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Dear Preemie Parent

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November is Prematurity Awareness Month, something I had no idea even existed until I had a preemie of my own. As monotonous as it may be, I like to utilize this opportunity, year after year, to drop facts about prematurity, share pictures of my once 3-pound infant and request donations to Children’s Hospitals and organizations that support families with premature babies.

This year, I thought I’d do something a little different. It’s been over 4 years and I’d be lying if I said I didn’t still feel a twinge of pain in my heart when I reflect on our time in the NICU. It’s not something you ever “get over,” but as time goes on, your pain can turn into gratitude. Your heartache and unnecessary guilt can morph into appreciation.

I vividly remember all those hours spent in the NICU — hours that turned into days, days that turned into weeks and weeks that turned into months. I remember spending so much time feverishly searching the internet for others who had been in a similar situation. I needed a connection. I wanted to find someone else with a 29-weeker. I wanted to know their story and even more so, I wanted to know the outcome.

I wanted someone to validate my feelings of loneliness and despair, heartache and joy. I wanted to know my son was going to be OK. What I found, over and over again, were letters. Open letters to preemie parents. Letters that provided me with comfort and sometimes, fear. Letters that made me feel not so alone.

Now, four years later, it’s my turn to provide a letter of my own.

Dear Preemie Parent,

First of all, congratulations! You’ve created a beautiful, tiny human. You may not feel much like celebrating, but growing a human being is quite an accomplishment, regardless of whether or not you made it to full term; you should be proud of yourself.

I’m not sure how you ended up here. I don’t know if you had preeclampsia, suffered preterm premature rupture of membranes or if it was something else altogether that landed your baby in the NICU… but I imagine your heart aches. You’re probably feeling emotional and terrified. While it’s important to recognize that each NICU journey is unique, I want you to know you are not alone. Whether you’re currently in the trenches of the NICU or you’re a veteran preemie parent who still struggles with NICU PTSD, I see you. I see you struggling to hold it together. I remember how hard it was and I know how hard it still is, 4 years later.

I can’t predict the future. I don’t know what long-term complications, if any, will come from your baby (or babies) entering this world far earlier they were supposed to. I don’t have a crystal ball and I’m sorry for that. I can’t tell you everything will be OK, but what I can tell you with 100 percent certainty is that you are amazing. You are sitting next to that isolette day in and day out, watching your preemie learn how to breathe on his own. You are learning the As and Bs of prematurity, and desperately trying to keep up with the medical jargon when the Neonatalogist makes his rounds. You are diving in and handling her cares as delicately as possible, because that, aside from your 20-30 minutes of Kangaroo care per day, is the only thing that can actually make you feel like her parent. You’ve seen your baby turn blue dozens, if not hundreds of times and you hear the beeps and alarms while you sleep. You celebrate milestones that parents of full term babies don’t even know exist. You whisper these three monumental words of encouragement, “suck, swallow, breathe,” to your little one while you attempt to bottle feed, hoping this will be the time it clicks. You spend more time inside the four walls of his hospital room than you do anywhere else, and you often go days without a shower or natural sunlight. You are tired, you are scared and you might smell like maple syrup from all the Fenugreek you’ve been taking. You are in complete awe as you watch your 3-pound baby fight like hell. You are proud. You are realizing you are far stronger than you’ve ever given yourself credit for. You are madly in love with and inspired by your NICU warrior. There is nothing you did to cause this. You are an amazing parent.

Situations like these are hard, and some people just aren’t naturally equipped to face this kind of trauma. With that said, don’t be surprised if people in your life start to back away and just watch everything unfold from afar. It’s natural — people are uncomfortable with discomfort. Also, people will, undoubtedly, say things that will piss you off. It’s hard, I know. You feel like you’re constantly defending your newly acquired germaphobia and you’re tired of explaining to people they can’t visit if they’ve been sick — after all, this should be common sense. People will also surprise you. You might get a message from a high school friend offering their support, you’ll see a side of your partner or spouse that you’ve never seen, and you will fall in love with him or her all over again. You will slowly begin to build your tribe. Your relationships with people will change, and that’s OK.

You might feel incredibly lonely, but please know, you are not alone. It might feel impossible to look beyond the doors of the hospital room you’ve spent so much time in, but please try. Look around you. You are surrounded by others who are on their own NICU journey. Find the courage to strike up a conversation with the mom across the hall. Invite her to walk with you to the cafeteria to refill your cup of coffee. Don’t be afraid to have a conversation that doesn’t involve your current situation and don’t feel guilty about going home for a night to sleep in your own bed. Your baby needs you to take care of you, too. Lean on your NICU nurse in your moments of weakness, and in the off-chance you make it home for an evening, don’t feel bad for calling her every 30 minutes. She knows. She understands. And she doesn’t care, I promise.

I don’t know what your exact journey looks like, but I do know it will always be a part of you. You will always be a preemie parent, and you are a better person because of it. You will learn more about yourself than you ever thought possible, and you will most likely always be a germaphobe. You are amazing; your NICU warrior is amazing. You will all get through this one hour, one day, one week at a time. You’ve got this.

So much love,

A fellow preemie mom

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Originally published: November 15, 2017
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