World Prematurity Day takes place on the 17th November every year. It’s a day to help raise awareness of prematurity across the world, charities pick a theme to cover each year. This year the theme is “I wish I’d known”. We would love you to tell us what you wish you had known. In this blog we have covered ten things we wish we had known.

Lisa’s “I wish I’d known’s”

I didn’t know what resources were out there

My very first visit to the neonatal unit was late at night. Two nurses had a slight lull on their shift and realised that I still hadn’t seen my baby yet. It had been a long day. I was tired but so grateful that they took the time to take me up to the NICU. I was thrilled to be able to see my little boy. It was only for 10 minutes but I was so happy.

This visit I probably wouldn’t have appreciated being bombarded with lots of information. A good information pack might have been good for me to read whenever I had the head space to take some of it in. Or even an email with some useful links. I only knew that a neonatal unit was for sick babies, beyond that I had no clue.

Luckily I have a supportive family around me but those that didn’t must have felt extremely isolated. I only knew Facebook groups existed after I had left the neonatal unit. I knew Bliss was a charity, but I had no idea about the resources that they have. I’d assumed they raised money for medical research and not all the other resources they funded.

I wish I’d known how beneficial reading to a preemie is

Towards the end of my stay I found out about the benefits of reading to a premature baby. A nurse had strongly recommended reading to all the parents whose babies were in her care that day. I asked her why she was such an advocate for reading to our babies. She told me about a research paper she had read. I found the paper and found it fascinating. I’m a big reader so I didn’t need much of an excuse to read to my little boy.

Me reading to my little boy at 18 months old
Lisa reading to my little boy at 18 months old

The research showed that premature babies that were read to by their parents had improved oxygen saturation levels and improved heart rates. Babies responded to their parents’ voices as they were ones they recognised from being in the womb. Also the studies showed that compared to premature babies not read to the ones that were read to went on to have better communication skills a few years later. What’s not to love about all that?!

I didn’t know just how tough being on the NICU was going to be

I had no idea how difficult sitting next to an incubator was going to be. The emotional roller coaster was draining. I didn’t have to do anything but sit there and look at a tiny baby fight for his life. The inability to help or make him better was almost crippling some days.

You put on this brave face because you feel if it cracks your not sure you’ll be able to ever stop. I did break down a few times though and the emotional release was actually a relief.

It wasn’t always tough though. Some days there were those little break throughs that the nurses celebrated with you. It would feel like a little bit of that huge weight on my shoulders had been taken off. I’d walk a little taller and even had the makings of a smile on my face on those days.

I wish I’d known how hard it was going to be leaving my baby when I was discharged

My maternity ward stay was 5 days. A good friend was on there and she was looking after me. I asked how long I would be able to stay. She said at a push 7 days. On my way to the NICU later that morning I heard some members of staff talking about bed shortages. They were really struggling. I had been in my own little bubble so hadn’t noticed how full the ward was.

When my friend came to check on me later I said I was happy to be discharged and finish my recovery at home. I hadn’t really thought it through. I went home and it hit me on the drive home that my tummy was empty and that I didn’t have a baby in the car seat. Later I realised I was completely reliant on others to take me to the hospital until I had recovered from my c-section.

Black and white image of a woman crying. Photography credit: Cristian Newman
Black and white image of a woman crying. Photography credit: Cristian Newman

My husband and parents were amazing and took me several times a day. As soon as I was able to drive though I was in my car and heading to the hospital to see my baby boy.

I didn’t know the impact prematurity was going to have on our lives for the next few years

After 73 days of being on the neonatal unit we got the wonderful news that we could go home. The first few days were nerve wracking but also amazing. On day four my son went into respiratory arrest and we rushed back to the hospital where I got to experience the children’s ward for the first time.

I had heard many say that being a preemie parent doesn’t stop once you are discharged and I was beginning to see how true this was. We were in and out of the hospital for the next 18 months. My son turns 4 soon and he was only just fully discharged from all preemie related hospital appointments in September 2020.

We still have his speech to work on which is suspected to be linked to his premature birth. Otherwise he is a very happy and healthy 3 (nearly 4) year old!

Stacey’s “I wish I’d known’s”

I wish I’d known I still had a voice

He was still my baby and my opinions and decisions as his mum were important but I didn’t realise that at the time. I spent a lot of our NICU journey feeling like he wasn’t my baby, leaving decisions about his care to the doctors and nurses because I thought they knew what he needed best.

I was constantly asking permission before I did anything with my own child. Waiting until I was offered to hold him before I got that first cuddle because I wasn’t aware I could request it. Asking if I was allowed to touch him and kiss him and eventually do his cares. I wish I’d known that I had a voice that no matter how poorly he was I was still his mum and knew what was best for him!

I didn’t know that breastfeeding a preemie would be so different to feeding a term baby

It was so frustrating when the only thing that was delaying us coming home was establishing feeding but I was also being told I couldn’t feed my baby on demand. After having 3 other children I knew the only way to establish feeding was to put baby to the breast for every feed so I really struggled to understand why I couldn’t do this with my preemie meaning he still needed an NG tube for top ups.

Keagan: Premature baby successfully breastfeeding
Keagan: Premature baby successfully breastfeeding

After days of stress and upset, it was explained that preemies don’t have the fat stores like term babies that give them enough energy to feed, keep warm and also gain weight. Preemies often get very tired very quickly when feeding which means they are using a lot of energy from each feed just feeding. Therefore, they don’t always have enough to maintain their temperature and gain weight.

Knowing this earlier would have saved so much frustration. Establishing breastfeeding with a preemie is a much slower process but massively rewarding when you get there. I often questioned whether I was holding up our discharge by wanting to exclusively breastfeed. But I am so glad the neonatal nurses reassured me and I persevered. It was by far the best experience of our NICU journey.

I wish I’d known how petrified I’d be when my preemie came home

Having a baby that needs the care of the neonatal unit is scary. Taking your baby home without the reassurance from machines with alarms to tell you if your baby’s vitals are not right, without a nurse to run things past, no heated crib if you baby doesn’t maintain their temperature or an NG tube if they didn’t have a good feed is petrifying!

Keagan at home
Keagan at home

For days after Keagan’s discharge I sobbed. I was petrified I wasn’t going to be enough to keep him safe and we would end up back in hospital and separated again. Once we had been discharged I thought we could put the NICU experience behind us and enjoy having our family together. I wish I’d known how scary having a preemie home for the first time could be!

Did you see…

Our World Kindness Day blog? If not take a read. We are also going to put a little resource in the Facebook group for you, if you want to come join us then click here.