Tag Archives: HRHS

Presenting our 23rd warrior, Sydney!

…..aaaaaand… her mom, Debbie! Yes! We have two incredible CHD warriors today!

I first met Sydney and her mom, Debbie last year during the planning of The Children’s Heart Foundation‘s “Congenital Heart Walk“. They are the sweetest family. I remember feeling kind of terrified about Natalie starting full day kindergarten in August 2012. Debbie assured me how awesome Sydney did. She gave me the best advice and helped make the transition less crazy. Debbie really made me feel more prepared. August and September were really hot here in Colorado which resulted in several visits with Natalie at the school. She was having migraines and feeling extra tired due to the heat. But I handled it well because again.. Debbie made me feel prepared. I kept thinking of her advice as I would get through each day of those hot months. Before we all knew it, it was cooler and everyone stopped sweating and having migraines. I am so thankful for Debbie’s advice.

Sydney and Debbie, our family is very honored to have met you and your family. We are crazy excited about this year’s Heart Walk, and part of it is because we hope to see you all soon! : )

Here are their stories as graciously told by Debbie:
“Here’s my story:
I was born on May 27th 1975 and my parents had no idea about a heart defect.  At about 2 months of age, the pediatrician noticed a murmur and I was checked out at Children’s Hospital and they found out I had a “hole in my heart”.  Officially known as Atrial Septal Defect (ASD).  It was surgically repaired via open heart surgery when I was 3 years old.  I was followed at Children’s until I was 18 and was told I didn’t need to see a cardiologist any more.  (At least – that’s what I remember).
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 (Debbie and her mom. : )
Todd and I got married in 2003 and I got pregnant in October of 2004.  At my 22 week ultrasound the doctors requested a fetal heart echo for the baby, and I didn’t think twice about it – my defect wasn’t genetic, right?  The ultrasound took forever – doctors kept saying they couldn’t get a good view.  Then the worst moment of my life happened – our baby had a severe heart defect.  Hypoplastic Right Heart Syndrome and we were told we needed to decide in 2 weeks if we wanted to terminate the pregnancy.  I had to have an amniocentesis because the rates were higher for Down’s Syndrome with heart defects.
Luckily the doctors told us to see a cardiologist at Children’s and we met Karrie Villavicencio – the most amazing doctor!  She told us we could get through this with three surgeries and she would look and act normal like any other child we saw at the heart clinic.
Sydney was born on July 27, 2005 with no complications.  The room was filled with doctors, nurses and students (it was a teaching hospital and she was a rare one).  I got to hold her for a few minutes and they took her to get her checked.  We consider ourselves very lucky because we got to take her home after 2 days in the hospital.
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Sydney didn’t need her first surgery until 8 months of age.  A PA Band.
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Instead of her Pulmonary Artery being too small, hers was too large.  The surgery went well and we were out of the hospital in about 5 days.  Surgery #2 came at 14 months of age – the Glenn.
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(Sydney and her mommy)
It was another successful surgery and we were out of the hospital again in less than a week.
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After Sydney’s second surgery I got pregnant again.  My 20 week ultrasound was nerve racking, but a cried when the technician said they could see all four chambers of his heart.  That ultrasound was nothing like Sydney’s.  We were going to have a healthy baby boy.
Logan was born in January of 2009.  And then came the last surgery for Sydney before she turned 3 (in May) – the Fontan.  The surgery went well but she contracted RSV while in the hospital – no fun.  All doctors and nurses had to gown and mask up whenever they came in the room.  We were there for 2 weeks.  Her fenestration was closed via the cath lab about a year later.
She is now a happy second grader and has very few issues.  Her last holter monitor results were great and now we are hoping her oxygen levels are going up after switching medications for pulmonary hypertension.  Karrie Villavicencio is still her cardiologist and we see her about every 4-6 months.
Sydney loves her brother and friends, is a great student and is an overall happy kid!  She loves animals, especially horses and wants to be a horse trainer when she grows up.”
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(Sydney and her baby brother!)

Presenting our 22nd warrior, Natalie!

