Yesterday, guest blogger Christine Lester wrote about her emotions upon seeing newborn scars on her son’s body. Today, she writes about how she responded when it was finally time to take her baby, newborn scars and all, home.
Newborn Scars, Part 2: Coming Home
The next few days as I held my bedside vigil I see the incisions bandaged up. I helped to quickly change his dressings, but I didn’t really LOOK at them. Somehow my eyes only focus on the nurses hands or pretend that the dressing we are changing is not on MY child.
When it’s finally time to leave the NICU and take him home it’s one more quick peek and quick instructions on how to care for it. Then off to the next item on the discharge nurse’s check list. When we leave I have a few pages printed off the internet that describe the birth defects my child has. 9 years ago it wasn’t much. I had a list of care instructions for the wounds, and signs watch out for. Symptoms to be aware of, when he needed to be brought back. Essentially they were saying “Here is your medically fragile child, and by the way, here is some stuff we found off the internet. Good luck!” It doesn’t offer me any comfort.
New mothers birth babies and then they pour over every detail of that child. They count fingers and toes. Search for birthmarks. Take it all in. My turn never came at delivery. My time didn’t come in the NICU either. It came here at home. When we unlocked the door that night, that is when the magnitude of the newborn scars hit me. I remember the relief of being home and being so happy to be free of the wires and the tubes. To nurse without an audience. To change a diaper without having to weigh it. Place him in his nursery, take him out of NICU clothes. To be free of the nurse’s shadow hovering in case some lead, wire or tube came undone, or worse. I needed desperately to be away from the monitors, the alarms, the grief that permeated the walls when another angel was called back to soon.
When life resumed the next morning I laid this little sleepy caterpillar on my lap and undressed him. The hubby had gone back to work and the in-laws were running some errand and it was just me and this precious baby. I remember weeping taking in every piece of him. His scent. His long fingers. I was hoping he would peek at me so I could try to determine his eye color in natural light. Yet, no matter what I did, I couldn’t stop looking at the newborn scars across his back. I was becoming a pro at picking him up and not pulling out stitches, burping him without patting one whole side of his back. Still it bothered me immensely that he had these scars that the healthy bouncing boy we had pictured would have to endure more bumps in the road as he grew.
At first I blamed the hormones. The doctors warned me that once I went home it would all hit me, and it did. I wondered what our life and future would be like. We were all in shock. We were blindsided by birth defects that were not determined in utreo, and upset that the ones that were discovered were pushed aside as “no biggies.”
Simple things like how to feed this child was something no one could tell me. Uncharted territory. It was all too much sensory overload. I felt I was in over my head. Nothing prepared me for what I would face. It seemed the scars and what it triggered in me was much more than hormones. The scar was a reminder to me and to others that he wasn’t like all of us. Here across his back was a road sign that our life had turned a different direction. That our anticipated path was blocked. The haunting scar made me rethink every choice I made. The gravity of his surgery at birth became more real. We knew all the internal struggles he was having and that incision was proof that it was not imagined. You couldn’t look at that scar and forget all the medical chaos that was going on inside him, no matter how ‘normal’ he appeared on the outside.
“Anyone can give up; it’s the easiest thing in the world to do. But to hold together when everyone else would understand if you fell apart, that’s true strength.” ~Christopher Reeves
How About You?
How did you feel when you finally took your NICU or PICU child home from the hospital? Did the emotions come crashing down on you as they did for Christine? Were you overwhelmed with a similar feeling of injustice, that this shouldn’t be happening to your child? If you’d like to leave a comment, please do. This is a safe place with readers who understand.
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Karen~ I love that he’s an amazing 13 yr old rock and I adore the term multiple exceptionalities! I call my other one my normal. I think coming home with the empty car seat and to an empty nursery. Even stopping to pick something up on my way to the NICU was hard, as I was still in maternity clothes and still looked pregnant. People would ask me when I was due and then if I said I had already had him (if I didn’t break down in tears) they would wonder why I didn’t bring him out…leading to more tears. Instead I wish I could of just done the mad dash like you. Thank you for sharing your story also.
Karen~ I love that he’s an amazing 13 yr old rock and I adore the term multiple exceptionalities! I call my other one my normal. I think coming home with the empty car seat and to an empty nursery. Even stopping to pick something up on my way to the NICU was hard, as I was still in maternity clothes and still looked pregnant. People would ask me when I was due and then if I said I had already had him (if I didn’t break down in tears) they would wonder why I didn’t bring him out…leading to more tears. Instead I wish I could of just done the mad dash like you. Thank you for sharing your story also.
