“Dear micro preemie parent,
I just wanted to start this off by telling you how strong you are. You’re going to realize this unimaginable, divine strength within yourself and your child that is going to pull you through this.
The nights will be longer than the ones you anticipated yourself having with your new baby. Your first photo won’t be what you anticipated, either. Your ‘take home outfit’ won’t be your take home outfit. The worries will feel heavier than the ones you originally thought you’d have as a parent, especially if you’re a new parent. People probably won’t congratulate you in the way you had anticipated either; they will probably tell you how sorry they are that this happened to you…you’ll feel ashamed and sad they aren’t saying congratulations on the birth of your new, tiny baby. They don’t know what you’re going through – they honestly can’t even imagine.
The pain will be unbearable as you watch your tiny little baby fight for their life. Your heart will be in your throat every time your phone rings. You’ll never let your phone die, and it will never be on silent until this is all over. You’ll dread when the doctor makes a personal appearance to update you if it’s anytime outside of rounds. Rounds will be terrifying in the beginning. You’ll be signing papers for different things to save your child’s life, papers you never imagined signing when you dreamt about this child of yours, although nothing about this is ‘normal.’ You’ll find yourself asking them what is happening with your baby, and more often than not the answer nurses and doctors give you will be, ‘It’s normal for these tiny babies.’
The amount of love you feel for your child will be head on with the amount of fear that surrounds your child. Some days it won’t feel real, some days it might not feel like that’s actually your baby in there, because there’s no time to settle in the moment. It’s a slow marathon from the beginning to the end. You will wish so badly you could trade places. You will wish you could do something to take it all away, but you can’t. The only way to get through it is to go through it, so while you’re there, celebrate the small stuff. Celebrate the milestones. Celebrate the holidays. Your baby may not be home, but your baby is here! Celebrate an unassisted bowel movement; celebrate it all. Decorate your room! Your half a room, your corner…whatever it is, decorate it! Tape pictures on the wall. You’re going to stay a while. Trust me, I know.
I spent 5 months being told everything was just perfect until the moment it wasn’t anymore. My 25-week daughter was measuring behind at 22 weeks. She was struggling, she wasn’t receiving the proper nutrients to grow. My placenta was dying, essentially she was dying too. She wasn’t viable they told me, as she wasn’t yet over 1 pound. The odds hit me like a brick that day. I’d never cried so much in my life. I listened to the doctors tell me she wouldn’t make it. I listened to the odds stack up against my daughter. The one I had so many hopes and dreams for. The one that used to kick so rapidly inside me, but started to get tired. I listened to the doctors talk about quality of life for her if I chose to give her a chance. I listened to it all…I even swayed once towards what they had said, but I needed to walk away from the situation knowing I gave my child every chance to make it.
A few days later on December 13th, far from my due date of March 24th, my daughter was taken via C-section from her warm, safe haven that wasn’t protecting her like it should have. Just like your baby, she was put in an artificial womb made of plastic. She was tiny! She weighed 1 pound with her hat and her tubes. She came out with a loud screeching cry, a moment I’ll never forget as I lay there thinking this would be a quiet surgery. She didn’t require any resuscitation either. These are two things the doctors told me wouldn’t happen. They told me she wouldn’t come out crying and she would require resuscitation, possibly a few times. She didn’t; she came into this world with the fighting spirit required to be here.
She’s had to endure countless poking, prodding, IV’s, blood draws, blood transfusions, tubes down her throat, tubes down her nose, X-rays, medications, MRI’s, ultrasounds, brain scans, eye exams, glycerin tips, and other things I’m probably missing. She’s battled infections on infections. She’s had a spinal tap and she’s recently been diagnosed with stage 1 ROP. It’s terrifying to watch your child go through these things. It’s terrifying to see your baby with tubes coming out of their mouth and nose.
The tubes used to make me paralyzed with fear. Especially the CPAP mask. The lack of understanding would make me shiver at the thought of ever having a child that needed these. I didn’t ever look down on those children with them, in fact I truly sympathized, but I just didn’t understand. Now I look at them as an accomplishment. This intimidating mask strapped to her tiny head is a huge accomplishment. I realize these things probably look scary and different to those who have no experience.. Those who were just like me before this ever happened.
Some of my friends and family who look at pictures of my child and feel shocked, all the sounds…the high pressured spit bubbles. The thing strapped to her head. They probably wonder if she will always have this, if she will be ‘special’ because they probably don’t understand, either. My hope is when they see her pictures, when they see these tubes, when they silently and shockingly think, ‘Oh…my…gosh,’ I just hope they know what an accomplishment these are. I never anticipated having a child who needed these things, I don’t think anyone does. Please know these things aren’t scary if you don’t let them be, these things aren’t indefinite. These are steps towards the right direction, on a path that’s different than the one we walked. I had to let go of the worry of what people would think in the beginning of all of this.
I too was worried, I too had thoughts…I just let them all go. Because regardless of those, this is Milanah. My tiny, resilient, beautiful girl. I don’t know how she will be, but I know we are heading towards finding out. For that I am so thankful, because at one point I truly didn’t think I would get to find anything out about her. My hopes for her outweigh my fears for her, this is what guides me.
I’ve learned (and you will, too) the NICU is not for the weak. It’s not for the strong, either. It will break you down and have you crying on your knees. You’ll be reaching for any God available to listen, any good vibe the universe has, or positive thought you can grab onto. Arms wide open, just waiting for anything. It is a proverbial rollercoaster ride. The one that leaves you hanging upside down for a couple minutes before you drop and go back up the hill, only to drop again. The good days are good, but never long enough for you to really bask in. The bad days are downright awful. You will feel completely helpless and exhausted.
On the other side, you will witness miracles happening before your eyes. You’ll learn an entirely new vocabulary. By the end of this, you’ll know the names of multiple different medications and how they work. You’ll find yourself using medical terminology when you talk about your baby as if everyone knows what you’re talking about. The smallest human you’ve ever seen will show you their tiny body holds strength that is mountains high. Being a preemie parent is a title you’ll proudly keep for the rest of your life. It’s not a title I’d want to give anyone, but with it comes strength, grace, and a feisty little miracle who decided giving up wasn’t an option from their very first premature breath. It changes you as a person, it changes you as a parent.
One day, you’ll be sitting at home in your living room with your baby and it will all seem like a dream. You’ll miss the beeping, you’ll miss the comfort of the nurses, you’ll miss the doctors who you could tell really cared, you’ll miss the easy access to the sanitizer before you touch your baby, you’ll miss it all.
My wish for you is you find comfort in your child’s journey and you find peace in the chaos that is the NICU. That you let go of what you thought and embrace what it is. It’s this terrifying, messed up, magical experience that you’re bonded in together. It’s hard for others to even slightly imagine. It’s an experience that is handed out to only the strongest of people. Take care of yourself. All the love, strength, and Kleenex, from one micro preemie momma to another.”
This story was submitted to Love What Matters by Allanah Deanna. You can follow her journey on Instagram and Facebook. Submit your own story here, and sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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