NICU Survival Guide

So, your pregnancy didn’t end the way you wanted to. You may have had a sick baby full term or given birth to a preemie. Either way, you had to watch your baby get whisked off to the NICU. What is the NICU? Why do babies have to go?

The NICU stands for Neonatal Intensive Care Unit. It’s the unit where babies go when they are too sick to stay with their moms or go into the normal nursery. When you enter a NICU for the first time, you’re going to enter a whole new world. You will see babies of all sizes. Babies who were born too big and too small. The thing they all have in common, is that they are all too sick to go home.

When you’re dealing with a short term or long term NICU stay, you will be under a lot of stress. You will go home but baby will not be with you. You will enter a strange land that will come to feel like a second home by the time you are done. What is the NICU and how can you cope with having a baby in the NICU? Read on to learn.

Who am I to talk about NICU stays?

My baby was born 3 months premature and weighed only 1.5lbs. She was very sick and had 5 holes in her heart. After five months in one NICU we switched her to a more specialty NICU out of state where she lived for another four months before coming home. In all, we had 4 surgeries and almost 9 months in NICU. With all that time, I went out of state to stay at the hospital, where I stayed in the Ronald McDonald House but primarily slept in the hospital with my girl. I studied books about different conditions she was born with, what other babies could be born with and read every resource available. I was 23, so I was still young myself when she was born.

I attended many parental meetings and dinners, socialized with a lot of other families and ultimately found it depressing watching all the families come and go so fast. There were people there for two or three days, a couple weeks and even one or two months. Seeing all the new faces constantly and saying goodbye to people with babies graduating got to be too much and I stuck with two other moms- one who had an older baby and the other who’s baby was born the same day as mine. She and I ended up leaving on the same day and even ran into each other at a few follow ups.

The family nights are vital to keeping sane. They can also cause you to fall into a depression if you’re in it for the long term while other faces are new and getting ready to leave. To me, at first, they were vital to feeling like I wasn’t alone. By the end of the NICU stay, it caused me to fall and I had to stop going.

Family nights are set up to help families meet other families in NICU and to provide some joy in stressed out lives. It doesn’t matter how long you’re in the NICU, it’s stressful. I sent my healthy baby to the NICU just for a few hours to get an EKG to make sure she didn’t have heart defects like her sister and it was stressful, and she wasn’t a NICU baby.

Parent Nights

Many hospitals will have dinners, pizza nights and even family craft nights. The second hospital we sent our daughter to had a once a week meeting of parents where we could talk about our babies’ progress as well as life in general. Those meetings can be vital to give a sense of belonging to families struggling to understand things and handle the stress, but it can be a double edged sword. If your baby has been in the NICU longer than half a year and you are seeing the babies come and go with no real improvement with yours, it can grow from a sense of community to feeling depressed that your baby will never leave.

If you find yourself stuck in that boat, try to find the other parents who are in it for the long haul. Other parents with a longer than six month NICU stay can help you find that sense of community.

Self care

Self care is vital. You will need to learn about different medical issues your baby is dealing with as well as having tons of information swriling around you. You will need to know feeding schedules, you will likely have to pump some if you’re wanting to breastfeed and you will have to deal with your baby with all types of needles, tubes and pumps. With all that added stress, you need to take care of yourself.

I was given a self care package from a group of people when my baby was in NICU and one of my favorite things was a hand and nail scrub. They gave me stuff to do my own little spa days and those helped me feel more human.

Choose little things you can do to make you feel better. I took up jewelry making and loom knitting. Babies sleep a lot and you can’t always get your baby out of the crib on demand, so while she slept, I worked on making hats and earrings. Pick easy to move around crafts, if you’re the crafty type, and work on those. If you enjoy knitting or crocheting those are easy to move from one room to another.

Miscellaneous

Another thing you can do is start a page on social media or a group to follow your baby’s NICU journey. You can invite friends and family who are wondering about it and spend your free time bringing awareness to the condition(s) your baby is dealing with.

Find a new TV show to watch and make it a ritual to hold your baby while watching new episodes. My baby was in the NICU when the TV show Secret Circle came out. I made a habit of holding her while she napped and watching the show. It felt like a special bonding moment with her in the NICU.

I will never stress this enough, when you’re dealing with the isolation of having a sick baby in the NICU, you need to find a community. You need other people. You may search around online to find long term NICU support groups or you may even want to see if other long haulers in the hospital your baby is in want to get together. If you’re in it for the long run, it can and will be depressing seeing everyone come and go so if you find a community of others like you, you will have the chance to talk to other people who feel more like you do.

There are many ways to survive long-term NICU stays. You don’t have to do it alone the nurses will be there to help you understand your child’s condition and there are plenty of books you can get to help you understand.

If you have a preemie and have the “What to Expect” books, you likely can just toss them out- preemies tend to not go through the same milestones at the same times as full term babies and reading where your baby is supposed to be can just cause added stress to an already stressful time.

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