First and foremost, I pray that your son or daughter never has to spend any time in the Neonatal Intensive Care Unit. As if the birth of child, as exciting as it is, is not stressful enough, having to deal with issues that require a NICU stay adds an additional dimension that is welcomed by no parent. Our twins were born at 32 weeks, spent 62 and 65 days in the NICU, and in the midst of it, felt like it was never going to end. We were completely unfamiliar with the NICU life and what it entailed for our babies and for us as the parents, so I hope this advice can help those in a similar situation.
Before I dive in, I want to make it clear that while there are always risks with any premature birth, our girls arrived relatively healthy and we are so grateful that they never experienced any major issues. The bulk of the time in the NICU was spent learning how to feed on their own and working on eliminating breathing spells. There are so many parents who have much different experiences and may not even know if their child will live through the experience. My heart especially goes out to those parents. Some friends of ours had a baby born at 23 weeks and if you Google the likely outcomes of a baby born at 23 weeks, it doesn’t look good. Praise the Lord, those friends now have a completely healthy toddler, but their road to get there was more than I can even imagine.
So here we go!
Don’t be afraid to limit visitors
We quickly realized that the NICU was not just sitting around holding babies and hanging out. Georgia and Wynnie were on strict schedules with taking vital signs, feedings, medications, and other things. We had to give nurses a heads up as to when we wanted to hold them and we were instructed to hold them for at least thirty minutes at a time, because (at least in the beginning) it was very hard on their bodies to change settings. Having visitors meant explaining the hospital’s strict rules as well as our own wishes and it added to the stress of being in the NICU. Right after the twins were born, Kayla had plenty of visitors in those first few days who weren’t even able to see the babies, and once she was discharged we decided to only allow our immediate families to visit. Even then they had to come at specific times to work around the girls’ schedules. After the girls got home, we had friends and family over often and it turned out to be the best decision for everyone.
Track your progress and celebrate victories
I did this by committing to sending a daily update to our families in a group text. I started taking notes in a separate journal, but quickly decided that the updates captured everything I would want to put in a journal anyway. These progress updates allowed us to keep perspective as the days began to run into one another. We also learned that positive progress is not to be taken for granted and every victory is something that we should take some time and reflect on. In addition, this has allowed us to look back on our NICU journey and remember some of the details that we otherwise would have forgotten.
TREAT. YO. SELF.
We went to Starbucks every day. Every. Day. In our normal monthly budget, we plan for about one visit per week for each of us, but all the rules went out the window during this two-month span of our lives. We felt like it was a unique season of life, and it gave us enough of pick-me-up (both the caffeine and the white and green cup that they market so
well) on the way to the hospital each morning that we decided it was something we wouldn’t worry about. Once both girls were home, I’ll admit that we didn’t return to our normal budget right away (sleepless nights will do that to you), but we did eventually get back on track and haven’t regretted our temporary splurges for a minute. If there’s something that is going to help you get through this time that you don’t normally do, go for it (in moderation of course). It sounds stupid, but a $4 coffee played a critical role in our NICU journey.
When people ask how they can help, find a way to tell them
It was amazing the support that we had from our families and closest friends. They helped us immensely in getting through that difficult time. One of the challenges we faced was when people offered to help and said things like “Please let us know if you need anything!” or “If there’s anything I can do, please let me know.” While they were sincere in their offerings, I felt uncomfortable telling them what we really did need. Our biggest need was childcare for our son while we were at the hospital and it was also really nice to have dinners to make our evenings easier after a long day. One of the biggest helps we had was when a friend took the lead on a meal train. Another idea is to create a list of things you need, and if someone asks how they can help, share this list with them so they can help you in a way that works for them. When a friend of ours had a baby in the NICU for an extended stay, we just sent a Chipotle gift card for them to use while at the hospital.
Listen to estimated discharge dates, but don’t treat them as gospel
When our girls were in their first few days of life in the NICU, the question I kept asking any doctor or nurse who would listen was “When do you think they’ll get to go home?”. I knew there would be a ton of variables and any estimate would be just that – an estimate – but, I wanted to hear what every doctor had to say. Four to six weeks was the consensus, and assuming that my kids would be scrappy little fighters (as we dads tend to do), I had my heart set on four weeks, five at the most. Well, once that six week mark hit, I had become impatient. It was in the additional weeks following that I began to think about how ungrateful I had been. Our girls were born eight weeks early and the biggest obstacle they both faced was feeding on their own. It could have been so much worse, and for many babies in the NICU, it is. So while it’s good to have a loose timeline in mind, continually try and recognize what you have to be grateful for.
Don’t feel guilty if you don’t spend as much time at the hospital as you imagined you would
Early on, we pictured ourselves staying overnight multiple times a week. This didn’t happen. We stayed a couple nights while our son slept over at the grandparent’s house, and it was stressful. We slept in hospital recliners, woke up every couple hours to feed the girls, and felt like we spent the next few days recovering from a terrible night’s sleep. Especially when the weeks continued to pass without much progress, we started dreading our overnight stays. I know of couples who spend every night in the NICU and I am in awe of their commitment! For us, we decided to be there during the day as much as we possibly could and keep our overnights to a minimum. Trust me, you’ll do plenty of bonding in the middle of the night with your newborn once they come home!
Lean on your closest friends and family
I don’t know what we would have done without the help, support, and prayers from friends and family. We found that the NICU life consumed us and it was hard to detach after we left. Hanging out with family and friends allowed us a mental break from what was going on with our girls and while we still thought about them constantly, it was a great opportunity to de-stress and relax.