The thing about a NICU stay is that no matter the gestation of your babies or the struggles you all experience it is a journey that is entirely your own. Every procedure, every bradycardic event, every time you walk through the doors and leave your baby in the care of someone else can be so traumatic for new parents. I started sharing our journey and was amazed by the support and the women who reached out to thank me for being so raw and honest. Sharing these experiences isn’t to scare pregnant women but rather bring us all closer. Although our journeys are our own and completely unique, we walk side by side with many other families who are going through their journey as well. 

Our journey with the preterm birth/NICU began when I was 19 weeks pregnant, this is when they told me there would be a good chance my babies would not survive and if they did they would require a lengthy NICU stay. It was devastating news. I was alone in the hospital due to covid restrictions and I had five different doctors at different times throughout the night telling me I wasn’t going to make it to viability. Some even told me I should do nothing. That night, I decided to have a rescue cerclage placed. This gave us 10 more precious weeks and we welcomed the twins at 29 weeks gestation. 

The first few days seeing the girls in their isolettes was extremely difficult. I would burst into tears at the sight of their tiny bodies, their thin skin, watching them belly breathe and their tiny limbs covered in tubes and lines. The guilt I felt was overwhelming. I felt guilty every minute I was away from our 6 year old, I felt guilty for everything I did while I was pregnant wondering if I caused this, I felt guilty that I wasn’t able to be there without sobbing. We have very limited support where we are living so the best situation for us was to stay at home and drive to the NICU every morning after our oldest went to school and drive home to be there for pick up at the end of the day. Our drive to the NICU was one hour and thirty five minutes roughly each way so that only left us about four hours each day with our brand new babies.

Throughout our first few weeks I was so scared we would lose our babies. I know the survival rate of a 29 weeker is good but that doesn’t always ease your mind of the what ifs unfortunately. They were so small and fragile. They were working so hard. Every day seemed to be an uphill battle with every step forward we would take steps backward as well. It seemed like there were more bad days than good days with the common theme being “They just need more time”. It was tough to hear over and over again but we all persevered. Looking back now I wish I would have leaned in to our support people a little more and opened up about the struggles the twins faced. They fought so hard and because of the covid restrictions/NICU restrictions it was only Jonathan and I that saw that side of it.

The first few weeks the girls seemed to reject every intervention. Feeds were a no go, CPAP was hard on their bellies, their oxygen requirements kept creeping up higher and higher. Brielle was born with a hole in heart and a heart murmur while Briar seemed to need some extra support with her breathing. Almost every day Briar would have a bad brady during our visit. She would turn blue and go limp in my arms, often requiring stimulation of some sort to come out of it. We sat through the brain scans, PICC line insertions, IV insertion after IV insertion, ultrasounds among other things. 

Once we transferred hospitals we saw light at the end of the tunnel. We were finally able to dress our babies in their clothes, bring our own linens for their beds and we had a private room which we were so fortunate for. It was finally time for the girls to just grow and work on feeds. That definitely brought its own challenges as both twins were still experiencing serious bradycardic events during their feeds. Some days they just simply couldn’t tolerate a bottle feed. We would hear the same common theme once again “They just need more time”. At the time, I hated hearing that. 

Time was the one thing I wanted back. I wanted all those weeks with my babies. 

In retrospect, they did need time. It wasn’t about me, it was about them and they needed time.

There were several weeks that felt really good. The girls were working on feeds and weight gain but otherwise so healthy and we were talking about discharge plans. We brought towels from home, our own baby wash and gave the twins their first bath. We were checking off the boxes so we could get our girls home. After It was all complete we had a date that we were going to be bringing them home. I brought their going home outfits, bathed them, got them dressed and got my letter board ready for our discharge family photo. We sat in our room and waited for rounds. When the doctor finally arrived he looked at the chart and told us that one of the babies had a “brady” during the night shift and there was no way he could send them home. I was devastated. Further to this, it was clearly charted that the baby had spit up and recovered on her own so a number of staff advocated for us to go home anyways but the doctor stood his ground. At the time we were really bothered by this because in our minds, our babies were healthy. For those two and a half months we watched as babies came and left the NICU. It was hard not to be resentful and envious that they could take their babies home or sit peacefully breastfeeding their babes. Now a year later I understand that their journey was challenging in their own ways as well.

We required another seven days in the NICU to ensure they were stable enough to come home. I remember telling my husband that I had to sleep there until they were officially discharged, which I did. I slept in a chair by their beds and completed almost every feed and watched them. Until finally they were able to come home after two and half long months.

Our experience with the NICU was ultimately pretty good, the twins didn’t have any major complications from their prematurity which we are so grateful for. We had amazing staff that cared for our babies when we were unable to and I have found support from some amazing people in online communities. To have your babies so preterm and spend time in the NICU like that can be difficult and triggering. Please believe me when I say this, I am extremely grateful for those extra ten weeks. The fact that we were able to get even one dose of steroids in was amazing. My babies were very fortunate to not have any major complications, but that does not invalidate the struggles they endured and the journey we went through. No baby should have to fight that hard from the minute they enter this earth.

The thing about a NICU stay is that no matter the gestation of your babies or the struggles you all experience it is a journey that is entirely your own. This post depicts a little bit of our journey but certainly not all of it. I think in sharing these experiences we can help each other with the pain we are feeling. 

We are not alone.