I too had to wait to bring my youngest home. How awful, after two “Normals” as I now call them, to come home after giving birth WITHOUT my baby. Why did I feel so SHAMED? I live in a condo of row housing, and it was torture to leave my house and walk by all the other houses to the parking lot. It became a habit to check first and dash for the car. I remember driving past my spot to collect my thoughts if I saw people outside. I had 2 children at home and didn’t know what to tell my 9 and 11 year old…this baby was not supposed to have a long life…Without getting into gruesome details, mostly because I don’t want to dredge up the horrors we endured to keep him, let me tell you I am SMOILING today at my 13 year old with multiple exceptionalities! He is MY rock, he is MY connection to all that is brave and strong and innocent in this world. He is worth EVERYTHING we went through with him and I am blessed to still have him here!
I too had to wait to bring my youngest home. How awful, after two “Normals” as I now call them, to come home after giving birth WITHOUT my baby. Why did I feel so SHAMED? I live in a condo of row housing, and it was torture to leave my house and walk by all the other houses to the parking lot. It became a habit to check first and dash for the car. I remember driving past my spot to collect my thoughts if I saw people outside. I had 2 children at home and didn’t know what to tell my 9 and 11 year old…this baby was not supposed to have a long life…Without getting into gruesome details, mostly because I don’t want to dredge up the horrors we endured to keep him, let me tell you I am SMOILING today at my 13 year old with multiple exceptionalities! He is MY rock, he is MY connection to all that is brave and strong and innocent in this world. He is worth EVERYTHING we went through with him and I am blessed to still have him here!
Shelly, I’m waiting to hear the rest of your story, too. And I agree with you Denise. Christine’s story brings back so many memories. And my memories are 29 years old!
Jolene
Shelly, I’m waiting to hear the rest of your story, too. And I agree with you Denise. Christine’s story brings back so many memories. And my memories are 29 years old!
Jolene
Yes, Shelly, please do share the rest.
Christine – this blog is awesome!!! Thank you for sharing! We’ve all been there, and we know we have our TEF family on-line who all relate, but to read it like this – and relive our own experience again – I just don’t have words to say! I remember each minute of the 54 days we spent in the NICU, and the next 6 months at home.
Yes, Shelly, please do share the rest.
Christine – this blog is awesome!!! Thank you for sharing! We’ve all been there, and we know we have our TEF family on-line who all relate, but to read it like this – and relive our own experience again – I just don’t have words to say! I remember each minute of the 54 days we spent in the NICU, and the next 6 months at home.
Shelly~I’m on the edge of my seat waiting to hear the rest of your story!I’m fighting back tears as I can see you going through every step! I can’t imagine them sending him home to die, but I know it happens. 🙁 I became very involved in researching and advocating too. I can’t imagine my life with out him or his special needs. In tomorrow’s post I talk about embracing it. I send you lots of love on your journey, and if you can PLEASE share how your story with Sean turned out.
Shelly~I’m on the edge of my seat waiting to hear the rest of your story!I’m fighting back tears as I can see you going through every step! I can’t imagine them sending him home to die, but I know it happens. 🙁 I became very involved in researching and advocating too. I can’t imagine my life with out him or his special needs. In tomorrow’s post I talk about embracing it. I send you lots of love on your journey, and if you can PLEASE share how your story with Sean turned out.
Sean was almost 3 months old when he came home and still so very tiny. Barely 4lbs and a feeding tube. It was so wonderful to be a family, to not have to put our oldest, who was 10 years old, to bed to rush to the hospital to do the night stuff with Sean. It was a feeling I had been waiting for 10 years to have.
We went on a family hike…something we did before and thought we could continue despite having this tiny baby. How quickly our world changed. A few hours later I was on the side of the road giving CPR to Sean and realizing I really wasn’t ready for the responsibility and that Sean was probably more sick that the hospital let on. We did not get any instructions or anything. Love him, enjoy him was all. We later found out they sent him home to die. How sad they did not convey those messages to us. after this, we decided we needed to become educated and found a Dr who knew about TEF. VACTERLS came later as they found more birth defects.
Sean was almost 3 months old when he came home and still so very tiny. Barely 4lbs and a feeding tube. It was so wonderful to be a family, to not have to put our oldest, who was 10 years old, to bed to rush to the hospital to do the night stuff with Sean. It was a feeling I had been waiting for 10 years to have.
We went on a family hike…something we did before and thought we could continue despite having this tiny baby. How quickly our world changed. A few hours later I was on the side of the road giving CPR to Sean and realizing I really wasn’t ready for the responsibility and that Sean was probably more sick that the hospital let on. We did not get any instructions or anything. Love him, enjoy him was all. We later found out they sent him home to die. How sad they did not convey those messages to us. after this, we decided we needed to become educated and found a Dr who knew about TEF. VACTERLS came later as they found more birth defects.