Sorry, Wriggles

Some days I long to see you run off as if in flight, with the crowds of other children.

Some days I long to see you slurp up a drink noisily and blow bubbles through straws.

Some days I long to just go out for lunch with you and order something off the menu for you to eat: with pleasure. No syringes.

Some days I long to hear your voice join the little words you are learning.

Most days I feel at peace with how things are and focused on your abilities.

All days I feel so heartbreakingly proud of you (except maybe, when you are badgering me for Maisy Mouse DVD again).

And some days I feel bone-crushing guilt and sadness that I couldn't "fix" things for you.

That I can't wave a magic wand.

I feel angry we have to rely on so many people and are only adding to that team, to help you achieve what comes so naturally to other people.

When you cry during physio stretches, I am crying with you. I've just learnt to have invisible tears.

If I had a magic answer, I promise you I would have used it.

You are so good; so happy really. So full of beans, so scornful of fear.

So why do I feel so sad and guilty that I have somewhere failed you? 

How is it possible to feel so grateful, thankful and elated and simultaneously so muddled, confused and aching for this life you never envisaged to go back to being hidden?

To Wriggles' Father

Unless you live in a cave, you must know today is the day before Father's Day.

Or maybe I just notice it more as a single parent, painfully aware we are missing one half of the parenting team my daughter should have.

Normally I barely register it, so used to it just being Wriggles and I. I am pretty OK with how things are; I've never known anything other than single parenting and it works for us, maybe selfishly but works for me. That is not to say the door is closed, that I have tried to shut you out, shut you up, blot you out. You know where we live, you just don't come knocking. And right now as gifts shops around the UK and the parenting world knows it is the cusp of Father's Day. Call it a commercial ploy, write it off; it doesn't stop it hurting when it rolls around though. Because up and down the country, families, little children, big children, partners of brand new children will be celebrating the man in their lives. And we are missing one; to be honest more than missing you we are missing what we could have had. And a part of me thinks that even if you turn out to be a reformed character in years to come, Father's Day will always be a reminder for me at least of your initial lack of enthusiasm. I hope you step up, truly I do. It makes me feel sick to think my Wriggles might grow up feel ignored, unwanted, not half as special as she is. So I hope you come back for her. I wish you would. Today the world seemed alive with dads. Doting, playful, exasperated, grumbling, adoring dads. Dads there in the thick of them. Some had partners, some were alone. But they were there.

I've just put her to bed. We had a rough bath time after she refluxed and was sick everywhere, crying her eyes out. Exhausted, she fell asleep on my lap as I mindlessly watched The Voice, more listening to her breathing rise and fall than a bunch of hopefuls. Over a hour later as she snored softly and my leg went numb, I softly put her down in her cot. Nearly 3 and she still sleeps deeply like a new baby, fists clenched and face screwed up. All those nights you never saw, the baby years you will never go back. That intimacy of a sleeping child. How did you not want it? Not crave it? My favourite mornings was waking nose-to-nose with a gurgling child, sweaty curls matted on her head. I know you can't always miss what you don't know, but I can't imagine how I wouldn't need that knowing I had a child. My shoulder is now wet with her dribble. I wonder if you'd think that was a bit gross. To me it's a badge of honour.

There is so much I want to ask you but far more so much I am afraid to. In all honesty, I don't think I want to know why you have chosen to withdraw. I am certain it wouldn't make me like you any more. Is it because you're not here, you can't see her and fully experience that love? Is it because you don't understand her disabilities? Is it because you simply never wanted children? Is it because of me, because you didn't love me and therefore don't love your child like you could? All fill me with fear mixed with the unknown it might be none of them. I cannot understand being the one that lives with her, knows her so closely. I can't do anything without thinking of her.

I'm not sure what you'll be doing tomorrow. I wonder if you'll miss her; think of her first thing and last thing. As you see your own father will you wonder what happened to your own fathering? Wriggles is too little I think to understand it all yet. She certainly is not wanting for loving men in her life, thank goodness. That is your loss at this moment in time. The potential for loving divided out between others. Humans are forgiving beings though and love is more complex than we'll ever understand. I know in time if you wanted you could have splodgy hand-printed cards, bent and dog-eared crafty items, hot breathed hugs. But you have to ask; a chosen and deliberate absence deserves nothing.

