Babies are supposed to come along when we decide we’d like to be parents. They are supposed to cook for nine months; then come home perfectly healthy and ready to start life in their new family.

But sometimes that’s not how it actually plays out.

Our parenting journey began after four long years of heartache, then started much too soon in the Neonatal Intensive Care Unit. Babies are never easy, but sometimes they really are little pickles and have a few extra troubles. 

I don’t think the elation and joy I felt when my babies were born would have been any more intense even if they had arrived when they were supposed to, but it certainly wouldn’t have been tempered with quite as much worry and fear.

Whilst watching the blue ‘it’s a boy!’ balloons bob against the ceiling in my hospital room, I wasn’t just thinking: “wow, that was painful”, “what’s the deal with these giant knickers?”, and “did my boobs just grown three sizes overnight”. 

I was thinking “will my babies be blind and deaf?”, “will my babies walk and talk?”, “will my babies live?”.

Day by day those scarier questions were answered with good news, even so we endured a long, exhausting and stressful six week stay in hospital. An ordeal though it was, I know we are amongst the exceptionally lucky families.

It's always very hard to talk to friends and family about upsetting subjects, it's often uncharted territory for all parties. Although everyone always wants to do and say the right thing, sometimes well meaning questions or conversations can strike the wrong nerve.

Here's what we learned having our children in the NICU, I hope it might help you support a NICU parent you know, or help you figure out what to ask for if you're baby is in the hospital.

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Leaving the hospital without your baby is the worst feeling in the world

You may have visited the hospital during your pregnancy and seen proud parents carrying car seats packed with bundles of squashy joy, making their way to the exit, both aglow with anxious excitement. 

You may have smiled inwardly, knowing that that will be you in just a few months time, drawing smiles from strangers in the lobby as you squire your baby to his new home. 

What you probably didn't prepare for would be the sombre walk you'd make, your body raw and bleeding, feeling empty and unbelievably alone, toward the exit without your child. Your child who you are abandoning to the care of strangers, surrounded by sterile wires and stinging antiseptic smells. 

In time you will come to realise you are one of the lucky ones that will get to make that triumphant walk out of the main doors with your baby in your arms, but it doesn't make it any easier at that moment. 

Give new parents space when they return from the birth of their NICU baby, let them tell you what they need. Some may want to be surrounded by family, to be distracted and reassured. Some may want to hide and organise their grief for the journey ahead of them.

Bonding isn't a given

The birth experience many NICU mums go through often isn't what they expected or could prepared for. I went in for a routine monitoring appointment at 9am, was told to go to the hospital shortly afterwards, and became a mother at 5.21pm. 9 weeks before I was supposed to be.

My emergency C section saw me laid out on a table ,so flat I felt like I was upside down, my babies were quickly delivered (in the same minute!), bundled and taken to the NICU before I could hold them. A whirlwind of bloody foreheads and matted hair is all I remember in the moments after their delivery.

I wasn't able to hold J until many hours later, and E until the next day. The serene and maternal portrait of a plump baby nuzzling at my breast I imagined was no where to be seen.

Of course I wanted the best for my children, for them to have the care they needed as soon as possible to ensure they would be healthy, I wouldn't change what happened because I know it was essential to their survival- but it did seriously affect my bonding with them.

Bonding is not the same as loving. I loved those babies fiercely from the moment I saw them wiggling on a grainy black and white screen. But even when I got to hold them hours after they were born, I didn't feel like they were mine.

I didn't feel like they knew who I was, and in the face of a twenty strong medical team, like they needed me at all. 

It was like watching a scene I desperately wanted to be a part of from behind sound proof glass. I struggled to feel like they needed or knew me, there was no question whether I loved them, but to me I couldn't help but feel they didn't love me.

Bonding is different for every parent, there's no set rule. I didn't truly feel bonded to my babies until they came home, until it was just us away from the beeping machines and teams of medical staff.

One of the most asked questions of new parents by non parents is 'were you overwhelmed with love the moment they were born?', try to remember that sometimes NICU parents might not have an answer to that question yet.

Don't give advice- they're getting enough of that already

Seasoned parents, grandparents, friends with children, even other NICU parents are all packed with experience and knowledge- a lot of it wise, worthy and useful.

But right now NICU parents are at capacity with advice and opinions from the parade of doctors, nurses, social workers, lactations consultants, and even the women in the hospital shop. 

On top of all of that there's the piles of information, studies, documents, medications, and procedures that they have googled late into the night, jumbling for space in a head already stuffed with worry and fear.

If they want your opinion or advice they will ask for it, NICU parents are used to other people having a part of their child's life & care. But let them ask for it, otherwise your useful anecdote becomes just another reminder that they are not the only people making diagnoses and having opinions about your child's weight, sleeping habits, and breast feeding ability.

