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        February 7-14 is Congenital Heart Defect Awareness Week. To help raise awareness, spread knowledge and share the effects of this disease, Jayme of The Paper Deer Photography Blog, Christie of Lemon Squeezy Home and Kierra of The Irvine Home are each sharing one story of a child with CHD every day to showcase the trials, triumphs, journey and heartache of this devastating disease. We invite you to read and share this project to further our voices. Thank you. #Facesof CHD


        Feb 14, 2015 – this is sweet Evanna’s story…

        Our heart journey started with a simple routine ultrasound. In November 2013 at 19 weeks pregnant, we had an appointment for a regular detailed ultrasound, but all I could think about the fact that we were about to find out if we were having a boy or a girl. I had made plans for a gender revel party for later that evening, and was giddy with excitement to find out what we were having. I was surprised at how long the appointment took, and looking back, I definitely felt like the ultrasound technician took forever, especially on the baby’s heart. We were brought into a private room, and told to wait for the radiologist that would be with us shortly. I assumed that he would just come in and tell us that everything a-okay, and send us on our merry way with gender results in hand. The radiologist walked in and stated that there was a problem with the babies heart, and that we needed to come back the very next week for fetal echocardiogram done by a pediatric cardiologist. My husband and I were in shock. We were two healthy individuals with no medical issues, and had no trouble conceiving.

        We left the office without saying anything to each other as we each digested the news. We cancelled the gender party, and once we were ready, we opened the envelope to revel that we were having a baby GIRL. The following week, it was confirmed at the fetal echocardiogram, that our baby would be born with Pulmonary Atresia with a VSD.

        My pregnancy continued without any further complications, and weekly ultrasounds and obstetrician appointments became my new normal. As the pregnancy progressed, they started to suspects few other things with the heart, but we would have to wait until she was born before we would have a concrete diagnosis.

        At 36 weeks pregnant I relocated to Edmonton, Alberta and moved into the Ronald McDonald House. Though we were from Calgary, home to it’s own children’s hospital – only two hospitals in Canada could deal with the complexity of our baby’s heart, and pediatric cardiology was not something that our local children’s hospital could deal with.

        After being induced at 39 weeks, Evanna Verena Irvine was born via emergency c-section on April 29, 2014. She was taken by ambulance to the Stollery Children’s Hospital with my husband following, while I stayed behind, healing from my own surgery. The few days following Evanna’s birth were a bit a of a blur. They did a CT and ECHO on Evanna, and confirmed their suspensions that Evanna’s heart was much more complicated then initially thought. She was officially diagnosed with Tetralogy of Fallot, with Pulmonary Atresia, VSD, ASD and MAPCAs. Due to the MAPCAs, we were told surgery would have to be put on hold, and if they didn’t grow, Evanna would be considered terminal. Her heart is so complex, that it’s actually intertwined with her lungs, making it impossible for even a transplant to be an option.

        Originally, I had prepared myself for a surgery to be done within the first few weeks of Evanna’s life, followed by a couple of months in the hospital before we got to bring her home. Now we were being flown back to Calgary, were we spent just one week in the NICU and discharged home.

        We spent 5 amazing months at home where Evanna grew, thrived and did extremely well. We also confirmed that a mircodeletion on her 22 chromosome called 22q11 (also known as DiGeorge Syndrome) is what caused her heart defect, among a few other minor issues. Considering her very complex heart and DiGeorge Syndrome (it’s the second most common chromosomal defect next to Down Syndrome), our medical team was constantly amazed at Evanna’s progress and growth.

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        On October 6, 2014 we handed Evanna over into the surgical teams arms, as she underwent her first Open Heart Surgery. The surgery went well, but since then we’ve experienced a few bumps on our journey home. Our 2-3 weeks in hospital has now turned into over 4 months in the PCICU, 1 code blue, 4 additional surgeries – including a 2nd open heart surgery, 2 ICU transfers, multiple blood transfusions, drug addiction, and 6 failed extubations – as we’ve had major issues taking the breathing tube out. Evanna has developed Tracheomalacia (weakened trachea), and so she requires extra pressurized air to keep her airway and lungs open, and has had to be supported by a ventilator for over 4 months. While we’ve come a long way, and her trachea has slowly gotten a little bit stronger, her body and lungs have become incredibly weak from being bed ridden and intubated for such a long time.

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        It has been an incredibly long year for our little family, and this chapter in our lives is far from over. We still don’t have an idea of when we’ll be able to bring Evanna home, and whether or not she’ll need a tracheostomy for a period of time. Evanna faces many more surgeries later on in her life, and our lives have been forever changed because of this diagnosis. She’s a true fighter, and continues to amaze us with her strength considering everything she has gone through in just the first year of her life. It’s been a difficult journey, and being in a different city, away from our closest family, friends and supports hasn’t been very easy, and would put any marriage to the test – but one thing I’ve learned, is that “we can do hard things”

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        What does CHD Awareness mean to me?

        CHD Awareness means people knowing the basic facts. I think people don’t realize just how common they are, nor how many people they effect (both the child and their family), and that it can happen to anyone! My husband and I were two seemly healthy people with no major health issues – after we dotted all our i’s and crossed all of our t’s, we decided to start a family. It threw us for a major loop when we initially got Evanna’s diagnosis, and it has turned our life upside down. There is no cure, and surgery is not a “fix”. Major advancements have been made in the CHD world, and there are more people living into adulthood with heart defects, but there is still much more work to be done. Too many children today still die from congenital heart defects, and it’s incredibly heart breaking. We have no idea what Evanna’s future will look like, nor how much time we have with her in this life, but an additional advancements may just give us that – more time. People ask me all the time what they can do – well here’s my answer: donate blood, become an organ donor, volunteer your time at your local hospital and Ronald McDonald House. Educate yourself, and if someone close to you receives this diagnosis for their child – be there for them. Reach out and ask what you can do. It’s been the smallest things that have made all the difference while we’ve been in the hospital with Evanna.