I will make sure she has a good day tomorrow as always. It will be a strange one. I might have to provide all family roles but it will never be my day. I am not a father. So until you reappear in our lives, her life, it is a day to effectively forget. Just another Sunday. 

Duck

Some days I am like a duck on water, (I was going to say swan but am nowhere near that graceful) on the surface serenely paddling along taking it all in my stride, quacking at appropriate moments, dabbling for leftovers...but on the underneath, frantically paddling to stay afloat and not sink however much I would like to drown in self pity and stick my head under and not come up again for a long long time. Today I am an upside down duck.

There is no particular reason, apart from throwing off a slight cold myself and taking care of a sick child, and carrying on with everything we do everyday in it's tube-feeding, physio-exercises, refluxing glory...oh yes actually, they look some very good particular reasons.

I AM ANGRY. VERY angry. Not at someone or anyone or anything. Just at the sheer bloody unfairness of some things. I know some people believe things happen for a reason. For better or worse, I am not one of the those people. How can suffering in any guise be for good?

Two years ago, my little girl was critically poorly in a plastic box, her little bird like body being pushed to it's physical limits to stay alive. I had held her once.

Two years later, she is lovely beyond belief, full of beans but still needing medical help in different forms to ensure day to day is comfortable and monitored so that things are not getting out of control. Medical science is amazing, I just wish we didn't need it. I am angry that somehow, she came to need it. That she needs tube feeding to protect her lungs, that she needs medicines to stop stomach acid damaging her oesophagus and airways. That she needs exercises to stop her legs, feet and hips from tightening and ceasing or delaying development further. Some days I am so TIRED of accepting and riding the wave of all this vital and gratefully received help and I just wish upon wish things were different.

That she would let herself eat. 

I am her MOTHER. Why can I not feed her in the way we take for granted? 

I want her to experience the delights, the sensory, the social aspects of eating. The pleasurable rituals we play out daily, the tingle, the sharp, the smooth textures, the range of tastes from surprising to comforting. The salivation that comes from it. The pathways our brains make from it. I want her to be able to go for tea with friends. To use food as a means for happiness not just necessity. 

Some days it pains me to keeping trying when she gets so agitated. 

Some days I am very angry that parents have to fight to be taken seriously. It has taken 2 years to finally get doctors to take her reflux seriously and to get to the point where she is 100% tube fed and will be for the foreseeable future. Because otherwise, her already vulnerable chest is at risk. Today I got a review letter confirming that the bronchoscopy, her pharynx is hypotonic (pharyngomalacia: basically "floppy", narrowed and prone to collapsing under strain). This was briefly noted back on PICU when she was intubated at 7 month old! How has it taken until now to get a name? Unsurprisingly, this can lead to feeding problems. Well who would have guessed?!

Mostly I am just furious that things are not straight forward. ALL I WANT IS MY CHILD TO HAVE A PERFECTLY ENJOYABLE UNCOMPLICATED FUTURE. 

Is that too much to ask?

Sometimes

Always, always, always I am proud of Wriggles.

Proud of what she has achieved.

Proud of what she will achieve.

Proud of how far she has come.

Proud of what a delight she is (tantrums excluded) and how she charms the pants off anyone and puts a smile on the face of strangers.

But sometimes, although I am proud I am also sad.

Not disappointed, but sad. There is a huge difference between the two.

Sometimes I look at other children, and whilst I do not compare, I do notice. Notice that those younger are taking steps, forming forms, wobbling around whilst my older girl crawls around blissfully. And sometimes I feel angry or upset or frustrated that anyone should have a complicated journey, that any innocent child should have to be on a different path, that any family should have a challenging journey.

It's character building, they said. Challenges make us stronger and us who we are. 

Sometimes I believe it and sometimes I think it is bollocks.

