Tag Archives: VSD

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 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!!

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.”

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“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

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“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)

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(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….

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Corbin Walker Caruthers February 20th – May 17th 2011

Once a warrior, always a warrior.

Here is Corbin’s handsome big brother:

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“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.”

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“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.

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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!

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

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He’s saving lives.

Presenting our 13th warrior, Keely!

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Look at this beautiful warrior! Her mom, Emily, has been so incredibly gracious to share her story with us here at Queen of Hearts. And we could not be more lucky. Once I immediately connected with her mom and saw the photos of Keely smiling, I couldn’t stop smiling! Infectious I tell you! I still am partial..but all CHD warriors are extra beautiful. Keely just proves that. Please read Keely’s story as told by her mom, Emily:

“Our daughter Keely was born with a numerous amount of complex Congenital Heart Defects (CHD) which effects 1 in 100 babies born. She was born with Hypoplastic Left Heart Syndrome (HLHS, meaning she has a single ventricle and most the structures on the left side of her heart are very small or underdeveloped), Pulmonary Valve Stenosis (blood is allowed to flow into the pulmonary artery but not back into the right ventricle), Ventricular Septal Defect (VSD, means not enough blood pumps from the heart into the aorta), Double Outlet Right Ventricle (DORV, meaning her aorta rises from her right ventricle instead of her left ventricle which is the normal chamber that pumps blood to the body) and a complete blockage of the AV canal. Keely also has 2 Superior Vena Cavas instead of one.

Keely was also born with “Heterotaxy Syndrome” which is a rare birth defect which involves the heart and other organs. The beginning of the word- hetero means “different” and the end- taxy means “arrangement.” In some cases of Heterotaxy Syndrome, the spleen may not work correctly or may be missing entirely. In Keely’s case, her stomach and liver were developed on the right side and she was born without a spleen. The doctors say that Heterotaxy Syndrome is what may have caused our daughter’s “unique heart.”

The doctors said that Keely will have to undergo about a minimum of 2 Open Heart Surgeries. The first Open Heart Surgery is called the “Bilateral Bidirectional Glenn Procedure” which repairs the top half of her heart and was done on March 19, 2012. The second Open Heart Surgery is called the “Fontan Procedure” which will repair the bottom half of her heart and is to be done around the time she is 2 or 3 years old.”

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Keep rocking that gorgeous smile girlfriend! You are a true warrior!

Presenting our 12th warrior, DJ! (post-surgery photos included!)

“My husband and I had tried for years to have a second child to complete our family.  With a few miscarriages and no other success we were about to give up when we found out I was pregnant.  I was very cautious at first, not getting myself too hopeful.  That first ultrasound when I saw that little heart fluttering away I cried, I was going to be a mommy again.  My fears of not being able to “complete the family” were gone.  Little did we know what that little fluttering heart had in store for us.   My due date was set for October 18th 2007.

My 20 week ultrasound looked normal. 10 little fingers, 10 little toes and 3 legs?  Yes, we were having another little boy!  We were extremely excited (grandma wanted a little girl to play dress up with but oh well).  I had 2 more ultrasounds to check my cervix because I had given birth to my oldest son a month early, and they were trying to prevent that from happening again.  Every time, she would check the baby make measurements and say that everything looked just fine.

October 17th, a day before my due date I went into labor.  I was expecting a very normal delivery but here is where the “fun” started.  The baby was breech so I had to have a C-section.  I hate needles so this did not make me happy.  At 9:15 Delvin James “DJ” was born, 8 pounds 10 ounces 21 inches long.   He looked so perfect that we still had no idea how sick he really was.

My heart sank when Terry, my husband, came into the recovery room and told me that DJ was in the NICU (Neonatal Intensive Care Unit).  Harrison, our oldest, had to spend a week in NICU and we were both really looking forward to having a normal, healthy baby.  That’s when he told me that his O2 levels were low and he had a swishing sound in his heart.  They were calling in a cardiologist to check him out.

4:10 pm … I remember the time so well.  A doctor came into my room to give us the news we had waited all day for.  Dr. Washington told us that the news wasn’t good, DJ had holes in his heart and his pulmonary valve had never opened.  He gave us some long name that I still can’t remember and made drawings of a good heart and DJ’s so that I could see exactly what he was talking about.  I remember thinking “please leave, I don’t want you to see what is about to come.”  I could feel my heart in my chest beating a million miles a minute as I tried to keep myself together.  He kept assuring us that it was fixable with surgery.

