Considering the tone of my blog so far, you would be forgiven for thinking that NICU is a sad, sad, traumatising place-and it can be! BUT every single person that works in that neonatal intensive care unit want you to win. They want you to take your baby home. They want your baby to be a fat healthy normal baby. They want your NICU journey to be as easy breezy as possible. Trust me when I say they have got your back.
Because of this want for you, every single little win is celebrated with you. These are those NICU little wins. I never thought an intensive care unit could be so celebratory to be honest! Every gram your baby puts on everyone does a happy dance. Every time your baby progresses to a new breathing machine it’s a happy dance. Every time your baby passes an eye test with flying colours, every time your baby comes off a medication, the first time you can actually put clothes on your baby, your first hold with your baby, when your baby graduates to an open cot its happy dance, happy dance, HAPPY DANCE. I mean what intensive care unit celebrates your one hundred day stay? In most cases that would be a very sad affair but in NICU that’s amazing! One hundred days! Your baby LIVED for one hundred days!!! Your one hundred days closer to GOING HOME!! On our one hundredth day, they gave us a cake, we got certificates, I put balloons on the boy’s cot and when we walked in that day the nurses on duty clapped and cheered for us. It was beautiful. I could truly see light at the end of our tunnel.
Now you may have heard me talk about the NICU rollercoaster, for every win you have there can be two, three sometimes even ten steps back. That rollercoaster can be truly terrifying and disheartening. But take comfort in that one step forward. Any step, no matter how little is positive. With Olive, I have to be honest, she didn’t take any steps forward, not even during the “honeymoon” phase. This is when the babies get a rush of hormones post birth that help them stabilise in the beginning, before the real rollercoaster begins. It’s what made our decision to pull life support feel right. With the boys, they had a honeymoon phase. They slowly, slowly, had their little wins. YES those kids had some horrible setbacks. BUT for every set back there was that tiny win.
On day seventeen of the boys stay, Atti had stabilised enough that I actually got to hold him. I was sooooo scared! He felt so tiny, so brittle, there were so many chords, what if I knocked his breathing machine off? What if I dropped him??!
The day Atti got to wear an outfit for the first time I was so excited! I rushed home and went through the hand me downs we had been given. I chose the smallest one I could find, and was so disheartened when it was a giant sack on him! Another mum in NICU told me about preemie clothing. I had never heard of such a thing!! Someone makes clothes for these teeny tiny babies?! She kindly gave me some of her twenty-three weeker’s hand me downs and they fit! Still a bit big but not a sack!
The nurses and doctors who work in NICU are true hero’s. It’s beautiful how they celebrate with you, comfort you and support you. When you have a micro preemie you really get to know the staff as you are in there for such a long time! We had nurses who would go above and beyond for us.
So I want to say THANK YOU to all the staff in our NICU. Thank you for supporting our babies as they fought for their lives, thank you for helping us through the decision to pull Olive off life support, thank you for keeping us informed every step of the way, thank you for explaining everything in plain English so we understood, thank you for pushing us to take control of our babies cares, thank you for being there for us through some of the darkest days of our lives, thank you for being so caring not only to our babies but also to us, thank you for distracting us with silly talk when we needed it, thank you for celebrating those little wins with us, thank you for what you do, you are all amazing humans who do such a special job- we are eternally grateful to you all.
Last but not least thank you for organising Heartfelt for us…. more on that in my next post.