1 in 110.
You often hear of tragedies, heart-break, and crushing life changes and think "That will never happen to me." Well...this isn't my story, but it's my best friend's. She never thought in a million years that her child would be 1 in 110 children born with CHD. We hope to help raise awareness for congenital heart disease (CHD) by sharing her story.
February is American Heart Month. If you feel inspired to donate to the American Heart Association, you can do so here:
https://donatenow.heart.org/
February is American Heart Month. If you feel inspired to donate to the American Heart Association, you can do so here:
https://donatenow.heart.org/
Becoming a mother is one of the most exciting, challenging and joyous times in a woman's life. Creating a new life within your womb is something indescribable and an unspeakable bond is formed months before the baby is ever even born. The need, the urge, to protect that little life is overwhelming from day one and it only gets stronger as time passes. Not all mothers have the luxury of such a blissful experience... Sometimes things don't go as planned. For me, it all started with 8 simple words, one sentence that flipped my entire world upside down, and took my breath away forever.
"There is something wrong with your baby's heart."
My pregnancy was text book, even perfect some may say. I had no complications, no abnormal scans, not even a single second of morning sickness. I had the perfect basketball belly and glowing skin that most women would kill for. That obviously led us all to assume we had the perfect baby that my husband and I had been dreaming for, for so long... Ignorance is bliss. On May 7th, 2014 at 3:39 pm my perfect Carson Michael entered the world at 10 lbs 11 ounces and 23.5 inches long, only he wasn't as perfect as we all thought.
After pushing for almost 40 minutes I felt the weight of my son on my chest, but before I could count his fingers and toes he was ripped from my arms. I heard no cries, only a couple of weak lamb-like whimpers. Doctors and nurses flooded around him, all seeming very concerned. I hadn't even seen his face, I hadn't even told him hello before I was told to kiss him goodbye with a ventilator tube down his throat, and a nurse pumping oxygen slowly and methodically into his sick, sick lungs. After almost 8 hours of no news the doctor finally came to speak with me. He explained to me that my perfect baby was very sick and they didn't know exactly what was wrong. He told me that there was something wrong with my baby's heart and if it was what he thought it was, my brand new baby boy would need immediate open heart surgery to hopefully save his life. I was able to go to the NICU for a few minutes to see my boy, covered in tape, tubes, multiple IVS, hooked up to a ventilator, sedated and paralyzed... I was able to to tell him hello, just to tell him goodbye... Praying, hoping, and wishing with all my might that I would see him alive again.
At 7am the following morning Carson underwent his first open heart surgery. After 8 long hours we got the call, he had survived the surgery, but just barely. The doctor told us that Carson almost died on the operating table but they managed to stabilize him. They told my husband and I that we needed to prepare ourselves, because they didn't expect Carson to live for very long. He had a heart condition (total anomalous pulmonary venous return) that caused blood to pump into his lungs throughout utero never allowing them to develop. They compared his lungs to a 60 year old lifetime smoker and said they were riddled with disease and severely underdeveloped. They were able to correct his heart condition but the damage to his lungs was unfixable, incurable... There was no bandaid big enough, and no antibiotic strong enough to make my baby better. He was dying, and there was nothing I could do but sit back and watch. I went to Carson after his surgery, his chest was still open in case of swelling and it was the most horrific sight I'd ever seen, and it was my baby. I could physically see his heart beating, his heart struggling... I sat down beside him that day and I told him to fight for me, I told him to be strong and that I would fight with everything in me for him and I would never back down. I also told him that if he was too tired then he could go and I would be okay, but Carson had no plans of giving up that easily.
Over the next 6 months Carson underwent 2 more open heart surgeries to correct vein issues and was ultimately then diagnosed with pulmonary vein stenosis... Another fatal blow. Again and again I was told my son was dying, to prepare myself, to accept the inevitable. Day after day I sat in a chair by my son's bed, watching him take two steps forward and four steps back, encouraging him to stay strong when I was tearing at the seams. I watched as they pulled the curtain around countless babies, knowing exactly what it meant. I listened as mothers screamed as they held their babies while they took their last breath, all the while waiting for it to be my turn... Waiting to be the mom behind the curtain. I didn't want that for my son, I wanted him to know more than four hospital walls; so my husband and I made the decision to stop treatment and take our son home and enjoy the time we had.
