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The 6 Stages of Emotion I Experienced When My Child Was in the NICU

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Elisabeth Kubler-Ross says there are five stages of grief. When it comes to death, I can agree with those stages to the letter. With preemie and NICU life, though, I don’t think they quite fit. Some of the stages are the same, especially anger and depression, and acceptance is the goal, but the route one goes through on the journey, I’ve found, is so different.

Why? You are still dealing with a changing situation, and your child is solely dependent on the choices you make for them. It can be a rollercoaster from day to day. Sometimes those stages overlap, or are cyclic; uncertainty and hope are in a symbiotic relationship. It can be hard to explain it to someone who hasn’t been through it, especially to friends and family who are on the outside looking in. Maybe if there was a scale similar to Kubler-Ross’, it could make sense to those who want to help their loved ones who are in the middle of the battle. These are the six stages I propose.

Stage 1: Fear

Fear is an overwhelming and consuming emotion. It can set in as soon as the word NICU pops into the conversation with the doctors on the way to the delivery room as the early labor refuses to stop, or when a medical condition is discovered on a prenatal scan. Even the most informed parent may experience it to some degree; I felt it when my daughter was born early, even though I had been through it with my son once before. It was much less severe, since I knew the drill, but still, I didn’t know what might happen next.

Stage 2: Anger

Anger usually comes on the tail end of fear. Anger at the situation, often one you cannot control. All the training from 12-step programs about accepting the things you cannot change and having the courage to change the things you can is often difficult to remember when you see your child in an incubator, sometimes with tubes or IVs coming out of them. You may feel anger about not being able to do anything to help them.

Stage 3: Depression

Depression can be what anger turns into; Freud didn’t call anger turned inward depression for nothing. You may get so angry with yourself for not being able to help your baby, because you weren’t able to carry to term, or because you think you did something wrong in your pregnancy. No matter what anyone tells you, you may still feel the guilt. The depression often fades over time, but the guilt can linger and spring on you at the oddest of times. In my case, it comes back whenever my son gets a bad cold and takes weeks to shake it because his lungs didn’t get a chance to fully develop. PTSD and post-partum depression can be more common in NICU families, and therapy can help, but all the coping mechanisms in the world cannot erase the experience completely from your life. You just learn how to function with it and let it hurt a little less.

Stage 4: Monotony

This is when your life gets into a routine of going back and forth from the hospital, to the pumping room if you are pumping breast milk, to a waiting room when you cannot be in the NICU during procedures, to (if you are lucky) home, then back again. It’s an endless cycle of scrubbing, and washing pump parts, and hoping for kangaroo time if baby has a good day. It’s learning how to tell when alarms in the NICU are for your child or for another child, just by the sound. It’s learning which days to avoid the hospital cafeteria because it is a horrible food day, and how to navigate the hospital halls to avoid certain wards over others, etc. Then one day you hear those magic words: “We can start looking at discharging your baby soon, if they meet certain goals.” That is when stage 5 begins.

Stage 5: Uncertainty and Hope

I believe uncertainty and hope are like yin and yang. You get this excited feeling that the nightmare is over, that soon you will get to settle in at home with your little fighter, but at the same time, you may have that fear creeping in that you don’t think you can do this. You have been helped by all these nurses and doctors for so long that you wonder if you can handle this tiny human all on your own. The nurses are usually pretty awesome and can help you transition to doing all the diaper changes and feedings in step down units, show you how to do the baths, etc. They are great at training you if you have to go home with monitors, oxygen, or other medical equipment, and setting you up with home health nurses if needed.

The best advice ever given to me was to listen and learn from the nurses. They are the ones who have been with you from the beginning, so they can help you with your fears and talk you down when the fear and uncertainty come over you. They are just as excited for you to be going out those doors, but wouldn’t recommend it if they didn’t think you could handle it. Take strength from that.

Stage 6: Relief

The day has come: You can go home with your little miracle. Yay science! The flood of emotions you may feel can surprise you. You might get teary-eyed when you realize that the cycle of monotony is over; you won’t have to come back again and only sit next to your child. You get to go live a life away from the hospital with baby; and if you have other children, get to finally introduce their little sibling to them. The joy is amazing, and it can be a great stage to reach. Enjoy it; it is a well earned and deserved end to the roller coaster ride you thought would never end.

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Lead photo source: Thinkstock Images

Originally published: April 13, 2016
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