen shot 2013-02-18 at 9.04.01 PM

Jessica’s Journey

Presenting our 17th warrior, Lucas!

Lu-cas [loo-ku s]: 1. real-life superhero 2. a boy full of incredible strength 3. utter cuteness 4. a reason to smile. 5. CHD butt-kicker. 6. red hair that makes girls swoon.

Here is Lucas’ story as bravely told by his mama, Ashley:

“On September 9, 2010 I took a positive home pregnancy test…..or 6. On September 14, the results were confirmed at the doctor’s office. This was definitely not a planned pregnancy, but it wasn’t not planned either…we were playing invincible 🙂

My pregnancy was going great and we were stoked to find out that we were having a little boy, who was quite eager to show us that, on December 27. The following week I got a call saying I needed to come have another ultrasound done because they couldn’t get a real good picture of his heart. At my regular OB appointment two weeks after the second ultrasound the doctor told me they still didn’t get a real good picture for the reader, but the tech said everything looked ok. I was given two options I could either just let it go and believe everything was ok or I could go get a Level II ultrasound (fetal ECHO) at Riley’s. I initially opted for option one but changed my mind shortly after because I am a paranoid person

We found out on February 21, 2011 that Lucas has a congenital heart defect known as Tricuspid Atresia. This is where the tricuspid valve which is located between the atria (top part of the heart) and the ventricle (bottom part of the heart) is either absent or under developed. Due to this, the right ventricle of his heart is also under developed. This causes the baby to be cyanotic (blueish) because the blood returning from his body has no direct access to the lungs. To get the blood to the lungs, it goes on an adventure through a VSD (hole in the ventricle) and an ASD (hole in the atrium).
To repair this, he will undergo three surgeries to re route the blood from the left side of the heart. The first being a BT Shunt, the second being a Bi-directional Glenn (hemi-fontan) and the third being the Fontan. They should be completed by time he is 2 1/2. (http://www.mottchildren.org/congenital/services/patient_con_tri.html0

Lucas was born at IU Hospital on May 10, 2011 weighing in at 7 pounds and measuring 20 1/2 inches.

389241_350386301681231_121568639_n

fresh out of the oven!

I got to see him for just a few seconds before the took him out of the room to get ready for transport to Riley Children’s Hospital. I was unable to hold my baby for the first time until May 11 since he was full of wires and IV’s. I was petrified. However, he was in incredibly great health, all things considered and we were able to go home on Friday, May 13.

535237_351366821583179_1132587214_n

yummy baby feet!

He had his first heart catheterization on August 16, 2011 and then determined it was time for surgery.

Lucas underwent his first surgery- the BT Shunt– on August 30, 2011.

182324_350481528338375_323230319_n

150722_350481635005031_1424586441_n

574833_350482098338318_1834601414_n

You know you have a special child when they still smile even after going through so much.

They had planned on it being a closed heart procedure in which they go underneath your arm to place the shunt. However, when they laid him on his side, his oxygen levels dropped so low that the surgeon decided to just go in through the sternum and get it done as quickly as possible. He spent just a few days in the PICU before we went to the Heart Center. They were going to keep him for a few more days than normal due to the fact that he wasn’t taking most of his bottles orally. We were finally going to go home a week and a half after surgery…but he had a fever the night before so they ran tests and found he had an infection in his blood, so we would have to stay ten more days for a round of IV antibiotics.
While in the hospital, he developed second degree heart block. Heart block is an abnormal heart rhythm that usually results in a slow heart rate. It is caused by a problem in the heart’s electrical system in which the electrical impulse is delayed or blocked completely as it travels from the heart’s upper chambers (the atria) to the heart’s lower chambers (the ventricles). In second degree heart block, some of the impulses are blocked while others get through so the heart rate is often slower than normal and irregular (http://www.mottchildren.org/congenital/services/heart-block.html). The doctors decided it was best to go ahead and insert a pacemaker to help as second degree heart block can lead to complete heart block. He had his pacemaker inserted on September 20 and we were finally able to go home on September 23.

