This is a heavier post. When my wife and I started talking about this blog launching, I knew I wanted to include information on being a parent to a preemie, and on our NICU experience, just in case someone happened upon it and it would be helpful for them. It can be hard to sort through all the scary information when you’re in the NICU!
Sometimes our three months in the NICU feels so distant, and with staying in the house due to COVID and Flynn we really are in our own little bubble. But preemies, especially ELBW (or “extremely low birthweight”) babies are typically those that have more medical needs and while Flynn is doing outstanding, we still do things a lot differently than the typical new parent experience.
The thing is, when you’re first in the NICU you may not know what the road ahead looks like. We certainly didn’t. Those first few weeks we didn’t even know if we’d get to bring Flynn home, and though we hated thinking about it, it was just the reality of the NICU journey being so unpredictable and scary.
Over time, as my wife and I asked questions and advocated for our son we learned what we could expect from home life whether we brought home Flynn with a lot of medical needs or not so many. The experience will always be unique because babies set their own timeline, but there are several universal things to expect (in my opinion) that I would love to share.
As a note, this mostly applies to babies who have a longer stay in the NICU (more than a week or two), and may not apply to every baby or parent experience! I tried to be as universal as possible.
- You may (and should) get an at-home nurse who visits 1-4x a month to track your baby’s growth and potentially administer shots like the RSV vaccine.
This can be done at your doctor’s office, but most preemie babies qualify for at home health care. With an immunocompromised or medically fragile child, especially in a pandemic, taking them less places is always a good idea. At first, we had a weekly nurse visit to check weight and make sure Flynn was gaining appropriately. Then it switched to once a month, and now involves giving the RSV vaccine through flu season to give Flynn extra protection should he get sick.
2. Feeding will likely be hard.
Especially if feeding was hard in the NICU, which it is for so many preemies. We tracked every milliliter Flynn drank and constantly worried. He had reflux issues that made feeing a painful experience for us both for several months! Just know that if your baby comes home on the bottle, on an NG tube + bottle, or purely fed via tube, the feeding experience doesn’t just “click” for most preemies.
After 4 months of exclusively pumping, trying to latch for breastfeeding constantly, and lots of stress we switched to formula. While it didn’t help Flynn immediately with his feeding issues, it did help my wife become a happier, healthier parent.
We learned that fed is best – no matter how – something that was a struggle in the NICU since the doctors focused so much on breastmilk. Happy parents = happier baby, in my opinion.
3. Your baby may have complex medical needs.
The NICU will prepare you for many experiences. Once your baby is ready to come home, they’re ready — even if that means they come with a whole suitcase of equipment like oxygen supplies, feeding tubes, or whatever else. The NICU should train you — and if you aren’t comfortable, advocate! You want to make sure you feel like you can take care of your child no matter what happens, and the experts are there to help.
You may not come home with any big medical needs either. We didn’t. We were afraid we’d need to go back to an NG tube if Flynn didn’t eat better the first few weeks and it would’ve been scary but okay if it happened. Preemies are on their own timeline and really call the shots.
4. Get used to “adjusted” vs. “actual” age.
This is true of any baby categorized as “premature” but especially really early babies! Flynn was three months early, so we subtract 3 months from his “actual” age, which is based on his date of birth. Every medical professional will usually ask for both ages. Honestly it took me a while to get used to! Even with friends and family we typically say something like: “Flynn is 8 months this week, but his adjusted age is around 5 months.” It helps avoid confused looks if we were to point out our 12 pound 8 month old without any additional info, but keeps it simple.
5. Your baby may qualify for state or county programs like Early Intervention.
Obviously this is different everywhere, but most states and counties have programs that are in place to help monitor your child and support their development. Usually these are free and while they may be a little hard to navigate, try and put them in place while your child is still in the NICU so you can get the help of your NICU’s social worker. Flynn qualifies for free physical therapy which we do twice a month (at home!) and has helped us feel confident in his daily activities and developmental progression.
I can’t say I really led the charge on figuring this stuff out, my wife really did. And I’m grateful for that, because as the stay at home parent having access to these programs has set us up for success. But as daunting as setting everything up including insurance is, it’s really doable by anyone, especially if you ask for support from the NICU or your pediatrician.
6. It’s okay to not like your first pick of your pediatrician.
Preemies can have complex medical needs and/or just different considerations. We asked for recommendations from the NICU nurses (pro tip!) and ended up at a pediatrician group we’re still not loving. And that’s okay — switching doctors until you find someone you really click with is stressful. But it’s important to feel like you have the best care for your child, so you’re not hurting anyone’s feelings by switching if your first (or second or third) pick doesn’t feel right.
7. Comparing your child to typical babies is hard.
We all do it, even parents of babies who had the most “normal” birth experience and timeline for their kid. But as a preemie parent it can be really disheartening to compare your child to one of the same “actual” age. Try and look only at the “adjusted” age of your baby when looking at developmental milestones, and focus on the ranges of each milestone. Flynn still hasn’t hit a lot of 4-5 month milestones, which is his adjusted age at the time of writing this… but he does already have his two front teeth, mimics words, and has started solids.
Your baby is your baby. As long as your medical support isn’t concerned, they’re doing fine on their own little preemie timeline — and they have 1-2+ years to catch up to their peers depending on how early they were.
On a serious note, your baby may also just have complications from their early birth that mean they’ll never be on the same timeline, or fully catch up to their peers. And that’s okay, too. You will be the best support system for them no matter their circumstances.
8. The NICU experience may stick with you for longer than you expect, and in unexpected ways.
For my wife, this meant when Flynn had to go get hernia repair surgery and go back to a hospital setting, she was suddenly dragged back into our “NICU” days and realized she might have more trauma than she realized. This is normal. It can be different for each parent in the same situation, too. Just know it’s completely normal to have trauma, PTSD, anxiety, depression, etc. — for both parents.
You may need to seek out help from a professional, which is daunting when you may already be seeing so many different people for your baby. But again, a happy parent is a good parent, so advocate for yourself and support your partner whenever possible.
9. Your baby may have to go back to the hospital.
This one is scary. We knew Flynn needed surgery around 6 months (actual) and suddenly he needed it around 3. But there are also unscheduled reasons to need the hospital and they can happen to any baby, and especially to preemies. Just know that you will still be their advocate, maybe even better than in the NICU since you learned so much there! Best case scenario, your kiddo never sees a hospital again, of course.
10. The first day home is weird.
While there are so many things at home that are “weird” with a preemie at times, I wanted to end on a lighter note. That first day home? It’s strange. We had 4 false starts where we expected to bring our son home only to have him brady/desat the day of and earn 5-7 more days of baby jail in the NICU before he was ready to try again.
So finally bringing him home, out of the hospital and into the car, and then up our front steps? The feeling is like no other. You get all the stuff in the house, you go up to the nursery that’s been waiting for too long for your baby to be home… and then it’s like, now what? My wife and I sat on the couch, taking turns holding our son, admiring him together, and just breathed. We suddenly could be with him 24/7 (which your NICU may allow, but ours didn’t due to COVID, we couldn’t even see him together for three months — more on that someday).
Let’s just say the adjustment is real. Maybe it’s like that for every parent of a newborn but it felt especially weird to us to suddenly not have experts nearby every second of the day. I think we just stared at each other for a long time, laughed a little in disbelief, and then realized we needed to take it one day at the time… for the rest of our lives.
I hope this was somewhat helpful! If you have a question about coming home from the NICU or about the experience, we loved the NICUParents subreddit on Reddit, and you can always comment right here and I’ll try and get back to you thoughtfully.