Being pregnant with Natalie was actually pretty awesome. The nausea was still all day long, but compared to her big brother, was mild. She went easy on me while I was pregnant with her. Everything was uneventful and normal. During the course of my pregnancy, I decided to switch my ob/gyn around 20 weeks along. This probably ended up being the beginning of a big mistake. Seriously soon-to-be mamas: don’t switch if you don’t have to. Lesson #1. The only reason I switched was to deliver at a hospital that was supposed to be “top notch” (it ended up being just as good as the hospital where my son was born). As opposed to my old OB, I had no idea but my new ob/gyn was totally against using ultrasounds hardly at all since my firstborn was born healthy and full term. I also was using Medicaid and I can only guess that the doctor didn’t want to “overuse” it. I had to pretty much beg for an ultrasound since I hadn’t had one yet, so at 26 weeks I finally found out that Natalie was a “she”. During the scan, the tech noticed that Natalie was very wiggly and the shots of her heart were not clear at all. She told me to tell my doctor, so she can send me for another scan another day. Totally cool. When I followed up at my checkup with the ob/gyn I asked her “so I hear the scans weren’t clear enough at the ultrasound” and she stated that everything was perfectly fine.

Nowadays, I know to never even take a doctor’s word as the final word when I feel uncomfortable with the answer. But at the time, I just let it slide, even though I felt frustrated, but I just knew that everything was probably..well..fine with Natalie.
The pregnancy went to full term and I had to evict Natalie by scheduled induction on April 21st, 2007- the same day as her daddy’s birthday.
The labor was fast and furious and she was born 3 1/2 -4 hours after labor was induced. She was also born with a clean bill of health and nice and pink. Apgar scores both 9, we were so ecstatic. A healthy baby girl born April 21st, 2007 at 8 lbs even and 21 inches long. Even taller than her big brother. Ha!

Every thought about our unclear sonogram photos went totally out the window. The nurses and doctors all heard Natalie’s murmur pretty soon after the birth, but we were told not to really worry because it’s so common to be born with a murmur that closes up quickly. Right before our 24 hour discharge from the hospital, the nurse who checked Natalie out said the murmur was gone and we were given the discharge papers. Home here we come! We got home and right that evening, my mom in law noticed how purple Natalie’s feet were. I was so deliriously tired that I shrugged it off as nothing serious, that “well, she has really fair skin like her daddy”. We never noticed much of the “purple spells” again so our overly exhausted brains didn’t think much of it. We followed up with our regular pediatrician for the usual few day old checkup and sure enough, our doctor heard the heart murmur loud and clear. Our doctor couldn’t believe no one caught it before we left for home a few days ago. The murmur never went away. Getting a bit concerned, our doctor gives us a referral to go and see a heart specialist at Johns Hopkins Children’s Center.

May 8th, 2007….
we were in the pediatric cardiologist’s office. Natalie’s oxygen saturation was 90%, but her weight and color were normal. At the time, I didn’t know much about the pulse ox numbers and how it worked, but now I know why they rushed to get her into the room to have her heart scanned. They knew something wasn’t right- 90% is not normal.
While scanning her heart during the echocardiogram, the doctor walks into the cramped room about 20 minutes into the test and heavily stares at the screen for a moment. He then sits down next to the tech and says “hmm..Natalie you’re even trickier than I thought”. He went from kind of concerned to really concerned. I’m sure my heart rate went up, but I did what I could to keep Natalie comfortable. She laid there like a champ, drinking from her bottle. The echo had to be at least an hour.
A little bit after getting settled into the exam room, the cardiologist walks in, really stern face, sits down with me and tells me how sick Natalie is. He explains all of these medical terms..but my ears aren’t letting much of it in… neither were my eyes because the tears kept me from seeing his diagrams.. finally the tears fell so I could see the diagram he took some time to draw: something to show me exactly how Natalie’s heart looked. He explained how she wasn’t born with a right ventricle, that it wasn’t functioning at all. That she has a VSD and an ASD but those 2 defects typically came with the defect of Tricuspid Atresia and that her ASD (Atrial Septal Defect) was actually helping to keep her alive. It was so much to take in.
I was so scared to hear more, but I knew I had to hear him talk. Truth is, I wanted him to stop talking. He let me cry and even left the room for a little bit to let me cry it out. Poor James and my mom in law were sitting in the room, too. I was holding Natalie and giving her a bottle and just was in such denial that she was sick. I kept repeating that she didn’t look sick- even her fingers and feet looked nice and pink.
From the time that Natalie was diagnosed to the time that she had her 1st of a few surgeries, the doctors at Hopkins and our pediatrician all kept a really (really) close eye on Natalie. We went in for weigh-ins and pulse ox checks a few days a week at the pediatrician’s office and almost weekly at Hopkins Hospital. We spent almost everyday at a doctor’s office. My husband and I studied the anatomy of the heart and I tried my best to figure out exactly how a Tricuspid Atresia defect functioned. As a new “heart mom” I wanted to be the expert at everything- all the way from diagrams down to exactly what to expect when she’s an adult. I was terrified of having more horrible surprises. I guess that was part of my grieving process- grieving the loss of a perfectly healthy baby girl.
Even with Natalie’s cyanotic spells (now we knew why she turned so purple the day we brought her home and there was even a term for it!), Natalie managed to still gain enough weight to keep everyone happy. She was a little skinny for a little while and slept a lot, but she was getting closer and closer to the bi-directional Glenn operation, and getting more past the need for a BT Shunt.