559642_350482538338274_4931411_n
Everything went decent after that for a few months. We got a new pediatrician- we weren’t really agreeing with the way his family doctor was going with things. He didn’t seem concerned about the lack of weight gain, etc. Since going to him, we have had a lot of things happen. The biggest being that Lucas had a J-tube placed on February 22. He is still really slow on the weight gain, but that is to be expected with a heart defect. After his surgery, he had an IV infiltration in his right foot and that got pretty gruesome to look at, but it is finally starting to heal up. He was only in the hospital for a few days after the tube placement before we got to go home. Once there, though, things didn’t go quite as planned. He was extremely fussy and vomity for a few days and his j tube site leaked a bunch…it was gushing. We ended up going back to Riley’s where they determined he was constipated causing the fussiness, vomiting, and leakage. After a few days there, we were sent home again. His site has healed nicely and barely leaks anything at all now- his surgeon just said it looked as good as it could. We did, however, end up back at Riley’s about 2 weeks after coming home the second time. This time his foot, where the iv was, was changing appearance a little too drastically for me. We had tried to call the plastic surgeon on call a few times that night, but we never got a call back so we ended up taking him in.
After 5 hours in the ER, they finally put us in a room for the plastic surgeon to come see us in the morning. After going off on them; they wouldn’t come see us in the ER and because they never told us what was good and what was bad….or when to get help- we were told everything looked good and to go home. They said they didn’t tell us what we cold expect because every wound is different, but it would have also been nice to know what I might have seen in the healing process….or maybe what was absolutely not good and needed checked out. We have been home since that date, thankfully.

Lucas went in for pre op on May 3 for his Hemifontan.

His surgery was the first case on May 4. They took him back around 7:30 A.M. Updates started coming around 9 and the first few hourly updates were just that they were still trying to get lines in. It took until about 11:30ish before they got everything in and could start surgery. The surgery went relatively fast after that and we were able to see him by 6:00-ish.

578155_351073208279207_2004134099_n

He was extubated and had just a little oxygen through his nose. Surgery went great, we were told- other than him not wanting to have lines placed easily :). Recovery was great as well.

535853_351072384945956_1356774057_n

He had his two drain tubes removed a few days later and we were out of the PICU on Monday. We spent the rest of the week in the Heart Center at Riley’s. He had a few issues with satting low at night and they placed oxygen on him while he was sleeping but we were not going to come home with it.
Lucas spent most of his 1st birthday in the hospital but we were discharged that afternoon! Before that happened, though, the Child Life department came and brought him a bunch of gifts! I was in awe by how much they brought! My heart is still so full of love from all of the love that’s shown there. I have never felt more at home at a home away from home place. The nurses are great, the doctors are amazing, and the atmosphere is splendid.
We didn’t get to stay home long, though, because Saturday morning (the 12th) Lucas had a coughing fit and vomited after holding his breath for a bit. This was the 4th time this had happened in a 24 hour period and I was concerned so I called the surgeon’s office and they had me bring him in. The did swabs on him to check for a few things but we were released on Mother’s Day morning because only one of the swabs would have any effect of what was being done if it came back positive and they were sure it wasn’t going to.
After a bout with pneumonia in June 2012, he was sent back to Riley’s because his fluid in his lungs wasn’t getting any better. That quickly resolved itself, but we were kept there an extra week to try to get him to start eating like a toddler, and to gain weight. I have refused to use his J Tube because he has a ton of anxiety over it, and well, he needs to learn to eat like a big boy. While in the hospital he gained VERY quickly, but since coming home, that has slowed down dramatically. Hopefully it picks back up soon and he outweighs a T-Rex in no time!