I don’t know if he was out of the room or not when the dam broke.  My heart breaking a little bit more with every tear that escaped.  How could this be happening?  Why my baby?  What had I done wrong this time?  In the back of my mind I still blamed myself for Harrison’s early birth.  I know I looked at Terry and told him I was sorry that he was never going to know what it was like to have a normal baby.

I hadn’t seen my baby boy except for the few minutes after his birth.  The nurses helped me out of bed and into a wheelchair so that I could go down to the NICU to see DJ before the transport team came to take him to The Children’s Hospital CICU (Cardiac Intensive Care Unit).  I couldn’t believe how perfect he still looked even knowing what was wrong.  I ran my fingers over his perfect little chest, baffled by the fact that they were going to have to mar this perfection to save him.  I asked my mom to ask one of the nurses if I could hold him.  I don’t think they really wanted me to because he was under an oxygen hood but, I think the look on my mother’s face made them change their minds about saying no.  He felt so small and so warm. It was in that moment that he was named.  Delvin was my grandfather and James was Terry’s, both lost to us within a year of each other, both fighters.  I was afraid of losing my little boy also.   I sat there with him till I physically couldn’t but, I just couldn’t leave him but had to.

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This is right before taking DJ to Children’s.

We were told that the transport team would be there at 8:00 to take him and that Terry had to follow him to fill out paperwork and get him checked in at Children’s.  They had started him on prostaglandins to keep his duct (“ductus arteriosus“) open as that was the only way he was getting oxygen to his body.  The down fall to the medication was apnea, so they intubated him for the trip.  They brought him down to my room before they left.  He looked so small on that stretcher in the incubator.  All the machines, the beeping, the looks on their faces as they took him … it was too much and I started crying.  Terry left with them and I made him promise to come back and tell me if he was alright.  At that moment a phone call wouldn’t do I had to see his face.

The next morning there was nothing I could do to keep my mind off of DJ.  I had told Terry to go to work so he could keep the time off he had for surgery day and for when DJ would come home.  I knew I was going to need help.  One of my OBs came in and sat on my bed, he apologized for not seeing this in any of the ultrasounds.  He explained that once he had heard what was going on and knew what to look for he saw it, barely.  I didn’t blame him, I told him it was fine and that everything was going to be okay.  I don’t know if I truly believed that or not but I think it was in that moment I put on my “brave face” and started making a few calls to friends and relatives.  Mom came over after seeing DJ and told me she had talked to a few of the doctors and they wanted to have a meeting the next morning.

Try as I might they would not let me leave so I asked mom to go in my place with Terry.  It was determined that DJ had 3 holes in his heart, 1 large and 1 small VSD and 1 small ASD, and the pulmonary valve had never opened.  They were calling him a Blue Tet, I found out that was short for Tetralogy of Fallot with Pulmonary Atresia (ToF/PA).  The surgeon, Dr. Francois Lacour-Gayet, was going out of town but would be back Sunday and wanted to do the surgery Monday morning.  I was relieved to hear this because I would be there with him and my family instead of being trapped in my hospital room.  Terry and my mom returned and told me “the plan” for the surgery.  They were just going to put a shunt in so that his heart could get a little bigger so they could do a full repair.  I got a call from one of the surgeons that would be helping, Dr. Goldberg, and he explained more to me what would be happening.  I then tried to talk to Dr. Lacour-Gayet on the phone but his accent made it impossible.  We all got a good laugh because of it; I would laugh later about it because I found out from the surgical nurse that he was as frustrated as I was.  One even said “that didn’t go very well.”

Later that day I would get a phone call from Dr. Goldberg, after another look at DJ’s heart with an echo they wanted to do the full repair.  They were fairly sure his heart was big enough since he was such a big boy, almost twice the size of an average cardiac baby.  I think the blood must have drained from my face because my mom was at my side in a heartbeat; she wanted to know what was going on.  So I asked if he would be willing to explain it to her so I didn’t mess it up, which he did.  So it was decided that they were going to do a full repair on his little heart and if all went well we wouldn’t have to do another surgery for at least a few years.   This was good news, finally.  Even better news, I could leave the hospital if I wanted.  With a lot of convincing from my mother, grandmother and Terry I stayed one more night.  I missed Harrison, I felt bad for leaving him so long, not that he noticed his Aunt Erin and Uncle Sean were keeping him busy.  I missed my house and my bed and real food but, I knew staying was best for my health and I needed to be strong for the next few days to come.

