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NICU Survival Guide (Part 1)

May 24, 2018

 

Have you ever wondered what it is like to have a premature baby? Probably not. It isn’t something most parents anticipate and unfortunately, for those of us who have had premature babies or babies in the NICU, you normally don’t get too much warning. After delivering my identical twin boys at 28 weeks and 1 day (3 months early), I became intimately acquainted with the NICU and hospital life. I am sharing what I learned from our NICU days in hopes that you will never need this information but will have it handy in case you (or someone you know) is suddenly faced with this alternate universe called the Neonatal Intensive Care Unit (NICU).

 

My husband and I knew at just 7 weeks into our pregnancy that Twin B was going to struggle. Even with a tumultuous pregnancy, however, we had no idea what was ahead of us. I delivered my twins via an emergency c-section due to hemorrhaging caused by a placental abruption. What does that mean? Basically, all of a sudden, the babies HAD to be delivered so while my husband was fighting rush-hour traffic, I was put under general anesthesia and the twins were delivered within two minutes (after two minutes, the anesthesia reaches the babies through the placenta and that is not good). The twins were rushed to the NICU before my husband and I even knew what was happening. 

 

All told, Twin A, Mason, spent 55 days in the NICU and was considered a “Feeder-Grower.” He just needed to cook for a bit longer. Twin B, Austin, however, got all of the bad luck. Austin spent 4 ½ months in the NICU and another 3 months switching between the PICU (Pediatric Intensive Care Unit) and regular Pediatric floor. After numerous surgeries and scares, he came home with battery packs for his feeding tube and central line as well as an ostomy bag and an around the clock medication schedule.  Talk about a demanding baby! 


 

 

 

  
Thankfully, my twins are now happy and healthy toddlers but I learned a great deal about how to survive the hospital world through Austin’s medical journey. I learned so much, in fact, that this topic will take TWO blog posts!

Here is what I discovered, in Part 1, of my NICU Survival Guide (What I Wish I Had Known).


Survival Tip #1. Stop and take a long, deep breath.

I felt like Alice in Wonderland the first time I entered the NICU- I had fallen down the rabbit hole. My body had just betrayed me and evicted two, tiny, helpless babies without my permission. When I first saw my precious 2 pound babies under the ultraviolet lights of the NICU isolates, I asked if I should stand back from the lights because I was nervous that they would harm the babies I was carrying. Well, those babies were actually right in front of me, no longer in me. It was a mind trip.  All I could do was take a minute to stop and breathe. It isn’t easy to pause when the NICU is a flurry of activity and everyone is fretting over your babies but it is essential. Life might not make sense for awhile but take a long, deep breath and deal with each individual moment, one at a time.

 

 

This is the first picture I shared with our family and friends:                                                             
                                               

 

This is what it was really like, 12 hours after my emergency c-section:

 

 

Survival Tip #2. When family and friends ask how they can help, point them to Amazon.
 

My husband and I had just moved to California, leaving all of our family and friends back in Canada, when we had the twins. Family back home asked what they could do to help but I didn’t have time to figure out what we needed; I was just trying to keep up with all of the acronyms the NICU doctors were throwing at me (CPAP, VSD, NPO, PICC, TPN, IMV, you get the idea). Hindsight is 20/20 but if someone were to offer help now, I would point them to Amazon. With one baby in the hospital, one baby at home and my husband working full time, our shelves were pretty bare. Queue Amazon. Amazon Fresh delivers fresh food from your local grocery store, Amazon Prime Pantry delivers non-perishable food and drinks while Amazon Restaurants delivers meals from local restaurants. That is everything you could ever need!  In addition to Amazon, there is also Munchery, Doordash, Ubereats, the list goes on and on. There are so many meal delivery services and I would tell loved ones to bring food or send food as the first priority.

With hindsight, I would also ask for more ways to document and celebrate our NICU milestones. There are so many sweet baby keepsakes modified for our tiniest warriors that I didn’t even know about back then! I have included some of my favorites from Amazon as a starting point. Our hospital days felt so overwhelming and full of despair that I didn’t know how to celebrate or that I would even want to celebrate those milestones one day. If you are there for awhile, however, I recommend that you embrace it.

Here are some gift ideas to help embrace your NICU journey and celebrate your powerful preemie:

  • Our NICU Journey: A NICU Journal For Tracking Daily NICU Activities For Your Baby 
     

 

  • NICU Milestone Cards from Every Tiny Thing: Celebrate the Special Moments in the Neonatal Intensive Care Unit

 

  • The Littlest Peanut: A Journal Milestone Babybook for Preemies by Shannan Wilson
     

 

  • Good Things Come In Small Packages (I Was A Preemie) by Candy Campbell
     

 

  • Peanut: A storybook for mighty preemie babies by Lindsay Nolan

 

 

For story books, Good Things Come in Small Packages is my husband’s favorite book and I love Peanut: A storybook for Mighty Preemie babies (even though I cry every time read it). I spent countless hours snuggling my little nuggets in the NICU and reading to them about the strength of preemies.


Some families only have to spend a few hours or days in the NICU while others have to spend a few months. For those of us that spend a few months there, I recommend settling in for the ride. Part 2 of my blog post will focus on self-care (what’s that?!) and building a community.

Thank you for reading my blog post about tips for surviving the NICU. If you have, or have had, a baby in the NICU or loved one in the hospital, I would love to hear your tips as well.

Sincerely,
A Proud Parent of two, determined, NICU Grads

#fightlikeapreemie #preemiepower #milliondollarbaby

 

 

 

 



 

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