Caring for a baby is hard work, it’s absolutely exhausting! You are busy all day and possibly up all night. Changing nappies, feeding, bathing, changing clothes, getting them to take naps and keeping up to date with day to day jobs round the house. It feels never ending! I have come across a few people who have the misconception that looking after a premature baby is easy. I am here to share with anyone who will listen that this is not the case. There are additional needs of a premature baby after discharge!

A baby that is born early or that is too poorly to come home is in hospital and there is a team of medical professionals doing a lot for your child but you are included and encouraged to do as much of the cares as possible (nappy changes, tube feeds, cleaning your baby, changing the sheets in the incubator) and some of the decision making processes.

My little boy in his incubator
My little boy in his incubator

You still have a life outside of the hospital and suddenly you are having to factor in daily visits, sometimes multiple visits, to see your baby. Then there’s the logistics of how you are going to get to and from the hospital. Each visit usually ends up with a bag full of things needed for the day and at the end of the day a bag full of washing and things to come home. Although it’s a different experience, it also feels never ending!

Then you get the amazing news that your baby can go home!

Then you have a whole new to do list.

Babies that come home with health issues have can have a lot of additional needs. I didn’t realise the extent of the additional needs of a premature baby until I was home. With my son I had to administer 17 doses of medication throughout the day and night, I had to monitor his breathing and his heart rate. Initially I had a neonatal community nurse coming out every other day, this was then handed over to a special needs community nurse who made weekly visits. Other appointments I needed to get in the diary were health visitor visits, hospital appointments not to mention a few very unscheduled urgent hospital visits.

Full diary of appointments - an additional need of a premature baby
Full diary of appointments – an additional need of a premature baby

I didn’t know whether I was coming or going. If my son was sick I was questioning how much came up? Has he just lost the medicine I gave him, do I need to give him another dose? Is his breathing laboured? Or too quick? Is there a tracheal tug? What about his heart rate? Has he gone into SVT? What appointment is up next? Whose turn is it to visit the house next?

Then you have the housework, shopping and dog walking to do. Work want a call to catch up and a friend wants to visit too. There just aren’t enough hours in a day!!!

This is only my experience there are plenty of other babies out there with more complex needs than my son. Also more there are families with more complex situations for example with twins, one twin may be ready to go home sooner than the other.

So what’s helpful?

Well employers could keep calls to no more than 10 minutes and keep it to just how mum, dad and baby are doing. I wasn’t interested in a work related chat telling me what I would be working on when I came back or what was happening with projects that I had to abandon. I had far more pressing and urgent things to deal with.

Person working. Open laptop and mobile in hand. Photography credit: William Iven
Person working. Open laptop and mobile in hand. Photography credit: William Iven

If the appointments are too much in a short space of time let one of the visiting professionals know and they will help to rearrange the appointments. This can take so much pressure off.

Family and friends could offer company to any upcoming appointments, do a bit of shopping, take the dog out or even take any siblings out for a few hours even just a text to say hi and ask how things are going would be appreciated!