- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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)
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Closing
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.