They still had a baby- that's awesome!

Sensitive though your approach may need to be (less 'surprise en mass visits to the hospital' and more 'having flowers delivered to their room') don't forget: they just had a baby!

Celebrating the arrival of your child when their next few days are full of uncertainties feels strange, but no matter what the future will bring those people just became parents. They made a life and brought it into the world, and that is incredibly special. 

Mums in particular may feel guilt about celebrating the birth of their child, especially if the birth was much sooner than everyone had hoped for. I certainly did. 

In the overwhelming majority of cases, nothing that mum did or did not do could have altered the course of her baby's birth, so guilty though she may feel, letting her know you're proud of the wonderful thing she has achieved is very important.

It's not a 'break until the real work starts'

I'm a big fan of the benefit of the doubt. Usually comments that upset people are meant with the sincerest of intentions. But anyone that says that NICU parents are lucky their child is in the hospital because it gives them a break before the real work starts, is an idiot. 

Anyone that can't possible conceive that having your child attached to drips, intravenous medication, locked in a plastic box and under the constant watch of a team of medical specialists, is not preferable to waking up a couple times a night for a cuddle and feed is a complete moron. 

Even if you take away the emotional toil of having a child in the NICU, there is a significant physical toil to be considerate of. Traveling to and from the hospital; frantically preparing for when your baby comes home weeks before you thought you'd have to; and, for many mums, pumping breast milk every 3 hours throughout the day and night to feed her child.

They might not be tired because they were up  in the night changing diapers and warming bottles, but my god, they would love that to be the reason they are exhausted.

'Getting to leave at the end of the day' is no perk either. Whilst some parents may and can stay in the NICU alongside their children, it is exhausting. You are not the patient, your child is, and whilst you may have some accommodations made for you, it's incredibly stressful being in the NICU full time. 

Whether is for your mental health, to care for other children, for work, or for your own recovery, leaving the NICU becomes a time of the day that's dreaded. Reliving that first experience of leaving the hospital without your child every single day, to go home to a house with an empty crib, only to count down the hours until you can return to watching you baby in a plastic box draped in wires.

When the baby comes home, however long it may be, they are new parents all over again

Turns out, bringing a six week old baby home is a lot like bringing a two day old baby home. Especially when that six week old baby is only 5lbs and isn't supposed to be born for another month.

No matter how long it is until you're allowed to bring your baby home (even more so for first time parents) that first night of 'is that a cry?', 'do you think she's still hungry?', 'let's turn the temperature up/down/up again', is the same whether your baby was born a few days, weeks, or months ago.

NICU parents may be proficient in medicine administration, have had a lot of diaper changing practise, and not have an umbilical cord to contend with- but just like a healthy, full time baby's parents, that first night is the first time it's just them. There's no back up, no call button. Just a tiny human and parental instinct. Often a tiny human whose every breath, heart beat and movement was monitored and recorded for the past few months by multiple beeping machines and trained professional. The first silent night is terrifying.

NICU parents may have had to go back to work, may have re-entered their social circle, or had to get on with life for the rest of their family, but when that baby comes home you're back to a whole new square one. 

So if your NICU parent, friend or relative disappears long after they seemed to have 'gotten back to normality' remember, their 'normality' was just limbo, they pressed pause the day they left the hospital without their child. They just hit play.

Milestones are the work of the devil

My three month olds are actually six week olds. At least in terms of what is expected of them, or what should  be expected of them. In medical circles and those with premature babies, the term 'corrected age' is used for babies born a lot earlier than they should have been. 

My little guys missed out on nearly a quarter of their gestation, so it doesn't make sense that they would be born one hundred percent ready for the world.

Milestones and comparisons make this 'correction' something that NICU parents, and parents of preemies, really worry about. 

They may be watching for that first smile way beyond the 6 weeks your baby smiled at. They might not find it quite so funny that their baby is twice the age of your baby but half the size. When other children are starting to sleep a little longer and eat a little more, they may still be doing feeds every two hours and only getting 45 minutes of sleep at a time, because their baby is really still a newborn at almost 4 months old.

The fortunate thing about preemies is that their development is followed very closely, by trained professionals that understand how pre-term babies progress. Which means that well intentioned though it may be, they don't need anyone else to point out that their baby hasn't smiled at them yet.

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As a NICU parent you're often told how strong and brave you are. But the truth is, no one feels strong and no one feels brave. Everyone feels equally scared and hopeful of each new day and is both entirely in love with and terrified of their child.

The NICU experience, like each baby, is different for every person that experiences it.