The focus was keeping Natalie stable and if she could skip the typical first surgery, we were told her outcome was even better. Her oxygen numbers were always in the high 80s or low 90s and with each point she went down, her age went higher. A few months before her surgery we “beefed” Natalie up with concentrated formula and she went from slim to super chunky. They wanted a chunky baby and they got one! With heart babies, the extra weight is actually great for them, during the surgery and for recovery. What a relief to have a nice chunky, big-cheeked baby girl.

(last of a few photos without her chest scars)

She had her very first heart catheterization, to help prepare the Hopkins team, about a week before Natalie’s scheduled heart surgery. Right after they finished, the cath doctor pulls aside in the hallway by the cath lab and tells us “well..we can’t wait longer than a week for this surgery, she needs it no later, her heart is showing signs of declining. Please make sure the date does not change.” My husband’s jaw dropped. I remember how gray Natalie’s skin was those few weeks before surgery. It was a good 50% of the time where she looked really sick. Her pulse ox dropped into the mid 70s. It was time. If she wasn’t going to have surgery very soon, she was going to die.

On Monday, October 1st, 2007 Natalie had her very first open heart surgery: the Glenn Shunt. This surgery helps to prepare her blood flow to skip past the malformed right ventricle and focus on her upper extremities. The goal is to eventually have enough blood flow to the lungs without having to use that side, but use the left ventricle 100% of the time with the Fontan.

 

It was a textbook case to the Hopkins medical team and it was a true miracle to us. I remember the advanced students (they called them “fellows”) who visited the PICU and each patient 2 times a day to check their progress and document everything. They would always visit Natalie last because they used her as the example of a great outcome. They would always smile at me and there was never any shortage of compassion. Here, my 5 month old daughter lay there with tubes and wires coming from every direction, but she was kicking ass and they reminded me of that. I kept holding onto that. And with each day, more and more wires and tubes came out. Freedom!
By Friday, October 5th, 2007 Natalie left for home! Her surgery went perfect and her body responded perfectly to the surgery. She was sore, but the incision (scaring the crap out of me, I can’t lie) was the only most difficult part of the physical care. I was so scared to do something wrong. And hearing Natalie cry from the pain… no mom or dad wants to see their baby in real, uncomfortable pain like that. But within a week of being home, Natalie was showing tons of signs that she was handling it more easily and she was feeling more comfortable.
From the time we brought her home until 2009, we just enjoyed her. She was able to do physical therapy and Natalie finally started walking around 22 months. Her energy, everyone could tell, was pretty good! At one point during Natalie’s recovery, her cardiologist said “Natalie’s body was made for this”. It had seemed that Natalie’s body was created to cope with the lack of her other ventricle.
In April of 2009 Natalie turned 2, we moved to Colorado from Maryland. Hopkins gave us the all clear that she should be able to handle higher altitude, particularly in the lower areas, like Denver. We were told that she probably wouldn’t need her 2nd open heart surgery- The Fontan completion, until around the age of 4 or 5. We had more time to just enjoy Natalie.
The move went well, we quickly found a great new pediatrician to help us keep an eye on Natalie’s health. During the summertime we noticed that Natalie wanted to rest more and her purple spells were more furious and happening more frequently. She still played and was trying to be active, but you could tell there was a drop. She would want to sit and lay around more often than play. We were finally able to get squeezed in to visit our new cardiac doctor at The Children’s Hospital of Denver in mid-September for a sedated echocardiogram. That’s when they threw a huge curve ball at us- they decided that Natalie was ready for the completion of her heart surgery and they wanted to operate ASAP. We were stunned. We thought we had a few more years!
We had a heart catheterization scheduled for October 8th, 2009. This was a way to prepare the heart team at Children’s: to really get a closer look at her heart and past surgery.
We had another curve ball- the heart team found 3 collateral veins that had to be closed off right away. These veins grew at some point over the year or so to overcompensate for the insufficient blood flow. But instead of helping Natalie they decreased her blood flow, which is why she was getting so tired all of the time. After a night stay in the hospital, Natalie recovered well enough to go home and rest. About a week later, Natalie’s energy was THROUGH THE ROOF. She was like a totally different kid. She was jumping and running and being a crazy 2 year old. Her collateral veins were closed off with platinum so there’s always a running joke now how expensive Natalie’s insides are. The only thing missing now are diamonds, which if Natalie could have demanded diamonds she would have.

