NICU Truths and Lies

I’m ready (I think). My sons, Geno and Ronan, are now 2 and half years old.  In some ways it seems like forever ago, and in others, it all began yesterday.  For quite some time, the trauma of our NICU journey had left me speechless. But if my tiny mighty fighters could brave 65 days in the NICU, I can certainly find the courage to put some of that into words. So here it goes. These are the things I needed hear. Or things I heard, but didn’t believe. These are the truths and lies of NICU motherhood:

LIE. This is your fault.

Your baby’s premature arrival is not your fault. Let me say that again, this is NOT your fault. As a pediatric OT, I am well aware of pregnancy and birthing complications. As a medical professional, I understood the likelihood that our twins would enter the world far sooner than I’d like. During an early ultrasound the MFM (maternal fetal medicine specialist) recommended that we prepare ourselves for arrival any time after 28 weeks. That’s exactly what we got, 28 weeks and 5 days! Despite all that I know, I thought I failed. Our bodies don’t always work the way we’d like, but regardless of what we do or don’t do, some babies are ready to meet the world sooner than others. 

TRUTH. Your feelings about your baby’s NICU journey are valid. 

I’ll admit it, I envied mamas taking their babies home while mine were still in isolettes.  I shuttered at mothers in my support group who cried because their babies spent 5 days in the NICU. 65 days seemed like an eternity! I silently cursed mothers who weren’t pumping or breast feeding, and those who could eat dairy and soy because their babies’ guts could tolerate milk proteins that mine could not. But let me tell you this, I also know mamas who never brought their babies home.  I know mamas who gave birth to full term babies that didn’t cry and NICU teams rushed in unexpectedly to save the day. I’m not sure that knowing the NICU was in our future was a blessing since we could prepare, or a curse because we worried. I’m not sure if I’d prefer a short but terrifying NICU experience, or a long and slow progressing one. All I do know is that I am so very grateful for my children, and the people who saved them! I am beyond grateful for every memory we make.  I have forgiven all of those moms that I once judged, because the journey was hard for EVERYONE. It doesn’t matter how long or short. It doesn’t matter how many mountains and valleys in your child’s roller coaster. We are all in this together. 

TRUTH. “It takes a village.”

A village, an army, something bigger than us! The NICU is a unique place full of support resources: nurses, doctors, infant therapists, and social workers.  These people are some of God’s greatest followers, literally working miracles on the day to day. Unfortunately, these people do not come home with you. It may seem that no one outside the NICU world understands you, but there are many people who want to.  There are likely friends and family who want to help, so don’t hesitate to ask. If you want visitors, say so. If you don’t, that’s okay too. How often have your heard, “let me know if I can do anything”? If you are hearing that, respond with honesty. My mom made hot home cooked meals as often as possible, leaving leftovers in the fridge in the Family Room for us to eat when we were able. I had coworkers who dropped off Starbucks and weren’t disappointed if they couldn’t sneak a peek at the babies.  I had friends who sent books from Amazon. We expected nothing, but were overwhelmed by the generosity we received from others. We also know that allowing people to help made our lives easier and allowed others to feel supportive and involved. 

TRUTH. The NICU journey may challenge your marriage. 

The NICU roller coaster is full of ups and downs for babies, moms, and dads too.  There are sleepless nights, long days, scary moments. There may be days that you and your significant other do not see eye to eye. There may be days that you are mad at the world and take it out on each other. Take a deep breath! Remember that we are all full of emotions and some of us handle those emotions differently. Sometimes you will fall apart at different times and sometimes at the same time.  I can tell you that although we felt weak in many moments, after having lived the NICU we have never been stronger in our relationship or as parents! 

LIE. NICU graduation is the end of your journey. 

It’s true that graduating from the NICU is a huge milestone for your baby and your family. Congratulations! Now, brace yourself for more of the unknown.  Just as each of us has a different NICU story, we all have different experiences upon our returns to home. Some babies will come home with equipment while others will not. We were among the ones without home-going monitors, and I was terrified to leave this security blanket behind.  There will be follow ups with pediatricians, neonatologists, and the therapy team. You’ll likely be counting ounces for months to come, and adjusting age to calculate developmental milestones for up to 2 years.  

During this time, remember to take care of yourself.  You are your baby’s best advocate and can only be that if you are treating yourself well.  Post-partum depression and post-traumatic stress disorder (PTSD) are very real. This is a subject that needs much more attention. If you are feeling depressed or anxious seek assistance.  There may be psychologists in your area that specialize in these conditions. There may also be support groups where you can find security in other NICU moms. I failed to get myself help initially because I just didn’t feel I had the time. Admittedly, I also felt I was above it.  I wasn’t officially diagnosed with PTSD until my boys were almost 2. I completed an intensive program, Eye Movement Desensitization and Reprocessing (EMDR), which has enabled me to reflect on specific NICU events and change my feelings about them. My only regret now is that I hadn’t gotten help sooner. 

The hardest thing for most families returning to home is expecting family and friends to adhere to your newly acquired germaphobia. Seriously, do not feel guilty.  We turned away visitors not only if they themselves were feeling a little sick, but if anyone in their household had been under the weather. Most NICUs provide resources that you can share with your family and friends to help them understand the fragility of a preterm infant. 

Most importantly, don’t forget to enjoy your baby!  You will sometimes be so caught up in appointments and your own fatigue that you forget these moments are sacred, and time moves fast.  Our tiny babies quickly become toddlers and then are off to school! 

TRUTH. You are exactly the mom your baby needs you to be. 

Your baby knows and loves your voice, read and sing. Your baby loves your smell, make time to kangaroo. Whether you have moved your own bags and bed into the NICU or retreat to you own home to sleep at night, you are enough!  Whether you are breastfeeding, pumping, or using formula, you are enough! This may not be the journey you envisioned, but for sure, if you’re reading this, you are rocking motherhood!

-Project Preemie Contributor Danielle

-photo credit brianne b beyer photography