        – Kierra (Evanna’s Mom)

        Please continue to

        Lemon Squeezy Home to read about Hudson

        +

        The Irvine Home to read about Ruby

         


         

        Feb 13, 2015 – this is Beckham’s story…

        Hi, we’re the Moreno family and we live in Dallas, Texas. Our sweet boy, Beckham, is 2 years old. We are so grateful to share his story with you.

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        On Mother’s Day 2012, after six and half years of marriage, Beto and I found out we were expecting our first baby. We were beyond thrilled! It’s wild to think that before I even knew I was pregnant, Beckham’s little heart was formed.

        My pregnancy was pretty normal leading up to our 20 week ultrasound. That was the day we found out we were having a boy, and it was also the day we found out there might be a problem with Beckham’s heart. The sonogram technician could not see all four chambers of Beckham’s heart, but she chalked it up to him wiggling a lot and decided to give him another month to grow. We honestly weren’t very concerned at this point. We were very trusting that he was, in fact, moving a lot during the sonogram.

        One month later, all four chambers of Beckham’s heart were still not visible, and we were referred to a cardiologist for an echo to get a better picture of his heart. Almost immediately, Beckham was diagnosed with Hypoplastic Left Heart Syndrome (HLHS), meaning only half of his heart developed. We held each other in that cold, dark room and wept. We were shocked, terrified, and overwhelmed. The entire day was a blur. We were walked through the details of Beckham’s heart defect, the three surgeries required to save his life, and the potential need for a heart transplant. We were, however, reassured that 90% of HLHS babies make it through their first surgery successfully, and that most of these children are very bright. All I could think was “what if he is the 10%?”

        The next 12 weeks were filled with anticipation, anxiety, and hope. Somehow I managed to not search the internet for other HLHS stories. I just knew I needed to focus on our story, and let hope lead the way. We did, however, decide to share Beckham’s story right away. We were hoping for an unthinkable miracle, and knew we could not face this life-altering situation alone. Family and friends rallied around us and created #beatsforbeckham. We walked through days of pure stress and anxiety yet received so much support at the same time. I desperately wished I could stay pregnant forever. I was uncomfortable, of course, but I fiercely desired to protect my baby. I wanted to keep him safe, and while he was in my belly he was as safe as he would ever be. The birth plan was another troublesome area for me. Before learning about Beckham’s heart defect I was meeting with midwives and doulas in hopes of having a home birth. I wanted a completely natural experience. I wanted to breast feed. I wanted skin-to-skin. I was told I could not have any of those things. I was devastated.

        Beckham was born on 12.21.12 weighing 5lbs 13oz, and surprising us all by coming four weeks early. His birth was such a gift. It may not have been exactly what I had always imagined, but it was completely natural and only four hours of active labor. I was able to hold him on my chest for one minute before they whisked him away. After he was bundled, they also let us take a family photo. We were so grateful for all of those little (yet huge) details!

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        Beckham underwent his first open heart surgery, the Norwood Procedure, at 12 days old. I will never forget that day. We arrived at Children’s early in the morning, at least an hour before sunrise, and took turns holding our sweet boy. I traced his perfect chest over and over and cried a thousand tears. I knew he needed the surgery to save his life, but it was incredibly overwhelming to hand him over and watch him be wheeled into surgery. We followed his team as far as they would allow us. As the doors shut behind him, we stood there in the middle of the hallway, again, holding each other weeping.

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        Surgery days were the longest. We were surrounded by friends and family in a small room waiting next to the phone for updates from the OR. Hour by hour tension was high as we waited. Beckham did well with his first open heart surgery. He recovered very well minus one small setback. After seven weeks in the hospital, six of them in the cardiac ICU, we were able to take our sweet boy home.

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        As a new family of three we enjoyed seven wonderful weeks at home. These weeks were filled with normal things like bottles, diapers, and sleepless nights. They were also filled with doctor appointments, scheduled medications, and keeping track of all of Beckham’s vitals in a giant binder for our Safe At Home program. Thank God for Safe At Home! With the guidance of SAH and our cardiologist, we admitted Beckham to Children’s due to worrisome symptoms of unusual fussiness and vomiting. This was April, 1, 2013. Beckham was three months old. An echo of his heart confirmed that his tricuspid valve had severe regurgitation. Within a few hours our son had a cardiac arrest requiring nearly an hour of CPR and ECMO life support.

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        I remember sitting in the small waiting room in complete shock. From 8pm until 1am we sat in that tiny room, praying they could save our baby’s life. I could hardly process the words being spoken to us in those hours. It was one of the most terrifying moments of our life. After eight days on ECMO, Beckham underwent open heart surgery to repair his tricuspid valve. This acute change to the tricuspid valve is something no one (on Beckham’s care team at Children’s in Dallas) had ever seen in a child before. We were so thankful for the brilliant, creative skills of Beckham’s surgeon.

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        The weeks that followed this surgery were filled with times of fear and great hope. We watched and waited for Beckham to heal, wake up, and breathe on his own. Over time we began to see the severe extent of injury his little brain suffered during CPR. Beckham lost all purposeful movement. He cannot visually track, we are unsure of the clarity of his hearing, he cannot swallow, he has no gag reflex, and so much more. Due to the extent of injury to his brain we were told that he is no longer a candidate for further cardiac intervention. After just over two months in the hospital we were able to take Beckham home on hospice care. In May of 2013 Beckham was given four to six months to live.

