What Nobody Tells You About NICU Life

The Neonatal Intensive Care Unit (NICU) is a place where newborns are taken to when they are in need of medical care. Some babies need life saving efforts, such as breathing support, others only need precautionary monitoring of sugar levels before going home in a few days.

Here, many doctors (neonatologists), nurses, and therapists work hand in hand to provide specialized care to these newborns.

 

A lot goes on in the walls of the NICU, and many different stories happen each day, some short, some long, but all are traumatic.

My daughter spent 148 days in the NICU after being born 3.5 months early. Here are the things that I wish someone told me.

You are about to experience some of the most unnatural motherly things (eg not being able to hold your baby when you want, not being able to feed your baby how you planned, etc).You will have to be OK with not having any control. It’s scary but the more you fight it, the harder it will be.

There are a lot of wires and tubes connected to your baby, and they are all connected to a machine that will beep A LOT. You are about to learn so many medical terms and you will have lots of questions. Bring a journal to not only write down your baby’s daily progress, but to write down questions that come to you throughout the day.

• You will be the most scared you will ever be and fear if your baby will live. Take it one

  day 

  hour at a time. Try to not focus on the unforeseen future.

You are going to see a lot of different things, babies with deformities, babies with their organs outside of their body, babies only weighing 1 pound, and even babies dying. This is going to be traumatic, whether it is your baby or not.

You are not going to like all of your nurses and you will have to advocate for your baby to have the best care. Find ones you do like and jive well with, and ask them to be one of your primary nurses. You will feel more at ease leaving your baby with them.

You are going to have to make very tough decisions. Some related to blood transfusions, surgeries, and what to give for nutrition. Ask questions, do your research, and trust yourself. Also know, whatever choice you decide, you made it with the best intentions and the knowledge you had at the moment.

You are going to feel extremely alone and isolated, even if you have a partner and/or family nearby. But, please please know, you are not. 1 out of 10 babies are born premature, this number jumps higher when you factor in other medical conditions that require NICU care.

You are going to feel anger and guilt at the world, and at yourself. This is a natural response. Acknowledge your emotions, and honor them.

You will have days where you don’t know if you can keep going. Remember it is OK to not be OK. Find ways to engage in self care here. Whether that’s taking a hot bath, going for a run, watching a movie, just do it.

You will lose all sense of time and feel helpless a lot. When you experience trauma, your mind and body react as if in survival mode, time isn’t important anymore. This is also a typical response to an untypical event.

Your relationship with the baby’s father is going to hit some hard times. Both of you are going through a lot. Allow yourselves space to do this, but also realize that you both could be a big asset to one another.

You are going to wonder how you will financially survive. And it will be a struggle to find the right choice for your family. Seek out resources with the hospital social worker. There may be medical programs your baby could qualify for that could lighten the financial burden.

You are going to question what you could have done differently so this never happened. Again, a very normal reaction. Our brains are wired to find the WHY. When we don’t have one, we look for anything that can explain it, usually that’s US. Know that this does not equate to actuality, but a grieving process.

You will feel defeated because your baby will make a step forward, and then take two steps back. And, it will happen in almost every aspect of their journey. Take a breath, take many. The NICU journey is a test of many things, patience, courage, endurance. Never is it a test of your worth. Don’t beat yourself up and don’t second guess your experience.

 

One thing is for certain, the NICU is filled with uncertainties. I will not say that it is a blessing, even though having access to this level of medical care is, but because sometimes stories do not end “happily”.

However, I will say this, whether you get to take your baby home or not, you are changed… forever. You witness the strength and courage of your little baby fighting to be here, and are overcome by this inexplicable love. Your heart is never the same. You develop this newfound appreciation for the little things in life and never, ever, take things for granted. Your precious baby did that–and that is what I take away from my 148-day NICU stint.