Well, it’s been a while since my last post, and there has been so much happening in the last year! Between being a wife and mom, trying to have some level of self-care, and the general managing life through the pandemic, it’s been challenging. However, I could not let this month go by without sharing a few thoughts about the NICU and driving awareness around that experience.
While your baby may leave the NICU, the NICU never really leaves you. I’ve learned this over the past 3 and a half years as Emerson transitioned home from the NICU after his 191-day stay and we settled into our new normal. Even today, living through the pandemic has taken me back to some of the feelings I experienced when Emerson was in the NICU: alone, anxious, and helpless. Just like back then, I have the faith that everything will work out as it should, however, that does not negate my feelings as I am living through it.
Like I said, during Emerson’s NICU stay, I felt alone, anxious, helpless, and honestly many other emotions too. I was literally on an emotional rollercoaster the entire time. Some days I felt relief and happiness, while other days I felt depleted and jaded. It felt like people who did not live the reality of the NICU couldn’t fully grasp what my family was going through despite their thoughtful attempts to try. And how could I expect them to? My family was walking the path of uncharted territory to many of them.
The NICU is such a different world. It’s full of loud sounds, medical jargon, rules/protocols, nurses, doctors, respiratory therapists, lactation specialists, speech/feeding therapists, occupational therapists, and the list goes on and on and on… You meet so many people who are working to help your baby, and you learn so many new things that it overloads your brain. While you’re learning all these new things and meeting all these new people, you’re trying to advocate for your child. Meanwhile, there’s the whole administrative piece of understanding what benefits may exist in your state based on your baby’s condition and reason for being in the NICU. For example, with Emerson being born at such a low birth weight (1 lbs 1.5 oz), he qualified for Social Security Benefits and Medicaid. This was another thing we had to apply for and manage along with our primary insurance as well. Imagine managing this while in an inconsistent emotional state from day to day and living with the general concern of “is my baby going to make it” while trying to remain positive and believe “my baby is going to make it”… it’s not the easiest thing to do honestly, and it’s most certainly no fun.
I share this peak at what a NICU experience can look like to shed some light on it for those who haven’t experienced it, and to remind those who have that you are not alone. You are not alone in dealing with the trauma you experienced or in having those feelings come back up from time to time and managing through that. You are also not alone in receiving comments/questions that don’t land well and leave you feeling worse when the intent was encouragement. I see you. I am you. I get it.
Going forward, I hope we can all help validate the feelings that come with having a NICU experience and the impact it can have in the way moms and dads experience life after the NICU. It is super important to be able to do this because it helps us NICU parents feel seen, heard, and somewhat understood. Remember, emotional support is just as important as sending a meal sometimes. 💜
Now, here’s a small piece of our family’s journey through the NICU…