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        Today Beckham has been home with us for TWENTY months! We are shocked and in awe of the courage and fight Beckham has to live. Our days are not easy. We have in home nursing during the night so that Beto and I can sleep. Beckham requires four liters of continuous flow oxygen to keep his O2 sats in an acceptable range. He suffers with seizures all day, every day. He is fed through a g-button, and we are constantly suctioning his saliva. He has in-home therapy and hospice visits weekly. Leaving the house is difficult. We stay home most of the time to avoid germs, especially during cold/flu season. This journey with heart disease has been anything but easy. Sometimes it is hard to wrap our minds around the fact that our son is in that 10%. He has outlived his prognosis, but his little heart cannot handle the stress of living without future surgeries. We take it a day at a time. Some days are filled with fear and unending tears. Most days are filled with joy that we get to share another day of snuggles with our Beckham.

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        What does CHD awareness mean to you?
        CHD awareness is a way to let other people see the reality of something they may never experience first hand. By sharing our stories we become a voice for those that cannot speak for themselves, the innocent babies and children of CHD. Over the past couple of years I have worked really diligently to educate myself and be an advocate for my son. Sharing his story and spreading awareness is part of that. I want to honor the bravery, courage, and determination Beckham and all of his heart buddies possess as they fight for their lives. I want people to see our reality, but more importantly, I want them to experience the beauty and power of hope that can be found in the struggle. Thank you for taking the time to read our story. xo

        -Lindsey

        You may follow along with Beckham’s story on IG @beatsforbeckham and online at Beats For Beckham

        Please continue to

        Lemon Squeezy Home to read about Logan

        +

        The Irvine Home to read about Tytan


         

        Feb 12, 2015 – this is Callie’s story…

        Callie is now 21 months old and has an identical twin sister. We live in Herriman, Utah. Callie has already endured more in her short amount of time on earth, than most will go through in a lifetime. While in the womb, the doctors found that she and her sister had developed twin-to-twin transfusion. The amazing thing about being monitored extra closely for that is, they were also able to detect Callie’s congenital heart defect-Pulmonary Atresia with IVS. Unfortunately at 34 weeks, I got preeclampsia and had to be life-flighted to the hospital where I later abrupted and delivered our girls via emergency c-section.  My husband almost lost all three of his girls May 1, 2013; a day that will forever be remembered for the birth of our daughters but a day that also changed the course of our lives forever.

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        Callie weighed 4 pds 12 ozs at birth and her sister Brooklynne weighed 3 pds 5 ozs. After being revived and stabilized, Callie was then take from her sister and life-flighted to Primary Children’s hospital. Three days after she was born, she had her first heart surgery. Three weeks later she had her first open heart surgery that lasted seven hours. She ended up staying in the NICU/hospital for 47 days after she was born. Since she was on a ventilator almost the entire time, she ended up going home with a feeding tube and oxygen. We also had a nurse that would come to the house along with: speech, occupational, and physical therapy. Many simple things that we take for granted, Callie had to learn to slowly do-including learning how to breathe, suck, and swallow.

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        Callie has had many other doctors’ appointments and hospital stays. She also had to wear a helmet because the back of her head was flat from being hospitalized-where she had too many tubes that prevented her from really moving. More recently Callie went her second open heart surgery that lasted just over eight hours. She miraculously was released after six days. We thought we were in the clear until a few days after being home-she stared to get really swollen, her face started to turn a purplish color, and her breathing was minimal. We ended up taking her to ER and she was admitted -we ended up being at the hospital for four and a half weeks due to complications from her surgery. While at the hospital the music therapist and I wrote a song for Callie; this song helps emulate how much of a warrior she really is.

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        Callie’s Journey is far from over -there are days it feels like we are back at the beginning. She still wears oxygen at nights and unable to walk on her own.  We still have to be very careful about going out in public places and also making sure those who visit aren’t sick.  Every doctors/cardiology appointment, every echo, and every medication she takes- is there to help in her fight for survival. Callie will continue to have surgeries throughout her life but as the cardiologist said-“we’ve got to just think of them as tune ups that will help her heart last longer.”

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        There have definitely been highs and lows to Callie’s “adventure”. The pain of not being awake for the birth of my babies to be able to hold them on my chest or have my husband in the room to cut the umbilical cord; yet in the same breath, never thinking I would get to tell Callie how much I loved her but now I get to hear her say-“mom.” Having Callie and Brooklynne be separated for months only to have them pick up where they left off when they reunited. The tears in Callie’s eyes from all the pain but the smile on her face from all the joy she has found in life. Is it hard-YES. Is it worth it-YES! What a HUGE blessing it is to have Callie as a reminder that the journey isn’t over-it has just begun.

        Follow us through: FB-Tammy Neff Alsup, Instagram @talsup or twitter-#weheartcallie

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        What does CHD Awareness mean to me?

        I think CHD Awareness is two-fold: First-It is about spreading knowledge to others who may not be aware. In November of last year, I had a friend who lost her baby girl far too soon due to a heart defect that went undetected/misdiagnosed. With the odds of 1 in 100-I cannot think of a better cause then getting the word out about something that can ultimately save a life. I feel very fortunate in our case that because of close monitoring, we were able to get the help that was needed in order to keep Callie alive. Modern medicine has come a long way just in the past 10 years for Callie’s diagnosis; I think it’s through CHD awareness that it has evolved.

