Thursday, February 21, 2013

More than a Preemie

This has been rolling around in my head for awhile now and honestly, I'm not sure how well it will be received. But, I have always tried to share my honest thoughts here.

As a preemie parent, we are thrust into this world of teeny, tiny babies, wires, life saving devices and measures, and decisions no parent should ever have to make. It is stressful, isolating, devastating, and the journey is long. This journey can also bring joy. We celebrate the tiny (literally) milestones that some parents have never had to think about and never will. We are thrilled with a few grams of weight gain, by a baby taking a binky, or losing a few monitors and wires. It is a completely consuming time, which I believe is how it needs to be in those moments. 

But, what happens after that? Now I have this child, who was once extremely fragile and fighting for his life. We have become used to his medical needs demanding our full attention, we want to give him what is best. We have lost hours with him laying in a hospital bed that now we want to make up for. What now?

Cohen's beginnings will always, always be a part of his story. They will always be a part of our story, too. We are so incredibly proud of what a miracle he is and how far he has come. We will share his story and we won't be ashamed. But we don't want him to be defined by being a micropreemie as that is a piece of his story, but it's not his whole story. 

We are in a different situation than some. Our little micropreemie is healthy. His day to day life, for the most part, isn't affected by his prematurity, other than being a little "behind". For some of you, this isn't the case. Your preemie's health concerns or needs continue on and it is a part of your every day life. Maybe we are the "lucky" ones who get out of the NICU journey somewhat unscathed. Oh we certainly have our wounds and battle scars. While some of the things and feelings we have dealt with are spot on with what a "normal" preemie parent goes through, some of them are also very different. Maybe it's because we lost a son at the same time, and that changes our perspective, I'm not sure. This isn't to say that all those feelings are valid and expected, but different for us in our situation  Yes, it was hard and there are many times I wish I could wipe certain parts of it out of my memory, but all of it goes together to make our perspective what it is today. Prematurity is a part of Cohen's journey, but it's not his whole story. 

Cohen is more than a preemie. He is growing into a toddler with his own rambunctious personality, which of course is probably thanks to his NICU journey. Those experiences will always go with him and be a part of him. A part of him. They aren't who he is. Now, every experience is different and some of you may be just beginning your NICU journey or even if you are a few years out, you may not be to a point where the preemie experience can only be a part of your journey. And that's okay because we all process our experiences differently. 

For us, personally, we are ready to take Cohen's micropreemie status and move forward. We have been through a lot of struggle and heartache the last two years. It hasn't been easy and we will never forget or "move on", but just like with the loss of Carter, we will move forward. Our experiences will help us to continue on and make the best of this life that we can. We will take the lessons we have learned throughout and carry them with us as we continue on this journey. 


  1. I've been meaning to write about this too...I just don't know if I'm completely ready to move forward yet. But I do know that we will...someday. It helps to read about other families that are able to move forward, to know that it is possible. I finally figured out, though, what is not allowing me to move forward completely...fear. Fear and anxiety overshadow most everything and I'm exhausted from it all! (In fact, the "theme" of the blog post I'm working on is just that...exhausted!)

  2. Jack has lots of labels, but they don't define him. You go, mama!

  3. I could not have said this better myself! Sometimes I feel like we are caught in the middle. My daughter is doing very well, and wonder if I'll feel like I have to explain that she is small for her age because "she's a preemie." I love your sentence about how your experience helps for you to give him the best life that you can!