Life is back to almost normal for guest blogger Christine Lester after an autumn that included a visit from Hurricane Irene. Today’s post begins a three part series exploring how her feelings have changed toward the many scars on her son’s body. In Part 1, she describes her jumble of emotions upon seeing newborn scars on her son for the first time after his major surgery.
Part One: Newborn Scars
Recently, I came across a photo showing a mother baring her postpartum scars or “birthmarks” as she refers to them. I was touched by Cassie Fox’s photo and her heartfelt caption. It made me not only think of my own birthmarks from having 2 precious children but the newborn scars that riddle my son’s body.
I’m going tell you a little secret about those newborn scars. I was shocked at the sight of them when the NICU nurses showed them to me quickly through bandages and tape. To look at them hurt me, took my breath away, made my heart ache. Initially I hated them and was sad he had them. That the dream I had for this boy would forever be changed. Eventually, I grew to love them and realized that the dream wouldn’t completely change. Just the journey to get there would.
In about a 12 hour span my whole life had flipped upside down. Those August hours are a blur. I had given birth to a son, had him immediately taken away and whisked to an out-of-state hospital. My husband rushed to follow the transport team. A team of surgeons were called in over a holiday weekend and when my child arrived, they were waiting for him. Our little man had gone in and out of surgery before my doctor even did rounds. I begged to be discharged which the nurse advised against. So, I signed myself out anyway and immediately headed to Philadelphia so that I could FINALLY see my baby.
Upon arriving I was met by hospital staff who took me to my husband who had just finally fallen asleep after being up for 2 days straight. My husband then led me to our son. The first born. Around his bed staff started approaching me. I expressed genuine gratitude for all they did for my child. Those few hours seemed like days. My first look at him came with them showing me wires and machines. They moved him over a bit to show me where his surgical newborn scars were. They briefed me on the surgery, how they repaired him, the ports, what his life will be like. Feedings. Tests. Names and conditions I had never even heard of, nor could I pronounce….
It all becomes like a Charlie Brown cartoon. Try as you might their words come out like background music and next thing you know your not hearing what they are saying. I try not to look shocked or stare but that’s all I can do. I was still trying to grasp the reality of having a baby let alone one with all these other conditions. I tried to express my gratitude to the doctors for saving our child’s life. Thank them for giving him a chance to live. A chance for us to be parents. Yet, how do you ever really thank someone for that gift? Everything seems inadequate even the most heartfelt words.
They talk about the list of new birth defects they’ve discovered in the past 5 hours. Much more than they discovered in 9 months of elaborate high-risk prenatal screening. They tell me he has VACTERLS and most likely has all the letters yet they would have to rule them out. They keep saying Esophageal Atresia & Tracheo-Esophageal Fistula. I couldn’t grasp it until a doctor wrote it down for me. They go into possible complications and I’m desperately trying to hang on to every word, think of every question.
But all I can think about are those cuts on my child. Such a small little man with a medical chart that already weighs more than he did at a day old. Is he in pain? Was he in pain? Was he scared? Did they take good care of him? Did I somehow cause this? What will his life be like? I look around at the wires, the tubes, the machines. It makes the term ‘surgery’ much more tangible when your looking at YOUR child. No one had any time to think before he was whisked away. I just needed a chance to breathe, take it all in. The ironic thing is that’s all my baby needed to. We all just needed the chance to breathe.
No one had time to research or prepare, ask any questions. It was “your child is being sent out of state immediately or he will die”. That’s it. Take it or leave it.
We took it and hoped we all could just breathe.
Can You Relate?
Can you relate to Christine’s emotional response? What kind of response did you have upon receiving a diagnosis, seeing your child for the first time after surgery, hearing about the treatments required? Leave a comment if you like.
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Thank you, Christine. Of course, the author in me thinks it would be wonderful for them to have their own copies:)
Jolene
Thank you, Christine. Of course, the author in me thinks it would be wonderful for them to have their own copies:)
Jolene
That would be amazing. I know we all keep passing on our copies!
That would be amazing. I know we all keep passing on our copies!