Sometimes I want to know what the future holds and sometimes I am scared. Sometimes I am furious at the universe for giving my beautiful girl such a mixed bag when other (less nice, obviously) children get such an easy ride. To them, the terms I know and hear and think about every day are either those of ignorance or simply intellectual. To me, they are part of my child.

Sometimes I wonder if I had done anything any differently if we would have had the complications we did and still live with.

Sometimes I wish I could just take Wriggles had and run off into the sunset, away from doctors, from clinic, from observations, from reports, and just be the two of us alone.

The Best Worst Place

Recently, I met a fellow neonatal mum face to face. We were introduced by a good mutual friend of ours and had both had daughters on the Tiny Lives unit at the RVI. Our daughters had missed each other by a couple of weeks. Her gorgeous 30-weeker, now 16 months old, was born due to placental abruption. Immediately, it was like we were part of a secret club with a code language. In minutes we swapped procedures, compared stories, established mutual acquaintances on the ward and compared favourite doctors and nurses. 

"It was such a wonderful place."

"So lovely; just incredible."

Our friend, with her term baby, looked at us as if we were mad.

We paused and looked at each other as if we were mad. And quickly looked away, a slight welling of the eye and a lump in the throat.

"A horrible place."

"The worst place to be."

The thing is, both things are true. A good NICU is the best worst place to be. If you're going to be separated from your newborn, you damn well want them to be in the best equipped place with the most high-tech machines and knowledgeable staff yet also with compassion. But of course, even the best NICU, the one with the friendliest nurses and the most intelligent doctors and the newest and sparkliest and beepiest machine is never going to be enough. 

Because it's not with you. 

You can visit, yes. But that is the hitch: you have to leave. Night after night, you have to walk away. Bye bye, baby. Does your child, wired up, know you are leaving? Know the difference between night or day? Know inherently that you should be there, forever and always? That is all debatable. But to you it goes against the very grain of parenthood. It is the strangest thing: you know it is the best place for them. But you also know, that it will always fall short and cheat you both of the most loving and most caring place: being there with you.

Fright

Yesterday at work, I had one of the more enjoyable tasks I do: filming rehearsals with the dance company for the new piece which is being choreographed. The new production is a telling of favourite fairytale Rapunzel, originally a European folk tale that was collected and retold in the Brothers Grimm book in 1812. There are several variants of the story which pre-date this, including Petrosinella in 1634 and Persinette in 1698 which all have in common the story of a witch stealing or bargaining a dearly wanted child away from her parents and locking her in a tower until a prince finds her and begins to visit her by climbing into her tower from her long hair. 

As a child reading the story, the bit we all focused on was Rapunzel being in the tower and sneaking her prince in while she falls in love before being banished by the evil witch: the stuff of drama and romance. As a more mature understanding, it is quite a complex story and there are more illicit and darker undertones. In many variations of Rapunzel, she is banished because she has become pregnant herself, which is how the witch or Dame Gothel figure finds out about the nimble-footed prince. It is as much about desire, sexuality and fertility as it is about princes and princesses and good conquering evil. But before this section of the tale, is the beginning whereby Rapunzel leaves her parents, which before I had never given much of a second thought to. Of course, it is just a fairy tale and has no basis in reality, but it is powerful the notion of parents giving up their child in any form, fictitious or otherwise. As I watched, I thought and reflected as a mother on how it might be to have my only child snatched by a sorceress (as you do). A lump rose in my throat-as a parent who has been through NICU I know all too well about separation and the fear that you may never get your happy ending. The idea that I might have lost the sunshine in my life made my pulse race and my thoughts strayed to real life parents who for many assorted reasons have either been separated from or lost their children.

The studio was warm and the dance was entrancing and emotive, and I happily sat with the camcorder in the corner when my manager walked in. She came over and said in a low voice.

"Your childminder has just rang; she's concerned about Wriggles."

My childminder never rings.

She has only rung about once before in over a year she has looked after Wriggles. She has a remarkably high threshold for sick or cross babies and is full of common sense and does not take things like this lightly. She will exhaust every avenue before ringing.

My little world suddenly slowed down and came to an abrupt stop.

