I stumbled across my blog from when we had the twins the other night (lots of tears), but this post helped so many people when I first shared it that I thought I would share it again. It can be such a daunting and lonely time, its nice to know someone, somewhere can relate.
Bringing home a premature baby.
The entire time in the Nicu a preemie parent becomes fixated on that magic date. The date they heard at their first scan. The date everyone says to aim for. The due date. Wether you bring your baby home that day or not. You count down to it like its Christmas Day times a thousand. We did not bring Amie home that day, and that day was hard for multiple reasons. But we aimed for it nevertheless.
Bringing home your baby should be the happiest day, a magical time. And don't get me wrong the day you bring home your baby you could have lost ten times over, it is magical. It's a miracle. But it's also the single most scariest day of your life.
With it comes so many fears, responsibilities, duties and more.
With it comes a suitcase of medicines and syringes and timetables of when to administer them.
With it comes lists and lists of appointments and check ups. For some operation dates. Physio, respiratory, eye clinic, weight checks, dietician, ear nose and throat, rsv clinic, well being checks on both of you. The list is endless, those are just snippets of the reality. Week after week, day after day.
With it comes total FEAR! In the Nicu we become fixated on numbers, monitors, tiny weight gains, a night without apnea. Most people (like us) leave without a monitor, in total blindness of how their baby is coping. Are the ok, are they breathing, why do they look greyish, bluish. Why are they struggling to breathe. With it comes sleep problems for us, how can we relax?
For us, with it came oxygen. A huge noisy beast of a machine with a huge wire that we trip over daily. Horrible, heavy tanks that we have to drag everywhere we go. Horrible stickers that we have to battle to peel from our baby's face if they haven't already hauled them off in a rage. By now they are probably blue and I'm in a panic trying to get them back in her nose.
With it comes loneliness, this is the single most lonely time of my life. During the Nicu journey, people rally round. They help with the kids, offer you lifts. Help get things you need and be there for you. All waiting to share the excitement of your miracle coming home. Once they do come home, for them, they can breathe again. Normality resumes. It's not their fault. They can't see and hear the thoughts, anxieties and fears in your head.
They imagine newborn dreaminess, those lovely days and nights of cuddles and serenity. Not the absolute raging beast that came home with me. No word of a lie, this baby is crazy!
For them everything is now ok, nothing they can do and there you are, home, alone and scared.
With it comes house arrest, germ patrol and those 4 walls. Prison will send anyone insane. But I also got this screaming torture device sent home with me. I can't leave it and I can't take it out. What if it gets sick. So I sit, I stare, I wonder, I cry, I lose my mind.
With it comes the fears of development, milestones, the future, neurological issues. The fear never ends.
As they get older it will get better they say. Let me tell you, this now frustrated torture device is even harder than the newborn crying one. She now has strength, rage, more determination, her cry is louder. She does not let up!
With it comes those handful of people you now KNOW are true friends. The one who offers to help you out in whatever way. The one who texts to check on you most days. The one who cries to you about what happened. The fellow preemie mum who knows exactly how you feel. The person who is there 24/7, always a message away. The person who picks you up when you are down. The person who knows you need a break. I am lucky. I actually have these people in my life!
I know everything I've written above sounds awful and brutal and negative. But it's the harsh reality. I've written it to 1) get things out of my head and off my chest. 2) for the other preemie mums thinking its just them going through this. You are not alone. It feels that way, but you are not. Find other preemie mums. Find a friend willing to share this journey with you.
Things aren't all bad. I also brought home this amazing, strong, fiesty miracle that I know is going to rule the world one day. She is the strongest person I know!
She's taught me gratitude and acceptance, she's taught me to count my blessings and love everyday, no matter how hard it is.
She's given me this unbreakable bond that we are so lucky to have. One day she will know and understand how special she is. She's a true friend for life and one I thank God for every single day!
All of this changes you, forever. There is no way anyone can go through this and come out the same person. Nothing prepares you for it and there is no time frame on when it will stop. The not knowing in itself is enough sometimes to drive you insane.
But would I have it any other way? No I would not. I was given this journey for whatever reason. And here I am. Still here. Stronger, more determined and so grateful. I am who I am because of it and that's forever. There is no point fighting it, because I can't change it.
I've met people along the way that I will cherish for the rest of my life. This journey opened so many doors for me and for that I am thankful.
From one preemie mum to another. I'm here for you.