Dear NICU Mom,

This isn’t what you pictured. This isn’t what you wanted. This isn’t what you planned for. It wasn’t supposed to be this way.

But this is how it is. This is your new normal. This place will be your home for the next 20, 30, 100, 200 days. And it’s going to be okay. You will survive this. And Mama, you are not alone.

This journey will be hard. There will be days you feel like you can’t keep going. But you will. You’ll muster the strength. You’ll borrow others’ strength. There will also be days when you are so overwhelmed with joy that you feel like you will burst. I know it sounds crazy, but you WILL have those days in this place.

Every NICU story is different; they don’t all start or end the same. Remember that when you start to compare. Then, stop. Your story with your baby (or babies) is yours. No one else’s. Your ups and downs will look different. Your ups might be someone else’s downs. Your downs might be someone else’s ups.

I remember sitting on my phone in my son’s care-space scrolling through Pinterest looking for blogs that would tell me how to get through this. Something that would make me feel like it would be okay on the days that felt so far from it.

So, I am here for you now, Mama. It’s going to be okay.

If your baby was born early, you didn’t do anything wrong. Your body did not fail. You are not less than because you didn’t carry to term or because your pregnancy didn’t agree with you.

If you are here because your baby has genetic anomalies or medical issues, you did not do anything wrong. You are not being punished. You are now among the lucky few (myself included) who will get to experience the deep joy in parenting a complex child. Yes, it will be hard, but just like this NICU stay, you will have the strength to do it. It’s not what you envisioned, but it is going to be okay. More than okay. You will learn. You will grow. You will be shaped in ways you never imagined.

If I can give any practical advice it would be the following:

  • It’s okay to admit that this sucks. You didn’t get the birth or the newborn experience you dreamed of. You can cry and be angry.
  • Get primary nurses. If you and your baby connect with a nurse, ask her to be your primary. She will then get to take care of your baby every shift she works until you are discharged. This continuity of care will be so important. She will know your baby which means she will pick up on slight changes others might miss potentially catching problems before they become problems. She will become family to you guys. You’ll feel at ease when you walk into the care space and see her face. It will be easier to leave to take a walk, eat, shower, and sleep when you know the person caring for your baby. Ask for as many primaries as your hospital allows.
  • Don’t feel guilty for leaving. This is one I struggled with, and over a year later, I still struggle with. I wonder if I spent enough time in the NICU every day. I wonder if I was selfish for sleeping in some mornings or taking a longer lunch to meet with friends. Your heart will betray you on this one. It will always feel wrong to leave your baby, but you need to do it to be able to keep going. You may get to the point where your nurses will more or less have to kick you out so you will take care of yourself. I did. It sucks feeling like a “part-time” mom, but this is only a season. It will pass, and until it does, you need to take care of yourself.
  • Don’t apologize. Whatever you need to survive this is okay. If you need space and to be alone with your baby, that is okay. If you need help keeping your house clean, getting meals delivered, lawn care, errands, etc, that is okay. Every family will be different in how they need to be cared for when they are in the NICU. Figure out what you need, and don’t apologize for needing it. Those needs may change depending on how long you are there, and that is okay too! Do not sacrifice what little energy you have catering to other people’s view of what help should look like. Your only concern is you and your baby right now. Be honest about what you guys want/need during this time.
  • Find ways to make your baby’s care space feel more like home. Decorate as much as you are allowed. It’s these little things that will make you feel somewhat normal. Bring a blanket and pillow from home for yourself. You’ll need to nap, so you might as well be comfortable.
  • It is more than okay to become a “germaphobe.” Your tiny baby hasn’t developed the immune system that other babies have. People may have a hard time understanding this, but stand your ground. Depending on when you go home, you will more than likely need some form of isolation to keep your baby safe. Be selective about who you have come over. Be the “crazy mom” who makes everyone wash their hands to the elbows for two minutes before touching any surface in your house. Be the mom who doesn’t let others hold your baby for a while. It’s okay! That time will come.
  • Speaking of holding. It’s okay to be selfish with your baby. Hold him/her as much as you can, and don’t feel obligated to share. The NICU experience robs you of so many of those newborn snuggles. It’s okay to make up for lost time and not share for a while.
  • Find your silver-linings. Every day, find three things to be thankful for. Did your baby make a cute noise? Did your baby take his/her first PO feed? Did your baby go more than an hour without a desat? No victory is too small to celebrate. Some days, it might feel harder to come up with three than others, but I know you can do it. Even if you just sit in the fact that you guys all made it through one more day, that is enough.
  • Ask your nurses what supports your hospital has for families. Think about which of these supports feels like your style, and use it!
  • Get on Facebook groups for families like yours. Online support groups are such a gift when you are trapped in the hospital. There will be strangers who “get” your situation more than your closest family and friends. You need those people. And they need you!
  • Be honest about how you are doing. PPA, PPD, and PTSD are so common in NICU moms and dads. Take care of yourself so you can take care of your little one. There is no shame in asking for help.
  • Don’t forget that you are a good mom–wait, the BEST mom. It looks different than you expected, but you were made to be this little person’s mama. You can do this.

I am cheering you and your little one on. You are a warrior, Mama.

Published by

Brooke Norton

I am a follower of Christ, wife, mama of a medically complex kiddo, and a coffee enthusiast. I have created this space because I feel called to share our story of hope, heartache, and undeniable grace from our good and beautiful God. This will be a space of unapologetic honesty when it comes to parenting my sweet Evan. At times what I say may offend some, but I will shout our truth loudly because that is what Jesus calls us to. This is our story. This is our everyday. This is our Evan.

3 thoughts on “Dear NICU Mom,”

  1. What a beautiful post. I needed this when my child was seriously ill many years ago but I got very little. Still, God was there. He filled in some needs, others He let them be, because there was much I needed to learn and ponder from the suffering.

    My biggest struggle was with guilt. Guilt that I was burdening people. It made me take on more and more. In an odd way, it worked to my benefit: I encountered God more and more. Of course, I barely saw it that way then; thankfully, I do now🙂.

    Today, I try and fill pain pouches – for other people, everyone, not just those with ill children. Where I did not get support before, I try and be that support for others now, because I understand how debilitating fear and loneliness can be when you have a very sick baby.

    I hope this post goes far, Brooke. How many spirits it could and will lift!

    Like

  2. Beautiful and I relate to it. My baby was premature by a few weeks and it did make me feel like I failed her. 4 years later I now look at her and think “maybe not”

    Like

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