I ran up to the office, stubbing my toe on the way out. Pelted up the stairs and shaking, scrabbled to find the phone and her telephone number. My hands fluttered and my heart was in my mouth as it rang.
Wriggles had had one her "moments" again. No one is quite sure what causes them, but every now and then she will get horrendous and prolonged coughing fits out of nowhere and become very breathless and chesty sounding. You can audibly hear copious amounts of secretions rattling around (mostly transmitted upper respiratory although they can also be lower respiratory too, particularly in her right lung which is the most scarred) and her breathing becomes very rapid with recession. Sometimes if she makes herself sick, they pass quicker but this is by no means a given, and it is usual for them to last several hours at a time. Although they have some similarities with asthma attacks, doctors are confident that it is not asthma. To me they seem to be connected to sleeping or feeding and the doctors have said it may be a side effect of reflux and chronic lung disease that hopefully she will grow out of in time. It could also be as her airways are still very narrow as a result of prematurity that any catarrh can block them very easily.


I left as quickly as I could, losing one sock in the process (later located in handbag: no idea how). Wriggles was calming when I got to her but still very chesty and breathing fast. She had not been able to take any fluids to help because of the coughing and chestiness and as I was nearer to the doctors than hospital I decided to cross my fingers and take her there and hope it was the right decision. Luckily it was, and we got to see a doctor who has seen these episodes before with Wriggles. It was beginning to pass after about two hours by the time we saw him: typical! He was very understanding though and found an ear infection and catarrh as well as advising use of inhalers and antibiotics for the next few days. Panic over... We returned home via the supermarket with some ice cream as a treat.

Wriggles went off to bed with some persuasion and I let out a long breath. Compared to some of Wriggles' escapades it was so minor. But there is nothing like reawakening fear to put you on high alert and dredge up memories and anxiety. Having seen some pretty horrible sights of Wriggles being on the edge that are burnt into my memory, every tiny and slightest threat brings them back to the forefront. Do I think that Wriggles having an increased work of breathing for a few hours will send us to Intensive Care? No, I do not. I know what merits an ambulance and an emergency and what merits scanning the shelves at Boots. I don't automatically assume that every single infection is life threatening. But living with memories is a curse as well as a blessing. Because for a split second, fear overpowers love and knowledge and you realise that you cannot ultimately protect your child from everything, try as you might. And that, is scary.

"Normal"

Yesterday morning I was idly listening to the...gulp...Archers omnibus, whilst chasing a newly crawling Wriggles around when I heard the storyline about a heart attack. Bloody Archers, first they have the premature baby storyline (reduced me to hysterical tears over the dinner table at Christmas just weeks after Wriggles reached 'term') and now one about hearts! A lump rose to my throat and I was transported back to the Intensive Care waiting rooms of my father and beautiful daughter within seconds, scared and tired in an empty clinical world.

I also fittingly read a discussion on "normality" after trauma and if you ever return to your former state or feel like you fit back in with the world. Can you, and are you, 'normal' again?

Chocolate Tea Party

Recently I wrote about the tough separation that can occur when your child is ill, for the do something yummy campaign. This feeling of distance sadly shaped a lot of my early motherhood and still looms large in my mind now. It has made me both very grateful and also passionate about the support that families need; that I needed back then.

Being separated from your child is hell; I can't think of a way to dress is up. However, the one thing that can make it easier is kindness. Kindness and a bed as near as possible. And this is where the Sick Children's Trust is a light in the dark. One of the best things that they do is operate "Homes from Home." Around England, they have seven houses attached to major hospitals that help over 3,500 families every year. 

