NICU moms are strong. They are warriors. They hold it together and fight for their babies, keeping watch over them as often as possible.
But NICU moms are in pain. The pain comes not just from delivery, both vaginal and C-section. The pain comes not just from swollen ankles and swollen, well, other bits. The pain comes not just from the headache you get from Pre-eclampsia or Magnesium infusions and the pain of an empty heart because your baby is not in the same room as you. The pain comes, in part, from grief.
Being pregnant and having a baby is a miraculous process. I never knew how much I could love someone I had never met until I had a miscarriage. We had been trying to get pregnant for about a year and I remember crying tears of joy when I saw the positive pregnancy test. I fell in love with that baby, the idea of that baby, the dream of bringing that baby home, the dream of holidays and traditions with our baby - I fell in love with motherhood the minute the pregnancy test was positive. I spent four weeks imagining the life I would have after I brought my baby home. And then my world was turned upside down when I lost my baby at 10 weeks.
When a mother finds out that her pregnancy is derailed, regardless of the reason (miscarriage, prematurity, congenital anomalies, traumatic delivery), it is OK for her to grieve. It is necessary to grieve. It is important to grieve.
I intentionally titled this post “It’s OK…” The worst phrase someone can hear when grieving begins with “It’s OK."
“It’s OK - you can get pregnant again.”
”It’s OK - your baby is going to be fine.”
”It’s OK - I know you are a fighter and so is your baby.”
Well, quite frankly, no. It is not OK. We don’t all know we can get pregnant again. We don’t know that everything will be fine when our baby is critically ill. Stop telling us “It’s going to be fine” and “It’s going to be OK." Because you don’t know that. And I don’t know that. And it is scary. It is OK to feel bad; to feel overwhelmed and scared to breathe. Be sad. Be mad. Be angry. And grieve. Grieve the loss of the “normal” pregnancy you wanted. Grieve the loss of having a healthy baby that stays in the room with you and goes home with you. Grieve the ideal breastfeeding journey you were striving for. Grieve the loss of the dreams you had for this baby at this time. In order to create new dreams for your growing family, you need space to grieve what you anticipated.
Going through medical school, I’d learned there were five stages of grief, but it wasn’t until I lost my pregnancy that I lived through them.
The first phase is denial - it helps us survive the grief. When you start to cramp and bleed at week nine but convince yourself you are just tired or dehydrated. Those first hours after being admitted to Labor and Delivery at 24 weeks with pre-eclampsia, when the doctor tells you that you are going to have a premature baby, and you just know you are going to stay pregnant for another 10 weeks. Those days after you rupture your bag of water at seven months but try to convince yourself that you just peed. That is denial. Denial lets you control the pace at which you grieve. You get small hints of grief, small moments of panic and then stuff it away with denial.
Anger comes next. It is a necessary stage of healing. We direct our anger in different directions - sometimes it is directed at spouses and family, sometimes at the doctors and nurses caring for the baby. Parents can feel anger towards God and even towards their baby. That anger is OK. You are OK. It is OK to be angry. Anger shows how intensely you love your baby. Often with grief, it is as if you are completely disconnected from the world and the people around you, giving you a sense that you are floating, lost in space. Anger gives you a sense of connection - when you are angry, you are connected.
As the anger fades, and the feelings of grief begin to settle in, the third phase rolls in - bargaining. Bargaining and guilt go hand-in-hand. “If only” and “I promise” statements fill our brain. If only I hadn’t worked out so hard once I found out I was pregnant, I wouldn’t have lost my baby. If only I hadn’t gone on vacation I wouldn’t have delivered early. If only I hadn’t gotten so stressed out at work I would have stayed pregnant longer. I promise if you fix everything and make life “normal,” I will… Bargaining and guilt hold us in the past preventing us from moving forward.
Depression comes next, moving our brains out of the past and into the present. We have to face the reality of our loss. The loss of the dream. The loss of a healthy child. The realization that life will not be the same. Depression is a natural part of grief, not something we “just push through”. We need to feel and acknowledge what we wanted in order to accept where we are.
And that brings us to the final phase of grief - acceptance. Acceptance is not about saying we are “OK” or “fine." It is not pretending that everything is as it should be. Acceptance is about living and moving forward with your new reality: Finding routines for splitting your time between the NICU and at home with other children. Finding routines for being with your baby and working so you can save your maternity leave for when your baby comes home. Creating new dreams that are built upon your new reality.
For me, grief was not linear. I tried to stay in denial until it was ripped away from my grasp. I would bounce between anger and depression - and then depression settled on me and held on for a long time. Just as I thought I was moving into acceptance, anger would pull me right back and I would be grappling with anger and bargaining all over again. But my friends and family stuck by me and supported me and eventually, I found my way out of grief, into acceptance, and able to move forward with trying to have the family I wanted. I won’t lie - it was hard, really hard. I was scared. What if I lost another baby? (Which I did.) What if I’m not strong enough to do this? But I was strong enough. I braved the next steps, and now I have three healthy children! I am so glad I didn’t quit on my dream to have a family.
Both Christie and Katie had babies in the NICU in the last 5 years. They shared their stories with me.
“When I heard from the doctors that my baby might not make it to delivery, my way of dealing with it was to pretend that wasn’t true. I kept taking bump pictures as if we were going to make it to term. That was my grieving process at the time, complete denial. This is my last bump picture before delivery - you can see my swollen eyes from crying.” - Christie, a NICU mom
Katie writes a lovely recounting of her experience in the NICU, holding her son for the first time, that illustrates the denial and fear that often start the grief process in the NICU.
"Chris and I didn’t realize how serious this second surgery was, giving truth to the saying 'ignorance is bliss.' It was unthinkable that our son was already going to have his second surgery and he was only one week old. The gravitas of the situation became real to us because we were allowed a significant moment before the surgery: we were allowed to hold Tim. I had never cradled my week-old son in my arms. The gesture took me by surprise for a number of reasons. It’s an instinct to hold one’s baby, yet I was terrified to hold my fragile son and had to be reassured by our primary nurse, Jill, that I could do it. But deeper down, I was afraid it would be my first and last time to hold my son. Jill moved all the tubes and wires and gently positioned Tim in my arms. It was the first time I felt connected to him outside of my tummy. I was overwhelmed by our embrace and didn’t want to let go of him. I was crying so hard my tears were falling on his face. I never felt so alive to the impossible preciousness of each second I had with him. And finally, finally, I felt that bond that mothers feel, that I had been missing. It’s hard for many mothers to understand, but NICU moms can relate; I was scared to get attached to him.
For moms in the NICU, moving through grief allows you to accept the reality of holding your baby once a day while they are still less than 2 pounds. It is accepting the little victories of getting central lines and breathing tubes out. It is accepting that you will be an advocate for your child’s health. Moving through grief and processing your grief allows you to enjoy the little moments of joy and big milestones with your #MightyLittle.
“Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.” — VICKI HARRISON