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I’d never heard the word NICU before, I’d never seen the word neonatal, and I luckily had never stepped foot on a ICU ward before... but soon all of this became our whole world. Little did we know once our baby boy came along would we be spending the first five weeks of our son’s life living in a hospital. We were not only learning how to be parents and be a family, but also how to hold him with all the wires attached, learning what all the different beeps and machines meant, learning the rota of the consultants and surgeons so you ensure you don’t miss them on the rounds and learning the new life saving medical procedures we would need to perform on our son every single day.
It was in September 2017 that ‘Jacob the Brave’ was transferred to QMC Neonatal ICU, and it was here that we met ‘Super George’.
Jacob was admitted to NICU due to a rare condition called Hirschsprungs Disease, along with this we also found out postnatally that he also has Trisomy 21 Down Syndrome and 3 congenital heart defects.
This was a whole rollercoaster of emotions. Everything was a shock. We knew nothing of any of his diagnosis’s before his birth. Processing all of this information was challenging, even more so when you’re running off very little sleep, constant panic and worry and not to mention all the post birth hormones.
There are several times during our stay that the Super George room would have benefited our family. Firstly when we were given the genetic confirmation of Down Syndrome. We were following consultants around the corridors until we found an empty room to sit in so the news could be delivered.
We also were learning how to perform rectal washouts on our son, on the ward, alongside everybody else. Alongside all other parents, babies and families. Sideways glances of curiosity, muted smiles and nods from other parents which echoed the feelings of “we’re in this together, I’m sorry you’re going through this too, this is hard isn’t it.”
We were being taught how to insert a NG feeding tube into our son in his incubator, and practicing on him. This was neither pleasant for him or me. Having a manakin to practice on would have made the first experience a little less traumatic for myself and my baby. As much as I didn’t want to do it, I think I would have felt a little more comfortable and confident if I had been able to practice on a doll, instead of my fragile precious boy.
Super George’s room will help so many families in the most amazing hospital. And it will make a difference to the nurses and consultants teaching families these new complex skills.
Thank you to all the staff at QMC for saving Jacobs life.
Thank you everyone reading this for helping make the Super George Room a reality. Every penny really will make a difference.