The article was The hidden, human cost of 'distressed' babies: NICU parents suffer PTSD symptoms
and while not reading the article, I was upset by the comments left on my friend's post. She was talking of how awful it was when her twins were born prematurely and had to stay in the NICU weeks after she was released. Many of her friends offered support as they too experienced extended NICU stays. I however while reading them could not think anything more than "Stop your friggin whining, so your kid had to stay in the NICU for a few weeks, YOUR KID CAME HOME!"
Part of me feels crappy like I'm negating her feelings. I know this woman, I know how being away from her babies was hard on her, I know this in my heart. But still another part of me wanted to so bad to write on her post "At least your baby came home!" But then that is so much negating her feelings and making it all about me. I still wanted to though! I wanted to say that I could relate to how they were all feeling. How scary a time it is in the NICU. How there is so much uncertainty. How the nurses are like family. How like you have a need to know everything little thing happening to your child and yet it is still not enough. How you feel helpless. How you leave cause you have to, and every time you do it a piece of you breaks off at that doorway. I get it!
Remember in the darkest hours of the night, when your mind went to those places. The places you never want them to go but they did anyhow, and you couldn't stop it. The what if places. How absolutely terrifying it was to have those thoughts and then you would close your eyes tight as you could and shake your head and say out loud, NO! Everything's gonna be ok, she'll be ok, he'll come home soon and we can be a real family then. That scary place where just maybe your baby wasn't ok, and he didn't come home. That imaginary place was my reality. Mine and many many others who would never ever leave that cold, dim-lit room and go to our happy place.
I will say that I don't think there is a good reason to have your baby in the NICU but obviously some stories are more serious than the others. Obviously if your baby is there then there's a need for it. The woman in the article had a long road of uncertainty with her child born at 24wks. Maybe I feel a little less crappy about her journey. Having my daughter born at 26wks, I completely understand the struggles she faced. They were much much different than that of the mother who's baby had less serious road. But see I still feel that is crappy of me to say cause I am negating the severity of their needs. You see what I mean though right? Someone's baby that was born 3wks early may not have the struggle, they may not necessarily have anything wrong with them but size and weight, all of which a short stent in the NICU can help with. That is not something that can compare with someone's baby that has no viable lung support. There are definitely specific circumstances to each story and I may be trying to generalize all babies that come home and those who don't. I think that is wrong but my heart still yearns for the Momma who deep down in her soul knows she will never leave the hospital with her baby and no amount of "I had to leave them there for 5wks while they gained weight" can compare to that kind of pain.
So now researchers say that these parents, the ones with the happy endings, have PTSD. Really! Yes it was hard! It was terrible! So why do the parents that lost everything get hushed? Why are they forgotten? You think we don't have PTSD, OH and maybe still do, and will, FOREVER! Because guess what, losing your child, a piece of your being, is extremely stressful. And what's even more stressful is trying to figure out what your life is meant to be afterwards, way more stressful! A life long battle of what ifs, what should have beens, and what could have beens. You think you're over protective with your grown up NICU child, try having a baby after a loss and see what over protective is.
The woman in the article says this,
“The emotional impact of leaving the hospital without a baby in your arms and seeing the other happy moms leaving with their balloons and flowers…it’s just a very different reality for parents of preemies,”In this woman's story, there was probably several times when she wondered if she would ever have that chance. I left the hospital with a balloon and flowers. I left with a "cough pillow" and a plastic baggy of pamphlets on grieving on my lap . I left with everyone I passed seeing my tear stained face as I was rolled through the lobby with said balloon and no baby in tow. I left knowing she was not coming with me. She would be with a stranger, in a box, in the back of a cold car, and I wouldn't see her again for several days, and then, forever more.
PS If it sounds like I'm all over the place, I am. I am having one of those mind vs heart struggles cause frankly sometimes I want to strangle people who show no empathy because they can't see past their own pain. There lies the struggle because I try to see other people's point of view and validate it. I hope to not sound like a complete bitch, but I know the pain they speak of could have been so much worse and frankly I'm glad they don't know it the way I do. I do wish they would recognize it.
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