10 things you need when you have a preemie in the NICU
Your baby came early. Now your precious bundle will be in the Neonatal Intensive Care Unit (NICU) for weeks or months, and you’ll be trying to spend time there, pump breast milk to feed the baby and keep your supply up, and do everything else you need to do in your life such as work and take care of other kids.
Nothing can take away the pain and uncertainty of having a baby in the NICU, but here are a few things that might help make this juggling act easier.
1. Assertiveness
Most of the things on this list are things which are easy enough to acquire. This one is an attitude. If you, like me and many women, fall more on the “agreeable” or “accommodating” side of the agreeable ← → assertive spectrum, you’ll want to step up your game while your baby is in the NICU. You will likely tell yourself, as I did, that the nurses and doctors are the experts and you don’t know the medical details of NICU care. That’s true.
But it is also true that no one cares about your baby as much as you do.
So be assertive in informing yourself about the options, developing an informed view about what is best for your baby and pushing for it.
We had a new nurse every two days and a new doctor every four, and everyone had a slightly different opinion about things for our baby. This was confusing, but it also let me know there’s not one best way. Within some acceptable range, a lot of decisions are judgement calls. So ask everyone you can about every decision that is being made — ask the doctor, and the nurse, and the respiratory therapist and the next day’s doctor and nurse. This will give you a better sense of the full range of perspectives. It might also just help you process what’s going on because, let’s face it, you probably aren’t operating at full capacity and there’s a lot of information and some doctors/nurses are better at explaining things than others. Hearing it multiple times in different ways can just help it sink in. So ask all your questions, again and again.
And if you have an opinion about which way something should go, push for it.
For example, here’s something that happened in the first days of baby’s NICU stay. I had not yet developed my assertiveness and I wish I had because I might have done it differently. Baby had an IV line in his umbilical cord, and they warned that it would eventually fail and they wanted to insert a “main line” or “PIC line” that would start at one of his limbs and thread through his veins all the way to his heart. It is more stable than an IV line, but also harder to put in and comes with a risk of infection.
The doctor thought it best, so we said yes. I wish I had asked more questions. It ended up they threaded a line through his body four times, but they never ended up in the right place and they had to take them out. In the end, they gave up and just put in a regular IV line which was able to come out within a week because he did well at digesting the breast milk I was pumping for him. If I had been more assertive, I might have been able to suss out this option and skip the whole threading tubes through my two-pound baby’s body thing.
2. Flexibility and Communication
I was trying to work as much as possible during the NICU stay so I could maximize my saved sick days for when baby came home. My husband and I were constantly trying to map out a schedule that would give give both of us some time at the NICU, time to work, and time with our older child. We wanted to be at the NICU during doctors’ rounds so we could hear about any medical decisions being made for our baby, and during “care” times (when they change the diaper and CPAP mask) to minimize disturbances when we did skin-to-skin time. Just when we thought we had it figured out, I’d show up at the usual time for doctors’ rounds and they’d already be done because they moved them up an hour, or I’d need to wait an hour to do skin time because they’d changed the care times.
I started asking every time I left if there would be any schedule changes the next day, and that helped give me some notice. But also, things just changed a lot. For example, we pent hours trying to figure out a particular feature of baby’s incubator and just when we figured it out they changed him to a different one. Get used to not being able to get used to anything.
3. All the things for exclusive pumping
4. Robe
Once you’re allowed to hold your baby skin to skin (also called Kangaroo Care), you’re going to need a robe. Put the robe on and keep it open at the front as you pick up your baby and put them on your bare chest. Sure beats being naked in the NICU. It also helps keep you warm as you’re sitting there, maybe for hours, with your baby in your arms. Before I got the robe, I had to ask nurses to please drape baby blankets over my shoulders each time I did skin time. Another bonus, you don’t have to worry about your bare back touching the NICU chair.
5. Hand mirror
You finally get to hold your tiny bundle, but now you can’t see their face! They sit upright on your chest during Kangaroo Care, so it takes some contortions to see their tiny face. Keep a little hand mirror nearby so that you can gaze at them.
6. Good pillow and chair set up
It’s a bit awkward holding a baby perfectly upright for an hour or two at a time. Your arms get tired. Or they go to sleep from resting your elbow on the hard chair. A kind nurse finally showed me how to use three pillows to get comfortable — stuff a pillow upright between you and the armrest on each side of your chair and rest your elbow there instead of on the armrests, or fold the pillow over the armrests. Put the third pillow on your lap so that you can briefly let go of the baby’s feet and rest them on the pillow. The lap pillow also makes a convenient surface for your accoutrements such as your hand mirror and phone.
7. Tiny soft blanket
Ok, this is not strictly necessary, but I loved it. I got this tiny super soft blanket on Etsy. It was just the perfect size to cover baby when he was 3–6 pounds. There are of course plenty of little baby blankets at the NICU to cover him, but I felt good having this soft one across his back. And my husband liked it because he always got too hot holding the baby, and this was just enough to cover baby without covering husband.
8. Heart beat noise machine
A study indicated that pumping the sound of mom’s heartbeat and voice into the incubator can help preemie babies develop their auditory cortex. I found this white noise machine that plays a heartbeat and I placed it in the incubator. It had pretty good battery life — it could play continuously for more than a week before I had to replace them. Some of the NICU nurses apparently like the lullaby setting better, because some mornings I would come in and it would be playing music. I’d switch it back to heartbeat. I actually found the heartbeat sound very calming myself as I sat there holding baby during Kangaroo Care.
9. Over-the-head Bluetooth headset
Sometimes it’s nice to sit there holding your baby doing nothing else. Very meditative. But sometimes you get a little bored. I loved having my Bluetooth headset so that I could listen to audio books or podcasts while I snuggled. At first I tried using my wired headset, but baby already has so many tangled cords coming off him I couldn’t handle one more. A bluetooth headset fixed the cord problem. I’d put it on before picking baby up, then set my phone on top of my lap pillow so I could reach down and start my audio book.
10. Preemies, Second Edition
This book will answer all your questions, and tell you true stories of NICU survivors.
Two more things you might want:
1. Octopus
There is a whole thing on the internet about these crocheted octopuses for NICU babies. A bunch of the news stories reference a “study” that showed these help preemie babies develop. However, I searched and searched and never found a study (in the sense of a control group and an experimental group and measured results). I think a hospital just tried giving octopuses to preemies and news outlets picked it up as a feel-good story and called the hospital’s experiment a “study” to add gravitas.
I got one anyway. My baby never showed much interest in grabbing it — he much preferred to pull out his feeding tube and grab onto the straps of his CPAP mask. But maybe yours will love the octopus!
10. Voice recorder with playback
The study referenced above played both a heartbeat and a recording of mom’s voice. So I got a mini recorder and recorded myself, my husband, and our older child reading stories to baby. I put the recorder in the incubator to play our voices for him. However, the recorder made crackling noises at the beginning and end of each recording, so I worried it might be more annoying than helpful. Also, the battery ran out really fast. So I ended up taking it out. But you might figure out how to make it work better.
Best of luck with your NICU journey!
