NICU Awareness Month 2019

Originally published on http://www.itsybitsybalebusta.com
09/2019

I only recently realized that September is NICU Awareness Month. 

I’ll admit, I’m a little hesitant when it comes to Awareness Days. After all, who isn’t aware of the NICU? Whether or not you’ve had the misfortune of joining the club, everyone knows of this ward in the hospital and the incredible and miraculous work that takes place beyond those doors. What I tried to shed light on through my IUGR series and what I still feel people aren’t necessarily so aware of, is what it really means to be in the NICU Not only for the child, but for the entire family (you can find the post about our NICU experience, by clicking here). Even more so, I don’t think anyone really understands or acknowledges life after the NICU nearly enough. 

It took three years for me to realize that I hadn’t.

I vividly remember begging the nurses and doctors for any sort of indication as to when N would be discharged. I also remember the feeling of giving up asking and realizing that there really was no magical date or timeline. That everyday, we’d take two steps forward and one step back from that exit. He’d maintain his temperature, but then he’d only take a quarter of a feed in the allotted time and the rest would have to be administered through his NG tube. That one afternoon, a nurse would remove said NG tube, much to my celebration, only to return the next morning and see it right back there, taped to his face, because the night feeds hadn’t been successful. It is not a joke or exaggeration when people say that life in that wing is a roller coaster ride. There’s that feeling of losing your breath and your stomach dropping right as you’re at the peak – whether it’s when you’re about to watch a test be administered or when you see the doctor enter the room and you just know the results are in. It’s terrifying and heartbreaking and miraculous and inspiring. 

The boys were born fifteen months apart. It took another two and a half years before we were ready to add to our family again. I felt so prepared, while I sat in the pre-pregnancy consults and ticked questions off of my list in my notebook. I was addressing all of the issues that had come up during N’s pregnancy as well as his diagnosis and how that would affect subsequent pregnancies and what it would mean for us. I listened to statistics and different courses of action that could be helpful in preventing any issues this time around. I took those preventative measures and met with a whole team, including an MFM and dietician. When the doctor made it clear that I’d be considered high risk, I nodded along and, if anything, was happy that it meant I’d have an increased level of care and monitoring.

I had no idea.

I was at that hospital more often during my pregnancy with baby E than I was almost anywhere else. I had two appointments a week – one ultrasound or BPP and a slew of other tests. Not just at the end or occasionally, but for almost the entire duration of my pregnancy. I’ll get into my pregnancy with E more in a separate post, but I want to make it clear that I was being attended to and monitored with the utmost vigilance and care. I had plenty of opportunity to ask questions, address concerns, and work with professionals whose patience and knowledge made all the difference. 

I know exactly the day there was a shift. It was a couple of weeks after my pregnancy became increasingly more complicated and I had to be put on medical leave. I was seated, waiting for my name to be called for that week’s ultrasound when a new mom was wheeled out of the elevator and her exhausted looking partner was looking around the hallway for signs. For the NICU. So that she could go and meet her baby. Her face, the fear and anguish… it broke me. It took me right back three and a half years. I started to openly cry sitting in my seat. I wanted to run over to her, hug her, and tell her that none of this was her fault, because that’s what I felt the first time I was wheeled into the same room, in the same hospital.

That was the day that the NICU wasn’t just a memory anymore. It was the day that it once again took precedence in my thoughts. From that point forward I asked at every appointment what the chances of this baby needing the NICU were. What weight she had to be to avoid it. What I had to do to prevent us from ever having to go through that again. Obviously, there were no answers. There were estimates and ranges, statistics, and the same line over and over again, “We won’t know until she’s here. For now let’s just focus on…” There was nothing I could do. Again. 

My MFM was incredible and listened and acknowledged my concerns and some rational and logical part of my brain also knew that he couldn’t promise me we’d avoid the NICU, but I just wished so much that he could. Baby was measuring small and that meant that my fears were measuring quite large. He referred me to speak to the team psychiatrist who was amazing and reassured me that my fears were totally normal and helped talk me through them. 

When it came to the delivery day, I was thrilled that I was going to meet my daughter. That I was going to be able to experience being the mother to a strong, brave, and beautiful little girl who had given me such strength throughout my pregnancy each week when I saw her little face on the ultrasound. But if we’re being honest, I was absolutely terrified. I knew we were hours from either being admitted to the NICU or being admitted to a postpartum room. That fear dictated a lot concerning my delivery. When it came to N, I wasn’t allowed to accompany him to the NICU because I had received an epidural and had to stay in recovery. That meant I didn’t really get to see him for hours. I couldn’t let that happen again. Her being admitted wasn’t in my control, but my ability to accompany her should she have to go was (at least a little bit). So that was it, I opted for no epidural, not a single IV, so if she had to go I’d be ready to get up and go too. The intensity of the pain was greater than anything I could have imagined. The only thing that was still greater was the fear. Right before she was born I sobbed and screamed out, “I’m so scared.” At that point every doctor and nurse knew exactly why, as I had been clear from the beginning. They reassured me and seconds later she was on my chest. When they asked me to pass her to them to be weighed I began to sob. I couldn’t breathe waiting for the number to enter the room. Three and a half years earlier it was that number that sent the NICU team into action and whisked away my little boy. The agony waiting to hear that number… it felt like it took

years. My incredible, strong little girl beat the mark by 104g. 104g meant that she could come back to my arms and would be assessed in room. She passed every single test beautifully and together we were admitted to the recovery wing. I took my first deep breath in months and held on to my littlest hero, knowing how close we’d come. All interventions and tests required were able to be performed in room next to me, and it wasn’t until we were discharged a few days later that I could finally accept that one of the test results wouldn’t return stating she’d have to be relocated to an isolette a floor down.

I know I’m one of the lucky ones. That both times I was able to eventually bring my children home. That their stays weren’t more complicated or life-threatening. I know that. I also know that the delivery room nurses were well meaning when they reiterated that if my daughter were to need the NICU, she would get the best care and it would be what she needed to grow well and thrive and we’d get through it.

I’m sure this isn’t what you expected as a NICU Awareness Month post. Part of me feels selfish that I’m not focusing on N. The fact that this was his experience, he was the one who battled, he was the one who deserves all of the attention and recognition, praise and awe. But I just wish I had come across one other perspective like this when I was pregnant with E. One other person whose experience standing by and advocating for their child in the NICU resonated with them in new ways long after the experience was over. I’ll be honest, in the years between Noam being born and this pregnancy, my fears of the hospital and NICU and everything from that experience hadn’t just disappeared. But with each passing day, they faded a little until they were a memory and not a nightmare. But when faced with the fact that this could once again be my reality, I didn’t know how to process it. You’ll see plenty of posts this month about what it means to be in the NICU, but I wanted to share my experience about what it means to be possibly facing the NICU after you’ve lived through it once before. It amazes me that new situations and experiences prompt new moments where I have to face what happened and get through it all over again in new ways, in a new context. Even after you’re discharged, you’re still in the club.

If you’re facing the reality of the NICU again, if you’re worried or feel like no one understands, know that you aren’t alone. I hope you have a medical team that cares for you totally and completely. I hope you have the support you need to go forward. I hope you have the strength to face each appointment and, ultimately, the delivery. And if you need someone to hear you out, with no judgement and from a place of some sort of understanding, please feel free to reach out. NICU Awareness Month is about the wonderful nurses and doctors, the miraculous babies, but it could also be about you – whether you’re sitting next to an isolette today or remembering back to when you did.

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