The Uncertainly of NICU – Joshua’s Story

My son Joshua was born at 28 weeks, on Mother’s Day this year. 

It was a complete surprise! I had been suffering with pains a few days before but was assured that this was just Braxton Hicks. Then in the early hours of the morning of 6th March I woke up bleeding heavily. We raced to the hospital with just my maternity notes and were told I was already 3cm dilated and that the baby would be born very soon. I had suffered a placental abruption.

My husband and I could not believe it and I was in complete denial, truly believing I would surely be sent home soon and told to rest. But sure enough, 5 hours later he came. He weight 3 pounds. I had been given steroids to help his lungs develop but given the speed of delivery there was not much time for them to take effect. Joshua had to be resuscitated at birth as his lungs were so under developed. The transport team arrived very quickly to take him to a higher tier hospital and there begun a 7 week stay in hospital for us. 


The first 24 hours were probably the hardest. No one was willing or able to give us any assurance that Joshua would be ok. I felt incredibly guilty and stupid that I had not realised anything was wrong sooner. I tortured myself by going over every detail of the week before, trying to pin point a cause. I couldn’t accept that it was not my fault in some way. We also just didn’t know what to expect. Thankfully his first brain scan was clear and when they took him off the ventilator he was able to breath by himself with some high flow. He had a heart murmur but we were assured this would most likely close by itself. Finally we felt able to hope for a good outcome. We started to feel very lucky.
After 4 days we could finally hold him, it was magical. 

Joshua did very well during his time in NICU. He was even breathing in air by the time he got moved to SCBU. However, it was in SCBU that the usual bradicardia episodes and Apnea really begun. Some days his alarm would go off every 20 minutes. It really felt like he was going backwards. He was put back into oxygen and for a while it felt like every day it was turned up another notch and I couldn’t see an end to it. His weight was increasing and he had reached the hospital discharge guidelines of 35 weeks but he was still oxygen dependant. We were told he may go home on oxygen. 

I had been expressing milk for him and I wanted to breastfeed him when I got home. This was a challenge! Trying to convince a tiny baby who had been tube fed for 7 weeks to work for their food felt like an impossible task and it nearly broke me emotionally. However, with determination, perseverance and the help of an excellent SCBU nurse, who dedicated most of her entire shift to helping me, he finally started feeding. I was able to feed him for 7 months when I got home, until he decided food was far more exciting!

Thankfully, during the last week of our stay, Joshua decided he was not going to go home on oxygen and just stopped having Apnea’s one day. We were told this could happen, I just never imagined it actually would. Again, we felt so lucky and relieved. 


We had a great outcome with Joshua. Much better than we ever imagined at the start. He is a happy little 8 month old baby now, enjoying baby sensory, baby yoga and play groups. 

The first winter is hitting us hard. He is in about his 11th virus already. However, he never lets this get him down and always has a cheeky smile on his face. 

All of the staff in the 3 hospitals were exceptional. We had stays in st Peter’s Chertsy, William Harvey Ashford and QEQM Margate. They encouraged us to get involved with Joshua’s care as much as possible and this is what got us through the experience. In the first 24 hours I felt like a spare part – I didn’t think there was anything I could do for him and I was scared to get too attached. When I did start expressing milk, changing nappies, top and tailing and kangaroo care, I really felt like a mum to Joshua and that I was helping him in some way. 


A nurse told me during one of my most down days that I know my baby better than any doctor or nurse and that I can help by being his advocate and his voice. This was one of the best pieces of advice I have ever been given.


With thanks to Louise for sharing her story of premature birth – a true NICU ride of ups and downs!

If you have a story you’d like to share please email Catriona at smallestthings@yahoo.com 

Like what you’ve read? Would like to help us raise awareness of neonatal care and beyond? Then Please Share via the Facebook and Twitter links! 

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