My Surprise that night, Terry brought Harrison out to see me.  They brought a DVD player and some movies with them.  We had dinner, watched Monsters Inc., and had popsicles. We tried to explain to him a little what was going on with his little brother.  He told us that everything was going to be fine; I kissed them good night and sent them on their way.  I only wish I could have been that positive.

Saturday afternoon I was released.  I had both of my OB-GYN’s come in and warned me about driving and walking too much and making myself too tired, both knowing very well that I was going to be stressing and not caring about my pain and comfort.  With one stop to pick up my prescription for pain killers, I made Terry take me to Children’s.  I wanted to see my baby boy that I hadn’t seen since they took him away the day he was born.  It was my first time to the new Children’s Hospital.  It was beautiful. Terry had told me that it really didn’t have that hospital feeling until you got into the rooms.  Man, it was true.  We had Harrison with us and had to get approval to have him come into the CICU ward.  The head nurse was going to fight with us till the geneticists wanted to talk to both my husband and I. I wasn’t about to leave my 6 year old out in the halls by himself.  It was the first time Harrison saw his little brother.  I remember he dragged a chair over to his warmer and just stared at him.  How scary that had to be for him.  Here’s this little person who you’ve been waiting for and he’s hooked up to all of these monitors.

The geneticists (who name I cannot remember) wanted to do a  FISH test.  He thought maybe his heart defects were due to a genetic anomaly, maybe Goldenhar Syndrome or DiGeorge Syndrome.  Neither of which either of us had ever heard of.  He said they didn’t like labeling kids but it was something to look into because of other things that went with some syndromes.  He then stated that he thought it would be Goldenhar’s just because Terry had some of the traits, an unevenness in the face.  I know I stared at Terry until it probably made him nervous trying to see it.  I did a little but nothing like he was describing.  We told him he could run his tests.

Another doctor came to us shortly after the geneticists left.  He introduced himself as Dr. Goldberg, a face to the name.  He had seen us and wanted to meet me and see if I had any questions yet.  He also wanted to know if we could come in the next day to go over “the plan” and sign some papers.  You know those silly surveys that go around that have the question “If you could have any super power what would it be?” Well right then in that moment I wanted the power to read his thoughts.  I wanted to know what he was thinking as he looked at my little family.  Was he thinking “poor people, this is going to be hard” or “Don’t worry, we’ll fix DJ right up for ya” I wanted to know.   We said our good nights to DJ and took Harrison home.

Going home, one would think it would be a joyous occasion.  I felt empty, lost, confused.  I was missing a vital part of my family.  It’s the hardest thing I’ve ever done, leaving my kids at the hospital.  I needed to eat and get some sleep so that I could feel normal again and be able to follow the conversations to come.  I think the only reason I slept that night was because of the pain killers.  I ran so many different scenarios for Mondays surgery in my head I was dizzy.  Sunday morning came and we dropped Harrison with my mom and made our way to the hospital to talk to Dr. Goldberg.  I was anxious to see how DJ had done that night.

We met Dr. Goldberg that morning in the CICU where DJ was.  He sat us down and began to explain “the plan” to us.  They were going to try to patch the two VSDs and the one ASD and try to use a third of a bovine valve to open up the pulmonary valve.  Only a third, because they hope the other parts that were still “human” would compensate and grow with him a little longer then the full bovine valve being inserted.  If it came to it they would just use the full valve.  Yet I think the worst and scariest part for me was the bypass machine.  What if his heart wouldn’t start back up? There were tons of waivers and consent forms to sign.  At one point I found myself thinking this was worse than trying to buy a car.

We went back to moms to spend some time with Harrison.  We weren’t sure what was going to happen in the next twenty-four hours and I wanted to be close to all of my support.  Harrison was going to spend the night there because we had to be at the hospital at 6:30 in the morning if we want to spend any time with DJ.

