This is what I have learned and what I would like to pass on to moms about to embark on the same journey we did almost 3 years ago now. I have 10 points of advice that I wish another mom would have told me right from the start, as the first week is just the Doctors, nurses and NICU staff shoving paperwork at you, telling you what you can’t do with your baby, statistics, medical terms and the odds of your precious little miracle are. There is so much thrown at you, and it’s very overwhelming for a very hormonal mom, who may not be 100% sure what the events of the past 24 hours were.
You are over whelmed and don’t know where to start, here is my advice.
1) Setup your support system
If you can, set up a strong and reliable support system, of friends, family, and surprisingly Social Workers. You are going to need to have people to lean on, because your chances for PPD skyrockets when you are in this situation, and you are going to blame yourself. Even though nothing you did caused this, nothing would have prevented this chain of events, so don’t blame yourself.
2) Talk to your nurses and doctors, then get them to re-explain everything
You just had a baby, a preterm baby, a tiny preterm baby, and then they throw all this extra information at you that you have to retain for the whole of your stay. That just isn’t going to happen, nor is it a reasonable request of any mother in that situation. So, ask questions, ask the same question to 2 or 3 different people until you are 100% sure you are ok with what is going on. They make a game plan for your child, but plans change, so ask questions. Go over all the paperwork they give you with a nurse, or your NICU Social worker, make sure you are aware of everything in there.
Do not just put it aside and forget about it. There is a lot in there that can help you get some funding, free parking, and how to get money for meals while you are in the NICU with your child(ren).
3) Setup a schedule for yourself!
You need to look out for your mental wellbeing. So make a daily or weekly schedule and stick to it as best as you can.
You need to go home or to your room and decompress from the day, even if nothing happened that day, it’s still a scary and stressful place. You need to be able to relax for a bit.
For example, I took my hubby to work, headed to the NICU for 7/730 am, got the run down from the nurses about how the night went, got myself situated, waited for rounds to start and listened and put in my 2 cents when I could. I’d stay by my son’s bedside for tests, procedures and anything else that is going on. Then, I took a 30 minute lunch, and then I would leave by 3:30 pm to pick up my husband and we would go home cook dinner tidy the house relax, go to bed and start all over again the next day.
That was our Monday to Friday, on the Saturday and Sunday, we would sleep in till 8 am, be at the hospital for 9/930 am sit and visit and relax with our baby, listen and contribute to later afternoon rounds and leave at 2 pm.
We did not do this because we wanted to; we did this, because I needed to do this. We didn’t get to this schedule until we were in the NICU for 2 almost 3 months; my mental health needed this because it was too much. It is too much in the NICU.
4) Write down any and every question
Nothing you want to ask is irrelevant or unnecessary, but I don’t know about you, I never thought about anything I wanted to ask until I was at home. So instead of turning to Dr. Google (NEVER Do that By the way.) I would have a note book with me and write down anything and everything I wanted to ask the next day. You can ask the nurse or the Dr. during rounds; whom ever you think could answer the question the very best.
5) Talk to your NICU about bedside rules
Each hospital has different rules and regulations on what can be put at the bedside. Ours allowed up to have a drawer of clothes, baby blankets, hats and sock. They also allowed us to put books and some stuffed animals at the bedside so it, in a strange way, felt like it would at home in his nursery. My grandmother made an isolette cover that made the room feel brighter; we were allowed to tape small black and white pictures to the isolette of family members, as long as they can still see the baby and they do not block anything they need. We read our son books and showed him his stuffed animals during Kangaroo care. I mean if this was going to be our home for a while I was going to make it feel like home as best I could.
6) Make sure you’re taking care of your mental health
You need to talk to a Social Worker on the regular, even if you are feeling ok, get someone on the outside to talk to you and make sure you aren’t suppressing any emotions. Because PTSD leaving the NICU is very real, we may not think we are suppressing our feelings but we are, and once we get home all those feelings come rushing to the surface and we aren’t sure what to do. We may not have the outlet right then and there, so you need to make sure you have your mental health taken care of, sign up for counseling before you leave the NICU, so you have that person should you have a PTSD episode after you leave. Those episodes may not happen right away; they may go away and come back many years later. So, please try and get that in order before you leave the hospital with your baby.
7) When people offer help…take it!
Put your pride aside, and take what people are offering, casseroles, house cleaning, inviting you over for dinner, doing your laundry. Take it all, after a long stressful day at the hospital, are you really looking forward to doing the same mundane chores, or do you want to just eat and decompress? Take all the help you can get from you support system. Some people don’t know what to say to you during this terrible and trying time, so they want to show support by helping in this way. Take it.
8) PVR all your shows
There is going to be a day where, you are sick or are feeling ill and the hospital will not allow you come in, or your stress has caused insomnia. Your PVR will be your best friend, to give you mindless entertainment. Enjoy that time.
9) Celebrate every milestone, no matter how small
The first time they open their eyes, the first cry you hear, extubated, first good x-ray, and many other good things are things that should be celebrated to the fullest extent that you can. Find a fun way to celebrate; we bought a new book every time he did something great. We also bought stuffed animals for him once he was more aware of his surroundings. Find your own way to make sure every Preemie milestone is celebrated to its fullest extent.
10) Don’t be afraid to try again, and enjoy that pregnancy
It is hard to have a baby, even more so with your first baby, in the NICU, and makes it hard to think about another baby. But don’t fear that, and enjoy the next pregnancy. When I got pregnant with my daughter just under 2 years after my son, I didn’t enjoy it. And it was my full term pregnancy, and it was hard to enjoy it all when I was terrified something bad was going to happen. Find a way to be aware of your body and your baby, but enjoy it. Don’t be scared!