After six and a half months in the hospital we took our baby home on hospice and prayed for a miracle. Carson thrived at home, he laughed, smiled, he got to sleep in his own bed and he even got to celebrate Thanksgiving, but he was still sick. He was still ventilator dependent (he had a trach) and each day we were having to go higher and higher on his oxygen. After fourteen beautiful days at home, Carson required more oxygen than we could give him and he was on the verge of a major cardiac event and/or a stroke. I had never been able to save Carson from anything but I could save him from that. On that night we made the decision to allow Carson to stop fighting because I knew he would fight to the bitter, painful end and he had been through enough. At 11pm on December 5th, 2014, we gave Carson medicine to make him sleep, we turned off his ventilator and he passed away peacefully in my arms at almost 7 months old. I felt selfishly relieved, at peace, and for the first time in 7 months I could breathe easy knowing that my son was no longer suffering. I was, and am, crushed, forever changed, forever broken, but forever grateful for the little boy that taught me what this life is all about. Through it all Carson smiled, we called them, "Carson smiles" because they were just so special and could light up a room. Carson fought and he never once gave up... His life was nothing but pain but he still smiled and he gave it everything he had.
Eight months after Carson passed away my husband and I found out we were expecting again, and again it was a little boy. The emotions I felt were indescribable. I was terrified, I was excited, but most of all I felt guilty. I felt like I was trying to replace Carson, trying to move on and forget, knowing deep down that could never be done. I spent the first half of my pregnancy begging Carson for forgiveness and telling him that I would never replace him, I would never love another baby the way I loved him. I worried about my new son on the way and feared he too, would be ripped away from me and that I would never get to be happy. As my pregnancy progressed my new son became a source of hope rather than a source of fear, and he gave me the strength to keep fighting and keep pushing for my happiness. Scan after scan, test after test my baby boy was proven heart healthy, lung healthy and overall perfect! He was a gift from Carson and instead of begging Carson for forgiveness I started thanking him daily for sending me his healthy baby brother. The fear was still there but I had immense peace and I just had a feeling that everything would be okay and for Carson I continued to smile and remain positive for the health of our new baby.
On May 18, 2016 Elijah David made an early arrival at 38 weeks gestation and he was perfect! He came out after only 3 pushes, screaming and kicking! We never got to hear Carson's voice because of the ventilator so hearing Eli scream was the sweetest sound in the world. My mom, mother-in-law, husband, and best friend were all sobbing and celebrating as I finally got to count fingers and toes on my precious rainbow baby. I feared that loving Eli would be hard, that bonding with him would be a challenge but I loved him unconditionally from the moment I laid eyes on him. He looks so similar to his brother and it pains my heart but at the same time brings me so much peace and comfort to know that a piece of Carson will live on in Elijah.
Through this journey I've learned that this life isn't about the circumstances we're thrown into but the outlook and attitude we have in the moment. For 7 months I was forced to live in every single moment because I knew everything could change in the matter of a minute. I refused to grieve my son before he was gone, I refused to "prepare myself" because Carson's life wasn't over yet and he was worth more than that. Now I live in every single moment with Elijah and I don't take a second of his healthy life for granted. My boys have given my life a purpose, each in their own special ways. Carson has given me the drive and motivation to live this life in a forward positive way, and Eli has given me the hope and the strength to do so. I am forever grateful and forever blessed and it all started with one big Carson smile.
To see Eli's birth, you can click HERE!
"There is something wrong with your baby's heart."
My pregnancy was text book, even perfect some may say. I had no complications, no abnormal scans, not even a single second of morning sickness. I had the perfect basketball belly and glowing skin that most women would kill for. That obviously led us all to assume we had the perfect baby that my husband and I had been dreaming for, for so long... Ignorance is bliss. On May 7th, 2014 at 3:39 pm my perfect Carson Michael entered the world at 10 lbs 11 ounces and 23.5 inches long, only he wasn't as perfect as we all thought.
After pushing for almost 40 minutes I felt the weight of my son on my chest, but before I could count his fingers and toes he was ripped from my arms. I heard no cries, only a couple of weak lamb-like whimpers. Doctors and nurses flooded around him, all seeming very concerned. I hadn't even seen his face, I hadn't even told him hello before I was told to kiss him goodbye with a ventilator tube down his throat, and a nurse pumping oxygen slowly and methodically into his sick, sick lungs. After almost 8 hours of no news the doctor finally came to speak with me. He explained to me that my perfect baby was very sick and they didn't know exactly what was wrong. He told me that there was something wrong with my baby's heart and if it was what he thought it was, my brand new baby boy would need immediate open heart surgery to hopefully save his life. I was able to go to the NICU for a few minutes to see my boy, covered in tape, tubes, multiple IVS, hooked up to a ventilator, sedated and paralyzed... I was able to to tell him hello, just to tell him goodbye... Praying, hoping, and wishing with all my might that I would see him alive again.