This is just the beginning of his long story with a CHD and I will continue to update and more things happen.
His current diagnosis is: Tricuspid Atresia, hypoplastic right heart syndrome, VSD, ASD, Heart Block with a pacemaker, and failure to thrive (very underweight). If you have questions or just want to talk, feel free to send me an e-mail. Ashley.B87@att.net.”

What Lucas grow!

525037_351084448278083_690240889_n

Lucas at 3 months old ; )

564261_351354274917767_647790244_n

..6 months old!

550806_351359331583928_1663328315_n

9 months old! ; )

533315_350422778344250_231497349_n

Lucas’ first birthday!

536228_399454253441102_1642999451_n

75921_436747463045114_1750909293_n

541787_436747159711811_205762741_n

29610_436747623045098_353030010_n

Another incredible thing to know about Superhero Lucas is now 21 months old, he is officially J-Tube free! Since September 13, 2012 to be exact! His story will continue to be full of awe-inspiring stuff. We just know it!

Presenting our 16th warrior, Hannah!

Hannah CHD Warrior BIO

How amazing is this photo that Hannah’s mom, Erica, put together??

In case I didn’t enlarge it enough (WordPress is tricky like that) I’ll repost what it says:

“Hannah was born July 28, 2006 with 10 of 35 heart defects and is truly a miracle! Hannah’s has essentially a half a heart on the wrong side facing backwards with holes plumbing in all the wrong places. She also has another rare condition called Situs Inversus Totalis where all of her organs are on the opposite side. She had her first open heart surgery (Norwood) at 3 days of age here at Arnold Palmer. She came home 28 days later. She had her second surgery (Bidirectional Glenn) in January 2008, had her last of the 3 surgeries (Fontan) July 2011. Where from that point she has blossomed in her heart health! She is now medicine free and is full of energy. She loves her Mickey & Minnie, riding her bike, dancing, and has a desire to enjoy life that is truly inspiring. She loves meeting others just like her at the Precious Little Heart Meetings (support group her and I started for other kids/parents affected with CHD) and visiting her doctors and nurses up in the CVICU at APH. She loves participating in the Heart Walk and telling ANYONE about her booboos on her heart!

Share Hannah’s story and spread the word of CHD= #1 birth defect and cause of death within the first year of life. More children are born each year with CHD than ALL forms of childhood cancers combined!”

Here’s another message from Hannah’s mom (a very detailed list of her heart defects):

“HPRH = Hypoplastic Right Heart Syndrome
ASD = Atrial Septal Defect
VSD = Ventricle Septal Defect
TGA = Transposition of the Greater Arteries
PDA = Patent ductus arteriosus
Interrupted Aortic Arch
Hypoplastic Aortic Valve and Ascending Aorta
Tricuspid Atresia
Dextrocardia
Aortic Stenosis

Blood Disorder
MTHFR mutation = Methylenetetrahydro folate reductase (MTHFR) blood
disorder

Situs Inversus Totalis
– organs on the opposite side

Surgeries to Date:
Norwood 3 days old
Glenn 6 months old
Non-Fenestrated Fontan 4 year 10 months old”

What a beautiful princess warrior!! I agree with Hannah’s mom, you can tell that she has a strong thirst for life. It’s incredible. Truly incredible. Rock on, Hannah!!

Presenting our 15th warrior, Corbin!

Corbin’s mom, Ruth, has a very well organized blog about her pregnancy and post-pregnancy life with Corbin. I contemplated re-writing a post to include for this blog but she has written everything so perfectly that I would never dare take that away (I’m not the best writer, anyway). I am in awe of her bravery for not only writing her feelings and experiences with CHD, but for allowing me to share them here. Below are links to the stories and small excerpts from them that Ruth has posted on her beautiful blog, “The Pearl in the Oyster“.

“February 20th, 2011, I gave birth via c-section to a 6lb, 14oz little boy. Little did we know that he had serious heart defects that would require heart surgery at ten days old.
This is his story.”

