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Remember, Mom's a NICU Nurse

By Jennifer Thomas, RNC-NIC

NANN Footprints: Stories from the NICU February 2019 

FootprintsI loved the NICU from the moment I set foot in the doors on my first share night, it pulled me in the way no unit during nursing school had. I knew it was where I was meant to be. I loved my job, every bad day, helping parents as they said good bye was made better by the more common good days as I walked a new family out the door to discharge or I helped a new mom breastfeed for the first time. After 7 years, I felt like I belonged, I felt like I made a difference and I felt like I could empathize with the families. Now pregnant with my first baby, I felt like I too was in the mom club. I was young, I was healthy, and like most every mom who has a NICU baby, I can tell you, the NICU was not part of my plan.

My husband and I sat anxiously at my 20 week ultrasound. Was it a boy? Was it a girl? Was she growing and healthy? “It’s a girl, I’ll be right back,” the tech says and quickly exits the room. This is the moment in time that I can tell you that I knew. I knew that something was wrong, and I knew I’d see that NICU. When the tech returns, I’m told to come back tomorrow to another center for a 3D scan. When I ask why, she can’t say, when I beg, she says, “I can’t see the baby’s diaphragm.” And now I know I’m the mom of a diaphragmatic hernia baby. The following day, a 3D scan and specialist confirm the left diaphragmatic hernia. I’m told it’s moderate to severe and we are offered termination.

Words like, “suffer at birth”, “unable to breathe on her own”, and “developmental delays” are used. I’m in shock, but my nurse brain needs science and research. I find a hospital out of state doing cutting edge work and I get a second opinion. If I move there, they think they can save my baby. I go back and forth for care, and then move there at 36 weeks. She’s born by C-section for fetal distress at 39 weeks. Being on the other side is painful; at times I’m helpless and other times I know too much. Even when my nurse brain tells me it was purely a genetic fluke, my heart feels like I did something wrong. I try to turn off my nurse brain and be a mom, but when an alarm sounds it’s hard to not intervene. Watching everyone else care for your baby is tough. In bedside report, the nurses jokingly say, “Oh and don’t forget mom’s a NICU nurse.”

Our family rallies around us, food is sent, our dog is cared for, bills are paid, gifts are sent, and yet I feel isolated and depressed. I feel the loss of newborn cuddles, the loss of newborn photo shoots, and of missing many first moments in those first 2 months of her life. It was pure survival— cares, pump, eat, cares, pump, eat. I just wanted to survive the day with no bad news, no new hurdles, no back steps on vent settings, no new fevers—just survive.

As time goes on, the staff allow me to do more and more and I feel like I have a purpose again. At 55 days we are allowed to take her home with a feeding tube and a pharmacy of medications. I can’t even put into words the joy and fear that is felt when you finally get to leave the NICU. We settled into our new normal at home and eventually I went back to work. But now I’m not just a NICU nurse, I’m a NICU mom, too.

I encourage moms to talk and tell me about their journey, I encourage them to participate in care even when they think they can’t, and I support them through their darkest days. I share my story and my daughter’s picture often with families to show them that there is another world beyond the walls of the NICU, one that includes cuddles and photo shoots and milestones, and one that includes hopes and dreams and a future. I wrote the following poem for my daughter. A poem that someday I will give her along with the journal that I kept in the NICU.

They Told Me

At my 20 week ultrasound they told me “we’ll be right back” and I knew in my heart something was terribly wrong.

They told me to consider termination but I knew I had to put my trust in God and give you a chance.

They told me you might not survive the pregnancy but you kicked like crazy every day.

They told me it was not safe to deliver near our home. So, at 36 weeks we moved 2 hours away to Philadelphia.

They told me you might not make it to full term, but thanks to bed rest and lots of TLC from our family and friends; we made it to 39 weeks.

They told me you’d be too weak at delivery to cry but you let out the most beautiful cry as they whisked you away to be intubated.

They told me you might need ECMO but you liked the oscillator better and didn’t need ECMO.

They told me you might not survive the repair surgery, we called in a priest and our family surrounded you as you were baptized. The surgeon told us your surgery was “boring” and that you had done well.

There were several nights that they told us you were touch and go and we stayed at your bedside praying for a miracle. You held on through each bump in the road, each infection, each new tube, each new procedure and each set back and grew stronger each day.

They told me that you might need a trach or oxygen at home but on day 40 we took the oxygen off and never looked back.

They told me you might not ever breastfeed, but we breastfed until you were 15 months old and donated an extra 500 ounces of milk to other sick babies across the world through the Mother’s Milk Bank.

They told me you might get sick and be re-hospitalized that first winter home, but our good handwashing and strict visitation policy paid off and you were never re-admitted.

They told me you might have cerebral palsy or a brain injury but you were a happy, smiling baby who loved to be held and carried around.

They told me you might not walk or meet your milestones, but at 13-months-old you walked across the kitchen floor at my parents’ house and never stopped.

They told me you might not talk but you are articulate and chatty and love public speaking.

They told me you might have behavior and learning problems but you excel in school and have an amazing personality that lights up a room.

They told me you might not be able to run and keep up with other kids but so far gymnastics, soccer, softball, lacrosse, and swimming haven’t slowed you down!

They told me they don’t know what your future holds, but I do. Your future holds amazing things and you are bound for greatness. You have proved them wrong each step of the way and no one will ever get in your way!