At 7am the following morning Carson underwent his first open heart surgery. After 8 long hours we got the call, he had survived the surgery, but just barely. The doctor told us that Carson almost died on the operating table but they managed to stabilize him. They told my husband and I that we needed to prepare ourselves, because they didn't expect Carson to live for very long. He had a heart condition (total anomalous pulmonary venous return) that caused blood to pump into his lungs throughout utero never allowing them to develop. They compared his lungs to a 60 year old lifetime smoker and said they were riddled with disease and severely underdeveloped. They were able to correct his heart condition but the damage to his lungs was unfixable, incurable... There was no bandaid big enough, and no antibiotic strong enough to make my baby better. He was dying, and there was nothing I could do but sit back and watch. I went to Carson after his surgery, his chest was still open in case of swelling and it was the most horrific sight I'd ever seen, and it was my baby. I could physically see his heart beating, his heart struggling... I sat down beside him that day and I told him to fight for me, I told him to be strong and that I would fight with everything in me for him and I would never back down. I also told him that if he was too tired then he could go and I would be okay, but Carson had no plans of giving up that easily.
Over the next 6 months Carson underwent 2 more open heart surgeries to correct vein issues and was ultimately then diagnosed with pulmonary vein stenosis... Another fatal blow. Again and again I was told my son was dying, to prepare myself, to accept the inevitable. Day after day I sat in a chair by my son's bed, watching him take two steps forward and four steps back, encouraging him to stay strong when I was tearing at the seams. I watched as they pulled the curtain around countless babies, knowing exactly what it meant. I listened as mothers screamed as they held their babies while they took their last breath, all the while waiting for it to be my turn... Waiting to be the mom behind the curtain. I didn't want that for my son, I wanted him to know more than four hospital walls; so my husband and I made the decision to stop treatment and take our son home and enjoy the time we had.
After six and a half months in the hospital we took our baby home on hospice and prayed for a miracle. Carson thrived at home, he laughed, smiled, he got to sleep in his own bed and he even got to celebrate Thanksgiving, but he was still sick. He was still ventilator dependent (he had a trach) and each day we were having to go higher and higher on his oxygen. After fourteen beautiful days at home, Carson required more oxygen than we could give him and he was on the verge of a major cardiac event and/or a stroke. I had never been able to save Carson from anything but I could save him from that. On that night we made the decision to allow Carson to stop fighting because I knew he would fight to the bitter, painful end and he had been through enough. At 11pm on December 5th, 2014, we gave Carson medicine to make him sleep, we turned off his ventilator and he passed away peacefully in my arms at almost 7 months old. I felt selfishly relieved, at peace, and for the first time in 7 months I could breathe easy knowing that my son was no longer suffering. I was, and am, crushed, forever changed, forever broken, but forever grateful for the little boy that taught me what this life is all about. Through it all Carson smiled, we called them, "Carson smiles" because they were just so special and could light up a room. Carson fought and he never once gave up... His life was nothing but pain but he still smiled and he gave it everything he had.
Eight months after Carson passed away my husband and I found out we were expecting again, and again it was a little boy. The emotions I felt were indescribable. I was terrified, I was excited, but most of all I felt guilty. I felt like I was trying to replace Carson, trying to move on and forget, knowing deep down that could never be done. I spent the first half of my pregnancy begging Carson for forgiveness and telling him that I would never replace him, I would never love another baby the way I loved him. I worried about my new son on the way and feared he too, would be ripped away from me and that I would never get to be happy. As my pregnancy progressed my new son became a source of hope rather than a source of fear, and he gave me the strength to keep fighting and keep pushing for my happiness. Scan after scan, test after test my baby boy was proven heart healthy, lung healthy and overall perfect! He was a gift from Carson and instead of begging Carson for forgiveness I started thanking him daily for sending me his healthy baby brother. The fear was still there but I had immense peace and I just had a feeling that everything would be okay and for Carson I continued to smile and remain positive for the health of our new baby.
On May 18, 2016 Elijah David made an early arrival at 38 weeks gestation and he was perfect! He came out after only 3 pushes, screaming and kicking! We never got to hear Carson's voice because of the ventilator so hearing Eli scream was the sweetest sound in the world. My mom, mother-in-law, husband, and best friend were all sobbing and celebrating as I finally got to count fingers and toes on my precious rainbow baby. I feared that loving Eli would be hard, that bonding with him would be a challenge but I loved him unconditionally from the moment I laid eyes on him. He looks so similar to his brother and it pains my heart but at the same time brings me so much peace and comfort to know that a piece of Carson will live on in Elijah.
Through this journey I've learned that this life isn't about the circumstances we're thrown into but the outlook and attitude we have in the moment. For 7 months I was forced to live in every single moment because I knew everything could change in the matter of a minute. I refused to grieve my son before he was gone, I refused to "prepare myself" because Carson's life wasn't over yet and he was worth more than that. Now I live in every single moment with Elijah and I don't take a second of his healthy life for granted. My boys have given my life a purpose, each in their own special ways. Carson has given me the drive and motivation to live this life in a forward positive way, and Eli has given me the hope and the strength to do so. I am forever grateful and forever blessed and it all started with one big Carson smile.
To see Eli's birth, you can click HERE!