I was 5 weeks pregnant when I found out was expecting twins. So, by the time my waters broke at 32 weeks I had felt like id been pregnant forever and all I could think was “I’m going to meet my babies at last!” It never really occurred to me to be concerned that they were 8 weeks early, or that there would be huge implications for this both in terms of our physical and mental health as a new family.

My premature boys reunited at a week old

I was recently asked to be a guest speaker at a lovely support group for parents of premature babies where I shared my story and got to cuddle some gorgeous mini people. There, I chatted about the experiences of having your baby or babies execute their evacuation plan ahead of time and found some similarities in our experiences. Here today, with the help of some other parents, are seven things that parents of premature babies find really hard.

Having your new baby in the Special Care Baby Unit

Depending on how premature a baby is, new parents can be visiting their baby for days or weeks in the Special Care Baby Unit (SCBU) or Neonatal Intensive Care (NICU) My boys were 3lb 9oz and stayed in SCBU for 6 weeks. When I had recovered enough from my emergency c-section I had to leave my babies behind. I really identify with all of the experiences here.

My premature boys covered in wires in Special Care

My premature boys covered in wires in Special Care

Emma ~ Not being able to take my baby home was the hardest part for me. I had to stay in for a few days to be treated for an infection so I could easily pop into NICU to visit him. Once I was discharged it was heart breaking. Going home and leaving my baby behind is an awful feeling that I will never forget.

Anna ~ My twins were born at 34 weeks and spent 16 days in hospital. I spent 6 days in hospital and was never allowed the girls with me. They were very strict with routine and they had rules. I found it hard that I couldn’t do what I wanted with my babies and all I wanted to do was cuddle them. I feel that made it harder to build that bond straight with them away.

Jodie ~ I felt less in control than I had with my first baby. It was the nurses in SCBU that called the shots, told me if he was too hot or too cold or whether I could pick him up or cuddle him at any point. It took me a while to adjust to being the ‘mumboss’ when we finally came home!

Where so many parents find the rules and routines of SCBU restrictive and stifling, I worried about how I would cope when I had to take my still tiny babies home and wouldn’t have support 24/7. Lyndsay felt the same.

Lyndsay ~ I found leaving SCBU the hardest part. I had so much support there and at home I was on my own and didn’t really know what to do with myself.

Being with full term mums

Even though your baby has arrived early you inevitably are in a maternity unit with other mums and babies who have arrived exactly when they should. They will be sleeping next to their Mothers bed and usually go home within 24 hours (accompanied by balloons and congratulations cards) This can be so hard to watch as your baby sleeps in SCBU and the celebrations are on hold for when you finally go home. Being with full term mums also creates other issues.

Katie ~ My baby was 5 weeks early and 3 days after birth still in scbu. I went into the maternity kitchen to make breakfast and walked in to find 3 other new mums sat there with their babies. I looked around and just burst into tears and had to walk out. Luckily one of my lovely HCAs brought me breakfast and a hug. I think if it was possible a separate area for mums who don’t get to have their babies straight away but have to stay in would help a lot.

Lianne ~ Ben spent a week in NICU. I hated spending three nights in a labour ward where mums had their newborns next to them and guests coming in all happy when my little boy was in NICU and everyone came to see him there so I spent more time there rather in bed recuperating.

Not knowing the problems ahead

Again, depending on how premature a baby is when it arrives can often be related to the potential health problems as it grows. Sadly, many of these just aren’t known and many parents are painted a ‘worse case’ scenario to cover all eventualities and left with only hope in the meantime. I have written before about why I wouldn’t offer hope to a new parent of a baby with education or health needs. Read the blog to find out why (Im not being a bitch!)

Jade ~ We found it hard not being able to touch or hold our son. He had set care times and it was until he was stronger that we could hold him but even then it couldn’t be for too long. The constant not knowing if he was coming home on oxygen was also a killer. We had it all ordered for him (thankfully never needed it). I think it’s hard to pick out what was tough when there were so many daily struggles.

Nigel ~ I know I’m not a mum, but my twins girls were born at 33weeks weighing 2lb 11 ozs and 4lbs 3ozs.

One of most difficult things to deal with was never knowing what problems they would face on a daily basis.  Hours after being born my one twin girl was put on a ventilator. It was very scary and I just felt useless.

Taking babies out and about

The immune system is a very delicate thing and even though its natural to be a little protective of a new baby, when they are premature and their natural defence system isn’t as developed as you would like, you do fear the world ‘out there’ even more so. When my boys finally did come home I remember asking a family friend to wash his hands after he had been chain smoking a few cigarettes before heading over for a cuddle. His wife felt it was preposterous that I would ask and never forgave me. We don’t speak anymore.

