Now you have a baby that was born too soon. No one can understand what you are going through other than other NICU parents. This is not for the weak. You become more medically versed than you ever expected in your life and you literally watch the tiniest human you have ever seen fight for their life. You assume your family and friends will understand what you are going through automatically and that they will know the type of support that you need, but that really is not the case. Instead things can be said or done that hurt you because they do not realize what things you might be sensitive to now that you are a NICU mommy or daddy. I call this the NICU Insensitivity.
122 days later we walked out of the NICU doors for the last time—this time with our precious miracle in our arms. It was a hard fought battle, won. There were plenty of emotional scars, and some physical. But, we were so full of gratitude and so grateful for each and every one of them—each a step in helping our 26w4d premature little boy get better, get stronger, and make strides towards that coveted place—HOME. One scar in particular, the “Big Kahuna”, was the result of the amazing medical team literally saving his life after he developed NEC. (Necrotizing Enterocolitis—a complication where a portion of the bowel dies and can perforate, resulting in the body becoming septic.) We were there long enough to know and to see first hand that a lot of others are not so lucky when it comes to NEC, so we’d take this scar ten times over. With a little luck and a lot of medical miracles along the way, we came out on top.
Fast forward three years, Henry is happy, healthy and rocking pre-school. One day, his teacher told me about a small part of his day at pick up. She told me that they were reading Madeline, and got to the part where Madeline shows the scar on her tummy to her friends. She said Henry stood up on his chair and pulled his shirt over his head, and very proudly showed his scar to his own friends. They all came up and were touching it, in awe.
We want Henry to be proud of his scar, and to know he earned it by being brave and strong, and have often thought about how to explain it to him in a cool way that will help him embrace it whenever he might ask about it. It had never come up, so I didn’t even know he’d noticed it or knew what it was—or that it was different. I had plans of telling him he’s a brave knight that won a battle with a fiery dragon, or some other grandiose explanation to help him stand a little taller should anyone notice it or ask him about it.
I guess he didn’t need us to be the ones to tell him it is something to be proud of for a battle fought and won...he somehow already knew. No grand fabrications needed.
Memories of our journey will fade and soften as time passes, and so will his scar. But it will always be there, and will always be a part of him. We certainly don’t view his scar as a blemish, or of something broken or once broken—and I already know he doesn’t, either.
Scars tell a tale, a story...often of brave heroes. Henry is our hero, and he has quite a story to tell.
Always rock your scar and stand tall and proud, little one!
- Preemie Mama Elizabeth
Guest Post by Ali Dunn
"Even though my identical twins were born 12 weeks early, I was waiting for them. I had been waiting for them for years.
After years of unexplained infertility, countless interventions, and a failed round of IVF, I was pregnant. Not only was I expecting one baby, but it was twins. I was overjoyed and terrified. A twin pregnancy is high risk, so in addition to a regular obstetrician, I also was under the care of a Perinatologist. At a routine appointment, signs of preterm labor were noticed. Confident that the root of my contractions was dehydration, I was sent across the street to the hospital for an IV and monitoring. Several hours later, I settled into my hospital room for indefinite bed rest. I was woefully unprepared, with neither a magazine to read or even a pair of socks. Over the next seven days of hospital bed rest, we did everything possible to stop the babies from coming, while also preparing for the very real possibility that it might not work. On the eighth day, I had finally convinced the doctors that I would continue strict bed rest for the remainder of my pregnancy, at home. One final fetal monitoring stood between me and my own bed. And then, one twin’s heart rate dropped. It continued to do so over the next six hours. I wasn’t going home, and in fact, an emergency c-section was necessary. Several doctors crowded into my hospital room and tried to explain the risks and potential outcomes of delivering at 28 weeks.
Our next stop was the NICU. Our passage through the NICU was not without moments of bliss and despair. I developed an all day, everyday NICU routine that would become my normal. Pump, rush to hospital, wash hands, kangaroo, pump, check temperatures, stare at monitors, read, ask questions, pump, worry, ask more questions, try not to Google 28 week old preemie, worry, pump, change diapers, call friends and tell them I was pregnant with twins that were already born 12 weeks early, pump. We dealt with many of the common health problems associated with prematurity; jaundice, apnea, PDA, and infections. But after about 2 months, both babies were finally ready to come home.
As my twins grew, they would look at pictures from the NICU and ask questions. I explained what a NICU was and why they were there. I wanted a developmentally appropriate book to supplement our conversations. I couldn’t find a book about preemies that I loved, so I decided to write I Was a Preemie Just Like You. It is a children’s book that celebrates what preemies went through and reminds them that they are not alone.
Several years have passed since my walk as a preemie parent began. It has been a road paved with disappointment, fear, adversity, and complete joy. Having preemie twins changed me forever, and for the better."
Starting a family. Pregnancy loss. Infertility. These are journeys that no one can prepare you for. Journeys that until you’ve lived them, you will never truly understand. Journeys that will give you your highest highs and your lowest lows. Journeys that most people travel alone. We did. But the more we reflect on that journey, we have come to realize that it needs to be shared because you see, it was the greatest journey of our lives. If our story can help just one person find hope, or a shoulder to lean on, or just someone to relate to, then it’s worth sharing.
I remember sitting in the chair enjoying kangaroo time with my daughter when rounds happened. They asked me “how does Monday sound?” and I naturally responded, “for what?” Poppy still had a feeding tube in at that point so I thought their response would be for that to be removed since everything seemed to happen in steps while we were in the NICU.
And yet, the world kept going. Outside, the weather turned to summer, then to fall. In the time she was in the hospital, it snowed, rained, was in the high 90ºs, and the leaves began to turn. The Cavs won the Championship, almost an entire baseball season passed, and football season had started. Holidays- Cinco de Mayo, Mother’s Day, Memorial Day, Father’s Day, Independence Day, my birthday, Labor Day, our anniversary, all kept happening.
Few have had their relationships tested like those who are parents to a child in the NICU. Even the strongest, most resilient marriage can be pushed to the breaking point when your child is fighting for their life. As a mother, you’re going through the hardest thing you’ve ever been through, you’re being tested to your limits every day- and your rock, your confident, the person you GO TO when you need to be supported is going through the same damn thing.
That thought haunts me a little bit to this day. If I had waited for a response from a forum, it would have been too late. If I said wait until the morning, it would have been too late. I am so happy I listened to my body and that I trusted myself. Trusting yourself carries you through your time in the NICU. Your baby sees several doctors, nurses, NPs, and therapists.