It’s been 4.5 years since I entered the ‘Life after the NICU’ stage of my motherhood journey. It still tugs at my heartstrings so many years later but in many different ways. This month is a great month to share this as well because September is NICU Awareness Month. This month is a time to raise awareness for the babies who have had a NICU stay, both full-term and premature. No parent wants to experience their newborn having a NICU stay, but it happens to some.
This post was originally published July 2020 and was updated in August 2023.
No one tells you about the emotions you would feel after having a baby. Specifically, nobody told me how life after the NICU would feel. Every mother has a different experience with life after NICU, depending on the needs of mom and baby. Babies who have medical needs, such as coming home on oxygen, require different needs than babies who do not. Moms who come home from the NICU after battling preeclampsia, for instance, require different needs than those who do not.
It doesn’t matter if your baby stayed in the NICU for 1 day or 100 days, each day without your baby with you is hard.
My pregnancy took a toll on me. I was dealing with rough emotions, moments that were life-threatening, and some experiences that really just made me regret getting pregnant. All of this didn’t help when it all came down to actually taking care of my baby.
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Table of Contents
The start of Life After the NICU
My daughter had a 15-day NICU stay because she was born at 35 weeks due to preeclampsia. All 15 days were awful. I really couldn’t believe that it was happening to me and my little baby was fighting for her life. She was a grower and a feeder in the NICU, so she didn’t have to be on oxygen or have an IV. But, the stay was still tough and something I never want to experience again.
I realized my life would never be the same the day my daughter came home from the NICU. Yes, I loved her. But the NICU was her home for the past 15 days and I wasn’t her primary caregiver. I was learning to navigate my life after the NICU. I felt zero connection with my daughter and I felt no bond. A lot of this was due to all the birth trauma I experienced. I was excited to have my baby home because she wasn’t in the hospital anymore and I didn’t have to ever go back to that dreadful place.
Does a NICU baby recognize their mom?
It has been shown in studies that baby will recognize their mom’s voice just one day after birth. Take this to heart knowing that your mom really does know you as their mom. Even if you don’t feel that bond quite yet with your baby, your baby knows you.
Every mother wants the best for their child, and during my life after the NICU my mind wandered always with thoughts like “am I really what is best for my baby?”
My husband would tell me every day that I was such a good mother and that even though bad things happen to me I shouldn’t let it get me down, but I didn’t believe it.
I let it get to me, I let it depress me, and I let every thought of inadequacy push me to my limits of hopelessness during my life after the NICU. I would look at this little baby, that my body brought into this world, and feel sorrow. Getting her dressed was something I hated because it reminded me how small she was and it was my fault she turned out this way. Every time I fed her formula, it depressed me because feeding her a bottle reminded me that I couldn’t breastfeed and she required a high-calorie formula to grow due to her prematurity and growth restriction.
I hated looking in the mirror. I hated showering. Those things just reminded me that I wasn’t me anymore. I was wearing clothes that were sizes I had never worn before, and sizes I never thought I would wear. I fought against stretch marks with creams during pregnancy, but I lost the war. My incision stood out against my snowy white skin and reminded me constantly how awful the surgery was. The hair on my head was falling out in clumps. My skin had so much acne on it that I didn’t recognize myself.
My nights were spent feeding a baby I didn’t know. And when I could sleep, I didn’t even though I was so exhausted. I was afraid this baby would die. And it would be my fault because I wasn’t looking after her.
A changing point in my Life After the NICU
I felt like my freedom was over. I would do nothing for the rest of my life after the NICU but change poopy diapers, wear droopy, unflattering clothes, and become bald.
My family and friends noticed these changes in me and how I withdrew myself from everyone I knew and hardly talked. Therapy was something I was encouraged to go to. So I did, and I shared how life after the NICU felt to me.
The first session was awkward at first. The therapist would ask probing questions every once in a while and I would answer without giving out too many personal details about life after the NICU. By the end of it, I was puking out thoughts and feelings I never told a soul about.
I talked about how mad I was that this happened to me. Everything included how pissed off I was that I had to experience preeclampsia and a NICU stay. I talked about how I couldn’t sleep during life after the NICU because of the anxiety I was facing with nightmares of the NICU. How I was so pissed that other young moms around me seemed to have no hardship, while I was struggling to climb out of bed.
After years of sessions on and off, both individually and with my husband something changed inside of me.
A bond with Cora started to grow. I wanted to be the one to bathe her. I wanted to be the one to wake up in the middle of the night to feed her. She was no longer some byproduct of the worst day of my life. She’s my baby and I wanted to love and care for her life after the NICU.
I no longer loathed my body. My scar is my symbol of strength. I went through something hard that saved my baby’s life. I looked at my body and saw all that it went through to grow and protect another life–my baby’s life. I owed my body the love and respect it deserved.
My life after the NICU is different now. The NICU stay completely changed me as a person. I will never be the person I was before I experienced the NICU, and I am truly better for it. Being a parent of a preemie has changed me forever.
I am 4.5 years now into my life after the NICU.
Throughout the years, my view has changed about the NICU and my life after the NICU. At first, I was consumed by it. I couldn’t think of anything else but the NICU. A lot of this was due to the trauma I experienced because I would have nightmares and panic attacks about it. I was struggling to cope with what had happened to me.