        Second-It’s about helping others who are also going through challenges and getting strength from them as well.  Coming home from the hospital was at times very lonely. While in the hospital-you are put through a roller coaster ride of events and stuck on survival mode for so long then you are faced with reality back home where everything is supposed to go back to being “normal”. The true is-it’s never going to be the same. Lessons are learned and in our case-Callie’s life was spared. I hope I can help others feel the hope- that at times, has felt like a foreign word to me.

         

        – Tammy (Callie’s mom)

         

        Please continue to

        Lemon Squeezy Home to read about Selena & Jasmine

        +

        The Irvine Home to read about Ava


         

         

        Feb 11, 2015 – this is Gentry’s story….

        Our little man, Gentry, is one year old and we live in Gilbert Arizona. He is a CHD warrior and this is his story.

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        This isn’t a post I have been wanting to write. In fact, it pains me to relive these moments and share them. I didn’t post anything online about what I was going through when we were going through it when he was born. I’m not quite sure if that was out of MBS – “Mama Bear Syndrome” and wanting to keep things hidden on behalf of my son, or if it was out of the pure fact that I didn’t even know where to begin. I’m thinking it’s more of a mixture of the two. I have released a little bit here and there… But this is my chance to get it all the way out and maybe offer some noteworthy information to some Mama that might not know these things (like myself) or to that Mama that needs a little bit of “yeah I was there and it’s going to be okay!”

        To give you the full glimpse into this part of our lives I will have to give you a bit of a background story with my pregnancy and labor.

        My birth plan was special. I hired a Doula. I wanted to brave the whole birthing process sans medication to the most that I could possibly endure. I knew where the birthing sauna was in my maternity ward. My doctor was briefed on this plan and was accepting. My pregnancy on the other hand was everything but planned. I was told 5 months prior to conceiving that I could not get pregnant by a Medical Naturopath. For more reasons that I can list here, he was wrong, and I wanted to prove him wrong. The beginning of March 10th, 2013 I found out I was 5 weeks pregnant. To say I was elated was an understatement. It was also terrifying. The previous words from that doctor radiated through my body and I just knew something was going to be wrong since I got pregnant. He did tell me I would miscarry right away so that’s what I had to believe, right? Wrong…

        We decided to name our son, Gentry Hudson.

        Fast forward through doctor’s visits and ultrasound visits, all was in the clear. No issues what so ever with me nor Gentry. We passed my 20 week mark and each day one of those previous negative words would lift from my shoulders… “We got this baby boy, we got this” I would tell my little peanut every day. Around this same time I developed severe edema and some hip displacement issue. It began to be extremely difficult to walk especially to work in the hot Arizona summer. After an {almost} car accident landed me in the ER for pre labor contractions, my doctor felt it was in my baby’s best interest to be on bed rest due to all of these issues. From August to my delivery in November, I was laid out, in bed.

        I struggled with being depressed and tried to read blogs to uplift me and get my mind off of the fact that I can’t do anything or go anywhere. Blogs, reading, social media… helped… a lot.

        Gentry was breech. The entire pregnancy. {Insert crying face} He kicked my woman parts on a very constant basis. But this was not helping my special birth plan. We got down to the wire and my son was still breech. I chose to opt out of having my doctor manually move him and scheduled a C-Section. This was also about the time I came down with PUPPs. (PUPPs is a severe rash covering my whole body mainly where stretch marks accrue. There is no reason why it happens but it is common in first pregnancies with male gender) I didn’t think my body could get any worse but it obviously wasn’t handling pregnancy very well. I was counting down to my surgery date.

        Gentry was born November 13, 2013

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        I panicked pretty badly the day of Gentry’s birth. I had a panic attack on the surgery table which eluted for more fancy smancy drugs. I heard his cry. That’s all that mattered and I just craved to feel his skin. After I was all stitched back up and I finally was able to do skin to skin.

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        Pediatric Doctors came in quite a few times to check on Gentry as the normal protocol. Shortly after birth, one of the Pediatric Doctors notice him “retracting” when he was breathing, which meant he was having difficulty breathing and you could visibly see it. I was so loopy I didn’t even notice. Well they sent Gentry to the Nursery and hooked him up to a pulse oximetry monitor but that wasn’t showing any issues. They tested his blood and notice he had low blood sugar. The quickly gave him some formula without my knowledge and my doctor came in to tell me. I pretty much had a meltdown. I ran briskly walked over to the nursery as best I could, tears streaming down my face and asked if I can please feed my son to which they obliged. What I didn’t know was that this was prelude to what would happen in just a couple days.

        A chilly Monday morning we sat in the Pediatrician waiting room just like all of the other new parents, you know… on the “well children” side of the room. My little was in my arms and snuggled and warm. I walked into the exam room with him and my Husband. The Doctor came in asked a couple questions while we were undressing our bundle. Out came the stethoscope and the Doctor listened to his little heart. He stopped talking. He was moving the stethoscope all over his chest and then left the room. No words were exchanged. I looked at my Husband and said “that doesn’t sound good.” I looked down at Gentry and said “What’s wrong bub?”

        The Doctor came back into the exam room and said “while listening to your son’s heart, I noticed something abnormal like a murmur. I am not a professional in relation to the heart so I am sending you over to a Pediatric Cardiologist. I left the room to make an appointment for you which I have done. I need you to leave here now and go see him. He is just the next city over and is one of the best Cardiologists ever.” My eyes welt with tears. My heart was racing. I asked the Doctor “why they didn’t catch this in the hospital?” He stated that newborns change so much and what he heard today might have been misread as something else or they couldn’t hear it then.

        Neither I, nor my husband have any history of CHD.