Again I found myself holding DJ until I couldn’t, but this time it was because they were taking him into surgery.  We were told the first night is the worst and that we probably wanted to stay at the hospital, so I went and got us a room for the night.  After we found our room and put some of our stuff down we went out into the waiting area where, over the next few hours we were joined by family and friends.  Ester, the OR nurse, would come out and update us when anything critical happened.   We knew when the central lines were in, when he went onto bypass, when they were piecing his heart together, and when his heart was beating again because he was off bypass.  I think when I heard that is when I started to feel calmer about everything.  DJ was in surgery for 6 hours but they were able to do the full repair.  We were told that they weren’t able to close his chest because of the pressure it put on the heart and that he was bloated from the bypass machine so they put a gortex patch over the opening and would close him up later.  Both holes in the lower chambers (VSD) had been repaired, the top hole (ASD) they had left open a bit, kind of like a pressure valve, and they had been able to open the valve and only use a third of the bovine patch, all exactly what they had wanted to do.

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Only a few hours post-surgery..the patch still present (chest open)..

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The Thursday after surgery. Chest all closed! Look at this warrior. He’s amazing!!

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All 3 chest tubes gone!

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Mommy getting to finally feed him for the first time!

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No more breathing tube! Just some good O2!

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Look at all of those medicines!

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Grandma holding DJ for the first time.

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Sponge bath and then BUSTING OUTTA THERE! Yay!

Mom was with me when I got to go back and see DJ for the first time after surgery, I wanted her to be able to see him and she had to leave to help with Harrison back at her house.  One of the nurses made sure he was covered up before we made it to his bed.  There were so many tubes and wires and machines, it made him look so small.  They had given him a paralytic so he didn’t pull at his tubes and IV lines.  The nurse asked if I wanted to see everything, I nodded and then held my breath.  I thought I was prepared but, I wasn’t.  She pulled the blanket back and I just sobbed.  Thank God my mom was with me, she got me calmed down and over that initial shock (defiantly one of those ‘I want my mommy’ moments) and we started asking questions.  I found out what all the tubes were, where all the wires were going, and to watch his tiny heart beat through the patch was amazing.  Here was the cause of all our problems beating away under a thin layer of plastic, and I could watch as I had once before on the ultrasound screen.  What a miracle and hardship one little heart could be.

Terry came in after mom left, I wasn’t sure if he wanted to see everything so I covered him back up.  When he came up to the bed he said he did want to see so I tried to explain everything to him but the nurse had to help.   I think we were all waiting for Terry to crack but he never did.  I was surprised.  The following are Terry’s thoughts in his own words.

As I was about to walk back to see DJ after his surgery I took a moment as I washed my hands, a required task for the CICU that we were getting all to use to, I prepared myself for seeing something that no parent should ever have to see.  When I first saw him, I was relieved it, the surgery, was over.  I was also surprised that he did not look as bad as I had imagined.  Don’t get me wrong, it was bad, but just not as bad as I thought it would be.  He laid there sleeping, and looked to be under very little distress.  His breast was split down the middle and spread about four inches, with a piece of thin gortex stitched into his flesh.  You could see his heart beating and lungs filling.  I remember thinking how crazy the first person must have been to look at a heart that small and say, “Hey, I could fix that!”, and how grateful I was for them trying.  It was like the calm after the storm.  Things were going to be ok, or at least that is what I was going to keep saying.  Now we just had to wait for the normal to start and get to know him.  Only five days old, and he has been thought so much.

Later everyone asked me why I never cracked.  I told them I had to keep thinking, they know what the problem is and they have a plain to fix it. It was the only thing that kept me claim.  If they would have said we don’t know what is wrong or we don’t know how to fix it, I would have lost it.  Kind of cold, maybe, but I had more than just me to worry about; I had a whole family to be there for.

That night we stayed in one of the parent rooms.  I got up a few times and went to go check on DJ.  I know they would have called us if anything bad was happening but I still had to go see him.  He was having arrhythmias (irregular heartbeats) all night long but, they had expected that.  Terry went to work the next day and I stayed to watch over my baby.  My aunt came to visit later that day and I went home with her to be with the other half of my family.

