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Parent Advocacy & Feeding Challenges

Meet Shahla, Preemie Parent Mentor

My preemie(s) was born at: 33 weeks
Days spent in the NICU: 17
Current age of preemie(s): 1
Parent of Multiples: No
Our NICU Journey included: NICU readmission, feeding issues, breastfeeding challenges, tongue tie, oral aversion, failure to thrive, exclusive pumping, reflux, gross motor delays, occupational therapy, physical therapy, and navigating the healthcare system.

My son was in the NICU for 17 days but was readmitted only two days after coming home because he was unable to maintain his body temperature. He did great in the NICU, but we had many challenges after going home. Our breastfeeding challenges not only included failure to thrive but also oral aversion – it got to the point that he would kick, scream, and claw at me if I tried to bring him to the breast. Eventually he refused the bottle as well. It was very emotional and stressful, but eventually I realized that I had to make the obvious choice and feed him however he was best able to get the nutrition he needed.

At nine months he was admitted to the hospital because he was not on the growth curve at all and was showing some signs of delays. We did batteries of tests, and everything was essentially anatomically normal. He had reflux, which may have been the underlying cause of his oral aversion, but we will never know for certain. We came home with an NG tube and ultimately did many months of occupational therapy and then physical therapy. It felt like it took over much of my life, being his home health nurse, care coordinator, advocate, and all the while trying to just love and enjoy him and be his mama.

If my experience lets me support or help other families, I feel privileged to do so. As a Graham’s Foundation preemie parent mentor, I want to help other families with preemies understand the importance of caring for yourself and letting people know what you need. More importantly, I hope I can help other families understand that they are parents! Even though I knew in my mind that I was my child’s mother, my heart felt so lost and confused. What I would tell other NICU mothers, especially first time mothers, is that what makes you a mother is not being the one to be there each minute of the day, or even to feed and bathe your child. You are your preemie's mother, and even if the world doesn’t always see that, your journey as a mother has begun.

My experience was traumatic and challenging. As I have processed my experience, I strongly feel the urge to give meaning and purpose to the struggles that I had. I am eager to channel the lessons that I have learned and the strength and resiliency that I have found over time, to make a change. Providing support to other families going through a similar journey feels like the most meaningful way to honor my own journey and turn something challenging into something positive!

Feeding Issues in Preemies

Premature infants and children are more likely to encounter difficulties with feeding and growing than those born at term. From a diagnosis of failure to thrive to suck-swallow-breath coordination to coaxing an unwilling toddler to embrace solids, prematurity makes what should be simple-eating-into a challenge. Parents of preemies may have to navigate a confusing world of feeding tubes, specialty equipment, and therapies just to help their children.