        So we raced over to the Cardiologist. After an EKG and an Echocardiogram, the Doctor advised that our son had 3 holes in his little heart; ASD, PDA and the most critical, VSD. We were given Lasik to try to elevate some of the fluid around his heart to make it not work so hard. We were set with appointments, so many I can’t even remember how consistent they were. Felt like we were somewhere every day. If we weren’t seeing the Cardiologist, our Pediatrician wanted to see him. We were also advised by the Pediatrician to make sure that he doesn’t cry as much as possible. He needed to save as much calories as he could so that he could work on closing those holes. They stated if he doesn’t gain weight, if he doesn’t thrive, then he will immediately be sent for open heart surgery. I had to pump and add preemie formula to my breast milk; I became an exclusive pumper at that moment. They needed to monitor how much nutrition he was consuming. I had to keep a journal of every ounce he took and every diaper I had to change. I had my work cut out for me and so did Gentry.

        In addition to his CHD, he had torticollis, an anomaly along his upper jaw line, a lip tie, and tongue tie. All of which added to the new Mama stressors.

        The main concern was that the heart was creating tissue to close the VSD and that tissue had the chance of going in the opposite direction, away from the VSD, and closing off the Pulmonary Valve. If this happened, it would send Gentry right to the operating table. In addition, his left side of his heart was also enlarged which they had to closely monitor.

        Because of his CHD, we also had to be very cautious of him getting sick. We were GOLDEN until the end of February when he was just 3 months old. He contracted RSV, a common virus but something that could be very deadly to heart babies. We were able to stay out of the hospital until he contracted RSV. A very painful week in the Pediatric ward of the hospital. Full of nose suctions and breathing treatments, but my little warrior was ready to go home without surgery of any kind in one week.

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        I tried to maintain composure but it was just too hard at times…

        I’m sure it was a mixture of hormones and recovering from a major surgery but I couldn’t look into anyone’s eye without bursting into tears. I wouldn’t answer my phone. My friends would bring us meals and I just sat on the couch in tears. I didn’t want to talk about it. My baby was “broken” and I didn’t want people to give their sorrys… I didn’t want to hear it. I knew he could get better and I felt that I needed to keep him (and myself) in my Mama Bear bubble.

        Cardiologist appointments continued and my little squirt closed his PDA and his ASD all by himself  by 9 months. {Insert proud Mama happy dance} His strong little heart not only closed those two but just about closed his VSD. Last Echocardiogram in November 2014 showed a very miniscule hole left (which makes for a REALLY loud murmur). Our next Cardiologist appointment will be March of 2015. He is growing and thriving and maintaining weight. At his year checkup he matched everything on par to what is “normal” for his age.

        What I hope to gain from sharing Gent’s story with you is that not all babies that have a CHD are known about during pregnancy nor right after birth. You have to be prepared to ask the right kind of questions during your ultrasound and postpartum. It is also key to find a Pediatrician who is well versed and has been around the block a time or two. I am a big advocate for interviewing your Pediatrician before birth and selecting the “right one”. Another thing is that I want to express how much you are not alone. I was told to not research anything online for fear that I would see the worse which made things so very lonely especially since we had no history of this sort of thing. So I hope that if you are that Mama that did try to research, that maybe you will land on Gent’s story and find out that there is hope… That things can change… That those little babies are such STRONG human beings and are CAPABLE of so much at such a young age. And lastly, even though my son didn’t become a member of the Zipper Club, doesn’t make him any less of a warrior; his scars are beneath his skin. All CHD babies have their own background and story just as all CHD parents have all felt the same fear, terror, unknown, unsure, what ifs… We are all in this fight together. If it’s not in the Operating Room, it’s within our stories. Thank you so much for allowing me to share Gent’s story with you!

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        What does CHD Awareness mean to you?

        Before my son I had no idea what CHD even stood for. I think now that I have went through a CHD issue with my own child it has definitely made me more aware and vocal about CHD and the preventative steps a parent can take. It also means that maybe, just possibly, at least one CHD baby can be caught in enough time, like my little one did, and get the help and attention from a Cardiologist. CHD Awareness makes me appreciate all of the little warriors I hear about. I appreciate life from a whole new view.

        Please follow along with Gentry’s journey on Brianne’s blog here

        – Brianne (Gentry’s Mom)

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        Please continue to

        Lemon Squeezy Home to read about Emma

        +

        The Irvine Home to read about Sully


         

        Feb 10, 2015 – this is meridith’s story of hope and compassion….

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        My introduction to the heart world came in the most unexpected, but yet oh so perfect, kind of way. As rings true for most of us in this sphere, this world is not one we choose…but instead, a world that chose us. Always interested in orphan care and studying business and nonprofit management, I secured an internship with a special needs foster home in Beijing, China, after my sophomore year of college. I spent 3 months there, fundraising, reworking management systems, and falling head over heels with most of the children I met.  While there, I was also assigned to do one on one care with a little girl named Cai Wei. She had a very complex CHD (heterotaxy, HLHS, pulmonary hypertension, among others), and received the BT Shunt and Glenn while in China. She was the first child I had ever met with that complex of a heart defect, or really any of any kind, and I honestly was a little terrified to let myself love her. Her future was very uncertain, as doctors in China said there was nothing more that could be done for her heart, and I couldn’t imagine opening my heart to potential heartbreak. There was really no hope trying to avoid it, because Cai Wei completely captivated me, her brave half-a-heart working its way fully into my own. Saying goodbye to her at the end of the summer was devastating, and I prayed each day that a family would choose her soon, despite her scary sounding paperwork and uncertain future. I was convinced that God had used her story to completely change mine, and was committed to advocating for children with complex CHD, just like Cai Wei’s.