Christine,
You are so right. Divine intervention is all over our NICU experiences. When our son was about 12, we took him back to visit the NICU where he lived for almost 3 weeks. They were delighted to see him and to know that he was doing so well physically and intellectually. We also send a high school graduation picture, so the staff could see how their labor has born fruit.
Now if we could just get my books into every NICU and PICU in the country so other parents can know hope!
Jolene
Christine,
You are so right. Divine intervention is all over our NICU experiences. When our son was about 12, we took him back to visit the NICU where he lived for almost 3 weeks. They were delighted to see him and to know that he was doing so well physically and intellectually. We also send a high school graduation picture, so the staff could see how their labor has born fruit.
Now if we could just get my books into every NICU and PICU in the country so other parents can know hope!
Jolene
Jolene~all those years ago fate put us Lorenda & I in the same NICU a state away for both of us. Our first borns lay in isoletts and beds across from each other. They were some of the only children that made it out of our NICU. 🙁
We have been best friends since the day Billy arrived. An instant support system years before support groups ever found us. I wouldn’t say I’m an angel. I would say that God brought these two little fighters together to bring us together. Even though we lived in the same state we would of never of crossed path’s even though we are alike in so many ways. Our friendship started and grew from a photo. Yes, a photo. There Lorenda sat with her little Bella doing Kangaroo care. I asked if she wanted me to take a picture of her and her baby as she didn’t have any family around right then. These beautiful women were having a moment and I hated to intrude but the artist in me WANTED to have a memory of this moment. So I asked if I could take her picture. We took some photo’s, we then developed them and brought it back the next day with the negatives (maybe we are dating ourselves). I never knew until years later that they were some of the only photo’s she had of the 2 of them from the NICU. From that day on I was her eyes and ears, and she was mine. NICU rules are that if your child codes or has a surgery that parent has to leave but all other parents stay seated and don’t intrude. So when Bella had surgery at bedside I watched and prayed over her. Then reported back to Lorenda as she did for us. So don’t think for one moment I’m an angel. It’s these little one’s who call us Mommy, they are the angels. They are the one’s doing devine work.
So as much as landing in Holland hurt, it has it’s perks also. You meet amazing strong women. They become your lifeline. The funny thing is Lorenda was the one that first told me about your book almost 2 yrs ago. A prayer warrior at her church told her about it. Little did either of them know that our children’s story was the same. I was blown away when the book arrived! See again~ Devine intervention. Its those whispers in our ears that we can’t ignore. That is something much bigger than you or I those are the real angels at work! 🙂
Jolene~all those years ago fate put us Lorenda & I in the same NICU a state away for both of us. Our first borns lay in isoletts and beds across from each other. They were some of the only children that made it out of our NICU. 🙁
We have been best friends since the day Billy arrived. An instant support system years before support groups ever found us. I wouldn’t say I’m an angel. I would say that God brought these two little fighters together to bring us together. Even though we lived in the same state we would of never of crossed path’s even though we are alike in so many ways. Our friendship started and grew from a photo. Yes, a photo. There Lorenda sat with her little Bella doing Kangaroo care. I asked if she wanted me to take a picture of her and her baby as she didn’t have any family around right then. These beautiful women were having a moment and I hated to intrude but the artist in me WANTED to have a memory of this moment. So I asked if I could take her picture. We took some photo’s, we then developed them and brought it back the next day with the negatives (maybe we are dating ourselves). I never knew until years later that they were some of the only photo’s she had of the 2 of them from the NICU. From that day on I was her eyes and ears, and she was mine. NICU rules are that if your child codes or has a surgery that parent has to leave but all other parents stay seated and don’t intrude. So when Bella had surgery at bedside I watched and prayed over her. Then reported back to Lorenda as she did for us. So don’t think for one moment I’m an angel. It’s these little one’s who call us Mommy, they are the angels. They are the one’s doing devine work.
