Best Advice From Two NICU Parents
Whether you anticipated a NICU stay or it came as a complete surprise, it's going to be difficult and it's going to be emotional. My husband and I didn't know anyone who personally had any experience with the NICU that could give us advice, so we learned on our own throughout our stay.
Our first NICU stay from June 2018 until October 2018 was our longest at 123 days. Our second stay was in March 2020, for 11 days. We were pros by the second time around (even though it was COMPLETELY unexpected that time), and we used the same tips we learned from the first time.
These tips should help you while your baby is healing and growing in the hospital because they should lessen some of the anxiety. We also came up with some tips for you to pass along to your friends and family members. Although they are most likely trying to be helpful and caring, they don't realize sometimes they're causing more stress and anxiety. I'll tell you how we dealt with that too.
(This is just our advice based on our personal experience, we understand everyone has a different journey and may not agree with all of these tips.)
Tips For Parents Currently In the NICU
Make A Facebook Group or Blog
In my opinion this is one of the most important things you can do. Family and friends are going to be asking you for tons of updates on your baby and it IS going to be exhausting having to explain it over and over again. You're going to learn a lot of medical terminology quickly that most people who haven't experienced it, will not understand.
Make a private group on Facebook or Blog. By making a private group, you can decide who you approve to be in the group. I used this group to do daily updates on what both kids were medically going through. I was able to explain in depth what the medical terms meant, and provide pictures for the group to see. For example, when you say "my baby is on the oscillator today at 50% oxygen and is getting blood draws every 2 hours to monitor their levels" not everyone is going to know what that means, so if you have to explain is 5 times a day you're going to get annoyed and exhausted.
We encouraged people to ask questions in the group and would answer them if we had time and the answers. I found this to take a lot of stress off our shoulders.
Talk to Nurses
The nurses are your best friends while you're in the hospital. They're with you and your baby the majority of the time, especially if your baby is intubated then it's 24 hours. They are your best resources throughout this whole process. Make sure you ask them questions and ask them until you understand what is going on. We had the best nurses who encouraged us to ask questions.
The closer you get to the nurses, the better you're going to feel when you have to leave your baby there and go home. After about a month, once I got to know many of the nurses I felt like I was just leaving my babies with our friends to babysit. They have a lot of training and they LOVE what they do, otherwise they wouldn't be there.
Something I felt weird about at first, but then realized it helped ease my anxiety was calling the nurses while I was at home. If it had been a few hours since I was at the hospital or either baby was having a particularly rough medical day, I would call the nurse and ask for an update on how everything's been going. I also would call as soon as I woke up to see how the night went. There was always a sigh of relief when you woke up in the morning and realize you didn't get a call from a nurse overnight.
Do Not Google
I'm sure the nurses will give you this same advice, but do not Google anything medical. As I said before, you'll learn a lot of medical terms and information in a short amount of time, and a lot of it will sound scary. You'll be tempted to Google some of it, but don't. You're just going to get scarier information by looking it up online. Your babies' medical journey is their own and things do not always follow the textbook as they develop. Trust your nurses and doctors and ask for clarification from them if you don't understand something. They will be able to share more information based on their experiences.
Trust The Doctors
Trust the doctors! They have been through this and have taken care of lots of babies. They have your babies' best interest at heart and are doing what they can to minimize the amount of negative or long term effects. We learned that every doctor has their own style. Each week it was a different doctor in charge of the NICU floor. Some of them did a slow and steady approach while others like to push the babies a little bit faster. There was no right and wrong way, however we did have our preferences of some doctors over others.
Be Patient
The best, but most difficult advice is to be patient. You want the hospital stay to end ASAP, but not before you and your doctors and nurses are confident that your baby is in the best medical condition they can be to come home.
Everyone who has stayed in the NICU will tell you that towards the end is the WORST time because 1. you've been there so long you're sick of it 2. you can see the light at the end of the tunnel. Towards the end we were only waiting for small things such as bottle feedings to increase and oxygen to decrease. We could see we were almost on our way home, but it felt like it was taking forever. At the beginning you're so overwhelmed you can't even think about when you'll be home. Just take a deep breathe and if you can see the light at the end of the tunnel just know that it WILL come.
Use Resources
Use resources to help you get more information and care packages to help with your stay. We learned of a few resources during our stay. Most of these resources will provide you a lot of support and can connect you with other parents who have been through similar journeys as you.
You can view my NICU resources page here: Support During The NICU Journey: Best Resources for Preemie Parents
Keep Working If You Can
It will be tempting to use your maternity/paternity leave while your baby is in the NICU, but if you can, don't use it yet. Your baby is healing and there isn't much you can do, especially if they were born super early or are very medically complex. Working will help pass some of the time and hopefully make the days go by faster. You can visit before and after work and still get your baby snuggles in. Plus, while you're at work you can always call in to chat with the nurses to see how the day is going. Once your baby comes home you'll want to spend all the time you can with them so save your leave time for then!
Make It Feel Like Home
Make your babies' NICU room feel like home. Bring some pictures and small decorations to decorate with. It'll make you feel better about visiting if you feel like you have a personalized space. However, don't overdo it because there's always a chance your baby will switch rooms and you don't have to have too much stuff to take down and put back up.
I found there were some products that helped me get through the stay and gave me things to look forward to.
You can see my best products for your preemie page here: Best Products For Your Preemie During & After A NICU Stay
Tips For Family Members & Friends
Don't Ask When The Baby Is Coming Home
This is the number one question we got almost daily and it's probably the worst question you can be asked. Don't ask the parents when their baby is coming home. If they knew, they would be shouting it from the top of a mountain. There's so many factors that go into a preemie being able to come home and it can feel discouraging to be constantly asked when they're coming home. Plus, it just keeps reminding the parents over and over that they don't have their baby home.
Don't Ask A Lot Of Questions
The parents who have a baby in the hospital are just as exhausted as parents who have a newborn baby at home. They're constantly worrying about what's going on and having to take in a ton of information in a short amount of time. We understand as our family you want to know every detail, because who wouldn't, but it's draining having to answer questions constantly. If the parents make a Facebook group or blog to write updates, check for that daily to get your answers!
However, if you're questions involve asking how they're doing and if there's anything you can help with, that is greatly appreciated! We were lucky in the sense that our micropreemie was our first child, so we didn't have to worry about other kids at home. I can imagine parents who have other kids need much more help and will appreciate if you ask what you can do to help.
Don't Give Advice Unless You Have Personal Experience
I don't mean this to sound harsh, but unless you have personally experienced a NICU stay or have experience in this area professionally, don't try to give advice. The best advice for parents during this time will come from the doctors and nurses, as well as other parents who have been through the same thing. Be there for your family members and try to take their mind off of things. Take them out for dinner or a movie (parents, yes! it is ok to do these things while you have a baby in the NICU. Take care of yourselves too!)