NICU Advice From a Mom of a Newborn With CF

Having a baby spend a long time in the NICU is difficult. Here are some things I learned about how to deal with it.

| 6 min read
Jenessa Kildew Headshot
Jenessa Kildew
Jenessa Kildew Holding Newborn

Forty-eight hours after my first child Riley's birth, I found myself descending from the front seat of an ambulance and then standing at the NICU front desk to check in for emergency bowel surgery, greeted by smiles, forms to sign that I didn't fully understand, and a welcome “goodie bag,” amidst the swirling chaos of the hospital wing. It felt as if they were trying to check me in to a resort, but I knew that this would not be a vacation. It felt like an out-of-body experience; I followed the nurses thoughtlessly and didn't know where my baby was.

My husband Kordan and I were completely naive to the fact that this hospital wing would become our home for the next 58 days and that we would be receiving a diagnosis of cystic fibrosis for our new beautiful baby girl days later.

As the never-ending days continued to pass, it felt as if we were being robbed of some of life's most special experiences -- bonding with our newborn, bottle or breastfeeding, middle-of-the-night snuggles, and ultimately, having a “typical” and “healthy” child.

We essentially lived in the NICU 12 hours per day, only going home to sleep. A small curtained area of a noisy room was not exactly the place I wanted to be recovering from birth and coping with emotional trauma. I needed constant reminders to take care of my physical well-being. Caring friends and family would say, “You should take a self-care day.” I never knew how to respond because nothing sounded appealing if it meant that I would be leaving my new baby alone in the hospital. I was already struggling enough to even feel like I was her mom. It felt difficult to bond with her being constantly anxious about tugging at the wires incorrectly and never truly feeling like we had any privacy amidst the shared room, visits from staff, and the noise. My heart sank each time I watched her root for milk and I wasn't allowed to feed her. It took a few weeks to become enamored as a new parent usually is because at times, it felt like she wasn't even mine.

Jenessa Kildew NICU

My husband and I spent a lot of time in the initial weeks spontaneously breaking down as we were grieving the CF diagnosis and stresses of NICU life. At times, I found myself behind a closed door in the breast pumping room letting out all of the tears I tried to hold back when we were in front of the nurses. I resented that our baby was spending more time with her dad since I was pumping every couple hours and it seemed as if they were forming a stronger bond. There were many days we felt very disconnected as a couple as we were each barely standing on our own two feet.

As strange as it may sound, some of the times we felt most connected as a couple were when we were both on the floor in tears grieving that our perfect baby girl was somehow now chronically ill. In the initial months after diagnosis, we recognized the pressing need to strengthen our relationship and truly work together. Cystic fibrosis was here to stay and our daughter needed us to be her foundation.

The most accurate description of the NICU is like being on a rollercoaster. There is constant waiting -- waiting for official diagnoses, labs, procedures, recovery, and doctors to call. With the best of teams, it can still be difficult to put all of your trust into their decisions. You worry not knowing who exactly is watching your baby all night. You feel pained walking out the NICU doors every night looking back knowing you're leaving your baby again to return to an empty crib at home. You wash your hands until they are cracked and bone dry. You have little privacy to let out your emotions -- there can be an extreme high one day and an extreme low the very next. And, there is so much unknown.

But, know this:

It's OK to ask people to come be with you.

It's also OK to ask to be alone.

It's OK to cry in front of others.

It's OK to take a break from the NICU.

It's OK to ask for help with meals, laundry, and other basic needs.

It's OK to tell it like it is -- no need to sugar coat.

It's OK to lay down boundaries in your work and family life of what you need during your grieving period.

It's OK to speak up to your teams and ask for what you think your baby needs. 

It's OK to grieve the loss of a “typical” birth experience and envy others who take their babies home right away.

It's OK (and wonderful!) to seek professional help to cope with the trauma.

And know that while this time feels like the darkest time of your life, that it does get better.

When we finally walked through the hospital doors together to take our daughter home, it felt completely surreal. We were given a new and unexpected path in life and we finally got to start on it. Even though we knew our challenges were not over, all we wanted in that moment was to see our daughter in our backseat and to wake up to her cries in the night in our own home -- to finally feel like she needed us.

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Topics
Parents & Guardians | Diagnosis
Jenessa Kildew Headshot

Jenessa is a mother to her daughter, Riley, who was born with cystic fibrosis. A former special education teacher and dyslexia therapist, Jenessa now stays at home, keeping up with her active toddler. Jenessa will begin participating in volunteer work with the Utah-Idaho Chapter and the Parent Advisory Council this year. Jenessa lives in northern Utah, with Riley, and her husband, Kordan. Follow her journey with Riley on Instagram.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.