It doesn’t end but it does get better

   An encouraging post from Preemie Parent Mentor, Amy A. 
 
   I’ll never forget the day we were discharged from the NICU with our son, Justin, who was born at 23 weeks gestation. I can still picture the walk through the hospital hallway with the nurse as we made our way down to where my husband was pulling up the car. She wheeled Justin’s crib as I walked along side. I felt like I was dreaming. After spending three and a half months in the NICU, we were finally getting to take our little boy home. We had his portable oxygen tank and apnea monitor and everything else we accumulated during our long stay. None of it mattered except for the long awaited precious little miracle baby inside that crib. Justin was our first child. 
     When we pulled up to our apartment building, my husband and I struggled opening up our new stroller to put the car seat on it. We finally gave up and my husband just carried the car seat as I walked alongside him with the oxygen tank and monitor up the elevator and into our home. It felt so surreal and not at all what I imagined taking my first baby home from the hospital would be like. 
     Once we got home, a new journey began. One without round the clock doctors, nurses, and respiratory therapists. Now it was up to us to take care of Justin. He still struggled even at home. His apnea monitor went off all the time and he would often choke during feedings and need to be stimulated to start breathing again. It was terrifying. Slowly, we adjusted to our new normal and Justin continued to grow and get better. We were thrilled to be out of the NICU and have our baby boy home safe and sound. 
     As time went on, we were slowly discharged from most of the specialists that we had to see: cardiologist, neurologist, GI, ophthalmologist. It took over a year but the appointments became less and less. We still see pulmonology. His lungs were one of his major issues and are still his weak point whenever he gets sick. We also had to have him followed developmentally through physical therapy, speech therapy, and occupational therapy. We’ve done all three at various times and continue today. 
     Justin is five years old today and he is a healthy, curious, sensitive, smart and adorable little man. He attends a regular day school and we are well aware every single day just how lucky we are. We held him back a year in nursery school when he was four years old which put him in the correct class according to his adjusted age. For Justin, that is what he needed and he is doing great. He is truly a miracle in so many ways. He still has some lingering issues as a result of being born a micro-preemie and he may always have them. When he was born, the doctors told us there were so many unknowns as far as his future was concerned and we have definitely come out on the positive side of all the worse case scenarios. 
     Nevertheless, the trauma of having a child born this early and the time we spent in the NICU and even once he came home is etched in our hearts forever. It often hits me at random times and memories and feelings come flooding back. I have learned to be gentle with myself and understand that it is okay. Justin’s birth has made our family stronger and more grateful for all that we have.
     I love offering support to other preemie parents and I love the idea of using our experiences, as hard as they were, to offer support and hope to other parents who have gone thru the same thing. Although the trauma of having a child born so early doesn’t really ever end, it sure does get better! The gratitude in our hearts for how blessed we are keeps us going each and every day – even during the hard times. There is so much light and hope after the NICU experience. 

Share This Post...

About The Author: Featured Parent

Featured Parent

We regularly ask special preemie parents to share their stories on our blog and are happy to consider publishing any mom or dad's story of premature birth and beyond in an upcoming post. To submit your story, email it along with photos to christa@grahamsfoundation.orgor laura@grahamsfoundation.org.