The NICU Never Really Leaves You

This time of year always brings up a lot of emotions for me as we round in closer to Ellie's birthday. Three years ago, on September 22, we found out we had growth restriction again, this time with Ellie. That was also the first time we heard the phrase "elevated dopplers" which would be a refrain until she was born. The 22nd and 23rd of September were also the days I had to go to L&D at the hospital to get steroid injections to stimulate lung development. 

We then settled into the pattern of weekly monitoring for an ultrasound with BPP and NST with a repeated growth scan every third week. That next growth scan fell on Friday October 13 which surely should have been a sign. That was the first time we heard the phrase "absent end diastolic flow." That appointment is what got me put in the maternal fetal medicine unit for extra monitoring. The 13-15th brought more than 4 hours of watching baby on the NST monitors, a second round of steroid shots, a meeting with a NICU doctor, and more. 

Thanks to that steroid boost, I was able to go home and move to twice weekly monitoring at by OBGYN. This is when our lives centered around a Tuesday, Friday rotation. We were merely living and planning 3-4 days at a time. Halloween gave us a scare with some late decelerations on our NST, which brought us a surprise L&D visit for extra monitoring. Then of course, November 7 is when that absent end diastolic flow in our umbilical dopplers returned, this time happening 50% of the time. That was the fateful ultrasound was what led to Ellie's early arrival by c-section. 

Ellie ended up staying in the NICU for 27 days before finally coming home on December 4. It has been almost 3 years since our time in the NICU, but I notice more and more how that experience changed me. Even though we left the NICU nearly 3 years ago, it never fully left me. 

When I hear the beeping of monitors at the hospital making pastoral visits, it brings me back to sitting in our little bay with a symphony of those same beeps and alarms filling our days. When we go to the pediatrician for check-ups and they measure Ellie's height and weight, I'm right back there at all our scans, worrying we'll get bad news. Or I'm right back in the NICU, getting the daily weight checks updates, stressing over every little gram gained or lost. 

Ellie is still very petite, but just like those early days, she is feisty. She is sweet and silly and as stubborn as they come. I love watching her grow and see her personality develop. She's been doing speech therapy for a good amount of this year, which has been a tremendous help. We switched to a new provider since our preschool has an SLP that sees kids at the school. I shared with her that I've been worried Ellie might be dealing with ARFID (avoidant restrictive food intake disorder). She has been our wildly picky eater. She still doesn't do great eating a good variety of "regular" foods. She still nurses to help fill in those nutrient gaps. As I've reflected (and spiraled) about this, I've felt myself bracing like I did when I was pregnant with her and then in the NICU. Like I'm bracing myself against the rug getting pulled out from under me when things seemed to be going well only to find out something really scary was happening beneath the surface. 

I've found myself right back in the NICU as we tried to do weighted feeds, feeling terrified she wasn't getting enough. Wondering if I was enough to help her grow and thrive. In the NICU, I remember being so worried that the nurses and other members on our team thought I was a terrible mom. Or that it was somehow my fault when she wasn't growing as well as we wanted to see. I see those same fears transferred over to people like Ellie's teachers, her pediatrician, or any other providers she sees. 

When Ellie was born, it never felt like I "gave birth." Instead, I felt like they took her, almost in a punitive way, because my body was failing her. And I think that fear has stayed with me through all the phases of motherhood. I carried it in the NICU as I fought to feel like I was really parenting Ellie. After all, in the NICU, there are a lot of things you have to learn and even times when you have to ask permission before you do something. I think I still carry that fear that she's somehow going to get "taken" from me. And that fear can feel crippling. Three years in and I'm still unpacking how our high-risk pregnancy, traumatic birth, and NICU stay have shaped me. And I imagine this will continue for many, many years to come. 

We left the NICU after 27 days, but that whole experience never really left me. It probably never will. So, I will keep leaning in to how to let that chapter teach and shape me without defining me.