I was going to wait to post this until I’d finished writing about all the days in the NICU… but feelings kept popping up and I wanted to write about them. This may seem like just a long rant. In a way it is. There are of course many many feelings I had when Beckett was in the NICU. Some are probably obvious: fear, worry, sadness, but also joy, pride, and optimism. The rants below are specifics on some of the feelings that surprised me and/or impacted my mental health during our time in the NICU.
Before diving in, a reminder that I am not trying to offend anyone. I know that everyone who reached out to us were 100% well meaning and we appreciate every one of you.
Every doctor we met with that first week in the NICU would start off by saying “first off, congratulations!”. Lots of family and friends messages would start with a similar message. In the physical and mental place that I was at, I couldn’t for the life of me understand why people were starting off by congratulating me. I was grieving; grieving for having missed happy first experiences, for the healthy baby I thought I was having, for pure optimism for the future. Would you congratulate an adult in the hospital with a brain injury? Probably not. You would probably offer condolences for the situation and of course best wishes. To me these types of messages were more in line with how I was feeling. Every “congratulations” confused me. A chain reaction of emotions would happen then. Guilt. Would a better mom be celebrating right now? Was there something wrong with me? Was I supposed to see past the fact that my baby was in the NICU with a future that was completely uncertain? I think maybe a congratulations is appropriate somewhere in the messaging, since I was obviously so proud of our baby boy, being so brave and strong everyday, but it just felt invalidating for it to be the first thing said. I’m sure every NICU parent feels uniquely about what they need from others. For me, I needed acknowledgement of how shitty everything was first, followed later by good vibes and well wishes.
Another thing that I found frustrating while Beckett was in the NICU, was when people would try to offer perspective based on their own experiences as parents. I’m not sure if it was to try to relate, or offer perspective, but there were lots of people telling me about their own baby’s struggles. People telling me about that time their baby once needed an X-ray. That time their baby struggled to latch. That time their baby was in an incubator for a day etc. etc. Lots of babies have health concerns, and I’ll not hesitate to say I’m sorry to or empathize with anyone that has had a baby or child with health problems. I’m sure they were probably scared that their baby needed an X-ray. But it’s not the same thing as my baby having to have an EEG, 2 MRIs, a lumbar puncture, multiple X-rays, and ultrasounds all within the first few days of his life. And a misaligned bum hole. I also feel for any mother that struggled with feeding their baby the way they wanted to. But a poor latch is not the same as a baby getting fed with an NG, with little to no sucking reflex. I didn’t, and still don’t, need perspective. Sometimes it’s okay to not have a story to relate to someone else’s experience - I would have appreciated just being able to vent if I wanted, or sit quietly and reflect. I wanted to hear from people with legitimately similar experiences. NICU parents, specifically parents of children with HIE. I was and continue to be in touch with a friend of a friend who’s baby boy was born with HIE in 2022 - she has helped me through a lot of the fears and uncertainty and continues to be an honest but also optimistic peer. My unsolicited advice to people would be to not try to relate if you honestly can’t. Just be there to listen or sit in silence when someone is going through an experience like having their newborn in the NICU with massive questions about what their future looks like.
One last thought on how I felt when Beckett was in the NICU: there was an overwhelming feeling of being overwhelmed. At the time I was prioritizing as many people as I could because I felt I had to, and not prioritizing myself enough. I needed as much time bonding with Beckett as I could get, but I felt this obligation to allow grandparents (we were only allowed 4 approved visitors) to come visit pretty much every other day. At ACH NICU, only 2 people are allowed in the baby’s room at a time and one has to be a parent. So each grandparent visit was like 2 visits, and either Keith and I had to be out of the room away from Beckett. I love and respect how much our parents wanted to visit and be with Beckett during that time, but if I could go back in time, I would prioritize my needs more and limit the visits to probably once a week each. Since our NICU experience, I’ve learned so much about identifying what I need for my mental health, and prioritizing those things a bit more.
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