Thank you to graduate mom Alyssa who wrote this beautiful piece for us. We know the first few days in the NICU can be really hard for families, and so it’s important to hear from people who’ve been there.
Alyssa and one of her gorgeous girls
Whether planned or unexpected, you have found yourself and your baby/babies in the NICU. Whether your stay is hours, days, weeks, or months-long, your journey is just beginning. Below, you’ll find some suggestions for getting used to your “new normal.”
1. Stay as long as you like. You are more than welcome to sleep in your baby’s/babies’ room. However, if you prefer and are able to go home, do not feel guilty for not staying with your baby. Being well rested will help you to stay healthy and be better equipped to help care for your baby. The nurses can be reached any time of day or night, and with their Vocera, you can even talk to your baby! Don’t feel bad if you call more than once during a shift; some mums like to check in on their baby while pumping.
2. Appoint a check-in person. Friends and family will want to be kept up-to-date with information, and offer support. Though well intentioned, some NICU families can find this overwhelming, and sometimes the things our loved ones say to us can actually make us feel worse. One of the easiest and best ways for everyone to know how you and your baby/babies are doing is to appoint someone who can dispense information as needed. A parent, friend, relative, even a co-worker who is the point of contact will ensure that you do not feel guilty for not responding to messages, texts, or phone calls and will keep everyone who needs to know what’s happening in the loop.
3. You have EI options. Though it may not be the first thing on your mind, as a parent in the NICU, it is disheartening to think that your maternity or paternity leave could be shortened because your baby is in the hospital. However, there are options for delaying the start of your leave until your baby is home. There are two routes that are most commonly used by NICU families. The first is to use up to 16 weeks sick leave prior to your maternity or paternity leave. The second is to apply under the sick or critically ill child benefit. Depending on your length of stay in the NICU, your social worker can help you decide which is the best choice for you, and can help provide the necessary documentation to apply.
4. Pick and choose your visitors. It is entirely up to you if you would like visitors or not. Check with your nurse about bringing children to visit, though generally siblings are allowed. Don’t feel badly about asking your visitors to roll up their sleeves, remove jewelry, scrub up, and use sanitizer. These are NICU staples, and can be explained to your guests as the rules to visit. Anyone who refuses should be asked to stay in the hall. Remember, this is for your baby’s safety and well-being. Have visitors leave messages on your white board as a nice welcome every time you come into your room.
5. Take a break. Sometimes, being in the room with your baby can be overwhelming, and you may need a break. Remember to drink lots of water, which is allowed in your baby’s room. Ice and water machines are located near the Nursing station, and families can use them. The NICU Family Room is located just past the double doors to the NICU. There, you will find a kitchenette, TVs, children’s area, computers, tables and chairs, a couch, and a washroom. The kitchenette has many plates, bowls, cups, and cutlery for use by NICU families only. Families are also permitted to leave food in the fridge and cupboards, labeled with their names. The TVs and computers are available for you to use, and can be a welcome distraction. Siblings and visiting children may prefer to spend some time watching TV, or reading books.
6. Ask questions. Don’t be afraid or intimidated to ask questions. You should feel comfortable with the care your baby is receiving, so ask questions if you’re unsure about a machine, a medication, or even a change in routine. The alarms on your baby’s monitors may go off, and this can be scary. Understanding oxygen levels and appropriate heart rate numbers may help you feel more at ease when in the room. Feeding tubes, oxygen masks, and medical tape may alter your baby’s looks at first, don’t be alarmed. CPAP can also make your baby appear puffy or squished. Depending on the size of your baby, they may not have much fat, and won’t look like a typical newborn. It probably isn’t how you envisioned your baby will look, but they will grow, and any concerns you have about their appearance, particularly if it’s related to a medication or a machine, can be brought up to your team.
7. Talk to someone. Whether there is someone in the NICU, a family member, or friend, there should be someone you can talk to. While having your own private room in Sunnybrook has many advantages, the one disadvantage is that it can be isolating. Speaking with other NICU families can help as they understand all too well what it can be like. The parent coordinator, breastfeeding resource nurses, social workers, and other staff are all there when you need them. Sunnybrook’s NICU also has a Facebook page for families who turn to each other for support, advice, and to share milestones and memories. This group, and many others like it, allow you to stay connected no matter where you live.
8. Don’t isolate yourself. The first few days can be so overwhelming, but it’s important to remember that you’re not alone. Sunnybrook runs many programs in the NICU. The Milk and Cookies education program, which is open to anyone, offers important information for your new life in the NICU, as well as once you’re home with your baby/babies. Seeing the doctors, nurses, and other staff outside of providing care for your baby can make them more approachable, and allows you to ask questions and seek advice. You also have the opportunity every day of participating in rounds, which can be intimidating at first, but is also a wonderful way of becoming an active team member in your baby’s care. There are also programs designed specifically for dads, and support groups for moms who are dealing with pumping. Knowing that there are other people who feel similarly to you is an important and essential part of your NICU journey.
9. Find something for you. Whether it’s blogging, writing a journal, keeping a scrapbook, painting, knitting, or even reading, it’s helpful to have something that is all yours. Many parents find having something tangible that they can do beneficial as it helps to both distract from what’s happening with their baby, and gives them something to look forward to. Many families create memory books or scrapbooks of their NICU time to later share with their children. Being able to look back and see how far you and your baby/babies have come can feel amazing.
10. Remember, you will get through this. Being in the NICU is hard, really hard, no matter how long you are there. Chances are that you never imagined this for your family, and the sense of loss for your dreams can be heartbreaking. Being a NICU parent is a long journey, and yours is just beginning, but you will reach the end. You will get through this.