What’s Next After NICU?

Everyone’s NICU story is different… some are short some are long, some are just for the babies to grow and some are for medical reasons; some babies go home and some don’t; no matter what the story is though, the trauma still remains.  There is absolutely nothing that can prepare you to have a baby and then be separated while they get precious care in the NICU.  I feel like even if you had a previous baby in the NICU, you still aren’t quite prepared for the journey ahead.


We’ve been home from the hospital for two weeks now. Our NICU journey was 265 days but instead of going home we went straight to the PICU for another 289 days- a hospitalization total of 554 days.  During our stay our baby boy needed to have a GJ tube (a tube that goes into his stomach and small intestines to feed him) along with a tracheostomy (a tube in his neck that helps him to breath) classifying him as a medically fragile and complex kiddo.  It was a very crazy rollercoaster ride, but now that we are home I’m honestly not quite sure how I feel about all of it.

While we were going through everything we didn’t have much of a choice but to keep our heads up and hearts hopeful while we move forward to face every battle.  Now that things have calmed down, our son is finally home, and my heart is ready to process the whole journey; I just don’t  know what to make of it all.  There are so many supportive groups, organizations, and websites like this one that aide you during your NICU journey; but like so many of you know the journey doesn’t always end once you leave the NICU.  Though that rough chapter has ended, a new one begins as we process and start to heal from all the trauma and stress we encountered.

Don’t get me wrong, our whole NICU journey wasn’t all doom and gloom.  We made the best of it and ended up with some incredible memories and friendships.  I’m so thankful to the medical team, who have become our second family and can’t imagine Brayden growing up without them now.  They each played such a vital roll in getting our baby healthy enough to come home that we will never forget what they have done for us.  They joked with us, helped us think through our decisions on how to best treat Brayden, cheered us on, and picked us up when we fell down.  Yet, I can still remember all my hopes and dreams that came along with our pregnancy that weren’t close to being fulfilled- like not being able to bring home Brayden’s twin brother.  We were one of the few families out there that had both a sad and happy ending in their NICU journey.  But since we’ve been home, I’ve been trying to figure out, “what’s next?” how do we process the trauma we went through, how do we grieve but carry on, how do we move forward with healing?  As much as I want to just close the book and say, “the end” I know it’s only a small part of our entire story.

I share all this with you to say, healing takes time.  I don’t believe time heals all wounds, but I do believe if we work towards healing it will come.  Trying to find answers to those, “why me?” “why does this happen?” questions won’t really get us anywhere.  But taking away a positive from the negative, trying to find rainbows after the storm- those are things we can find and use to heal.  Those are the things that bring purpose to the trauma that we went through.  I know it sounds ridiculous, especially when you are grieving a baby or have a traumatic birth but if I didn’t lose my son I wouldn’t have met other angel baby moms and dads out there who have become amazing friends.  If I didn’t have a baby in the NICU and face so many medical conditions I wouldn’t be here typing and sharing my thoughts with you.  I wouldn’t have made some amazing social media friends from sharing our story on instagram.  Things happen, but finding the good is the reason things happen. 


I don’t think the trauma we faced in our journeys will ever go away.  But I think if we can start looking for the good, for the things we wouldn’t have if we didn’t endure it we can begin the healing process.  It won’t be a quick process and I’m sure things will still haunt me and maybe even you, but healing is always a good process to begin.  It’s something we can learn from and grow from.

Big tight hugs till next time,

Jodi

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