On the early morning hours of Tuesday, January 12th, 2010, we brought Natalie back to Children’s for her Fontan operation. We were so very lucky to enjoy her through Halloween, Thanksgiving, Hanukkah, New Years, but now it was time to get back down to business.
(Fontan Completion with fenestration)
Her body was ready for this operation even if us parents were not. Other than some extra “oozing” as the surgical team calls it, Natalie’s transfer from off of the heart/lung bypass machine was a success. The operation took a whole lot longer than her first surgery, but this was it. This surgery was to “finish off” what her heart and lungs needed.
We had some little scares during the days in the CICU but nothing that hindered her ability to recover. At one point her kidneys were a bit “freaked out” with the amount of fluid and blood pumping in her body right after surgery, but her body worked it out. There was also a scare with her blood pressure dipping way low at times, particularly for the 2nd night, but just like her kidneys, her body worked that out, too.

By Monday night on January 18th Natalie was strong enough we were all HOME. Those are 4 beautiful letters. She did need continuous oxygen for a while, but we were prepared.
Natalie recovered beautifully. It was, once again, a text book case. We were all so thrilled. Within about a week of coming home, it was so hard to get Natalie to take it easy. Her energy level was pretty great and it became tricky to keep her from hitting her incision. But her incision healed beautifully. There were even moments we were given the green light to let her have a break from the continuous O2. As you can imagine, that was like heaven to Natalie.
We used the oxygen therapy until about April and we didn’t look back (except for when she had a nasty case of RSV in 2011 when she needed it again for a like a week).
Since her surgery, Natalie has evolved into such a spunky, energetic, wild and crazy 5 year old. She’ll be turning six in 2 months! She asks about her scars once in a while and tells us that her tummy and chest scars are “cool”. She has just started to deal with comments from other children in her class and she’s learning how to deal with that. She’s also begun to ask “why me”? concerning her special heart. That’s a really tough question to answer.
To date, Natalie has about 9 visible scars from her surgeries- her “zipper” (she loves it when I call it that), chest tubes scars, wrist scars, and neck scars from various lines. But just like her scars, the memories that Natalie has about her surgery seem to slowly fade away. She attends full day kindergarten, loves horses, LOVES art, My Little Pony, and  has had a Make a Wish trip to Disney World. She’s the kid, out of the 2 we have, that we’ll have to keep a close eye on, but not just because of a heart condition, but because Natalie is a true thrill seeker. Watch out world! Here comes your present day Shirley Temple! : ) (that comment comes from a resident at a nursing home I used to work at that called Natalie “Shirley Temple”.)
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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.

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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.”

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Someone’s enjoying a yummy bottle : )

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

Presenting our 18th warrior, Jessica!

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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.

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A very young (and adorable) Jessi!

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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.

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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.

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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.”

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Jessi and her nephew!

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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!

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Lucas at 3 months old ; )

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..6 months old!

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9 months old! ; )

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Lucas’ first birthday!

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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!!