So as much as landing in Holland hurt, it has it’s perks also. You meet amazing strong women. They become your lifeline. The funny thing is Lorenda was the one that first told me about your book almost 2 yrs ago. A prayer warrior at her church told her about it. Little did either of them know that our children’s story was the same. I was blown away when the book arrived! See again~ Devine intervention. Its those whispers in our ears that we can’t ignore. That is something much bigger than you or I those are the real angels at work! 🙂
Jolene, i hope that one day you will be able to meet Christine face to face. She is as beautiful on the outside as she is on the inside. I wish I could see her more often! <3
Jolene, i hope that one day you will be able to meet Christine face to face. She is as beautiful on the outside as she is on the inside. I wish I could see her more often! <3
I agree. Christine is an angel. I’m jealous that you’ve met her face to face.
Jolene
I agree. Christine is an angel. I’m jealous that you’ve met her face to face.
Jolene
Thanks for adding the links, Christine. It was on my to do list, but life is moving too fast. You are an angel!
Thanks for adding the links, Christine. It was on my to do list, but life is moving too fast. You are an angel!
Here is part 2 http://f06.70c.myftpupload.com/2011/11/the-birthmarks-are-scars-part-2/
Here is part 3 http://f06.70c.myftpupload.com/2011/11/the-birthmarks-are-scars-part-3/
Here is part 2 http://f06.70c.myftpupload.com/2011/11/the-birthmarks-are-scars-part-2/
Here is part 3 http://f06.70c.myftpupload.com/2011/11/the-birthmarks-are-scars-part-3/
Oh Lorenda you have me crying…..Your words are just beautiful!
Oh Lorenda you have me crying…..Your words are just beautiful!
Hello there my sweet Christine, oh how I relate to your story. I had to wait 3 days to see my first born after I had an emergency C-section 13 weeks prior to Danielle’s due date. My life changed in a blink of an eye. What the heck just happened? I was happy, pregnant, and walking on the Ocean City Boardwalk just hours before. Was this a nightmare? Was this real? My head was spinning. Then I was told she was taken to another state to the best Children’s Hospital in the country to try to save her life. She does not have TEF, but her entire body was septic, and she had a massive stroke on both sides of her brain. There was not a good prognosis at all.. I felt like I had gone through the first couple of stages of death described in my nursing psych book written by Kubler-Ross; denial, anger, bargaining. When I finally was able to see my daughter, all I saw were two IV poles completely covered with IV pumps, tubing that seemed to be intwined everywhere, a big isolette, and then finally, a small 2lb baby not moving inside. Honestly, I wanted to turn around an leave, but no, this was my baby, and this was my gift that God had given me, and she was alive. Those days have long past, and I try not to recall those first few days often. But there are many birthmarks on her body, on our hearts, and engraved in our souls. That’s who she is and that’s who we are. We are completely in love with our daughter, and we couldn’t change to course of the past, or we wouldn’t be who we are now, nor would we have met the “angels” on the way through this journey. One of my “angels” is Christine Lester. I spent many days with her and Billy in the NICU and my life would not be the same without them. She is my encourager, my sounding board, and my friend. I am so incredibly blessed to have my daughter and my friend. I would not have the depth of love and compassion as a human being without this life journey. My husband and I did not have any other children because of fear. That is my only regret, but certainly not because of the life and “birthmarks” of our precious child. Blessing to all <3
Hello there my sweet Christine, oh how I relate to your story. I had to wait 3 days to see my first born after I had an emergency C-section 13 weeks prior to Danielle’s due date. My life changed in a blink of an eye. What the heck just happened? I was happy, pregnant, and walking on the Ocean City Boardwalk just hours before. Was this a nightmare? Was this real? My head was spinning. Then I was told she was taken to another state to the best Children’s Hospital in the country to try to save her life. She does not have TEF, but her entire body was septic, and she had a massive stroke on both sides of her brain. There was not a good prognosis at all.. I felt like I had gone through the first couple of stages of death described in my nursing psych book written by Kubler-Ross; denial, anger, bargaining. When I finally was able to see my daughter, all I saw were two IV poles completely covered with IV pumps, tubing that seemed to be intwined everywhere, a big isolette, and then finally, a small 2lb baby not moving inside. Honestly, I wanted to turn around an leave, but no, this was my baby, and this was my gift that God had given me, and she was alive. Those days have long past, and I try not to recall those first few days often. But there are many birthmarks on her body, on our hearts, and engraved in our souls. That’s who she is and that’s who we are. We are completely in love with our daughter, and we couldn’t change to course of the past, or we wouldn’t be who we are now, nor would we have met the “angels” on the way through this journey. One of my “angels” is Christine Lester. I spent many days with her and Billy in the NICU and my life would not be the same without them. She is my encourager, my sounding board, and my friend. I am so incredibly blessed to have my daughter and my friend. I would not have the depth of love and compassion as a human being without this life journey. My husband and I did not have any other children because of fear. That is my only regret, but certainly not because of the life and “birthmarks” of our precious child. Blessing to all <3
Shelly that is exactly how I feel now and you will see in the third post from today that I do love them now. The first few days they were very hard for me to grasp…they were just the reality of what had happened to him and all the things that were wrong with him. I love your story!