Every morning my mom would pick me up, help me get Harrison to school and take me out to the hospital since I had again, told Terry to go back to work.  Every day he seemed a little better.  We had visitors a few days but I mostly told people to wait till he was home.  I didn’t want people to see him like that.  It seemed like there was another tube gone or another drug missing every morning we came in to see him.  Thursday they were finally able to close his chest, Friday the chest tubes in his lungs came out,  Saturday the lead wires that went into his heart came out (in case they needed to shock him back into rhythm, which they never did), Sunday the chest tube in the pericardium came out.  The biggest hurdle left was to get the breathing tube out and get him breathing on his own again.  That came on Monday and I finally got to hold that little bugger again.  A whole week had gone by without him in my arms.  Next steps get him off a lot of medication and get him to eat.

He was getting better color every day, but he really didn’t want to eat.  We tried bottles and nursing.  He didn’t want either so they had to put a feeding tube up his nose, he didn’t like that.  Things were going great.  Then the day before Halloween we were told that we were going to be able to take him home, my own little treat.  We watched all the videos, had him tested in the car seat, I had the cutest little pumpkin outfit all picked out.  I was ecstatic.

Halloween morning we went to school with Harrison to see his parade and party.  I was walking on air.  Then my phone rang, sometime during the night DJ had gone tachycardic (a high heart rate that won’t come down), they couldn’t let him come home till they knew why this had happened or it went away.  I had to excuse myself to the nurse’s office at the school so I could just cry in peace.  I’m sure I scared a few people.  We made our way out to the hospital anyway.  They transferred DJ to the ninth floor CPCU (Cardiac Progressive Care Unit) where we just waited.  I felt extremely frustrated at this point.  They had taken him off the oxygen in the CICU and told me that as long as his O2 levels stayed above 87 they weren’t going to worry about it (because of the small ASD they had left).  The first thing they did when they got him in his room on the ninth floor was put him back on oxygen but no one could answer me if that was the cause of the high heart rate.  I thought I was going to pull my hair out trying to get answers.  I had been spoiled in CICU where we had a nurse around all the time and I could get my questions answered right away.

The doctors and nurses were still concerned that he wouldn’t eat.  He would just play with the bottle for a while and that was it, the rest would go into the feeding tube.  He had a certain goal he had to eat before he could come home.  He also wasn’t gaining weight so they fortified what they gave him.

November 3rd, what a wonderful day.  We finally got the okay to go home.  DJ was being discharged!  We would go home with Lasix, oxygen and the feeding tube so I got the lesson on how to change and place it.  I felt bad sticking that thing up his nose but if it meant we were going home, I would do it.   We packed up and got out of there as fast as we could.  I kept looking over my shoulder waiting for someone to come running after us saying they made a mistake and we had to come back.

When we walked into my mom house to pick up Harrison we were “attacked” by my little sister (14), it was the first time she had seen DJ.  She wanted to hold him so bad and she was so happy to finally meet him.  My brother (also 14) would only touch him with one finger.  It was funny to watch.  We gathered our boys and went home as a whole family for the first time.

We had a small fight with an infection in his incision but other than that there haven’t been any complications.   My Christmas present was a mostly normal baby, we were off all medications, he was sleeping though the night, and there was no more oxygen or feeding tube.  It was the best thing I could have asked for.

Today I sit and watch my now 5 year old boy run and play and I’m thankful for every day. His cardiology appointment is coming up at the end of the week, he will have his usual EKG and Echo done and then for the first time we will sit with the doctor and discuss a cardiac MRI and a Holter Monitor for 24-48 hours. I live to hear his laugh and love every smile I get. So we are still laughing through our journey and learning new things every day!”

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DJ with his big brother!

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Heart check-up time! Look at how good he’s doing!

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The love that these two brothers share..it’s hard to not see it!!

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pulse ox and smiles : )

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The Reeder Family 🙂

Wouldn’t you agree that this dude is a true superhero? And it’s always a show of bravery for any parent to go through such a rough time and be able to share their story. Jenifer, thank you for that! As we know in the CHD world, stories never end, they always get bigger. I love this family for numerous reasons. Both of our warriors are the same age! We also live in the glorious state of Colorado. Aaaaand we are very familiar with Children’s Hospital here in Colorado. But most of all, this family enjoys the time they have together and it shows! It’s impossible to not feel inspired by this family and what they’ve gone through.

Keep on rockin’ DJ!