How it feels to see your baby on CPAP – Jo’s story

I gave birth to Louie at 31 weeks gestation after going into spontaneous labour. It all happened very quickly and was very traumatic but he arrived into the world weighing 4lbs and letting out a tremendous cry which I always remember was such a relief. I couldn’t even process what was going on but knew that whether I was ready or not, my baby was here.

When he was born, Louie was put into what looked like a plastic bag in an incubator. He was given a hat to wear and an oxygen mask. It still hurts me now that I was unable to hold him after his birth and I wish I had been allowed the immediate skin-to-skin contact to help our bond.

Little Louie was taken straight down to the NICU at Leister Royal Infirmary where he was immediately put onto CPAP to support his lungs. CPAP – or continuous positive airway pressure – helps keep your baby’s lungs inflated. Two tubes were placed into Louie’s nostrils and held in place with a mask.

I remember that the CPAP machine looked so scary and that Louie looked too tiny for the mask covering his face. Even though the nurses explained everything to me, I couldn’t fathom what I was seeing. Why did my tiny boy need such a huge machine attached to him to help him breathe? He looked like an alien because of the tubes wrapped around his face and sticking out of his tummy.

Louie was on and off CPAP for just over a week. The doctors decided to try him off CPAP a few days after he was born. Unfortunately he had to go back on to it because he would desat which meant there was not enough oxygen in his blood. I hated the word desat and we heard it time and time again as the medical team kept trying to take Louie off breathing support. Each day in NICU felt like a week and a week felt like a month so whenever our son had to go back onto CPAP it felt like we’d taken a huge step backwards.

I got to hold Louie for the first time when he three days old and still attached to the CPAP. He was tiny and covered in wires so I didn’t know where to put my hands. I was so worried about dislodging a tube but the nurses showed me what I needed to do. I performed kangaroo care and cried throughout. It was so nice to have him close to me again and it broke my heart when I had to put him back in his incubator.

I still struggled to get to grips with the look of the CPAP. The nurses told me to start thinking of it like a sleep apnea machine that was there to help Louie along. This really helped me to get in a better mind set and cope better with looking at the mask on his face. It was there to help, not hurt.

One morning, I got a call to say that Louie was being moved into another room. When I arrived, Louie looked totally different – he was wrapped in a blanket and didn’t have a CPAP machine on him! He was so cute and the nurses let me cuddle him for ages. It was simply wonderful to study every inch of his precious face.

Louie received a blood transfusion to help his haemoglobin levels. He began to look rosier in the cheeks and was coming on leaps and bounds. It wasn’t long before Louie was moved into the nursery – he was out of an incubator and finally wearing clothes. I remember thinking that Louie was finally looking like a baby should when they’re newborn.

Louie was transferred to another hospital because the space was needed at LRI and it seemed like he was close to coming home. Unfortunately, our road was longer than anticipated. Louie was still attached to a monitor and continued to desat regularly because of his reflux. Breastfeeding was a struggle and the doctors prescribed another blood transfusion after his haemoglobin levels dropped again. It was a real set back but the doctors reassured me that some premature babies just need a little more help than others – every baby is different after all.

We took Louie home when he was almost two months old. I struggled with being a mother without the support of our neonatal family at first but soon got to grips with it with help from my Health Visitor. Louie is 19 months old now and doing great.

I remember reading these stories on walls of the hospitals and online, looking for a light at the end of the tunnel. I can’t believe I’m now one of the parents on the other side. To all of you still in the NICU – you will get through this. It might not feel like it now but one day the sight of the CPAP and the sounds of the hospital will become a memory. Stay strong!

If you have been affected by any of the issues mentioned in this post and would like support, view our online support pages