        In a turn of events that can only be described as miraculous, about 3 weeks after returning home, I happened onto an advocacy site for children in China waiting for adoption. I happened to see my Cai Wei’s photo, amid thousands of others, and knew in that moment that our story together was not finished. I called my parents and through my tears, explained all about this miracle girl. They realized what I knew all along…brave-hearted Brooke Cai Wei was meant to be ours…and 6 months later, our family was on a plane back to China to bring her home forever, no matter how long we would have her to love. Brooke’s heart needed healing, and my heart needed Brooke, and miraculously, six weeks later, Brooke was able to have the Fontan open heart surgery she so desperately needed. Her story has not been without it’s ups and downs, but today? Today she is a sassy spitfire little ball of courage; a girl who doesn’t let a single thing get in her way. (Brooke’s entire journey to our family can be found HERE)

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        Walking this heart journey hand in hand with Brooke completely opened my eyes to the CHD world, and I realized that I loved these heart warrior babies with everything in me. I moved to Iraq the day after my college graduation, and worked for a NPO that does heart surgeries for Iraqi children. As of October, I have moved to China, after accepting the position as the foreign director of an orphanage in Beijing that cares for very critical CHD babies from all over China.

        I am in charge of keeping this home running, but make it a point to be extremely involved in every aspect of these children’s care, from arranging their surgeries in the Chinese hospitals, advocating for them, staying with them while they are in the hospital for surgeries or other reasons, and monitoring their condition while they are at the home with me. I currently have 12 complex CHD kids in my home, and love each and every one of them as if they were my very own. I have several awaiting surgery, needed in the next few months, and many who are recovering. A few are palliative care, as their CHD’s are inoperable by China’s standards, but I hope and pray that they can someday…hopefully…be adopted, and get medical care, love, and the hope of a family until God calls them home. We have lost two sweet babies in the last few months, so journey has not been one devoid of sorrow. Within it all, however, there is hope. There is always hope.

        I remember too vividly the despair that is felt so palpably, knowing the child I loved needed a miracle to survive. While in Iraq, I hurt with each family, as they bravely handed their precious children over for surgery, not knowing what the outcome might be. Here in China, my heart breaks each time I sign those papers, authorizing these difficult repairs, and fully knowing the battles to fight ahead. When I hear that a child’s repair has been successful, I can almost feel the beat of Brooke’s newly repaired heart, again under my hand. I know in my soul the relief that is felt when I see that these children have been given a hope for life, and I hope beyond hope that their birth families somehow know that this child they carried…this child they longed for…this child they realized they could not provide for….I hope and pray that somehow, they know they are loved.

        I always say that I would never wish CHD on a child or a family, but I absolutely wish every family could have the chance to know these warriors the way we do. They are life changing…heart-interrupting…bursting in the most surprising way, and leaving your life forever changed. Each one of these brave ones has left their footprints on my life, and I know I will not ever be the same. For the rest of my life, I will advocate for, fight with, and love well these children that come across my path. I will seek out this road of “loving dangerously”, because these children…these heroes…are so worth it. This is what CHD Awareness means to me. This is it. Making the stories known of these heroes around us. Heroes in size 2T clothing, but they are heroes just the same. Their hearts may be small, but their stories carry far…sharing of strength, of hope, and of great love. It’s just our job to share, and what an honor that is. To heart warriors everywhere, and especially to my Brooke Cai Wei and my 12 now at home, thank you. Thank you, for healing my heart.

        My journey can be followed on Instagram: @meretoering or on my blog: www.risingtogo.com

         

        – Meredith

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        Please continue to

        Lemon Squeezy Home to read about Maya

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        The Irvine Home to read about Lourdes

         


         

        Feb 9th, 2015 – this is Haley’s story….

         Haley Grace Brown came into this world on a rainy day in April in Salt Lake City, Utah. She is now a vibrant, beautiful 10 year old girl. But things have not always been an easy ride. When Haley was born, we relished in the easy delivery and perfect sweet baby girl. In an instant our lives would change and never be the same again.  Haley struggled to eat and seemed very blue; we were blessed with an amazing nurse who listened to us and got her checked out.  Haleys heart was the size of an 18 month old and she was sent to Primary Childrens hospital right away.

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        The weeks that followed here a blur.  She was diagnosed with DiGeorge Syndrome (22q11.2) Pulmonary Atresia, Tetralogy of Fallot, and an ASD and VSD.  She had her first heart surgery at day 18 and spent days fighting for her life in the ICU. At age 6 months we flew to Stanford Lucille Packard Childrens Hospital where she went through her 2nd open heart surgery.  This surgery was a miracle and she was able to come home and start to grow and thrive. Haley was always such a happy baby and loved to be held and cuddled. Despite the constant doctor visits, therapy sessions and interventions she always gave a smile and was happy to be where ever she was.

        She learned to crawl then walk and finally spoke her first words. Though all milestones where late, we were happy we had them at all. At four she started to decline again and we had our 3rd open heart surgery to replace our valve on another rainy day in the Spring.  In true Haley fashion, the first words she spoke after she was extubated was she wanted a pink cupcake with no sprinkles. She always loved going to the hospital so she could order room service.

        The next couple of years brought us so much joy.  Her favorite song is fitting You are my sunshine, my only sunshine, you make us happy when skies are gray.  It was ironic that every time she went in for a surgery it would be raining and the skies were gray but she filled up our souls with sunshine.