Day One

“I’m wheeled down to the OR.
The staff are really friendly. I can tell they are trying to distract me by starting a conversation. I appreciate the thought, but it didn’t really help. I am VERY aware of the anesthesiologist getting the needle ready.
The first stick really stings but it works immediately. I feel a lot of pressure when the spinal goes in and feel my toes go numb in seconds.
They lay me down and start prepping my belly. Anesthesia makes me nauseous and I’m sick once.
After some big tugs and lots of pressure:
“Whaaaa!”
I, of course, start crying.
At 2:27 pm, Peanut is brought into the world. 6 pounds, 14 ounces, he is a tiny little squirt compared to my first born of 9 pounds, 4 ounces. He cries as the clean him off and wrap him up.
When I first see him, he’s really wrinkly and red. I notice he has my nose and Hubby’s eyebrows. Just like my first born….”

Days Two and Three

“Everyone tells me that heart murmurs are nothing, and not to be worried.
But I have a bad feeling about this.”

“After a couple hours, Dr, D stops by. He tells us that Peanut’s vitals are good, his blood pressure has gone down, and he and the cardiologist see nothing wrong with sending him home. He does want to see him Thursday to check his jaundice, as it is still a little high.
YAY!
So the baby is cleared, but I am not. I still have to wait on my OB to get back from Covington.”

Day Four

“”Crap” I think to myself. It’s never good when the technician won’t talk to you.
Hubby asks:
“So do you see the murmur?”
She doesn’t answer.”

Day Five

“Around 7 that evening, members from our church show up to anoint the baby with oil. I’m not sure exactly what it means (shows how often I go to church), but in a spiritual way it makes me feel better.”

Day Six

“The NICU is very quiet and dark. We walk into a room with four stations with four babies. Peanut is on the left with a doctor standing over him, running an ultrasound of his heart. She is quiet at first, consulting with her assistant.
A short while later, she motions us over and begins to explain what she is seeing.
She has a very neat Eastern European accent.”

Day Seven

“We unpack our things at “the house” then head out for dinner. I know we can eat at the house for free, but the past couple days have been so hectic we just want to get out. We get dinner at the Roadhouse. It feels good to spend time with Hubby, laughing and making fun of people like we do.
But I also feel guilt. I feel so guilty every time I laugh. Every time I smile. I tell myself “you’re not allowed to be happy! Your child is in the hospital, broken, and you are out having fun!?”
I can’t stand myself.
And in the mornings when I first wake up, I forget just for an instant, what is happening. For the tiniest nanosecond I am happy. Then it all comes back…like a slap in the face…like a knife through the heart.
I remember.
I remember why we are here. In this strange hotel. With the hospital band still around my wrist.
My son is broken.”

Days Eight and Nine

“When we get to the hospital, the nurse tells us that over night, Peanut decided he did not need his breathing tube anymore and pulled it right out!”

“At this point I start crying. But it doesn’t faze the doctor. He touches my hand, once and very lightly, then continues on explaining. I stop thinking. All I hear is: death. It’s too much. I can’t hold it in and the tears flow.”

306503_411850615533880_1501703608_n

“This is Corbin, just hours before his first heart surgery. We got to the NICU two hours early so that we could hold him till the OR team got there. He slept so good, he was snoring. I love that memory. ♥” (from The Corbin Story Facebook page)

Surgery Day

“Before the surgery, Hubby and I came over to the NICU at 6:30 so we would be able to hold Peanut one last time. He still had a breathing tube and dozens of wires, but as long as we sat close to his bed, we could hold him. He had come off of isolation the day before so we didn’t have to wear gowns.
It was heavenly holding my baby. Once I got him situated, he was in bliss. He slept so soundly for the two hours I got to hold him; the nurses were laughing at him. He was sprawled out with one arm hanging off to the side and was snoring. They told me he hadn’t been sleeping well the past two days and he was bound to be exhausted.
No one can do it like mama.
I loved it, I could have sat there all day staring at him. He was so peaceful, breathing calmly, snoring slightly. It was perfect.”

