When you first arrive in the NICU, it’s so hard to imagine how the next few weeks or months might roll out. We asked some graduate families for their stories of how they coped with their stay, and what practical solutions they found. Thanks to all these parents for sharing!
Josee: “The two things that helped cope the best were keeping a journal, which I love to read once in a while, and making some good fellow mommy friends in the NICU.
Useful things others did for me? Sending prepared food was lovely. My mother also bought me some clothes as I had nothing there. We had many people who wanted to visit and found that overwhelming. My husband made a Facebook page to keep everyone updated without actually having to talk to anyone. I really wanted to just be isolated within my immediate family and the hospital, and my hospital friends. It was nice of everyone else to respect that need for privacy.
When we got close to going home I think was the worst. I think it’s because anticipation really revs up and you become very impatient and all of the weight of the experience starts to feel tangible, likely because you work on autopilot while in the NICU, and suddenly the end is in view, and it snaps you back to reality in a way. Does that make any sense? LOL. We were very impatient with each other (my husband and I) and very frustrated the last two weeks. It really helped to split up for a few nights to each do our own thing. He went to his parents and I stayed in the NICU, of course, because I couldn’t leave.”
Heather: “Some refer to it as a rollercoaster, but as an avid runner I like to compare our NICU journey to a marathon. Our son was born at 23 weeks+ 5 days and spent 2 months at the Sunnybrook NICU. Like numerous other NICU moms I pumped around the clock (10 times/day) and commuted up 1 hour per day (one way) to visit our son. To be as efficient as possible I stuck to the same routine. On a typical day I would leave the house after my 8:00am pump so that I could arrive at the hospital by 9:30am. There were never enough hours in the day at the NICU and family members, who we did allow to visit, would often comment on how busy my days were. When I wasn’t pumping, I would participate in Rounds, assist the nurse with handling (i.e. diaper changes), do Kangaroo Care (for at least 2 hours – usually 4 hours a day but depended on how my son’s day was going), read children’s books to our son and absorb as much information as possible from other parents in the NICU. By 8:00pm, when my husband would arrive at the NICU after work, I was usually mentally drained. I would brief my husband on our son’s status over dinner in the Family Lounge and he would stay for a couple of hours while I headed home to pump and get meals organized for the next day. There was never a shortage of frozen meals in our freezer from neighbours and friends, but cooking was comforting for me, and made it easier to come home to an empty house, so I often looked forward to going home to cook a meal. When I was fully recovered from the C-Section I also added a running into the mix, mostly to clear my head after a stressful day. I also found it helpful to keep a change of clothes in my son’s room at the NICU as I did, on occasion, opt to stay over when my son didn’t have a great day. It was always nice to put on fresh clothes the next day!
Eventually, when we were transferred to a Level 2 NICU, my routine remained the same, except that I was able to spend more time at the NICU as my commute time was a lot shorter.
I think most NICU moms look back on the experience and wonder how have they managed. I think you just find a hidden strength that you never knew you had.”
Dan: “We lived far away from the hospital, and so would come down one day, stay over, go home the next day and sleep at home. Sometimes we felt bad about not being there all day, every day, but we needed to keep things stable for our son at home too. I think you find the way to do the best YOU can, and that’s as much as you can do. Feeling guilty all the time will just burn you out. We also took days off when we needed to. When we got transferred things were easier, especially for my wife. Being closer to home made a big difference, although we missed the Sunnybrook team big time.”
Lauren: “We had our little guy at 25 weeks. I was in the hospital every day and night for the first two weeks. I made sure I was at rounds in the morning and met both the day and night nurse in person – I wanted to know who was taking care of him! The first two weeks were extremely stressful, emotional, and filled with ups and downs as I am sure everyone can relate to. During the third week of our journey my husband pointed out that we had another three months to go and it was time to listen to everyone about BALANCE. So we made a compromise. I would take Sunday off for me to run errands, nap, just catch up on life as long as he went! We now each have a “day off” each week. We take care of all the meals and household chores for the other on their day off so they can focus on what they want to do with their day. This one day completely reenergizes me for the week ahead.
I hope this helps others manage their journey.”
Celeste: “The biggest thing for me is that there is no one right way to get through this. Everyone is full of opinions about what you should do, but they don’t know you or your situation. So you have to make up your own mind about what you and your own family need. If I wanted to be at the hospital, I was there. If I needed to be home, I went home. That changed when we started getting ready to take my baby home. I needed to be at the NICU all the time for feeding. I found that hard, but I got through it. I just kept telling myself it wouldn’t be forever. Now it all seems like a dream.”
Sara: “One thing I didn’t know up front that I wish I had known, is that whatever schedule you come up with really only works for a week or two. Then your baby will change and learn something new, or you’ll be able to change your pumping schedule, and so everything else will change! So at first you want to be there all the time because you’re feeling scared. Then you work out a way of balancing your life better. But then you get transferred and change everything again! And then your baby is getting ready for home and it all changes again! So I would say don’t feel like you have to plan the next three months. Just come up with a plan week by week and change as you go. Living with uncertainty is hard but I think it is a normal part of the NICU experience.”
