This is a post I’ve considered writing for a long time. It’s been a couple years since my 12 week NICU experience and the following months of feeding tube drama, yet I’ll be honest, some of the wounds still haven’t healed.

In truth my daughter had very little going on with her compared to all the itty bitty ones around her. She entered the NICU only five weeks premature, and a whole four pounds two ounces. Both of those stats need to be reached before other babies are released from the NICU, my girl was already there, yet she stayed in the hospital a whole three months!

Longest three months of my life.

Looking back, there are a few things I wish someone had said to me, a few things I would tell any woman in a similar position. Some of them were hinted at, maybe even someone said them and I didn’t hear it. Still, these are the seven things I wish someone had said to me during that time.

1. Super Mom Does Not Exist.

When you are a NICU Mom, your life revolves around two things: feeding time and your pumping schedule. Feeding time for baby comes every few hours, and depending on how baby is doing will include things like diaper changes, trying to get them to breast feed, or to bottle feed, and supplementing with a feeding tube, or maybe even just holding them while they are on the feeding tube. So much of the time the Nurses are telling you that baby needs to sleep and rest and grow, so feeding time is pretty darn special.

Now you’ll start hearing whispers about the moms who are there for EVERY feeding time. Morning and night. They are handing in bucket loads of pumped milk, getting their baby on the breast as much as possible, and pretty much don’t ever need sleep. You hear about them and feel pressured. You’re only there for 2-4 feeds a day, generally less than more. You HATE the pump because it seems like you are spending more time with IT than baby. You’re exhausted, emotionally deadened, and you pretty much feel like a failure.

Let me tell you something about Super Mom. She doesn’t exist. I promise she doesn’t exist. Oh I know you hear about her, but I’m telling you that if there is a mom pulling this schedule, she will NOT be able to keep it up long. She WILL make herself sick. She’s dead on her feet, barely getting by, and feels just as much the failure that you do.

2. It’s Ok To Cry.

Your baby is in the hospital. Of course it is ok to cry. But inevitably instead of someone coming up to you and wrapping you in their arms and saying “cry!” what you get is a pack of people telling you that your emotional distress is bothering baby. Heart monitor machines go off and a nurse politely tells you to leave the room, your emotional distress is hurting your child.

You know what? Ok, go out in the hall if you need to, and then you cry. Wail. Moan. Beat the walls! You’re being robbed of so much! When others recount those first precious weeks with their newborn you will forever feel a pang in your heart. I remember being asked how well my girl slept at night as a newborn by a new mom, I couldn’t answer! I didn’t know! I wasn’t there!

The world you are living in is terrifying. And rightly so. I remember walking in for a feeding time when my girl was just about a day old and finding her swarmed with nurses, machines going off, I had no idea what was happening. The next couple days were full of words like “high heart rate” and “possible heart defect” until they finally found a thyroid issue and had it under control. But that moment of terror will never leave me. And I was told to leave, I was to upset.

It hurts like a hot blade to be told that your emotional distress is hurting your baby. But you know what? You are not going to be able to get through this if you bottle it in. So get away for a few minutes if you need to, but don’t feel bad that you need to cry. This is not your fault.

Which brings me to my third point.

3. This Is Not Your Fault.

I know what you’re thinking. You’re thinking that it was your body that hurt your baby, being in your body hurt your baby. You’re thinking that if you had just done something different maybe it wouldn’t be this way. Maybe you’re thinking you didn’t pray enough. Maybe you’re thinking if you made different choices earlier in your life. Maybe you’re even thinking you should never have done something so selfish as to ask this child to grow inside your body.

I know what you’re thinking, because I’ve been there.

Every problem my girl had was directly related to what my body did to her. I have multiple medical issues and my doctors were completely freaked out that I tried to have a baby at all. During the pregnancy I apparently developed Graves Disease, a Thyroid Autoimmune issue. When you’re pregnant your immune system is your babies immune system. My immune system damaged her. My immune system caused Neonatal Graves Disease in her. She was born underweight, skin and bones really, to weak to eat for herself, with a heart-rate spiking as if she were a drug baby going through withdrawals! And it was MY body that did this to her.

But the thing is, this wasn’t my fault. I didn’t ask to developed Graves Disease during pregnancy, and in spite of the fact that I already had another autoimmune condition there was really no way to anticipate that I would. Furthermore, my having this child was not a selfish choice, but a selfless one. I willingly risked my life to carry her. She wouldn’t have existed any other way, and she was completely worth the risk.

I don’t know why your baby is in the NICU, but unless you did something intentionally to harm your baby, I can assure you, this is not your fault.

4. You Are A Hormone Crazed Maniac, And That Is Perfectly Ok.

You have hormones coming out your ears right now. The world might seem to be expecting you to be a stable adult who can handle these punches, but in reality you are working from a deck that is stacked against you. You are in a situation that would stress out and overwhelm anyone, and you’re dealing with it with hormone levels that don’t know what hit them! Your body was getting you ready to bond with a baby that you had to leave at the hospital, and it isn’t happy about that. You were supposed to be nursing a child at your breast, not a pump. You are feeling riddled with guilt and anxiety over everything I’ve talked about here, and you might even know you shouldn’t feel this way, but you can’t seem to stop!

That’s ok.

Because your hormonal state is not your fault either. Be patient and forgiving of yourself right now. Allow the feelings to come up, overwhelm you, and then let them recede. You might have to do that a lot. But never punish yourself for that. This is reality, and it sucks right now, but it won’t last forever.

5. This Really Will Pass.

Every day seems like forever. You can’t remember a time before, you can’t imagine a time after. Your whole existence is wrapped up in getting to the hospital day by day. Everything else in life isn’t just secondary, it just doesn’t exist. This is life, this is reality. And it seems like it will never end.

But there will be an end. One day you’ll exit those doors for the last time. Hopefully, and more than likely depending on your situation, your baby will be with you. One day you’ll go home, and life will move forward, and this will be a memory.

So make memories!

Don’t let holidays go by without celebration. Remember to get baby foot prints and lots of pictures. One day you’ll barely be able to believe that they were ever so small.

6. Trust Your Mommy Instincts.

I know you feel like you have no say in what is going on with your child right now. Especially if you are a new mom. But let me assure you, just because the doctors know a lot, doesn’t mean they know everything! My daughter was there so long that she wanted to sleep through the night, but they wouldn’t let her because policy needed them to feed her every few hours. I had to stand up for her then, and I wish I’d stood up for her more. I felt so unsure of myself, but as time went by most of what I’d thought then, turned out to be true, and in the end it was me, not doctor policy, that got her off her feeding tube.

7. You Are Not Alone.

If you have a baby in the NICU right now, this is the biggest, most important thing I want you to know.

I’ve never experienced anything as isolating as having a child in the NICU. It steals your life, your experiences. People disappear, not able to handle what you are going through. Everything, and I do mean everything, falls by the wayside.

And even though I had support from my Mom and my Husband, and prayer from many, I’ve never felt so alone in my life.

People tell you to be your child’s advocate. But the cry deep inside yourself that you can’t even articulate is that YOU need an advocate. Every day more of you cracks and disappears and no one sees and no one knows and no one understands.

God understands.

Jesus is your advocate.

I promise you that every tear you’ve cried He has cried with you. I promise you that every rend of your heart has rent His heart too. Every grief has been observed.

I know you may not be able to feel Him right now, but He’s there.

One of the few things that brought relief to me during those long weeks was reading the Psalms.

I know you don’t feel like you have time, but make time, because if you’re going to get through this, you need to cling to Him.

And He will give you strength each day. No matter what happens.

Joy Aletheia Stevens