It has been about 20 months since my daughter Gabriella entered the world at 26 weeks and 4 days. Something about the term “Micro Preemie” always bothered my mother but that is what she was, a micro preemie. Another mother in the NICU would refer to her micro preemie as a super preemie and something about that stuck with me so that is what I call her now. I was on hospital bed rest beginning at 24 weeks and had spoken to a neonatologist about statistics and what to expect. My goal was to make it to 28 weeks as survival rates increase dramatically at that point in pregnancy. The first lesson I can remember learning from Gabriella was to forget about MY goals.
At 20 months, Gabriella is thriving. With that said, she has been hospitalized 5 times since the NICU for a variety of issues and has a mild case of Cerebral Palsy. We have a physical therapist, a neurologist, a pulmonologist, a pediatrician, a teacher to work with her communication and will soon be starting her with a speech pathologist. It has not been easy but I have learned more from this tiny human in 20 months than many learn in a lifetime. If my experience can help anyone than I want to share it so here are my lessons learned from being the mother of a “Super Preemie”.
My goals and my expectations won’t make her develop faster and that is okay. I spent months consumed by the fact that she was not walking yet and now she is! I know that one day she will say “mama” even if it hurts that she can’t now. She is developing at her own pace and its frustrating and scary. My older daughter was born full term and met all of her milestones on time and it is very difficult not to compare but being consumed by the fear of not meeting milestones was making me miss out on all of the amazing progress she has made. All babies develop differently, early or not.
Grief is normal, if you have had a super preemie and you haven’t experienced some form of grief than I would seek help. I didn’t get to take pregnancy pictures or even hold my baby after she was born. 20 months later it still makes me sad to go on social media and see what I missed out on but life gave me a Super Preemie instead. I don’t know anybody whose life plan consisted of meeting their intubated 1 pound 13 ounce baby from a distance, hours after waking up from an emergency c-section so sometimes I still need to cry it out. I have an amazing team of mental health professionals that I work with to deal with PTSD and anxiety. There is no shame in needing help.
One of the most common feelings that have come up with other mothers are about what could we have done differently. It wasn’t my fault. I had no control over my incompetent cervix or placenta abruption. As a mother you always want to do whatever you can to help your child avoid pain or discomfort. In this case there was nothing I could do and she went through hell. To have a full term healthy baby is a miracle in itself and sometimes life hands you a different kind of miracle.
Gabriella isn’t the only miracle in this story. The strength that my husband and I found within ourselves is a miracle. I don’t believe that NICU parents give themselves enough credit. Gabriella was never alone in her fight to survive. We were always fighting alongside her. Even when we couldn’t be at the hospital we were fighting and though we are no longer fighting for survival the same way we are still fighting. I am strong, I am brave and I can handle anything that life hands me and that is a miracle.
Lastly, we were extremely lucky that I was able to give birth at a hospital 15 minutes away from home with a level 3 NICU. We had friends who brought us dinner and grandparents who were able to help us with our older daughter. Not everyone has this kind of support and I am eternally grateful to everyone who has helped us and who continue to help us now.
Thank you for sharing Gabriella's story with us. I hope that she continues to thrive. Keep us posted.
Everything about this post is so very relevant to everyone dealing with prematurity. I don't think nearly enough attention is paid to the very real trauma that mothers experience when they go through this. We expect our children to be amazing and wonderful. We build up everything around the first moment we meet them, and then when something like this happens, we are robbed of that moment. Thank you so much for sharing this story with everyone.
Love and Hugs
Thank you for sharing your family story with us. I'm so happy you're working with a great team to work through your PTSD and anxiety. It's so important to have a strong support system by your side. We're here for you also!
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