A NICU journey is an experience like no other. For many of us, it will be the hardest thing we ever have to go through. During a NICU stay, we are tried and tested watching our little ones fight for survival. We learn about the inner strength we didn’t know we possessed… and we will almost always come out better people for it in the end.
Family and friends want to support us, but don’t always know how. Very few of them have had similar journeys, and it can be difficult for them to relate. They want to be encouraging when there are things to celebrate, and to help lift us up when the news is discouraging. The truth of the matter is, we have to be willing to share our journey with them, for them to understand the best way to help us.
In this post, we want to explain how we shared updates with family and friends during our sons’ first years, and how we recorded their unique journeys. These are examples of methods that worked for us, not necessarily the only way to go about sharing your stories.
Early on in our NICU journey, I realized that I needed to find a more efficient way to share updates on Connor’s progress with our family and friends. There just were not enough hours in the day to make all the phone calls and/or send out emails. (Keep in mind, this was early 2009, and Facebook was not being used in the same way it is now.) On good days, I felt like I couldn’t tell enough people how well things were going; but on the bad days, I knew that I emotionally wouldn’t be able to handle the rehashing of the depressing details. I also realized that I wanted to keep a more permanent record of all that we were dealing with for our own family’s sake… this NICU journey would be part of our family history.
I decided that the most efficient and healthiest way for me to share updates on Connor was to post updates in one central place that family and friends could check regularly and follow along. I also discovered that journaling was the best way for me to work through my myriad of emotions during our NICU rollercoaster ride. I already had a family blog, prior to Connor’s birth, so it was a natural transition to use that blog to publish updates about him. Not only did I share the nitty-gritty details and general progress about many of Connor’s NICU days, but I included some of my thoughts and feelings about how terrifying it was to watch him be so sick, how exhilarating it was when he finally pooped after his reanastomosis surgery, to how we really just tried to hang in there… day after day… holding on to hope that our baby boy would become stronger and well enough to come home. I continued journaling his life all throughout his first year, and a little beyond.
Many parents create baby books for their children when they are born, but I have yet to see a baby book that addresses a NICU journey appropriately, or in the way I would want. So in 2010, I realized I would have to make one of my own.
To create Connor’s baby book, I used Blurb to “slurp” my Blogger blog into their system. While it was a time consuming process, the end result was completely worth it – and now I have a book we’ll treasure the rest of our lives and be able to pass down to posterity.
In recent months, Connor has frequently asked to look at “his special book”, so it’s proven to be a great teaching tool as well, helping him to understand his tumultuous first year of life. We’ve also taken this book to the NICU with us to share with current NICU families, wanting to share a little hope with them that things will get better, and that they’re not alone.
Here’s another example I found of a beautiful retelling of a NICU experience:
Tracy created an amazing baby book of her premature niece, Brooke, including her birth and NICU stay, using the Project Life system.
I’ve heard some NICU parents lament that they aren’t able to have the beautiful newborn photos they dreamed about of their little one, that they aren’t able to tell the same type of story as their friends’ healthy, full-term newborns. I completely understand that sentiment – I truly do – but don’t let that stop you from telling your miraculous story! Once I accepted that the NICU was part of our story, I can see past the wires and tubes, past the scars… and all I see is my amazing, beautiful boy.
From the time we found out we were expecting, we knew we were going to have a huge support group through it all. Little did we know that at about 30 weeks into the pregnancy, I would become considered high risk and ultimately end up delivering our son early. So going in to all of this, we were aware there was a large group we would need to keep up to date on all the news surrounding me and our journey.
Facebook seemed like the best forum to use in order to reach the biggest group of people. We obviously kept our parents in the loop via telephone and in person as they visited often. But the amount of other family and friends we had praying for us was overwhelming and there was no way we could reach each of them by phone with all the updates and many of them were on Facebook, so we would post daily updates to Facebook. These updates started when I was released from a 4 day stay in the hospital and sent home on bed rest and all through Jayden’s 25 day stay in the NICU.
Although those 25 days in the NICU felt like forever, the days went so fast. Both Joel and I were very involved in the day to day duties of being a parent so between daily rounds with the NICU staff, pumping, cleaning pump parts, diaper changes, taking temperatures, etc, the day was over before we knew it. We would leave the hospital and come home and crash to go back and do it all over the next day. With all of this going on, it was hard to make several phone calls and give updates or to even keep a journal. We chose to do all our updates on Facebook and would often look back through all of our statuses to see how far Jayden had come since birth. It was so nice reading all the supportive comments and words of encouragement from family and friends each day. Each day we would take a picture of his whiteboard that stated who his nurse was and his weight. We took several pictures regardless of all the wires he was hooked up to. All of these went on to Facebook as well for family and friends to see.
When Jayden was almost one, I went to my Facebook account to look up and see how long he was on CPAP and almost wanted to cry. Facebook had changed their formatting and all the posts we had with his daily updates…..GONE!!! Thank goodness we only had a 25 day stay in the NICU to go through pictures and emails and were able to put all the pieces together in order to have all the information for memories, but we were very lucky to only have 25 days to worry about remembering. Looking back, we definitely should have kept all the information in a journal or blog format.
Facebook is an excellent way to give updates to large groups of people, but it is not the best way to capture your memories. For those that do use Facebook to hold onto all this information, I would strongly encourage you to copy the updates to an email or Word document to have in safe keeping for future reference.
Regardless of your method, it’s so important to keep track of the highs and lows because it’s all part of the journey and all equally important.
IF YOU’RE BEYOND YOUR ACTUAL NICU STAY…
It’s not too late to record your story! Write down the details you remember. Type it out, publish it. Just as we’ve been sharing your birth stories… the end result, however much you’re able to remember, will be something to treasure forever. Share your story with others, in words and pictures – as much as you’re comfortable with – we promise that it will bring hope to those in the throes of their own NICU journey.
You can help others to realize that they are not alone.