Tommy’s guest blog by Nicole
When Nicole and her boyfriend went into their routine check-up at 28 weeks they had no idea that they would be parents by midnight.
Once in hospital, Nicole was diagnosed with pre-eclampsia and taken to surgery for an emergency C-section.
‘Being wheeled into a surgical theatre is surreal; I will never forget how it looked or the smell. Even to this day when I go to hospital the smell almost knocks me off my feet and my palms begin to get clammy.’
After the procedure, Nicole was on bed rest for three days. She was bought photographs of her baby girl Olivia, born weighing just 1lb 15oz.
Olivia’s health was extremely up and down over the 3 months she was in the hospital.
At 35 days old her bowel became septic and she had to have emergency surgery which left her with an ileostomy for several months.
A routine MRI scan also discovered that Olivia had suffered irreversible brain damage which would result in Cerebral palsy of unknown severity.
44 days later, however, weighing just over 5lbs, Olivia was discharged from the hospital.
‘We were ready to go home. 3 months watching the amazing NHS staff save our little girl, we were ready to be a family. I almost ran out of the NICU nursery.’
Olivia was later diagnosed with epilepsy which progressed to tonic colic seizures, a seizure that involves muscle stiffening, jerking and often loss of consciousness For Olivia, these seizures occurred when she was conscious and were very traumatic for both her and Nicole.
‘Trying to find medication to successfully control epilepsy is more complicated than you can ever imagine, Olivia currently needs 2 different anticonvulsants which took 8 months to find balance & control.’
Olivia’s epilepsy is now under control, however, and she has been seizure-free for over a year.
‘Almost 4 years, 3 surgeries, numerous hospital stays, countless medications we know we are far from living a stress free life. We live in the unknown, this makes it extremely difficult to plan ahead. Our life revolves around Olivia and her health.’
Nicole began blogging to raise awareness of preterm birth and the disabilities that Olivia has gone on to suffer.
Looking back on her early days in NICU, Nicole says that whilst the experience was difficult, she feels she has a lot to feel lucky about.
‘NICU wasn’t a pleasant experience however our daughter is alive and for that, I am eternally grateful. Looking at my four-year old I’m hardly able to recognise the fragile baby in the photos, hardly able to picture her as the child of those memories.’
Olivia currently has physiotherapy four times a month, does daily stretches and attends occupational therapy three times a week. She has sensory support three times per week and also goes to speech therapy every six weeks.
Nicole has also used her blog to talk about the lasting psychological effect of NICU on her own mental health.
‘Olivia suffers with physical lasting effects of NICU and I suffer mentally. As far as I’m aware NICU-PTSD isn’t an actual “thing”, yet I can experience symptoms of post-traumatic stress disorder before entering a hospital.’
Despite the difficulties they have faced, Nicole says that she and Olivia will wear the fact that she is a post NICU mum, and Olivia is ‘an ex preemie’ as a badge of honour.
If you have been affected by anything in this article and want more information on premature birth and disability, you can read our page on health problems here.
Premature birth and caring for your premature baby can be difficult and overwhelming at times. If you ever need someone to talk to or could do with any extra support, our midwives are on hand from 9 – 5, Monday – Friday on our free phone line 0800 0147 800.
You can also download our free prematurity app to help you keep a track of your babies’ development and connect with parents in similar situations. Please do not feel you have to cope on your own.
If you want to read more from Nicole and follow her journey you can take a look at her blog, Liv & Phea.