No nurse, doctor or professional is normally any substitute for a parent. A parent’s presence is often worth any amount of analgesia, play distraction, interpreters or therapy. Children’s deterioration is normally spotted first by a parent and their recovery vastly enhanced by their presence.”
John Reid, Director of Nursing and Clinical Operations, Sheffield Children’s NHS Trust

 

When Wriggles was in Intensive Care, I was lucky enough to be allocated a room in Crawford House, a 23-bedroomed house on the grounds of the hospital. As well as a variety of bedrooms, it had a lounge, kitchen, bathrooms and laundry room for families staying a while. All in all, I spent eleven days there: it felt a lifeline. However, knowing that I had a bed behind a private door, less than 5 minutes walk from my daughter and a telephone with a direct line to her bedside was a comfort. in fact, it was sanity saving. I knew from Special Care how sapping it is it return home night after night alone, how hard and expensive it is to go in and out and how home comforts mean nothing without your family. Crawford House kept me sane. It kept me on site so that if anything changed, which it would and very suddenly, I could be there immediately. It enabled me to have no limits to my time on the ward; if I wanted to stay into the early hours I could as it was safe to walk down the corridor, across the car park and into bed. No public transport. No drunks. No taxi fares.

In the kitchen we all had a cupboard so we could cook as well as live off hospital sandwiches and all the utensils and crockery were provided. Bath linen was provided and bedding in the rooms, and hairdryers and shavers could be lent out. In short, it was like a holiday cottage, bar the somber mood in the air. None of us were on holiday, we were all parents of very sick children. Some like me were alone, some in pairs, some had their whole family with them. the range of rooms meant that other children could also stay and there was a special playroom to accommodate this. There is no charge to stay, but it costs £27 per room per night to provide this service. I would not have been able to afford this for my stay, there is no question. I was able to give a donation but it was a far cry from the near £300 I would have otherwise owed.

The houses have an 89% occupancy throughout the year, although in the time I stayed it was oversubscribed with a waiting list. The first night my daughter was in Intensive Care there were no beds but both I was reluctant to return home and the nurses were reluctant to let me, as she was so changeable. They snuck me into a spare cubicle on the paediatric ward we had been on previously under the strict premise that if there were any emergency admissions, I was bound for the all-night Costa Coffee. Thankfully the following day I received a call that a bedroom had become free. During my stay, some families were there throughout, others changed every few days. Some families came for operations, some for emergencies. I would estimate at least half of the families were those of a premature baby in the neonatal unit-were I have been just mere months ago. In fact, their latest project is for a large parent's house attached to a large neonatal unit in Cambridge. 'The Rosie Hospital' will help hundreds of families across the East of England and beyond, as sadly many babies are transferred sometimes hundreds of miles to access the medical care they need, often leaving parents uprooted and faced with a several hour long trip every day or an extensive hotel bill.

Why should you help? Because there are no guarantees: no one ever thinks that will be me. But if you have the misfortune to be 'that one', then you jolly well need support. Not want, need. 

So what can you do to help? Many things! You can donate directly, use their shop or take part in The Big Chocolate Tea Party! Chocolate? Tea Party? Yes, thought you'd like it!

Make chocolate things, sell chocolate things, drink tea and have fun! What better way of raising money for a good cause? As the say goes, every penny counts. Just £25 would buy a brick for a new building project or a mere two cupcakes more would buy a night's stay! So what are you waiting for?? Whip out that apron, wash your best teapot and crack on with it!

Separation

Imagine your child can't be home with you.

Imagine, just imagine. Imagine leaving your child, having to say goodbye and walk out the door. It's hard isn't it? I'm not talking walk out the door to go to work, to have a haircut, to have five minutes peace, but to walk off for the night and not return until the morning leaving a vulnerable child. I don't have to imagine, I know all too well.

Wriggles, my baby daughter is 16 and a half months old, 488 days. Since the day of her birth, I have spent 72 nights apart from her. That is almost 15% of her lifetime, not being there in the dark hours to attend to her every need. 15% forfeiting motherly duties and feeling helpless and guilt that my child may well be scared, being looked after by strangers. Of those dreadful 72 nights, 61 were spent in Neonatal Intensive Care and then Special Care as a neonate, needing to get to the optimum stage of getting home. The last 11 were while she was 6 months old in Paediatric Intensive Care. Between the remaining 85% of night times, we have spent numerous nights in hospital wards. I don't care to specify numbers or days, all I know is that it is quite a lot. Thankfully, those nights I spent sharing her bedside or cubicle in a pull-down bed, a fold out chair or a camp bed. They were tough, yes, but I was just so grateful to be with her I couldn't give a hoot. Because leaving your child at bedtime and not coming back is, well I can't find words for it.