Lynne~ I have had 3 premature babies a singleton at 31 weeks and twins at 32 weeks and I found their first winter hard. People expecting us to go to shopping centres and crowded spaces when we had been advised not to due to health risks.

The physical logistics

I feel fortunate that my boys were my first children. It was hard enough being separated from the boys but I cant imagine how I would have coped if I’d had another child at home as well like Laura had.

Laura ~ I had a 1, 2 and 10 year old at home who also needed me and I felt so torn as to where I needed to be. It was only 3 weeks but it was such a difficult and emotional time for us all.

But there are other logistics too, particularly when mum has had two or even three babies!

Deb ~ My twins were born 28 +6 weeks, weighing 2lb 12 and 2lb 13. My daughter was doing really well but my son wasn’t and needed surgery etc so he was in the intensive care section while my daughter was in the high dependency unit. I got to hold my daughter 48 hours after her birth but it was a week before I could hold him. That was heart breaking. Then having to walk in and choose who I went to first was probably the thing I found really difficult. It was so nice in the last few weeks having them both in the same room.

Si ~ Our triplets were 33w 3d . The toughest part for us was when we had one in one hospital, and two in another with Mum supplying the milk.

Follow the growth chart

The bane of my life once the boys came home was that bloody red book the health visitor brings along with her. The ‘typical baby bible’ which shows you exactly where the ‘normal population’ should be at any point in their life and a little chart which allows you to record their milestones as and when (or if) they hit them. As much as I hated to look at it, it ultimately became an obsession which cheered me up on the days when things were looking good and depressed and worried me on the days when the little dot that was plotted fell below when it should have been. Of course now, I realise that it didn’t matter in the grand scheme of things. Lyndsey had the same experience.

Lyndsey ~ I was forever following the chart to see how much my girl had grown (born 36+4 and 4lb 8oz). It took me quite a long time to stop comparing her size to other babies to same age and realised she’d catch up on her own eventually.

Comparing development with others

When your baby is at home with you, everything feels like its happening at the pace that is right for you and your baby. As soon as you get into the arena of ‘mummy groups’ or around other parents, the questions begin “Oh is she sitting up yet?” “Is he looking for you yet? Archibald has been doing that since he was 15 minutes old” (feck off) “Is she pushing up against you yet? Diamante is desperate to walk already!” *at 3 months old* This is torture and as far as I know, actually not that important. Never in my 23 years of working have I been asked “At what age were you potty trained?” to deem how suitable I was for a job and I don’t remember “age of first word” being a question on the online dating site I joined once. Once we walk and talk we generally just continue to do so and while I know these questions are often asked as part of general conversation, its really hard for a parent whose baby was premature.

Jenny ~ My son was born at 32 weeks and I it hard comparing him to other babies the same age when he wasn’t developmentally the same. It irons out when they’re about 2 but it was really difficult.

Lyndsay ~We eventually found some groups to go to but the leaders were always like “Oh she’s so tiny, can she do such and such yet” which didn’t help much.

Putting it into perspective

Despite our early starts and often traumatic beginnings, more often than not, life settles down, we move on from the pain of separations, the red book gets put away and we all accept that our children are the wonderful people they are because of, not in spite of their adventures and challenges. Not all parents are so fortunate.

Fran ~ Everything! Our little boy was born at 25 weeks so had so many stories of “so and so was born early and they’re 40 now and perfectly healthy now”. Oliver missed every single milestone and we realised sadly he’d never achieve them and we lost him aged 21 months. Poppy was then born at 34 weeks and was tiny for ages. She’s two next month and still in 12 to 18 month clothes! With her I have never cared about milestones or comparing. I’m just so thankful to have a happy and healthy baby!

Nikki ~ I found it hard that my premmie turned out not to be neuro typical but extremely medically complex, deaf blind and life limited. He ended up surviving until he was 10

I’m sure all of these parents will agree that however early their babies entrance is into the world, their time on the stage called life is incredibly precious and until interviewers or tinder start asking for the dates of our early milestones we should remember that its not actually that important and if the tale of the hare and the tortoise tells us anything its that slow and steady often wins the race.

Chat Soon

Charlie xxx

If you are the mum of a child with a diagnosis and/or additional needs and you would value hearing from another mum who truly ‘gets it’ and often says what you feel too nervous to admit (plus a great community!) then sign up to my newsletter now!