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Becca Stanley
Becca Stanley • 2 years ago

This is our first and only child, our miracle, Eleanor Vivian. We learned of her CHD at 25 weeks of pregnancy. Her prenatal diagnosis was Critical Aortic Stenosis. We were told that she would most likely "spontaneously abort" and that we would have to suffer a stillbirth. Despite this bleak prognosis, she thrived the rest of the pregnancy and was born at 38 weeks via C-section, on October 12, 2010 weighing 7lbs 3oz. She was taken directly to the cath lab where her atrial septum was stented to relieve pressure in her heart and stabilize her until the next step was decided. Once in the cath lab, doctors realized that her defects were actually much more severe than they originally thought. They re-diagnosed her with Shone's Complex with an intact atrial septum. Her doctors went back and forth trying to determine the best course of action. It was finally determined that the surgical options were just not good enough, and that a heart transplant would be her best option. At 10 days old, Eleanor was officially added to the heart transplant waiting list, at the most critical status: 1A. After being on the waiting list exactly 2 months, Eleanor finally got her new heart, on December 22nd, 2010. After 93 days in the hospital, we finally got to take our baby girl home for the first time on January 11th, 2011. She is now a healthy, lively and very happy 15 month old! Our blog: www.ihearteleanor...

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My sweet boy was diagnosed at 5 days old with the congenital heart defects Transposition of the Great Arteries (TGA) and a hole between his ventricles (VSD). We were shocked, to say the least. I had two level 2 sonos in the last two months of my pregnancy and they detected nothing. He underwent his first open heart surgery at 9 days old and his 2nd (due to scar tissue build up from the 1st) at 4 months, 12 days old. He is amazing! With his broken heart, ours were made full and overflowing. He will need at least one other surgery to replace his pulmonary valve and we hope that will be all, but only God knows what the future holds. We are so grateful to have this sweet boy in our lives. CHD Awareness Week is February 7-14. Mamas, if you're pregnant or know someone who is, make sure you ask for (& tell your friends to ask) a pulse oximetry test on your baby- it is painless and non-invasive. It could save their life.

Jacob Baker was born on March 23, 2010 with Hypoplastic Left Heart Syndrome. Shortly after birth his septum became intact and he coded. He needed immediate intervention and his lungs had flooded. At 9 days old Jacob was finally strong enough to have his first open heart surgery, this was also the day we were able to hold our beautiful boy for the first time. Jacob had a g-tube placed at a month old and was finally able to come home after 8 long weeks in the hospital. Jacob thrived at home and was able to have his second open heart surgery at 4 months old. This time he was home only 6 days after his surgery. We recently learned that due to Jacob's rough start both of his vocal cords are paralyzed. Half of his airway is blocked by scar tissue and he will need a complete airway reconstruction in April of this year. He will have his third open heart surgery when he is 3 or 4 years old. Despite everything our little warrior has been through he is a happy, energetic loving toddler. He loves to play with his trains and cars and push his older brother around. Jacob is such an inspiration to so many people and I am so proud to be his mother. ♥

My sweet boy was diagnosed at 5 days old with the congenital heart defects Transposition of the Great Arteries (TGA) and a hole between his ventricles (VSD). We were shocked, to say the least. I had two level 2 sonos in the last two months of my pregnancy and they detected nothing. He underwent his first open heart surgery at 9 days old and his 2nd (due to scar tissue build up from the 1st) at 4 months, 12 days old. He is amazing! With his broken heart, ours were made full and overflowing. He will need at least one other surgery to replace his pulmonary valve and we hope that will be all, but only God knows what the future holds. We are so grateful to have this sweet boy in our lives. CHD Awareness Week is February 7-14. Mamas, if you're pregnant or know someone who is, make sure you ask for (& tell your friends to ask) a pulse oximetry test on your baby- it is painless and non-invasive. It could save their life.

At our anatomy ultrasound we learned not only that he was a boy, but there might be something wrong with his heart. They did not know exactly what it was, only that the left ventricle was way too big. After numerous appointments with doctors for the remainder of my pregnancy, they still were not positive exactly what it was, and needed to wait until he was born to determine exactly what was wrong. William was born on November 17, 2011. He had his first procedure, a cardiac catheterization on 11/18 before he was even 24 hours old. It was determined he had an Aortic to Left Ventricular Fistula (Tunnel) that was circulating the blood back into his LV making it do double the work. This CHD is extremely rare, literally a "one in a million" defect. On 11/21, at four days old, he had open heart surgery to patch the tunnel at UNC Children's Hospital. He was able to come home 10 days later, on his 2 week birthday. His heart murmur before the surgery was a Level 6, the highest possible, and also very rare, but now it is hardly noticeable by cardiologists!

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CHD Awareness - Carter Christian Blaze was born on 4.29.11. It was a completely normal pregnancy and delivery. At four months of age he was diagnosed with Hydrocephalus. While in the hospital having surgery for this condition, doctors found a large VSD and a small ASD. Carter had surgery in November at Children's Hospital Orange County to repair the holes. Almost three months later he is doing great. Our happy, healthy little boy has more energy than we ever could have imagined and is growing like a weed. We are very blessed he had a repairable heart defect. During our time in the hospital we met many families with much more complicated issues and understand the importance of raising awareness for CHD. God bless you all.