        Haley spent her time at school (which has never been her favorite), singing and dancing, learning to play the piano and non-stop listening to Taylor Swift and Justin Bieber.  Though nothing comes easy for Haley but she does it anyway.  She has a determination and drive that cannot be matched.  To know her is to love her.  When she walks into a room she immediately wants to make friends with everyone, and with her quick wit and funny one liners everyone feels it a blessing to be her friend.

        Haley also has a gift to read peoples emotions and if she senses at all sadness or grief she is cuddled on your lap to see if you are ok.  My sweet child who has been through more than I could imagine is worried about me and others before her own wellbeing.

        Last Christmas 2013 Haley started to decline again and the next couple of months were spent getting test after test and cath after cath to see what was going on.  It was finally decided that her valve was failing again and would need to be replaced. In May she had her 3rd valve replacement.  Open heart surgery at 10 is a lot harder than when you are a baby and even at age 4.  We struggled mentally and physically but Haleys sunshine always shined brighter than the struggles within.  Though we still need our valve replaced as we get older and grow, Haley is thriving and surprising us all with her amazing warrior princess spirit. 

        CHD Awareness means so much to our family.  It is so many things in a lot of different ways.  It means a community of heart families you never knew existed before, people who would do anything for you and your child, and you for them.  Its amazing doctors and nurses who have dedicated their lives to saving your child (how do you ever repay that?).  Its random times when you see someones scar peeking out and you are instantly drawn to that person and want to hug and love them.  And its the times that random strangers pass on love and support to us when Haleys scar is showing.   Its teachers that care enough to learn about your childs heart defects and are genuinely concerned about your childs health and welfare. Its family and friends that spend thousands of hours caring for your other children, making them feel important and loved when there is no way you can leave the hospital. Its the hope and faith that parents have when we place our children in the arms of doctors and kiss them goodbye, placing our whole lives into their hands and trusting that they will do whatever it takes to save your child. 

                    Congenital Heart Defects are hard but at the same time amazing.  We would not have changed our journey in anyway.  Our family is stronger, our love deeper, and our spirits happier because Haley is a part of it.  May the Lord bless us all to learn what we need to from these sweet warriors who are born with special hearts. If you want to follow Haleys story please feel free to join us on Team Haley on Facebook and @chanbrown on Instagram. 

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        Please continue to

        Lemon Squeezy Home to read about Sara Kate

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        The Irvine Home to read about Addison


         

        Feb 8, 2015 – This is Haley’s story….

        It has been 9 months since I was introduced to the world of Congenital Heart Defects and became a “Heart Mom”. While pregnant with my daughter I had a fairly easy non complicated pregnancy  until my 34th week of pregnancy. At 34 weeks, after multiple doctors visits, tests and sudden trips to the ER, I learned I had developed Cholestasis of pregnancy and was put on disability leave by my doctor. I would need to be induced at 37 weeks to prevent any harm to my unborn daughter and have non stress test performed twice a week until I gave birth to her. The day my daughter was born I thought the worst was over and her brother, dad and I were so overjoyed with excitement; after nine months of waiting we finally had our little princess in our arms to kiss and to love. Haley was born weighing 6 pounds 6 ounces, 19 inches long and we were told she was perfect and healthy. On a gorgeous sunny Saturday afternoon in Southern California, we were discharged from the hospital and sent home happy and eager to enjoy our newest addition to our family.

        Our excitement was short-lived and quickly turned to disbelief, heartache and confusion 3 days later, when her dad and I were told at Haley’s wellness visit that we were being referred to a Cardiologist. Haley’s pediatrician told us while listening to her heart he heard a murmur and wanted us to get it checked out in case in could be anything serious. When Haley was only 2 weeks old we met with the cardiologist and had our world turned upside down. After some testing and an X-ray on Haley’s heart, we received the news that no parents can prepare for.  Although not caught during pregnancy or after delivery, Haley was born with a Congenital Heart Defect. The doctors discovered our baby girl had not only one, but two holes in her heart. With every heartbeat Haley was fighting her CHD. She was born with an Atrial Septal Defect (ASD) and a very large Ventricular Septal Defect (VSD) and the only way to repair her heart and give Haley a chance to grow and thrive in life would require her to have open heart surgery.

        That was the beginning of Haley’s journey. Countless specialist and weekly doctor visits were scheduled, numerous testings were conducted, multiple requests for lab work, three medications administered twice daily and every feeding and progress was charted. As her mother, I not only had the responsibility of caring for a newborn but also became her nurse, her caregiver, and her biggest voice. On a scale of 1-6 Haley’s heart murmur was rated at 1, meaning it was hardly audible by the doctors. She was also diagnosed with failure to thrive meaning she was not gaining weight like she should and was not even any where close to lowest percentile on the growth curve. The time that we should have been home enjoying our newborn was spent with doctor visits, tests, monitoring our baby for any worsening conditions and worrying about the future.

        Waiting for the day Haley would have surgery scheduled was nerve-wrecking to say the least. I had never heard the words Congenital Heart Defect prior to having my daughter so I learned as much as I could, as fast as I could. I was researching and reading everything I could on Haley’s condition and what to expect with open heart surgery. It was not always easy to read or see and I spent many days and nights in tears, my heart breaking for my daughter. I reached out to support groups I found online and social media and connected with other moms and families who were or had gone through similar situations.  I will always remember the love and support I received from each mom who reached out to me to comfort me, who shared their stories and pictures of their heart babies. I quickly learned that there was a large community of heart families and it was easy to become so connected to these strong babies who were fighting so hard.