I was the only one I knew in my life who had a NICU baby, a premature baby, and experienced preeclampsia so I felt very alone. No one seemed to understand why it was so difficult for me since “we are both okay now.”
It is difficult to watch your newborn baby be taken away from you and allow nurses and doctors, who are strangers to you, to take care of your newborn. You leave the hospital every single night to a home that was prepared to have a baby in it. The crib is empty. The clothes are unworn. Your postpartum experience is looking a million times different than you thought it would.
When I held my baby, I was reminded how careful I had to be to not mess up all her wires. When I wiped away boogers, I remembered how she looked with a ng tube up her nose. When I changed her diapers or got her dressed, it reminded me of how tiny she was and the guilt I felt for it. As I washed bottles, my heart broke because I didn’t want that to be a part of my feeding journey with her.
As the years have gone by and as she has grown older I don’t find life after the NICU as difficult as I did in the beginning. I can now see just how much she has grown and developed and be amazed at how a tiny, 4-pound baby can now do so much. Because I put into the work through therapy and my life, I don’t get triggered as often and as hard as I used to. Some things will cause a breakdown because that part of life is incredibly difficult, and will always emotionally affect me.
Life after the NICU is difficult. One day, it won’t feel as heavy.
It isn’t the end of your life. There is a life after the NICU stay. It may take time to figure out your footing. It is hard to figure out how to be a mom to your NICU baby, even if you aren’t a first-time mom. You may be a first-time NICU mom. Sometimes it doesn’t come for years or months after the experience, that you will start to feel “okay” about what happened. I say “okay” in quotes, because what a NICU mom experiences will never be okay. It is completely unfair that a mom has to experience a NICU. These moms truly did deserve to have a better experience.
You aren’t a bad mom if you ever wished that things were different and if you don’t have a bond with your child after they come home from the NICU. A NICU stay is a traumatic experience for both you and your child and takes time to recover from. Trust those who say you are adequate. Press forward when being a mom is hard. You are strong, and you are an essential part of your child’s steps into life after the NICU.
How can I help my friend with life after the NICU?
Becoming a NICU parent is scary and it is important to support these parents. No parent wants to experience their newborn having a NICU stay, but it happens to some. Read my post “The NICU: 10 Things Your Anxious Friend Needs You to Know.” to learn how to support your friend or family member.
Becoming a NICU parent is scary and it is important to support these parents. No parent wants to experience their newborn having a NICU stay, but it happens to some.
What is life after the NICU like when you’re home?
It is dependent on the reasons why the baby was in the NICU. Every mother has a different experience with life after NICU, depending on the needs of mom and baby. Babies who have medical needs, such as coming home on oxygen, require different needs than babies who do not. Moms who come home from the NICU after battling preeclampsia, for instance, require different needs than those who do not.
What is life after the NICU like for mom?
It can be hard to adjust your life to having a newborn home even if the NICU wasn’t a part of your journey. With the NICU you go from your baby being away from you and being watched over by professional NICU nurses and NICU doctors 24/7 to just you and your partner. Sometimes your baby requires medical needs that can be overwhelming to do on your own. Even if your baby doesn’t require additional medical needs, such as oxygen at home, it can be difficult to adjust to life after the NICU.
How do I cope with being a NICU mom?
One of the things that can be helpful in your life after the NICU and being a NICU mom is connecting with other NICU moms. One of the ways I did this personally is by joining Facebook groups, connecting with other accounts on Instagram, and finding moms who went through what I did similarly. Sometimes the NICU you are in has a support group you can join with other parents who are like you.
You can also get mental health support from therapy, which I found incredibly helpful in my journey of healing. You are able to learn coping skills and learn to process what happened to you and your baby.
How are parents affected by life after the NICU?
Both mom and dad can be affected by the NICU experience. Oftentimes, the mom is the main focus because she is the one who physically gave birth, but the dad stood by and watched it all happen to his partner and his new baby. No parent wants to experience their newborn having a NICU stay, but it happens to some.
Dads may experience symptoms of birth trauma and postpartum depression as well. It can be a traumatic experience for both parents to watch their newborn struggle in the neonatal intensive care unit. Both parent’s lives are forever changed by the experience and will need to learn how to cope with it both individually and together.
Often times parents didn’t have any choice in their baby was brought into the world and it was out of their control. It was a matter of life and death. Having your life turned upside down and having to make decisions that have life-or-death consequences is so scary. These parents need support for their life after the NICU.
Taking Cara Babies has a wonderful article about transitioning to Life after the NICU that is well worth the read. You can read it here.
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If you are a preeclampsia survivor or HELLP syndrome survivor and would like to share your story, please contact me through email at courtney@knockonmotherhood.com. I would love to share your birth story and keep spreading awareness. I am trying to gather as many preeclampsia survivors’ birth stories as possible to spread awareness.
If you are a preemie mom, I would also love to share your story. Please contact me through email at courtney@knockonmotherhood.com.
UPDATE AS OF 2023: I am no longer taking submissions for stories to be shared.
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I can really only imagine how traumatic it must be to go through labour and end up with your little one in NICU. You’re so brave and Cora is beautiful!
Thank you. It was very traumatic. I’m grateful all ended up well.
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