Having a baby in the NICU is an intense experience that hits you like a giant slap in the face. Then it waits for you to shake it off, and it dropkicks you in the stomach. Not only are you heartbroken and terrified and desperate to see your baby grow and develop and eventually be discharged, you are also constantly on the verge of losing your mind completely from the stress and exhaustion and worry and all the emotional ups and downs.
The good news is that there are many (many!) of us who have been through it, and we’ve learned a few things about how to hang in there. And while no families have the exact same experience, there is a lot of overlap in how parents tend to feel during a NICU stay. So if you are pregnant, have a baby in the NICU, or know someone who does, hopefully this list will help make life a tiny bit easier.
1. All Feelings Are OK
Navigating your feelings about everything that has happened to you and your baby is a big deal. You might be sad or angry or feeling guilty or frustrated or happy and hopeful or maybe just really ready to go home. You might feel all of those things simultaneously. Or maybe you won’t feel any of them and you’ll wonder if there’s something wrong with you.
There isn’t. Most importantly, you are not at all alone in feeling that way! I would guess that pretty much all preemie parents have felt similar things and can relate.
2. Find Your People
You will probably find that some of your friends and loved ones are much better at being supportive in a crisis than others. FIND THOSE PEOPLE. They are your support network. Then, find the people who aren’t doing such a great job at being supportive, and who are stressing you out or hurting your feelings (even if they don’t realize it!) right now. IGNORE THOSE PEOPLE (just for now! You need to take care of you!)
3. Say Yes!
So here’s the thing: people want to help. They really do! You will be surprised at how many people have heard about your baby and want to do something to make your life easier. We personally got a lot of, “my grandmother’s sister’s best friend added your twins to the prayer list at her church,” or, “my husband’s cousin’s wife wants to know how big your freezer is because she made a bunch of lasagnas”. Say yes to it all. All of it!
You are not being impolite!
You do not need to do something nice for them in return right away!
You do not need to assume that they are offering but are really hoping you’ll say no!
Don’t feel bad for needing help. And if someone asks what they can do to help – tell them something very specific. “I’m really having trouble keeping up with the laundry, could you help?”, or “I don’t have much time to make dinner, do you think you could make something I could freeze?”. They will likely say yes, and then you will have clean underwear and a full belly. WIN.
4. Say No!
The flip side of accepting help is needing to set boundaries. Your baby needs you, and being at the hospital all the time is emotionally draining. What makes it worse? Oblivious people who don’t realize how emotionally drained you are!
Maybe people are asking to come see your baby and you feel bad saying no. Say no anyway. Maybe you and your girlfriend had the same due date and she’s still happily pregnant and it kills you a little to see her. It’s okay to not see her for a while. In fact, it’s okay to do whatever you need to do to get through this experience while staying focused on what’s best for your child. Just say no.
5. Connect to Hospital Resources
- If you are feeling out of the loop regarding your child’s care, or that you have questions that aren’t being answered, ask for a Family Meeting
- Feeling uneasy about unfamiliar nurses? Ask about finding a primary nurse
- Want more consistency or structure to your baby’s care? Inquire about making a care plan for the nurses to follow
- Breastfeeding issues? Connect with a lactation consultant.
- Need someone to talk to? Social workers are available for support (and they may be able to connect you to further resources, like counselling or support groups).
- Reach out: Does your NICU offer classes or information sessions? Parent get-togethers or, Dad’s Nights? A Parent Buddy program? If not, there are a number of great Preemie groups on Facebook for NICU parents from all over.
- If you’re not sure what’s out there, ask!
6. Talk It Out
It will be helpful to talk about your experience. Again and again and again. And then talk about it some more. Talk to your family or your friends, or other parents, or to people on a message board, or to a psychologist or therapist. This will come naturally to some more than others, and you might not be ready to talk about it yet, but talking about your experience is one way to help you process it. (It helps, I promise.)
7. Write It Down
Sometimes, writing about your feelings is much easier than talking about them. It may surprise you how helpful it is to write about your thoughts and fears and happy moments and sad moments. In a way, it’s like you can write it all down, and then you don’t have to keep carrying it around with you. Start a blog, write in a journal, open up a private Word file on your computer, scribble on a napkin you picked up at lunch. You don’t have to share it. I would absolutely recommend giving it a try, even if you aren’t normally the journalling type (I’ve never written in a journal in my life, but I’ve had my blog for over a year now!)
8. Get Outdoors
You probably spend a lot of time inside the hospital. And, since your baby is there, you probably want it that way! But sometimes you need a break, and probably a bit of fresh air. The bonus is that even a small amount of exercise is great for emotional health. So take a walk, especially if you’re struggling. It might help make things a little bit easier.
9. Stay Inside
Some days I didn’t go to the hospital. Some days, I just needed to stay home and take a break. You might have days like this too. DO NOT FEEL GUILTY! Taking a day off when you feel you might be losing it will make it easier for you to go back to the hospital the next day and feel a little bit happier, which makes a big difference.
10. Transfer Might Suck
One of the most common things I hear from preemie moms is that leaving their original hospital for another can be very difficult. It makes sense – you are leaving a familiar place to another hospital where they do things differently, and you may have to push for Kangaroo Care, and the breast pumps are not the same and you’re stressed and want to go back to where you came from. But here’s the thing: transfer (in most cases) is a really good thing! If you are moving to a Level 2 hospital it (probably) means your baby is bigger and stronger and is that much closer to going home and so she doesn’t need a Level 3 hospital anymore. It might be an adjustment, but preparing yourself for the switch, and trying to keep in mind that almost EVERYONE feels the same way about transfer, will hopefully make it go a little smoother.
11. Going Home Might Suck
Finally taking your baby home will be such an amazing achievement for you and your family, and you’ll finally get to be together all the time and do normal mom and dad stuff and not feel like a NICU Parent anymore. Except, the thing is, it takes some time to not be a NICU Parent anymore.
When things start to settle down at home, you might start to feel some of the feelings that you were too stressed to think about before in the hospital. You might still be sad or scared, or grieving the loss of a full-term pregnancy and a healthy, fat baby. You might feel overwhelmed that you are now wholly responsible for your baby’s care. You might be worrying about the future. It’s entirely possible to love being home, while also finding it difficult. If you feel that way, it’s normal and very common. Review my earlier tips – they apply after discharge too! And also keep in mind that postpartum depression can absolutely affect preemie moms (and dads too!) once they go home. If you find yourself struggling, tell someone – your doctor, a therapist, your partner, a close friend…anyone who can support you in getting help.
12. Your Baby Will Amaze You
Maybe none of this has gone the way it was supposed to. You had to deal with things you never expected, and there may be lots of unanswered question marks about your child’s development or health in your future. One thing I know for sure though is that, no matter how being premature will affect your child’s life, your baby’s strength and survival and gorgeous, perfect EVERYTHING will blow your mind. It won’t be an easy ride, but it will be worth it.
(To my fellow NICU parents: anything to add to this list? What would you tell a new NICU mom about what’s ahead?)