        Haley open heart surgery was scheduled  September 17, 2014 at Children’s Hospital of Los Angeles. She was 4 months old weighed 9 pounds exactly and was still wearing newborn clothes and diapers. Her heart murmur was now rated at a 6, you could feel her heart pounding when your hand was on her chest and could hear her murmur if you put your ear to her heart. Her dad and I did not sleep that night and the car ride there was an especially silent one. We checked into admissions, had lab work preformed on Haley and waited to be called back by the nurses. We met with the anesthesiologist and it was soon time to hand our daughter over to a team of people we trusted to save her life. Tears ran down my face as I watched the nurses take my daughter away, thinking to myself I would do anything to be able to trade places with her. The waiting was excruciating and all I could think about was the moment I would see Haley again. Her surgery took about 2 hours and we received the news from her surgeon that everything had gone well and we would get to see her in about an hour. Her dad and I felt such a big relief knowing her surgery had gone well.

        Seeing Haley for the first time after surgery, hooked up with tubes and wires hanging from everywhere, her still little body laying on the bed I remember thinking she was still my beautiful baby girl. She had gone through so much already in her short life and I just couldn’t get over the amount of strength this little girl of mine had. We spent 3 days in the hospital which seemed like forever but I was grateful because I knew this was only a small amount of time compared to what other families sometimes have to endure. I will remember those 3 days for the rest of my life. The sound of Haley trying to breath on her very own for the first time after nurses removed her breathing tube, the cries of pain from my small daughter, the first time her dad and I got to hold her, the first time she was able to have a bottle and the first time she smiled at us. I will remember every tube, line and IV removed from her. I will remember the nurses who cared for her and who tried to comfort us as we just sat there and stared at our daughter laying there in her small hospital bed. I will remember all the love and support and we received from all our family and friends. Most of all I will remember all the other babies, children and families on the same floor with us; all of us fighting different fights but battling the same monster.

        The days home following her surgery were long and difficult. Haley would scream out in pain and her dad and I felt so helpless. All we could do was try our hardest to comfort her, hold her and show how much we loved her. Our biggest goal was to keep Haley healthy and free from any kind of infection. Her school aged brother stayed with family and her dad and I didn’t leave the house with her for about 6 weeks. It was a difficult time but we were grateful to have her home and on the road to recovery. My leave from work was quickly coming to an end and I was faced with the decision to resign from my employer of 9 years. I could not imagine leaving her so soon after surgery and her dad I decided I would become a stay at home Mom.

        Haley’s follow up doctor appointments with her surgeon and cardiologist all have gone well. It only took a short amount time after her surgery to see a change in her. Haley was no longer taking 2 hours to feed only 2 ounces, she wasn’t sleeping all the time, she had finally outgrown her newborn sizes and was only on one medication. Three months after her surgery Haley’s cardiologist took her off her last medication. She is now about to turn 9 months old  and weighs 14 pounds 8ounces. She is so happy, sweet and playful, you would never know all that she has been through and how strong she really is just by looking at her. Haley is crawling around the house now and getting into everything, she has 6 teeth, says “Mama” and “Papa” and we couldn’t be more grateful everyday, that she is here with us. Although her heart has been surgically corrected she will continue to see a cardiologist the rest of her life and I know as her mom I will continue to worry about her heart functioning correctly.

        Congenital Heart Defects have made such a huge impact in my life and my families both financially and emotionally.  Had I known anything about CHD before,  I would have questioned the nurse a little bit more the day after my daughter was born when I noticed her feet were purple. Instead I took the nurses general response of “Thats pretty common for newborns, I wouldn’t worry about it” as a valid answer. I would have asked for a pulse ox test just to be sure. Pulse oximetry screening is a simple bedside test that can identify some of these babies so they can receive prompt care and treatment. Timely care may prevent disability or death early in life. This test estimates the amount of oxygen in a baby’s blood. Low levels of oxygen in the blood can be a sign of a critical CHD. The test is done using a machine called a pulse oximeter, with sensors placed on the baby’s skin. The test is painless and takes only a few minutes. It may have not picked up on Haleys specific CHD but I will never know and always wonder “What if?” I often think about what could have been done to prevent this from happening to my daughter and to our family. I wonder if there was something I did or didn’t do. I worry if this will happen again and even worry about my own daughters future when it comes time for her to have babies of her own. The sad truth is there is no known reason why CHD occurs in 1 in 100 babies. There is no prevention and no cure for these babies born with broken hearts. Hospital visits, medications, surgeries, transplants, feeding tubes are all part of living with CHD.We will all experience one, some or all of these things as families with loved ones battling CHD. I am thankful for everyone who spreads awareness and I too find myself trying to spread awareness everywhere and anywhere, anytime I can. I would never wish any other family to experience the heartache that is CHD but I am grateful for a community that supports, loves, understands and informs one another of information we may learn as a heart family.

        At 2 weeks old my daughter brought me into a world I never knew existed and has made me fall in love with so many other families, babies and stories; most of whom I’ve never met in person yet still share such a strong connection. I share in the excitement with every milestone, the heartache with every hospital admission, the anxiety of every pre op appointment and the devastation every time I learn a baby has lost their fight with CHD. If spreading CHD awareness can help even one other family out, then we have made a difference. CHD is a part of our lives and we will continue to fight and spread awareness alongside every other Heart Family.

        photo-8-1 photo-3IMG_0193 IMG_0290 photo-7 – Heather (Haley’s Mom)

        Please continue to Lemon Squeezy Home to read about Kaitlyn and Mattingly

        + The Irvine Home to read about Garrett

         

        […] over to The Paper Deer Photography’s blog to read about Gentry’s CHD story and feel free to check out the rest of the stories being […]

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