Shelly that is exactly how I feel now and you will see in the third post from today that I do love them now. The first few days they were very hard for me to grasp…they were just the reality of what had happened to him and all the things that were wrong with him. I love your story!
I can so relate to your post. We didn’t find out about Sean’s TEF until about 24 hours after he was born…my timeline could be out of sync as I was very sick and fighting for my life.
When I first saw Sean’s scars, I felt an immense sense of gratitude for those scars. They saved the life of the baby I had been trying for 9 years and had spent nearly 3 months on hospital bedrest to keep us both alive. I felt gratitude for the surgeon who took Sean’s case despite the hospital not wanting to since he was so tiny…barely 3lbs. Sure they looked gross, but what site doesn’t?
Over the years more scars have collected on his body. Two which bring tears to my eyes because we almost lost him after the surgery. Yet, in the same breathe, I am amazed at the advancements of medical technology that saved his life. Those scars are a story book of healing, miracles and advancements of our culture. Do I wish he was scar free, not really. Sean wouldn’t be who he is today without those scars.
I can so relate to your post. We didn’t find out about Sean’s TEF until about 24 hours after he was born…my timeline could be out of sync as I was very sick and fighting for my life.
When I first saw Sean’s scars, I felt an immense sense of gratitude for those scars. They saved the life of the baby I had been trying for 9 years and had spent nearly 3 months on hospital bedrest to keep us both alive. I felt gratitude for the surgeon who took Sean’s case despite the hospital not wanting to since he was so tiny…barely 3lbs. Sure they looked gross, but what site doesn’t?
Over the years more scars have collected on his body. Two which bring tears to my eyes because we almost lost him after the surgery. Yet, in the same breathe, I am amazed at the advancements of medical technology that saved his life. Those scars are a story book of healing, miracles and advancements of our culture. Do I wish he was scar free, not really. Sean wouldn’t be who he is today without those scars.
So true, Marty.
Jolene
So true, Marty.
Jolene
Same for me, Katie. We had no idea our son had TEF until 12 hours after his birth.
Jolene
Same for me, Katie. We had no idea our son had TEF until 12 hours after his birth.
Jolene
You took words from my own mind. My baby EA/tef undiagnosed until birth.
You took words from my own mind. My baby EA/tef undiagnosed until birth.
When I see my son’s scars, they no longer make me sad. Because those are the scars that saved him…the marks the surgeons made so he could eat and drink normally. When he gets older, he will have a story to tell. He is lucky to be alive. And those scars are his battle wounds.
Of course, I wish he didn’t have them. I wish he wasn’t born with TEF. But I’m grateful that they suspected it before he was born, that he was born in a hospital equipped to handle it and that ten months later, he is a happy, smiling, hungry little boy!
When I see my son’s scars, they no longer make me sad. Because those are the scars that saved him…the marks the surgeons made so he could eat and drink normally. When he gets older, he will have a story to tell. He is lucky to be alive. And those scars are his battle wounds.
Of course, I wish he didn’t have them. I wish he wasn’t born with TEF. But I’m grateful that they suspected it before he was born, that he was born in a hospital equipped to handle it and that ten months later, he is a happy, smiling, hungry little boy!
I can relate. Our daughter was born 30 years ago with VACTERLS (then known as VATER) and she, too, was whisked away to surgery in a different city before I could hold her and bond appropriately. We, too, went through the “discovery” process, where more and more anamolies were found each day.
