7 things every parent of a preemie should know

Tommy's guest blog, 18/11/2016, by Sarah

At Tommy’s we know that having a premature baby can be extremely stressful, especially if you were not prepared for this possibility.

Aside from the extra anxiety or an early birth, babies born prematurely often need to be taken to the Neonatal Intensive Care Unit (NICU).

It can be hard for parents to go through a difficult birth and then no get the reward of a cuddle with their little one afterwards.

Blogger Sarah, who writes at Life and Lifting, gave birth to her baby girl Jess at just 26 weeks. Shortly after being born Jess was whisked away to the NICU where she had to stay several weeks.

After her experience with Jess, Sarah has written a blog to prepare parents of premature babies for what to expect from the Neonatal Unit and beyond.

Sarah’s pointers for parents of premature babies

1.       Your baby will look like an alien and you probably won’t get to hold him/her after delivery

‘Jess weighed 840 grams. That’s 1lb 14oz. She is a ‘sugar bag’ baby. The only part of going through labour that makes any of it fun is that you get a baby at the end…Instead you get the same amount of pain with no reward. Jess was given 90 seconds in the room with me after she was delivered and then she was gone. I had no idea if she was alive, and I waited nearly 3 weeks for my first cuddle. She also looked like an alien, but a perfectly formed one.’

You can read our information about the first few days with your premature baby here

2.        When you leave you will know every single medical term that you never even knew existed

‘Think words like ‘Intracranial Hemorrhage’,’Apnea’ and ‘Nasogastric Tube’. These words will roll off your tongue like you were born to speak them, and I suppose in a way you were. You shouldn’t know them but you do, so try and absorb everything you hear. It will come of benefit at some point.’

You can read our explanations of some of these conditions here

3.        You’ll still have sleepless nights

‘Welcome to the world of expressing. About 5 minutes after you’ve had your baby you will be instructed that you need to express. And that will continue as if you were feeding that baby yourself until you can in fact feed your baby. So every 3-4 hours to be exact. Even during the night. Unfortunately having a preemie doesn’t mean the sleepless nights get delayed until they get home.’

You can read our advice about feeding your premature baby here

4.       They will get ill a lot more than normal babies

‘Normal under 2’s get around 12 illnesses a year on average, so one a month. You can likely double that with your preemie. They are more likely to have respiratory issues and the like until they are around 5. They will grow out of it, unless there is an actual medical issue, but prepare for a pretty bumpy ride before they do. Your baby will pick up everything going and then some, they are so busy trying to just be alive that they aren’t really trying to fend off bugs. But they are strong and resilient and they’ll be ok.’

You can read our information about health problems and disability here

5.       They might not meet their milestones with their peers do

‘I was reminded this week that she’s not quite the same as other 2.5 year olds. Namely when my friends 2.5 year old announced “I’m 2.5 too”. Well now. I’m happy that that cute little blonde boy knows how old he is. My wee girl on the other hand has NO idea of how old she is. She doesn’t have the capacity for that sort of dialogue and unless my questions are related to Paw Patrol or food she doesn’t care. But she can count to 20, and she’s even pooped in the bath, so I reckon she’s getting there in her own time.’

You can read our information about your child’s growth and development here

6.       You’ll spend a lot of time wondering – how?

‘I look at her sometimes, and wonder just how is she here? How is she perfect and just…how? My brain can’t quite compute how something so small survived, it shouldn’t happen. I remember so so vividly what she looked like when she was born, she was tiny. She was grey, she was transparent and she would’ve sat in my hand. The very fact she can even demand to watch Paw Patrol naked is fine by me. She can do whatever the hell she wants as far as I’m concerned. I don’t care if she never learns how old she is, she is here and she is alive and she is healthy. And that is enough.’

You can read our tips for adjusting to life with your premature baby here

7.       You won’t ever forget

‘There will be nights that you wake up hearing the beeps from the machines. There will be nights you wake up in a cold sweat that something will happen to them. There will be days that you stand outside the hospital a little longer than you need to because you just can’t force yourself to walk into that unit again. That’s ok. The experience of having a preemie or a micro-preemie is life changing, utterly life altering. Let it change you, don’t ever forget.’

You can read our advice on looking after yourself after premature birth here.

You do not have to struggle with the emotional or the practical side of premature birth alone. Communicate with the health professionals around you and ask for help where you need it.

As Sarah says from her own first-hand experience of this rollercoaster,

‘Having a premature baby is hard. You have to place your trust in complete strangers to look after your baby, to know exactly what to do and when to keep your baby alive. But believe me, those doctors and nurses will become your angels and your heroes. They already know what to do, so while you’re in that Unit you do whatever you need to to survive. Because all too soon, that tiny little scrap of a human is going to come home. And that’s when the real fun begins.’

Time in the neonatal unit can be draining and emotional. It is easy to forget about yourself when you are focusing on your baby but it is important to look after yourself. You can read our practical tips for surviving the baby unit here.

Tommy’s have launched a new free app for parents of premature babies. It will help you track your baby’s development and connect with other parents in similar situations amongst other things. If you want to find out more and get the app you can do so here.

If you enjoyed Sarah’s tips or found them useful you can read her original blog post here.