Bizarre.

Heart-breaking.

Wrenching.

Guilt inducing.

Surreal.

Shameful.

They maybe are a few, but they don't even come close to summing up the well of loneliness and emptiness that you carry with you. Never have you feared silence so much, never have you keenly felt the emptiness of your arms.

There is no etiquette either for how to act. When Wriggles was in Special care and not in any immediate danger, there were the conflicting assumptions: 1) that life had to go on and 2) I should be by her side. It is not physically possible to spend every waking minute beside an incubator, for some parents it is not possible to spend every single day. Yet the times you are not there, you are in a daze, a sort of no-mans land. Time is not as you know it. During the SCBU stint, I had one night where I went to the ballet, taken by a friend who thought I needed distraction (she was right, it turned out to be a crucial night for straightening my thoughts. My premature daughter never left my mind throughout the whole performance, and it was this that really hit home just how much everything meant. As the saying goes, you can run but you can't hide) and for four weeks when I went a little potty, returned to work 20 hours a week in the office. That definitely was a mistake. I could barely concentrate at work, I resented being there however much I needed the money knowing that imminent single-parenthood was around the corner and a long stretch of time off work caring for a child on oxygen, and I ran myself ragged trying to simultaneously be at hospital and office and continuously running (literally, I must have looked mad) between the two, which luckily where a fifteen minute walk apart. I also had to collate all baby items that I had not yet bought in that time and rapidly sort out finances and living space. I would stay at the hospital late into the night and would sleep with a increasingly crumpled photograph of my daughter on my pillow. It was no replacement.

Intensive Care was different; her health was an utterly different state of affairs and the experience was far harder. Again, I knew she was in the best hands and separation was a medical necessity but sleeping away from your critical child is not something that is easy. In fact, sleeping may be an overstatement. Can you imagine going to bed without hope? Waking with a hollow dread-alone? A bed had never seemed bigger and night seemed cruel.

We still share a bedroom now, thankfully back in our cosy flat. At first, after the times apart it was a comfort to share a space and know I was not even metres away from her, but could reach out and brush her cot with my fingers. Now she is getting older, I just have not had time or spare hands to move my bed in my own room and give us both some grown up space. I will do very soon, it is time to move on and put some of the past to rest. The bad times are over, and we pulled through, Wriggles triumphant. Now I sleep every night with my snuffler and I love it, whether through the baby-monitor or my own ears.Until she is old enough for sleepovers or I have gone mad with baby-chatter, I will be uneasy unless we are under the same roof each night. It makes me feel safe to know she is nearby. There has been enough separation. 

This is part of the Yummy Mummy campaign for CLIC Sargent, raising awareness for children with cancer. Visit www.yummymummy.org.uk for information and fundraising ideas and search Twitter for #dosomethingyummy. No one ever expects it will be then, but what makes the difference if it is, is knowing that there is help and support available.

Go to Nickie at I Am Typecast to view others and see what she has to say.

Growing Up: Wriggles in Review in SCBU

SCBU felt like a very transitory place. It certainly did not not enhance any feeling of parenthood, and in many ways was quite bleak as no one wanted to be there and being there is something of a dread for any expectant parent. When your baby is born all you want is to hold them, have them with you, go home and start life. You do not want to be stuck in a clinical environment physically separated from your child, having limitations on contact and involvement and holding your breath, waiting to see if the next day holds good or bad news. For newborns, bad news should be that they have been sick for the millionth time and you have officially run out of clean t-shirts. It should not be that they have required resuscitation, have a life-threatening infection or have had a brain bleed which may or may not affect their development and life chances.