Post-Surgery, the next few days

“I am keeping a journal so I can take notes during rounds and conversations with doctors. God knows I would never be able to remember all these medical terms on my own.
Dr. Rh, the Ped. Cardiologist, looks like Santa. He is short and round with a long beard that he likes to stroke when he is in a deep thought. Then there is Dr. M, his Intensivist (specializes in critically ill patients), Julie the Ped. Nurse Practitioner, and Dr. P, another Ped. Cardiologist.
The doctors ramble off all his numbers and stats for the night, what kind of meds he is on, and their plan for the day.
I write down quotes so I can pass them along. But only the good ones.
“ventilates great”
“stats are good for a mixer” (mixer meaning that the two holes in his heart are mixing the blood)
“better today then when he came in”
Rounds are fun! (only when the news is good of course).”

Here, Corbin’s mom explains the several severe CHDs that her son was born with: two ASDs and VSDs, Double Outlet Right Ventricle (DORV), Atrial Tachycardia, Prolonged QT, Williams Syndrome… The Diagnosis

Here is a section where Ruth includes more great explanations and more details about the several CHDs that Corbin was born with…Corbin’s Heart Defects

582581_412863962099212_1398841742_n

“This is what Corbin’s room looked like immediately after surgery. There are two monitors keeping track of his stats, an oxygen tank, a ventilator, and 15 medicine dispensers. I wrote in my blog that it looked like the deck of a space ship. Amazing isn’t it?” (from The Corbin Story Facebook page)

29369_459301210788820_1198914283_n

(from The Corbin Story Facebook page: “Sadly, I don’t have a picture of all 4 of us 😦 the bottom right is the only pic of I have of both the boys together and the top is the only one of my hubby and I with Corbin. I hate, hate that I don’t have more.”

The Talk

“So I knew this talk would come. I could tell by the way the doctor was looking at me that he was going to tell me there is a chance my child won’t make it. That I need to make the decision, that in the event his heart stops beating, do I want them to try and save him or let his disease take its course.
I don’t know the answer.
I don’t know what I want them to do or how I feel about it. I am still processing this and still trying to figure out my feelings.
I’m not saying this is the end of the road. I’m not saying Peanut is on his death bed. I’m just saying there is a chance that he may not make it.”

From Two, to One….

I was going to put an excerpt here, but I just couldn’t. Please click the above link…and read….

corbin1watermark

Corbin Walker Caruthers February 20th – May 17th 2011

Once a warrior, always a warrior.

Here is Corbin’s handsome big brother:

10283_461962080522733_372601999_n

“He was too young to realize he had lost a brother and I am thankful for that but we do tell him about Corbin and include him in everyday talk.”

209666_486987858020155_437798060_o

“Wow. Just wow. My hubby surprised me with the most thoughtful and amazing gift, made by a woman he works with. I cried when I read the quote ♥” (This was an incredible Christmas present given to the family.)

Now, Corbin and his family save the lives of many other babies born in this country. His mom works tirelessly to promote Congenital Heart Defect awareness and for pulxe oximestry use in every newborn to help detect a possible underlying heart condition. She is such a strong advocate, that she and Corbin, along with her supporters who saw the reason to march forward, passed a law in Corbin’s home state of West Virginia. A law appropriately called, Corbin’s Law. Now, every newborn is screened for critical heart defects in Corbin’s home state. Corbin is saving lives one day at a time.

Screen shot 2013-02-15 at 6.55.10 PM

The Corbin Story Fund- a non-profit fund where donations used help fund educational material, an educational class, and projects around the community. Please visit this page and support!

Screen shot 2013-02-15 at 6.15.53 PM

The Corbin Story. Spreading CHD awareness and pulse ox screening information every day.

Screen shot 2013-02-14 at 10.45.45 PM

He’s saving lives.