Our first child, Luke Charles Valentino, was born January 19, 2010. We had an uncomplicated pregnancy and expected a perfectly healthy child, but when Luke was born, he was cyanotic (blue) and had a weak cry. The neonatal team knew something was wrong and immediately took our baby to the NICU. Two hours later, we were told Luke had Transposition of the Great Arteries (TGA) and required surgery. We were completed devastated. They transported him to Rady Children's Hospital here in San Diego, and at two days old, Luke had the Aterial Switch Procedure. The operation went seamlessly, and after 5 1/2 hours of surgery ~ including 88 minutes on bypass ~ they closed Luke's chest. Luke recovered without any complications in the NICU, and we brought him home 10 days later. Doctors considered Luke an absolute best case scenario, referring to him as a 'rockstar'; and while a day hasn't gone by that we haven't thought about those first few terrifying days of Luke's life, we feel incredibly blessed that our special son survived and is thriving! Luke is now 2 years old and loves to play with cars and his little brother Carter!

Meet my amazing son Oakes: Today he is doing just fine! Oakes was diagnosed in utero with Truncus Arteriosis. Oakes has had open heart surgeries, dozens of procedures, cath lab trips, unbelievable amounts of medications, support and interventions. He has had complications and surprise diagnosis. Oakes is 11 months old, yet his story is big, and it is complex. Without a doubt part of his story is about donation. He has received donated blood, donated tissue, valves for his heart and most recen...

I am the mother of Abbagail Paige Gaw. She has a mommy, daddy, and a big brother that love and miss her very much. She was born on 10/04/2011 and had breathing problems, resulting in being transferred to Monroe Carroll Juniors Children Hospital at Vanderbilt. She was diagnosed at 2 weeks old of a CCHD Total anomalous pulmonary venous return (TAPVR). She had 3 open heart surgeries, 2 cath labs, ECMO twice a total of 6 days all together, pace maker, ventilator, all kinds of iv meds for support the most being 15 at one time this all took place in 16 days. She also had Pulmonary hypertension caused by the TAPVR. She was put on ECMO due to not being able to come off the by pass machine after the surgeries. She was took off ECMO both times due to brain bleeds, she was not weaned off it was stopped all of a sudden, she did good a couple days then her pulmonary pressure wood stop to rise up until it got to high and we were told their was no medical explanition. Abbagail lost her battle on 11/03/2011.

CHD awareness week Feb 7-14th After a perfect and uncompilcated pregnancy my daughter Delaney was born. My perfect little baby girl...or so we thought. After 30 hours of labor and lots of visitors it was finally time for me to sleep. I handed my daughter off to one of my best friends to hold while I tried to recover and get a couple hours sleep. I woke up to the sound of the nurse entering the room. "Time to give her a bath" she said. She took my baby from my friends hands, unwrapped her from her blanket, and noticed that her hands and feet were still purpleish. She asked to take her to the nursery for her bath and I agreed. Next thing I know I hear "CODE BLUE IN THE NURSERY, CODE BLUE IN THE NURSERY" From that moment on my life was NEVER the same! The next 36 hours where filled with absolute fear and terror. I never cried so hard in my life! I also had never really prayed to GOD before but that's ALL I did for the next few hours. I felt so weak, like I had no control, and if I lost my baby girl I would not make it. I literally felt like if she died that I would die too. It was the scariest day of my life. The next time I saw my baby she was on a ventilator and heavily sedated. I wasn't even allowed to touch her because the nurses didn't want her to get agitated. Looking at the monitors I remember her o2 levels were in the low 80's. That was way below the normal healthy range of 99-100% After running some tests, an echocardiogram, and sending over a transport team from CHOC, she was transported to the children's hospital. It was so hard not being able to go with her. I had to stay in one city while she was fighting for her life in another one. I didn't eat, I didn't sleep. I could only cry! After numerous phone calls from the doctor's at the children's hospital there was a diagnosis. My daughter had TAPVR, a rare congenital heart defect occurring in 1/15,000 babies. Basically the veins from her lungs were supposed to attach to her heart and they didn't. They rerouted themselves through her diaphragm and down into her inferior vena cava. They told me she needed emergency open heart surgery. My heart sunk. I was lost. I never prayed so hard. I prayed that if God had to take her that he take me too. I couldn't bare the thought of living without this child who I had just met. She was already the center of my universe! The next morning I was released from the hospital and rushed over to see her. she was so tiny and there were so many wires. I had about an hour with her until she was taken into surgery. Not knowing if this was going to be the last time I saw her alive, I kissed her forehead, my tears dripping all over her face, and told her I loved her and to be strong. The next few hours seemed like days. Then finally the doctor came out to tell me the good news. She had made it through! The surgery went well and I could go see her in about an hour. I thanked God and cried tears of joy! The road has not been without bumps since then but I thank God everyday for blessing my with such a miracle.