The full range of thoughts and emotions in the mind of a NICU parent is incredibly hard to describe. When your child is in the NICU you wonder if you're alone in the feelings that engulf your heart and your head.
After three NICU stays in one year, we've watched our boys fight for their lives, we’ve lost, and we’ve brought home a miracle. I am frequently asked what our experience was like and so I want to share with you the a glimpse into the range of emotions we went through on this journey. And while each parent’s NICU experience is unique, the emotions of it all can be very much the same.
Your heart sinks when your baby is rushed to the NICU and many times you are stripped the opportunity to hold them. The overwhelming feeling of worry, sadness and guilt when you walk through those NICU doors for the first time and every time after that. The beeping machines. The medical jargon. The countless number of wires, tubes and machines attached to such a tiny human. The sterile smell. The fear and anxiety. The environment you may have heard of, but never really knew what went on inside. The emptiness when you are discharged from the hospital and have to leave your baby behind. The unknown of every minute of every day. The fact that you want to find joy, hope and excitement in your new baby but you're watching them fight for their life. The constant wonder if there will be a light at the end of the tunnel. The way your heart races every time you meet with the care team to hear what the day holds. The incredible feeling of both joy and fear when you hold your baby for the first time, sometimes days or weeks later. The constant guilt and frustration. The way your heart aches because you can't hold your baby whenever you want to and have to look at them through a clear box. The fact that you have so many questions that you don't have any answers to. The lonely feeling at 2:00 am when you have to wake up to pump but your baby isn't next to you. The way you cling to your phone when you aren't there but you also don't want the phone to ring because a phone call can mean bad news. The way your stomach drops, a lump forms in your throat, your heart skips a beat and your mind goes blank when you hear a diagnosis, a procedure needed and the likelihood of survival. The soft smile while fighting back tears when your baby hits milestones, but not the milestones we think of when you bring a baby home… the milestones of your tiny but mighty warrior hitting 2 pounds, 3 pounds, off phototherapy, off CPAP, first bottle (which may be just 5 mls), first outfit because you couldn't dress them before, first time you get to do skin on skin. Finally, the unexplainable gratitude for your care team who loves your child as their own and ultimately becomes family.
The thoughts and questions never end and constantly race through your mind. Will I bring my baby home? Do I stay here 24/7? If I don't, am I a bad mom? Do I go back to work? How do I answer the question "How can I help you?" to my support system when I don't even know what I need? How long will we be here? The list goes on and on and most of the time there isn't a black and white answer, if any answer at all.
The NICU is ineffable. The experience is not defined by the number of days. No journey is easier or more difficult than another. We do not ever know when we will bring our baby home until it's time and yet when we do, the journey truly never "ends". Parents may bring their children home on oxygen, feeding tubes, trachs, or no medical equipment at all. Some may never get to bring their children home. No matter your experience, it stays with you forever.
I have had the most difficult yet best moments of my life in the NICU. The NICU is a place I'm beyond grateful for and will forever hold a special place in my heart.
Original Article: https://www.carterscause.org/post/it-s-okay-to-need-boundaries-mama