10 Things I Learned from our 165 Days in the NICU

My dear friend Laura has had two babies born prematurely. With both she went through quite an ordeal and learned many things during their lengthy time in the NICU (neonatal intensive care unit.) She was kind enough to share some of her story with us in honor of November being Prematurity Awareness Month: 

An adventure unlike any other began when my son, Oliver, was born at 26 weeks. Weighing in at 1lb 10oz and just 13 inches long. A ‘micro-preemie’. I have written some thoughts that I felt would have helped me during my son’s 5.5 month NICU stay.

Dear NICU Mom,

Congratulations on your little one. I’m so sorry that you are now learning about the ‘secret world’ of the Neonatal Intensive Care Unit. Having a preemie can be IS a very scary experience.

It’s a roller coaster unlike anything you have experienced. As much as we would all love for there to be a succession of great days, the likelihood of that happening is slim. There will be days that are easier. But it is never easy to leave your child in the care of strangers. Having come out the other end, here are 10 lessons I learned from the NICU:

1. Even when the advice of the NICU nurses is not always what you want to hear, try to listen. 

I had a nurse at the beginning of our stay who, while she probably could have said it nicer, recommended less stimulation of my 26 weeker. In the long run, this is very much what helped him improve. I don’t think any parent wants to hear that they shouldn’t touch, hold, and talk to their little one. I’m not saying that you shouldn’t either, but keep in mind, sometimes less stimulation is better. 

At the beginning, I freaked out about that advice. In fact, I requested that I never have that nurse again. But as time went on, I could see for myself that my little guy did better when there was less noise and less stimulation. He loved kangaroo care (skin to skin time), but other people visiting, talking, touching: nope.

2. Let friends and family help you. 

As much as I didn’t want to be a burden, I needed help. People actually want to know what they can do to help. I didn’t particularly want to talk to people, but I did need the help. Especially as I have two other kids. Tell your friends and family what you need and let them contribute. 

3. Ask about getting primary nurses. 

I didn’t know that this was something that was even possible until several weeks into our stay. I think every NICU is different but I cannot stress enough, GRAB ON TO ANY STABILITY. There are always going to be changes in the attending doctors. There are always going to be different RNs. If you find some that you love, that do well with your child, ASK if they will be your primary nurse.

As I said earlier, the NICU is a roller coaster. My analogy of the constant nurse changes was that while I understand it’s a roller coaster, I would at least like to stay on the same tracks. Every nurse is different. The little things make a big difference for your child. Be his/her advocate and demand some stability. To say I am passionate about this point would be an understatement. The longer you are in the NICU, the more you will understand the need for some stability.

Hopefully, you will find a new definition of family by the time you exit. I did.

4. Be an advocate for your child. 

If there is a nurse that you feel doesn’t do well with your child, you are absolutely within your rights to ask that they not be assigned again. There were two instances that I did this. The first I mentioned above. The second, we had a very traumatic experience in the NICU one evening (someday I will write about it). While what happened could have happened to any nurse (it was an equipment problem), I felt that the nurse was a trigger for me in terms of reminding me and causing upset. Upset mom = upset baby. So I felt it better that she not be assigned to us again.

Also, you know the saying “Momma knows best”, you are the one that is there EVERY DAY. There is no other single person in the NICU that is there every day. If you feel something is off, speak up. Don’t be afraid to question things. You are part of your child’s medical team. 

This goes both ways too. My son’s body temp would go up if the temperature in the room was too high. No joke. If he had a nurse that didn’t know this and turned the temp up overnight, and swaddled him in a warm blanket, in his next set of temps he would have a ‘fever’. I knew this. His primary nurses knew this but if someone was working that didn’t? That could mean blood tests and unnecessary medical treatment.

5. Don’t let the monitors rule your life. 

It is easy to be distracted and just stare at the monitors nonstop. Especially at the beginning. They can be scary.

My son required a LOT of lung support for 3-4 months of his stay in the NICU. You get to learn a whole new language to understand what is happening. There are SO many different types of oxygen support. I had NO idea. Now I do.

Back to my point though, try to ignore the monitors as much as possible. If there is a problem, you will know. Towards the end it was hard to keep the monitors properly attached to Ollie. He became a professional at squirming out of everything (including IVs). Learn to observe the physical signs vs. the monitors. Most of the time when you go home, you don’t have the monitors, so you don’t want to rely on those anyway!

6. The last few weeks in the NICU are almost as stressful as the first few. That ‘almost going home’ stress SUCKS. Be prepared.

Is he eating enough? Is he gaining weight? Breathing well enough on his own? It’s very frustrating. A couple points that I would have changed: Don’t try and go too fast. Don’t force it. I think with Oliver we pushed a bit too fast on his bottling. He ended up getting a g-tube due to oral aversion. (A g-tube is a gastronomy tube inserted through the belly that brings nutrition directly to the stomach.) That did get us home but kinda sucks too. Obviously every baby is different, follow their cues. Don’t push it.

7. Do as much kangaroo care as you can. 

If the baby is up for it, DO IT. Your baby is still forming. The less time he/she has their head on that bed the better. I did kangaroo care every morning for months once he was up for it. That skin on skin contact is great for the baby AND you. If I could have stayed all day long I would have.

8. Don’t expect your adventure to end once you leave the NICU. 

Every baby is different but there will be follow up appointments. If your baby was born months early like mine was, even the adjusted age expectations can be off. Things are just DIFFERENT. Go with the flow. Ask about developmental care and get your little one involved. We have in-home visits regularly. Even if your insurance doesn’t cover it, there are programs that are free.

9. Your stay in the NICU will forever change you. 

Everyone’s experience is different. Some are easier. Many are much shorter than our 165 day stay. Some are longer. Every baby will have different issues and sometimes the treatments are different. There is no book or set path that is going to make it easier or more straightforward. I wish there was.  Which brings me to my last point.

10. You are not alone. 

Search facebook, google, find a forum or a group. Talk to other preemie parents. It helps. If you are in a room with other parents, become friends with your ‘neighbors’.

For me, posting about our daily adventures in the NICU, asking for prayers and thoughts from my friends helped tremendously. When you are in the NICU, you can feel very alone. Having that connection to the ‘outside world’ helped me so so much.

No matter the length of the stay, it’s all worth it in the end. I hope this helps a new NICU parent. I am always happy to lend an ear and talk about our experience

Oliver is now 9 years old and is doing great. It’s truly incredible to see how far he’s come. Thank you for sharing your story with us Laura!