Surviving the NICU in 10 Steps

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As the mother of a very recent NICU graduate, I know a thing or two about the ins and outs of the NICU. As a family, we got to know both the level 1 and level 2 nurseries quite well. The NICU is a jumble of nurses, doctors, emotional parents, rowdy siblings, medical equipment, hand sanitizer, and cutesy decorations. All can be incredibly overwhelming when you’re going through the ride of your life. At least ours was. Here are my top 10 recommended steps on how to survive your own NICU journey.

1) Take a breath

The moment you found out you were pregnant, and in the months to follow, I bet there were tons of thoughts running through your head. Will I be a good parent? Who will look after baby? Will I go back to work, or stay at home? What kinds of diapers should I use? One thought that probably wasn’t going through your mind – how will I cope spending hours upon hours in my baby’s hospital room? Nobody expects the weeks after your magical day to be spent in an NICU. Before you begin each day, take a breath. Remind yourself that you are strong and you can do this. This is not your reality forever and discharge day will be here before you know it.

2) Don’t watch the monitors

I know how impossible this step is because the monitor was my go-to resource to check my son’s well-being. Yes, you will have a mini heart attack every time your baby has a “spell”.. for the first few days. But hopefully you will learn that the monitors are not there to scare you, they are there for the nurse so she/he can respond if your child needs a little attention. These are your first moments with your child and you will regret staring at the screens instead of staring at your beautiful baby.

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3) Take advantage of support at your hospital

Hospitals have tons of perks and resources available to parents of children in the NICU. Ours for instance offered meal tickets for nursing moms, lactation consultants, and free-of-charge geek squad where we could rent a laptop and print out pictures. Most facilities also offer you a social worker to discuss any questions you may have about getting resources, going back to work, managing your home life, and anything under the sun. You are probably also wondering what such an intensive hospital stay will cost you. If you’re worried about how you’re going to pay the bills, seek out financial assistance. Our hospital actually had an agent contact me to help me fill out an application for medical assistance. This was such a relief! You don’t want to have to worry about money on top of spending time with your little one.
Keep in mind that there are also tons of websites, blogs, forums, Facebook pages, etc. that are strictly dedicated to supporting NICU parents. Just like this one! You’re on the right path.

4) Celebrate

Yes, it’s serious that your baby is in the hospital. But this does not mean you can’t celebrate the same way you would a full term baby! Take a moment to think about how lucky you are! The hard truth is that not all babies survive an early arrival, but your little one made it. It’s important for you to not hold your breath. Relax. Celebrate every milestone, no matter how insignificant it may seem to anyone else. Each wire removed, each IV taken out. The first kangaroo care session. The first tiny giggle. Even the first seriously gross diaper. Do yourself a favor and smile! There’s no better medicine.

5) Take notes and ask questions

Every day, a doctor or nurse practitioner will come to your baby’s room to examine him/her and determine is any changes need to be made. This is the time you want to make sure you are there for. If you are not, request to have them call your cell phone to provide you with an update. This is one of the best times to ask any questions you may have about your child’s progress and any medications they are on or may be on in the future. Write down what they say so you can look back on it later if you forget. It’s also nice for your partner and anyone else you would like to share it with if they are unable to be there.
I also recommend asking the nurses about what exactly each wire hooked up to your baby is for. It can look very intimidating to see your baby covered in medical equipment, but you will probably learn that most of the tools are only for monitoring and are not actually needed for survival. It was a big relief for me when I was told days later that the IV in my son’s arm was TPN (Total Parenteral Nutrition) consisting of proteins, fats, sugars, and carbs. Essentially a McDonald’s Big Mac. It was removed once he was able to get my breast milk through an NG tube, and we never saw an IV after that.

6) It’s okay to cry

Not one person in the entire NICU will judge you or look down on your for shedding some tears. Sometimes, it’s simply necessary in order to stay sane. There will be times when you feel like breaking down. For us, it was the day we were supposed to take him home. He failed his car seat test. It still brings an ache in my chest every time I think of that moment. Luckily, the nurses and doctors were incredibly understanding. They see it all the time! They care about your baby as well and want to see him do well, so they will have words of encouragement for you and will completely understand. Let go, Mom. Release those feelings, Dad. It’s your baby, after all!.

7) Sleep at home

After I was discharged from my postnatal recovery room, I panicked. Where would I go? I certainly wasn’t ready to leave my baby. We asked the nurses if we could sleep in the room overnight, and with a slight hint of hesitation, they taught us how to fold out the futon in the back of our son’s room. Great! I thought. Like the nurses probably suspected, I was up all night and did not actually get any sleep. I was right by his bedside any time so much of a peep came out of him. I was given a firm, but friendly lecture from one the nurses who told me to go home the next night and get a decent snooze. And not just one night, but every night. If you want to, go ahead and spend all day at the hospital. Just be sure to take some breaks to recharge your batteries.
There will come a day vey soon when your nights will be taken over every couple of hours by a screaming baby who needs food and a clean diaper. But that day has not come yet. Do yourself and everyone around you a favor and sleep, at home, in your own bed, and come back the next day with a smile on your face instead of bags under your eyes. At some point, I even started to enjoy “dressing up” for my baby as though seeing him was a special occasion. And it was – every day.

8) Keep a record of your journey

Take lots of pictures, but go beyond that. Write your feelings and thoughts down in a journal at least a few times a week. Write down your baby’s progress and achievements as they happen. As you will notice if you scroll down to the first posts in this blog, that’s exactly what we did. The benefits to doing it on a webpage is that you can share it with family and friends who no doubt want to know as much as they can about your baby’s progress as well! It can also be helpful to communicate things that you may not want to face to face, like if you are not okay with visitors. I had some issues with well-meaning family members who liked to talk about how “tiny” my baby was. Even though this was true, it still felt hurtful. You can use the blog to talk about those feelings so people know exactly how you are feeling without having to guess.

9) Don’t pay too much attention to the discharge date

Like I mentioned in step 6, there may be some major disappointments during your NICU stay. When my son started taking full feeds by mouth, we were told we would be able to go home as soon as he passes his discharge tests. Hearing? Pass. CCHD? Pass. Car Seat test? Not so much. Nothing is final until you’re strapping your baby into the car and driving away. Hope for the best,but be prepared for worst. The day will come, I promise!

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10) Breastfeed (if you can)

One of the toughest things about the NICU is feeling so incredibly helpless. It’s your baby and you should be the one calling the shots, right? But that will have to wait. The good news is that there is something you can do and it just happens to be the most important thing for your baby’s health. Breast milk. You (or your partner) can pour all your energies into providing the best nutrition possible. For us, this meant getting on a pumping schedule the day our son was born and making sure to stick to it. Keep a notebook that documents the date and time you pumped, how long you pumped for, and what your yield was. In the early days it’s fun to watch your supply double, then double again. If you’re having issues with your supply or pumping is painful, do not hesitate to contact a lactation consultant. That’s what they are there for after all!
Preemies are often not ready to try feeding at the breast until they are 34-35 weeks. Even then, they will probably have some issue either with a poor latch or not sucking strong enough (or at all). Try not to worry about that. They will when they are ready. And if you’d prefer to stick to pumping and bottle feeding when the time comes, then that is just fine too. The important part, if you are able to produce, is that your baby is getting YOUR milk. Congrats, Mama!

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