We spent nine weeks in total on the unit; one week in NICU (Intensive care) and eight weeks 'feeding and growing'. We were one of the lucky families. Nothing majorly serious happened during our stay which was as straightforward as it can be for a premature baby. Yes, it was one step forward then about six back, yes she still had apnoea's (stopping breathing) and bradycardias (slowing heart rate) meaning she needed varying degrees of stimulation, yes she needed various medication to get her through to the next step, yes she required breathing support, but she was not affected by many of the afflictions which sadly too many premature babies and their parents have to experience. The only blip was, after being in air for a few weeks, she began to tire and had to go back on to low-flow oxygen via a nasal cannula. Unfortunately, rather than wean her back of this her requirement crept up and when she started oral feeds (34 weeks gestation) she needed more and more. After fits and starts, she began to get the hang of bottle feeding and as the magic words "home time" began to be whispered it looked like she was going home on oxygen.

 

Many parents are left reeling from SCBU months and years later. It is such an alien place that is to the be the ground for the some of the best and worst moments of your life as a family.  You have a baby; but you don't have a baby. And few people understand. They try, people really try but again, it is so alien.What do you say to someone who has a baby in a critical condition? What can you do for a friend who is experiencing grief? It is human nature to put a good spin on things, "don't worry, it'll be alright in the end", but sometimes this is not what we need. Personally, I felt desperate that people should acknowledge how hard it was. I mean, can you imagine leaving a tiny, sick baby while you go home? Can you imagine giving birth then existing separately whilst other people care for your baby? Can you imagine asking permission to just touch their hand? On one hand, you are so grateful to the medical staff for saving your baby, ensuring you do have a happy future, but on the other you are almost seething with resentment that it should be you taking care and being a parent.

Everyone deals with the experience very differently. This briefly was mine, and in hindsight my pleas I wish I had had the strength to say out loud to people at the time. They may sound selfish in places, but I cannot convey enough how distressing it can be:

• This is one of the hardest times for me. Don't try and make it better: the only way it is better is either by turning back the clock or turning it forward being at home
• Please don't crowd me. I spend all day, whilst sitting solitary by an incubator, surrounded by people who rightly know all my private business, who record things I might say and who know every movement I make.
• Please let me get to know my baby first. I know everyone is excited by a new baby and wants to take part, meet them and have fun but I am still bonding with my baby. It is hard, really hard. Let us have some space. We will be glad of the company when we are ready, but only then.
• I really don't care if your next door neighbour bar two has a cousin twice removed whom was born 16 weeks early and now is a Nobel prize winning weight lifting millionaire hunk
• Don't keep saying it will be alright in the end. That is one of the worst things about this: there is no way of knowing if it will be. 
• Once we get home, it will be like starting all over again. My baby might be well over a month old, but will likely only be reaching the stage of being effectively newborn. So it might take a lot longer than you think
• This will not go away overnight. I might really need a shoulder to cry on months down the line. Repeatedly. Please don't tell me to pull myself together and be grateful. It still hurts.

Before I even started blogging myself, here are three great posts by other bloggers about life in SCBU and how it feels, how frustrating it can be and how to help a friend or relative who might be experiencing it:

Edspire

Mummy Pink Wellies

Diary of a Premmy Mum

SCBU seems to sum up having a premature baby; it is a physical place where we can attribute blame or sorrow if we need to, rather than a more abstract concept or uncertainty that does not have a name. I treasure my keepsakes for being physical bits of history at a time where I was mentally struggling intensely and was for the best part on another planet just to get through, which means in part I feel robbed of creating special and happy memories. They and SCBU/NICU are the beginning of a journey which can define some peoples parenting experience, as it does not stop when you leave. I found we had follow up appointments, regular development checks, and when it transpired things were going more slowly, began to receive referrals to more specialist teams. These were all down to prematurity and the long-lasting affects. It never ceases to amaze me that being born weeks early can mean years of catching up. You simply don't pick up where you left off once outside the womb. Many are lucky and catch up between 2-5 years of age but equally many are left with long lasting problems, either physically, socially or cognitively. Of course, like anything these can be from mild to severe and can be managed, but it is not something any parent expects to have to contend with. It does not affect the love you have for your child, it just is something that as a parent you learn to accept and let go of some of your dreams of "My Ideal Perfect Family". It is learning that perfect has many forms.