Please know that this “discovery” process goes on for many years…and is not confined to the first few days, or weeks, or months, after your baby’s birth. Just when you think you have got your mind around a certain set of physical problems and have come to grips with it, there will be a new set of problems and a new hurdle that will be plunked down in front of you…and all you will want to do is cry.
But know that there will be a “discovery” of strength, too — in your child, in your spouse, and in yourself — that you didn’t know you had. Years later, you will look back with incredible pride at all that you and your child have accomplished and you will almost feel pity for those who have no clue of what you have been through. I know that sounds weird — and that all you wish for now is respite and a day when you aren’t so tired and worried — but I predict that time will come.
Hang in there. Continue to share your feelings. It helped me so much.
And seek help, too, from your faith, counselors, and others when you can. It really does get better.
I can relate. Our daughter was born 30 years ago with VACTERLS (then known as VATER) and she, too, was whisked away to surgery in a different city before I could hold her and bond appropriately. We, too, went through the “discovery” process, where more and more anamolies were found each day.
Please know that this “discovery” process goes on for many years…and is not confined to the first few days, or weeks, or months, after your baby’s birth. Just when you think you have got your mind around a certain set of physical problems and have come to grips with it, there will be a new set of problems and a new hurdle that will be plunked down in front of you…and all you will want to do is cry.
But know that there will be a “discovery” of strength, too — in your child, in your spouse, and in yourself — that you didn’t know you had. Years later, you will look back with incredible pride at all that you and your child have accomplished and you will almost feel pity for those who have no clue of what you have been through. I know that sounds weird — and that all you wish for now is respite and a day when you aren’t so tired and worried — but I predict that time will come.
Hang in there. Continue to share your feelings. It helped me so much.
And seek help, too, from your faith, counselors, and others when you can. It really does get better.
April, I did the exact same thing with my second child! I felt I never enjoyed it because I was waiting, almost expecting the rug to be pulled out from under us. I don’t think it’s irrational I think it’s how we cope. I spent my whole 2nd pregnancy dreading ultrasounds and worried that history would repeat itself. Even after my daughter was born I didn’t let my guard down. I was on edge waiting for them to whisk her away. I think that fear of history repeating itself went away on her 1st birthday. Sending u love.
April, I did the exact same thing with my second child! I felt I never enjoyed it because I was waiting, almost expecting the rug to be pulled out from under us. I don’t think it’s irrational I think it’s how we cope. I spent my whole 2nd pregnancy dreading ultrasounds and worried that history would repeat itself. Even after my daughter was born I didn’t let my guard down. I was on edge waiting for them to whisk her away. I think that fear of history repeating itself went away on her 1st birthday. Sending u love.
I’m looking forward to feedback from you all. After I wrote this and hit send Grey’s Anatomy did a special on a TEF newborn the next week. That episode showed me how relavent this post would be to other parents and that no matter how much time has passed the “scars” are still very fresh.
I’m looking forward to feedback from you all. After I wrote this and hit send Grey’s Anatomy did a special on a TEF newborn the next week. That episode showed me how relavent this post would be to other parents and that no matter how much time has passed the “scars” are still very fresh.
Though my daughter has no physical scars, I know we both have many emotional scars from her first years of life. When I had my third child, two years after my daughter’s birth, I felt like such a different parent. I was much more frantic and scared than I had been with my first two kids. I constantly picked him over looking for something “wrong,” even though I knew having two kids with the same syndrome would, in our case, be very rare. In some ways, I feel like I wished away his babyhood. I just wanted to get past the baby-phase, because I felt like then I would know he was alright. It was irrational, I think, but that’s how I felt at the time.
Though my daughter has no physical scars, I know we both have many emotional scars from her first years of life. When I had my third child, two years after my daughter’s birth, I felt like such a different parent. I was much more frantic and scared than I had been with my first two kids. I constantly picked him over looking for something “wrong,” even though I knew having two kids with the same syndrome would, in our case, be very rare. In some ways, I feel like I wished away his babyhood. I just wanted to get past the baby-phase, because I felt like then I would know he was alright. It was irrational, I think, but that’s how I felt at the time.