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Mother and Baby together

Tips for Families in the NICU

The NICU can be a stressful and confusing place for families, whether navigating it for a few hours, or for weeks. The communication (or lack thereof) between different care providers can be bewildering, and make it feel like there are ever moving goal posts. Even more bewildering is that the NICU can be scary, frustrating, joyful and peaceful place all AT THE SAME TIME, making it overwhelming for already exhausted new parents. After talking to several families who have personally experienced it, I wanted to try to put together some tips for you, if you find yourself in that special place.


First, a logistical note: the hospital bands that you and your partner receive when your baby is born have a set of 5 numbers; these numbers will also match the band they put on your baby. The bands identify you as a family unit. Make sure that you do not take off your bands until you are all discharged.

Okay, now onto the tips:

  1. Make sure that you know who the person in charge is for the shift, and how to reach them. This person is who you can go to for clarification, and to find out updates on your little one. Ask for someone to write down the times that the care team does rounds on the floor so that you can make sure that you or your partner is with the baby during assessments. This lets you be a part of the conversation and plan of care. Make sure that you have your phone or a small notebook to take notes from the care team and mark down who is caring for what aspect. This will ensure you feel you have a sense of agency, and also help you keep track of all the moving parts. 
  2. Plan with friends and family for pet care and/or care of your other littles. You don’t want to be trying to coordinate care while you’re in the hospital. 
  3. Commit with your partner that you will both go out and get some fresh air every now and then, even if you don’t want to. You need to clear your head. Rotate with family that you trust to be with your baby, so you can step away and sleep. Yes, they are in good and safe hands with the nurses, but having them with family at all times just feels better. 
  4. Discuss options for where you are staying during your child's stay at the hospital. If they are in a little incubator style bed, you will only have a chair, and will have nowhere to sleep. Options: Go home in shifts, stay at a friend's house, or rent a room at a hotel. Check with the hospital for a family housing plan. Some hospitals have an agreement with nearby hotels, and some have a ‘Ronald McDonald House’ style support for families. Do not think, “I’ll just sit beside this incubator all day and night.” This isn’t a plan that’s going to work out for anyone. You need to rest, so figure out where you’re going to go, and make it as easy as possible.  Every meeting that you have with the team, ask when you can be in a transition room so that you can stay with your baby and prepare for going home as a family unit. 
  5. Food and hydration for you and your partner are so important. You HAVE to take care of yourself so that you can process all of the things happening each day. Organize regular deliveries of food and drinks from friends and family. You and your partner need to remind each other to eat and drink. Being in the NICU is a total time warp: you can go for HOURS, or even a day or two, before you realize that you haven’t had any water. Remind your partner of these things, and ask them to remind you of them in turn. 
  6. Keep track of the goals for the day. Each specialist that is offered while you are in the hospital can jump in with their own viewpoint, trying to help: Sometimes these are things that NEED to happen before you can take your baby home, but some can wait a few weeks. Make sure you ask. You are allowed to advocate for waiting on treatments or assessments. “No” is a perfectly acceptable answer. Ask “Is my baby at risk if we wait?” “Can this wait?” “We cannot do or take in more information for today, let’s circle back tomorrow.” A lot can get thrown at you during this time. Give yourself the time to make sure you understand the why behind the what, so you and your partner remain on the same page as the care team. Read more about the Why behind the what in this article.
  7. You are not simply an observer in your child's care, you are their advocate. Stay sane, limit the number of things happening each day, and focus on achieving the goals that will get you home with baby. The rest can wait. 
  8. The hospital does provide vouchers for the cafeteria for the parents while their baby is in NICU. Be sure to ask about this, sometimes they do forget to provide it.


I also want to stress that you both need to have grace for yourself and the process. I cannot say it better than a friend stated it:


“Another thought about the NICU, something I would tell myself if I could go back in time: enjoy the small, perfect moments. Even though this isn’t what you wanted or planned, you can find moments of peace where you can connect with your baby as best as the monitors and lack of privacy will allow. I was so aggrieved that the first days of my baby’s life weren’t what I imagined they’d be that I wasn’t even able to recognize or cherish the small moments when everything WAS good, when I was able to hold her in a chair and kiss her head. All I could focus on was how everything wasn’t what I wanted, and it prevented me from being grateful that there I was, holding the baby I always wanted! So that’s something I would tell others: don’t forget to enjoy what you can. Don’t forget gratitude. If you have a living baby, you have a lot to be grateful for.” ~ MH (Mother)


I highly recommend having a doula for everyone, it adds so much support and comfort to have someone to bounce things off, find your pediatrician earlier than we did, ideally before the third trimester and interview several to find one you trust and like so you can ask them questions about the care you are receiving in the NICU and its not an additional stressor. You can request a different nurse if you don't like the one you have or what we usually did was ask to limit the interactions/interruptions from nurses we didn't care for (we asked politely but directly to limit the poking and prodding for the day). When we had nurses and doctors we liked, we tried to utilize them as much as possible, asking questions, taking feeding demonstrations, bathing demonstrations, taking all of their help and education we could get and trying to soak it into our new parent brains. 
There was some very frustrating miscommunication from the hospital about Fio's discharge requirements. It felt like they were constantly moving the bar for her to meet before letting us leave. And then even after they set a solid requirement, we had a new doctor come in and tell us we got bad information and it was actually 2 days more of monitoring than they had told us. I say this to tell you patience is required and there is sometimes not a lot you can do about the bullshit bureaucracy of our healthcare system. We considered leaving early against medical advice after being jerked around but ultimately decided leaving two days early was not worth the risk if something were to happen. I think we knew in our gut Fio was ready to be home but I think she may have been more ready than Annie and I, because we were fortunate to get our best nurse the next day who taught us a whole bunch, so the world has a funny way of sorting things. I would say to evaluate your decisions based on what you feel is best for your family and baby and try to remove your feelings of frustration and anger with the system or the exhaustion/time from the hospital. "
~ CW (Father)



You are not alone, it is hard, but reach out. There are parenting groups online, you can reach out here to us at Kooshlie Care, and we can help connect you with other people. We are also available to help support you via phone calls, visits, and food drops if you need it. You got this. 


 Join our community group- it is small but growing Kooshlie Community group. You can also reach out to me directly through the contact section on the website.