It is said that the walls of the NICU have heard more prayers than the walls of any church. After my own NICU journey with my daughter, I believe it. Born at 32 weeks and at just three pounds, my daughter spent seven stressful weeks in the NICU before heading home.
Unlike most mothers I didn’t get take my daughter home after birth. I didn’t get to hold her to my breast for her first meal. In fact, I didn’t get to touch her at all.
I arrived in the NICU like most mothers do; broken, sore, somewhat drugged, and in shock. My daughter’s birth left me too weak to stand on my own and for the first 18 hours I was in and out of consciousness. My nurse brought me to see her in a wheelchair the day after she was born, but I was too weak to hold her and fighting the urge to pass out and/or throw-up at the same time.
Then the world narrowed for a moment as if it were just her and I. Resting my forehead on the warm plastic of her isolette, I stared in at this tiny little baby that didn’t even feel like my own yet. I reached my hand inside and felt her impossibly tiny hand grasp my finger tip. The first of many tears rolled down my cheeks splashing on my hospital gown as I told her I was sorry. Sorry that my body failed her, sorry that I gave birth to her 8 weeks too early, sorry that I hadn’t been there with her until now, so very sorry that her twin sister died shortly after birth, and sorry that I had to soon leave here again.
This was only the beginning of a very long and difficult journey for us as a family. I spent weeks sitting at my daughter’s bedside watching the monitors, seeing her make progress then lose the ground she gained, watching her undergo painful medical procedures that made me want hit her doctors, but knowing they had to be done. I spent weeks waking up in the middle of the night looking for my baby only to find a breast pump instead, weeks of jumping whenever my phone rang and weeks of watching many of my first motherhood moments being experienced by someone else.
Towards the end of her NICU stay, I had to advocate for my baby. I knew she was ready to go home, but they kept putting off discharge. This is when her doctors, nurses and I parted ways. My instincts and research told me that she had reached a point where she would do better at home than in the hospital. So I started planning for her discharge and didn’t let up until my husband and I were finally walking out the doors of the hospital for the very first time with our baby.
Every NICU journey is unique. I can tell you what my daughter has overcome, but that doesn’t mean every NICU baby will have those same struggles, treatments, setbacks, successes or milestones. Some mothers will wait patiently (or not so patiently) while their baby grows in the NICU. Some mothers have an easier and shorter NICU journey than others, but we all have one thing in common…
Once you are a NICU parent you are ALWAYS a NICU parent.
To help others in this journey, I want to share some truths that I wish someone had shared with me.
Truth: Feeling like you aren’t bonding with your baby is normal. Having a traumatic birth and having your baby taken away immediately after birth is detrimental to the bonding process. I felt I bonded with my daughter who passed away more strongly than my survivor in the NICU simply because I held her just after she died. The good news is that you can overcome this with lots of skin to skin contact and with little things like babywearing when you get home.
Truth: You will feel so much guilt. You will feel guilty every time you leave your baby’s bedside. You will feel guilty that you gave birth too early. It’s normal to feel this way and it takes a long time to sort these feeling out so be gentle with yourself and take a break when things become overwhelming. Your baby needs a healthy momma more than he/she needs someone to be sitting by their side every minute of every day. This was very hard lesson for me to learn. I thought that being there every minute of every day would somehow make up for all the seemingly terrible things that happened and were happening to my baby. In the end, I finally could see that stepping away when I needed a break and taking care of myself ended up making me stronger.
Truth: Even though your baby needs to be in the NICU, it hurts so bad to not have her/him with you. Try to focus on little things that you can do to help experience parenthood and motherhood. Actively enlist the hospital staff to help accomplish this. Make it clear that you would like to help with your baby’s first bath, that you want to be the first to feed your baby, and the first to clothe your baby. Most NICUs will be happy to help make these things happen for you, but some need to be actively reminded that you’d like to participate in these traditional parenting activities. Make a list of cute preemie pictures to take. This a simple and normal act of parenting that is a wonderful break from the stress of NICU life.
Truth: I am saving the most uncomfortable one for last…Not every baby gets to go home from the NICU. As you may have already learned when your birth went woefully awry, nothing is guaranteed. You will see things you’ll wish you could unsee. Parents losing hope, babies in pain, babies with no parents, and babies who lose their battle. Life will never seem more fragile nor more treasured than in the NICU. PTSD is not abnormal among parents who have spent a prolonged amount of time in the NICU with their baby. It’s important to get help when you get home. A good therapist, your OBGYN or a regular doctor are all professionals who can help you access resources for help.
As a NICU mom I can promise you this experience will make you one of the world’s strongest parents and it will someday soon be a distant memory. Nobody treasures their child’s first words, first steps, and all of life’s wonderfully ordinary moments like a NICU parent.
Stephanie had her first two babies at 36; a set of fraternal twin girls. Unfortunately one died shortly after birth. She had her second living child at age 38. After 17 years in marketing and graphic design she is now a stay at home mom to her special needs daughter and rainbow baby boy. Stephanie is also a writer, amatuer photographer, and lives on a small hobby farm in a rural area. She is committed to healing and living her life for her daughter in heaven, part of this process is helping other parents and spreading awareness through sharing her story and experiences.
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