Facing my NICU reality

I think from the very first day of going into the NICU, I lived in a state of denial.

Even after processing and accepting some of the reality of where we were, I was still in denial of what my expectations should have been for everything. It didn’t end in the NICU, I remained in denial even after we brought our baby home. I would repeat this pattern of not facing the full reality of our situation. It wasn’t just a hope for the best kind of thing, but almost a full on denial of what was going to happen next.

It started when we went into the NICU. Our daughter was born at 27 weeks. During those first few days I kept telling myself that we were here, but we would probably be going home soon. Our nurse explained to me that our baby wasn’t going to go home anytime soon, that rather it would be closer to her actual due date. That was months away! So I had to face reality. I had to face the reality that we were not going to be here for a few days, not even a few weeks, we were going to be here for MONTHS!

Don’t get me wrong, this was not something like blind denial or just someone refusing to face reality, or so I thought. I am a go-getter kind of person, a problem solver, a fixer of broken things. So my denial came from a good place. It was an optimistic hope that we were gong to beat this and crush whatever goals or milestones that we needed to hit. I remember our nurse telling me that in all her years of working she had never seen a baby born that early go home before their due date. She came home at 37 weeks!

Things in the NICU go back and forth. You have good days and bad ones. You have strong weeks and you have weeks that are such a struggle. It is so tough. So sometimes we do go beyond some normal heavy optimism and sometimes do have some denial of the severity of things or some of the outcomes that we can face. When we talk about preemies like my daughter, they can face several  and a wide range of health issues. It is so hard to think about that, but then you don’t want to think about it because you don’t want to put even the thought into existence.

After our baby came home I still dealt with my denial.

My denial was probably even worse after we brought our baby home. We were seeing so many doctors and having evaluations done all of the time. Our baby had done so well in the NICU, I just assumed that everything was going to be even better once we left the NICU. She was passing all of her early evaluations. I thought, this preemie stuff is easy! I didn’t realize that she was being evaluated against newborn babies and not older babies. As she got older she started failing her evaluations. She was being evaluated against normal babies a few months old. They recommended that she have therapy. I couldn’t believe it! She was a PERFECT baby. Oh my denial. She had low muscle tone in her upper body. She couldn’t hold her head or her body up the way she should have. She also had torticollis. I finally faced reality and during our time with our physical therapist I could see how far behind she was. Thank goodness for all that we were prescribed, she got stronger and better before we knew it. I can’t imagine where or how our daughter would be physically had I stayed in denial thinking everything was alright.

One thing I never really thought about until today was my denial of how our NICU journey has affected me.

The numbers are out there on how many NICU dads suffer from PTSD and even postpartum. I kept thinking that we made it through everything and that I did it unscathed. Now I see that I can’t talk about our NICU story without crying. EVERY single time. The more I talk to other NICU parents and I see the feeling I get after we share, it helps me understand that this isn’t just a conversation, but a form of therapy. I see how much I need it, just like our daughter needed hers.

I think the best approach is to have a healthy balance of optimism and facing your reality.

Always hope for the best outcome and keep a positive attitude as much as you can, all the while staying in the space of the reality of what your situation really is. That’s not easy. Especially when you don’t leave your preconceived notions of how things should go or be at the door. The best way to do this is to talk to people. Ask your NICU staff or other NICU parents who have been through similar situations. Educate yourself on what usually happens or what kind of expectations you should have in situations like yours. Also, please, if you are referred to a therapist or extra care, please take it. Don’t let your fears or insecurities of what others will think or how your child might be labeled keep you from getting the help your child needs, but that may be a conversation for a different day.

As always, good luck if you are in your NICU journey and know there is light at the end of the tunnel. For current and past NICU parents, especially NICU dads,  if you are having a tough time please talk to someone. There are many wonderful organizations out there for NICU parents that offer some great support!