At his birth, we were given the option to let him die or try to resuscitate him because he came so incredibly early. I now know that this isn’t an option offered to most parents in our shoes. Quality of life is measured by how few complications a child will have outside of the womb. Choosing life for a micropreemie was great risk to our hearts being broken, but we more than anything wanted to love him on this earth. We wanted Isaac to know that his story was important. And we wanted everyone else to know that he had existed.
I have been told on multiple occasions by friends and strangers that I am brave for sharing my story. However, I don’t feel it was out of courage that led me to share my story with Isaac.
It was out of defiance.
Shortly after Isaac was born, I realized there was nothing but clinical or linear checklists revolved around the NICU experience. While I wanted to understand what doctors were telling me about Isaac’s status, what I really wanted and needed was something to help me process what I was seeing and feeling on the day to day in the NICU. I wanted a clean and simple way to explain Isaac’s story to him one day, but also to those who had a lack of understanding of what the NICU experience is all about.
My pregnancy journal suddenly became obsolete and was a painful reminder of not only an incomplete pregnancy, but also an introduction to parenthood that was not “normal”. Instead of the comfort of seeing Isaac surrounded by sunlight and stuffed animals and loving parents, I had to witness his upbringing with machines, wires, and tubes.
This was his first home and as bleak as it was, I did not want to forget what we went through in an attempt to bring him home with us. I needed something that took my mind off of trying to meet the milestones (even though that was important to me). Instead I wanted to focus on us being present with Isaac in his world. There was nothing in the market at the time that was a NICU equivalent of a regular baby book, and if there was, it had a lot of the goal oriented prompts that I was not looking for. I wanted something that would display our story in a powerfully unique way.
So, I decided to write and design my own.
I wanted to make a book that was broad enough to address the collective path of NICU parents despite their individual circumstances, but I wanted the book to act as a thoughtful guide through a parent’s experience in the NICU.
This book is filled with not only space to take notes, note achievements, and track a NICU baby’s weekly progress, but I wrote twenty-one prompts (ten photo prompts and eleven writing prompts) to help parents gain a new perspective on their NICU experience. I wanted there to be a map of more general landmarks achieved in the NICU rather than an overwhelming checklist of milestones that often become blinders to the bigger picture of just loving and enjoying the time with one’s child. We came up with a constellation map that corresponds with a few landmarks that most families will come across, without it feeling too linear.
Right now, I am trying to decide on which cover color to go with: a midnight blue or an onyx black linen cover. I knew I didn’t want a standard vinyl binder, but something more luxe and personal. As a NICU parent, we were inundated with folders and pamphlets that felt clinical and disconnected from our story. I searched for almost two years to find the right manufacturer and finally came across the company that created Artifact Uprising’s baby book!
We had Isaac’s doctor look it over the first draft of the book, and he was ecstatic to have it in the NICU. So we started applying for grants as well as reaching out for support from family and friends, doctors and nurses, and past NICU families. We are hoping to go into production by March 15th of this year so that we can start distributing what we hope to be a blessing to many an invitation for other families to one day share their experience with those around them.
This week, I would like to invite you to give, even if it is just $5 to our GoFundMe page and ask you to consider sharing this with anyone you know, especially former NICU families! If everyone Keith and I know gives $5 and then invites the people you know to give $5, I know we could meet our goal quickly!
Thank you so much for hearing our story and for your continued support!