Prematurity Awareness Day: Tips on how to survive your baby's stay in the NICU

Prematurity Awareness Day: Tips on how to survive your baby's stay in the NICU

Nov 17 , 2021


Team Lilu

No one plans on having a preemie. And yet, it happens to about 1 out of 10 babies born each year. According to The March of Dimes, premature birth is the leading cause of infant mortality in the US. Those who survive often struggle with long term health problems.

My now rambunctious little girl was a late-term preemie, born at 34 weeks gestation. Though tall for her gestational age, she weighed just over 3 lbs. She was too small to breathe, regulate her body temperature or nurse effectively on her own. 

I don't know that I can effectively explain what it’s like to have a preemie. Perhaps I have forgotten all that I felt, but it still makes me anxious to think about it. 

Having a child, especially a newborn, in the NICU is something I would not wish upon any parent ever. It is a roller coaster of emotions, where things can take a turn for the better or worse very quickly without a clear explanation. It’s mind boggling, scary, frustrating and humbling. 

So today, being World Prematurity Awareness Day and because November is Prematurity Awareness Month, we've put together a list of things that can help you get through your baby's, and your, stay at the NICU. 

World Prematurity Awareness Day November 17th Lilu

Advocate for yourself and your baby

One of the hardest things of having a baby, one that you so eagerly anticipated and loved, being away from you and kept in a perfectly pristine and sterile environment, is feeling that they are being robbed of the love that you, and only you, can give them. 

Even if you’re separated from your baby, you are indeed the parent and you are more in tune with their needs than anyone else could ever be. Don’t let anyone tell you otherwise. So advocate for what you think can make you or your baby feel more connected and at ease. 

Depending on each NICU’s policies, ask what is possible. The hospital where my daughter was born didn't allow me to bring anything into the NICU, but they did allow me (if I insisted) to take pictures of my baby, only if I didn’t touch her after touching my phone and left right away. Those pictures became a life line and connected me to her during the long nights of pumping that lay ahead without her. There’s no harm in asking for things you think may help you or your baby cope with the stress of the NICU a little better. 

Likewise, ask what procedures will be done to your baby and why, ask if you can be there, ask to be a part of your baby’s day to day activities. They may agree to some, let you watch over others and to some they’ll say no. But you’ll never know if you don’t ask, so ask.

You can also take advantage of the NICU’s staff’s knowledge and expertise and learn tips and tricks on how to handle such small babies once home.  

The important thing is that you never stop feeling like a parent no matter how powerless you might feel. 

Preemie baby in incubator at the NICU prematuritu awareness day November

Embrace your feelings and ride them out

Even though you know that your child is well taken care of and safe inside the NICU, and that there are machines that will inform the staff of anything that is happening to your baby, the NICU can make even the strongest and most confident people feel truly and deeply powerless.

This is because all you can actually do is be there and wait. You cannot eat or breathe for your baby and the monitors will constantly remind you of their heart rate, oxygen levels, temperature and so much more information that just points to all that can go wrong. It gets overwhelming and stirs all sorts of feelings inside you, especially powerlessness.

Don’t try to suppress those feelings. Feel them, acknowledge them, ride them out. You may need to cry or you might even need to skip a day with your baby just to regroup and be able to be your best self the next day.

Preemie baby prematurity awareness day and month November Lilu Moms

Portray strength

Not all days at the NICU will be good days. One evening you’ll leave feeling like your child is so much stronger today than they were yesterday, and you’ll arrive tomorrow to find a new set of cables and/or tubes poking out of them- it can feel like a blow to your stomach that will knock the air right out of you. 

On those days, find something that you know will make you feel better- call a sympathetic friend, grab a cup of coffee nearby, take a walk around the block, go home and take a shower, take a yoga class- whatever it may be, and come back your best self and portray strength to your baby. 

Be the strength that they need to be strong. Be calm even if you feel like jello inside. Breathe deeper so that they can mimic that rhythm. Be their strength and trust your baby.

Preemie awareness day Lilu Moms

Trust your baby

This one is a hard one, because as parents we think we need to do all that we can for our children. But in the NICU, you can’t actually do anything. Once you’ve accepted your own powerlessness, you begin to accept that you have to trust your baby (and that includes respecting their journey as their own, and not comparing them to other babies in the NICU).

You have to trust them and let them gain their strength, however slowly. You have to trust that all the medical procedures and cables and tubes are helping them reach their milestones, and let them reach their milestones. It’s a process that cannot be hurried. 

Be your best, strong, calm and collected self, so that you can hold space for your baby and give them the space to reach the milestones that’ll eventually enable you both to go home together. They want to be with you, just as much as you want to be with them. 

Trust that and show up everyday believing that they can. 

Preemie baby prematurity awareness day november lilu moms

Know what milestones they need to reach and work towards that

A turning point for me, during my daughter’s NICU stay, was when after asking 10,000 times what milestones my daughter needed to reach to be released, the head pediatrician finally told me and I was able to outline a plan to help her reach those milestones. 

Each hospital’s policies are different, but generally, they follow the same principles:

  • Babies need to reach a minimum weight and have gained weight steadily for a given number of days
  • Babies have to be able to eat a minimum amount of milk (according to their age) on their own consistently for a minimum number of days
  • Their blood oxygen saturation levels have to consistently remain above a given threshold for a minimum number of days, especially while eating
  • They have to consistently produce wet and poopy diapers

In my daughter’s case, she needed to reach all of them in tandem, in order to be released. 

Knowing this, my baby’s quirks, and my own need to outline a plan and gain a sense of control, I realized that in order to take her home ASAP, I needed to change my original exclusive breastfeeding plan.  

To make eating and gaining weight easy for her, and have everything else follow, I decided to stick to a strict exclusive breast pumping schedule. It helped me establish my milk supply, without my baby, and maintain it, without the need for formula, which I felt kept upsetting her (we would later discover she had a milk protein intolerance). 

I found a sense of control in my breast pumping routine. As well as a myriad of products that made my life easier, including flanges that fit correctly, a pump that was as good as the hospital one, and the Lilu Massaging Bra

Suction alone was not enough for me to be able to empty my breasts completely or feel comfortable in between pumping sessions. After a couple bouts of clogged ducts, I intuitively realized I had to massage my breasts to empty them more fully, but with 6-8 pumping sessions in 24 hours, it became impossible to do consistently. 

Even when my lactation consultant insisted that I continue to try to breastfeed directly, I knew that with my baby (and her nipple preference) it wouldn’t be possible. The Lilu Bra made the process of providing milk for my daughter infinitely easier and it was incredibly relaxing (which is also necessary to produce enough milk). 

Exclusive pumping and the right tools saved my mental sanity and made me feel like I was doing all I could for my daughter, even when there wasn’t much I could do. 

She finally left the NICU, a little before her original due date, after meeting all her milestones. She remained tiny, and below average size until she was around 2 years old. She still struggles with Sensory Processing Disorder (which is common in NICU babies). 

In retrospect, the NICU taught us both a lot about each other and the resilience we must have as both children and parents. It especially taught me that I may be her mother, but I have to trust her to do things on her own and be her guide and provider, rather than an active participant. I will be forever grateful to God and the Universe for my beautiful girl, tiny but mighty in every way. 

NICU grad prematurity awareness day

Lilu is a Women’s Health company building tech-enabled devices to empower new moms. Our first product, the Lilu Massage Bra, mimics compression massage, so you can empty your breasts fully to establish, increase and maintain your milk supply. Pump up to 50% more milk each session, all while going hands-free.
Lilu Massage Bra with flanges

Lilu Massage Bra

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