When I was blindsided during my pregnancy that my baby had a cerebellum brain bleed in utero, I was consumed by all of the emotions that come with receiving unexpected news….worry, anxiety, and guilt. I spent the rest of my pregnancy battling these emotions. I was so focused on this diagnosis that I never imagined anything else would go wrong. So when I developed severe preeclampsia (a complication from high blood pressure) at 35 weeks and was forced to deliver early, I was in for an eye-opening experience. Although I’ve always worked in OB, nothing could prepare me for having a premature baby and life as a NICU parent.
It’s strange having someone else take care of your baby. When I was finally able to go to the NICU, I never wanted to leave. When I was away from him I felt so anxious thinking that he was lying there, wondering if I had abandoned him. I was desperate to stay by him. Any time I was forced to leave the only thing I could think about was getting back to my baby. I lied through my teeth. No, I didn’t hurt. No, I didn’t have a headache. Yes, I’m getting plenty of sleep. I would even lie completely lateral when they were taking my blood pressure so I would get a lower reading. And as a nurse, I know this was not a smart, or a safe, thing to do. But I felt like that baby had a part of my brain with him in the NICU. All I could think about was that I needed to be there when the doctors made their rounds, so I wouldn’t miss anything.
There were so many people that impacted my entire stay as a NICU parent. I frequently slept in a chair next to his warmer, holding him skin-to-skin. When every single person was telling me that I needed to leave the baby and go back to my room to rest (including my husband!), one NICU nurse asked me how she could make me more comfortable. I felt so much relief, because I knew she understood why I didn’t want to leave and that made me feel so much more comfortable when I wasn’t able to be at his bedside.
Another nurse silenced his alarm, and when I noticed it was flashing that his oxygen levels were too high, I asked her if they were aware that it was alarming and she snapped back that the doctor knew and was the only one that could decrease his oxygen levels. I instantly started crying, trying to tell her between cries that something was already wrong with his brain and I didn’t want there to be something wrong with his eyesight (I’m not even sure if there is a correlation between oxygen levels and a baby’s eyes, but I thought I had remembered something from nursing school). After this, I tried not to eat or drink so I would minimize my trips to the bathroom because I didn’t want to leave him alone for even a few minutes.
I came to work on a Friday, was admitted to have my baby, and did not step foot back into my house or into my own bed until 25 days later. My entire labor and delivery experience was a blur. I remember the nurse that offered to make me more comfortable. I remember the resident who calmed me down when I was told that I had to be restarted on a medication that restricted me to my room (no NICU!!!). And I remember the nurse practitioner that said I could breastfeed for every feed, and I remember how it felt like that was the first time I was doing something to help my baby.
So for every person out there that interacts with our patients, know that we make a difference and we have the ability to change a patient’s entire day. We are capable of making a patient feel hopeful or helpless, anxious or reassured, and what we do and say matters. We never know what our patients are thinking or going through, or what kind of struggles they had to endure to get in front of us. And for anyone out there that experiences life a NICU parent, remember where you started from, and think about where you are going. I hope you are surrounded by amazing people like I was, and find peace within yourself that you will get through your life as a NICU parent, and one day it will all be a fading memory.
It’s so hard to believe that six months ago we were worried if our baby would die before ever being born, if he would be born with no quality of life, of he would have another stroke inutero. And although the doctor’s prognosis was pretty reassuring as my pregnancy advanced, I just could not find peace with what had happened. Since no one was certain what had caused the bleed, I spent every single day wondering if he was having another stroke and if our lives would be shattered all over again. I struggled with the question of whether or not I could care for our baby if he had a disability.
This new year, I’m so very thankful that he smiles and he is growing so well. I don’t know if he will have trouble walking or with his coordination, but I feel so much stronger now than I did six months ago, and every time he smiles I am grateful for where we are now. Working for such an amazing hospital that deals with many complicated patients, I know that my baby and I got off “easy.” He didn’t have to have surgery, he wasn’t in the NICU for months, and he has a great, and so far, normal, quality of life. For that, I’m very very thankful. For anyone out there that didn’t get off as “easy,” know that I am think of you. And even though this doesn’t make anything better, or easier, I’m sorry that anything unexpected had to happen to you, to your family, or to your baby.