A year I will never forget, not just because I gave birth to my first child, but it was the year I became a NICU (Neonatal Intensive Care Unit) Mum.
Elijah was born with an undetected heart condition that would require surgery and had a neo natal stroke due to a bleed on the brain. Instead of bringing him home we were admitted to NICU and that’s where we spent the first 7 days of his life.
I didn’t want anyone to come and visit me, I didn’t want to remember this time. I did take photos and I look at them now three years later and they give me hope.
Hope that things can change, and they show how far we have come since those first 7 days.
It took me a very long time to feel like this.
Elijah had open heart surgery at 6 months old at Great Ormond Street and was discharged to recover at home after just 5 days. From then onwards he has gone from strength to strength.
He is a happy and healthy 3-year-old who has far too much energy, and knows far too much for his own good! Looking at him in the street you would not even bat an eyelid that he wasn’t a normal and healthy 3-year-old.
We have just been discharged from the hospital for 18 months, and have recently welcomed a new addition to the family.
I want to share our story because I want to give hope to those who are going through the NICU journey.
When we were in NICU I read story upon story and every one of the success stories gave me hope. I want to repay that in kind.
Deep in the trenches of NICU it may not feel like you can have much hope, that you do not dare be positive in case you jinx it.
The day is spent hoping you will hear those words over the flashing, beeping machines, ‘you are being discharged, you can go home’.
You may feel bitter, resentful, angry or guilty. Sometimes you don’t want to take the photo as you do not want to remember your time in NICU.
You must celebrate the small milestones, getting them dressed for the first time, seeing them move into a cot as these will get you through the dark times, the setbacks. You will never forget the feeling off putting them in the car seat for the first time to go home. It is indescribable.
Take photos, talk to everyone and anyone on these days. Keep a diary, one day you will be able to look at it again.
It can be hard to move on, being a NICU parent does not just stop because you not in hospital anymore.
You adjust to the fear, the worry and how to be a parent on your own whilst reliving the NICU time in your head over and over.
It can feel like you will never move past it, but one day at a time, each milestone that is achieved is one step further away from NICU.
Sometimes, it can hurt to remember what your baby went through, but the other times?
It gives you hope, and makes you truly thankful for what you have.
Please dare to hope, it can get better, we are proof of that.
One day you will be able to think of NICU as a positive experience that showed you how strong you and your baby really are.
From one NICU parent to another x
But, partner, I miss us.
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