What They Don’t Tell You About The NICU

It’s been 4 months since my little baby came into this world. 4 months since I was being rushed back for an emergency c-section. 4 months since the doctors cheered after hearing your little cry. 4 months since you were taken out of the operating room and into the NICU before I could see you.

Just two days before that we were given a tour of the NICU. I remember feeling pretty calm and comfortable with the fact that that’s where my baby would be. The nurse showed us the different pods, told us what to expect, and explained what he would need to do in order to go home: breathe on his own, eat on his own, and gain weight.

Looking back now I realize that there were so many things that they didn’t tell us. That I wasn’t prepared for.

They don’t tell you that in just a couple of days that place will terrify you. It will become a second home you wish you never had.

They don’t tell you how absolutely depressing it is to be discharged. Packing your bags and being wheeled out of the hospital without your baby is enough to make you want to vomit.

They don’t tell you that you will feel this way EVERY TIME you leave that hospital without your baby.

They don’t tell you that just days after a c-section, the walk from the parking deck to the NICU will be the longest, most painful walk of your life.

They don’t tell you that holding your baby for the first time will be the best and worst moment of your life. You finally get to hold him – yay! But it’s not supposed to be this uncomfortable and terrifying.

They don’t tell you that your interstate anxiety will instantly become a thing of the past because nothing – rain, flooding, thunderstorms, and not even the Afton mountain fog – will keep you from seeing your baby.

They don’t tell you that you will blame the nurses and doctors. Your baby was having such a great day yesterday and now he’s back on oxygen and hooked up to IV’s. The medical staff must not be keeping a close enough eye on him.

They don’t tell you that you will dream about the NICU. You will hear beeping machines in your sleep.

They don’t tell you that you won’t feel like a mom. Someone else is taking care of your newborn. They are feeding him, changing him, and keeping him alive. What are you here for?

They don’t tell you that you will cuss the people in the parking deck and the ones walking slow in front of you because it’s 1:55 and if you’re not in the NICU at 2:00 they will feed your baby without you and that’s what you look forward to everyday.

They don’t tell you that you will pull into a rest stop on your way home to call and bitch at the nurse for not giving your constipated baby a glycerin yet. Obviously that’s way more important than what her other babies may be dealing with.

They don’t tell you that you will hate your significant other. He obviously doesn’t love your baby as much as you do. How dare he want to take a day off from visiting him to relax and get some things done around the house. He must not care.

They don’t tell you that your friends will piss you off and not even know it. How dare they have fun together and live a normal life when you feel like yours is falling apart.

They don’t tell you that you will keep these feelings bottled up. You know you’re being irrational.

They don’t tell you that you will become miserable to be around. You don’t want to have fun. You don’t want to tell your family members that your baby is having a “bad” day.

They don’t tell you that someone telling you that their coworkers sisters best friends baby was in the NICU and she’s 5 years old now and healthy as can be will NOT make you feel better. That’s not YOUR baby. YOUR baby may be different.

They don’t tell you that someone telling you to “take a day off” will piss you off. How are you supposed to take a day off when that’s your baby over there, in the hospital, an hour away?

They don’t tell you that you will make the trip to see him two times in one day because you got home and realized that you missed him and needed more cuddles.

They don’t tell you that even though he isn’t home yet, you still don’t get much sleep.

They don’t tell you that you will eventually become numb to the feeling of nurses rushing in when his oxygen and heart rate drops once again, causing a machine to alarm.

They don’t tell you that you will become an expert on NEC, chronic lung disease, and various other diseases that can affect preemies.

They don’t tell you that you will struggle. The money it takes to travel there adds up. You’ll take weeks off work because your baby needs you. You’re significant other will take FMLA when your baby isn’t doing good. You will understand what it means to be broke.

They don’t tell you that people will talk. He was probably born early because I worked out during my pregnancy, right? Or I must have been doing SOMETHING wrong to make him come early.

They don’t tell you that you will blame yourself. Even though you know there was no way to stop the preeclampsia, it was still your body that was the problem. And cutting back on sodium and drinking more water doesn’t touch a blood pressure that is 178/119.

They don’t tell you that you will go from ignoring every unknown caller to rushing to your phone at the sound of the first ring. Who knows, that number from Houston, Texas may be a doctor that just recently moved to VA.

They don’t tell you that your heart will race when your phone does ring. Is it UVA? Is it bad news? Is Grayson ok?

They don’t tell you that you will always have a terrible, awful, feeling that your baby will never come home with you.

They don’t tell you that you will learn to smile to hide your jealousy. You will try to hold back tears as yet another happy family walks out of the NICU with their baby, taking him home.

They don’t tell you that the first couple nights home with him will be absolutely terrifying. Is he breathing ok? It’s hard to tell without monitors on him.

They don’t tell you that you won’t remember much from that time frame. If it didn’t have to do with the NICU and your baby, it didn’t happen.

They don’t tell you that you won’t know fear until you see your baby being rushed BACK to UVA in an ambulance because his oxygen is low. All those tears you’ve held back for weeks will finally pour out.

They don’t tell you that your heart will stop and your soul will leave your body when you hear the doctors mention pneumonia. You know what that means for a baby that delicate and small.

They don’t tell you that your blood will boil when his 6-year-old brother tells his grandma that he’s big and healthy because he “got out of the hospital on time, unlike Grayson”. You let it slide and don’t say a word because he’s only 6 years old, you know he didn’t think of that on his own. 6 year olds don’t say things like that. Adults do.

They don’t tell you that you that people you don’t even know will send you their prayers. Friends and family members that you haven’t seen or spoken to in years will give you their support and love.

They don’t tell you that this whole experience will make you thankful. There will be a new meaning to life. Your baby fought for his life and won. He may be fragile but he’s STRONG.

Babies are born smaller and earlier than Grayson everyday. He was born with no life threatening health issues. He spent 53 days in the NICU. He’s one of the lucky ones.

Grayson James was born at 32 weeks gestational age at 2 lbs 13 oz. He’s now 4 months old and 9 lbs 3 oz. That’s something to be thankful for.

Credit: Morgan Leigh Propst