Friday, December 21

50/52 "Helping" with the Christmas post


And so it is Christmas....

Yesterday we went to a wnderful Christmas party with Piccolo music. It did not take overly long before half way through Jingle Bells and I was fighting back tears as my daughter stared lovingly at the Gruffalo (sized suspiciously like a 4 year old boy) sat next to us. I am blaming it on a hormones, too many mince pies before 10am and the recent passing of what should have been Wriggles' second birthday if she had had the decency to arrive on time rather than three months early. I can't help it, I try, I've really tried but sometimes I just get caught unawares and it is like an enormous smack in the face remembering everything. It isn't so much a terrible way, it's more a bewilderment that all the hardship has lead us to this moment of joyful normality I never hoped to dream we could take part in.

So many times I have sat. By an incubator. By a cot. By a hospital bed. In the doctors surgery. In A&E. In an ambulance. In intensive care. In clinics, so many clinics. At the child development centre. The hospital canteen. So many tears I have cried, so many nerves I have wrung dry.

And yet.

What have I to show for it?



This beautiful face. This smile. These twinkling eyes. This full-of-beans-zest-for-life-loving this thing. And Christmas really brings it home. It is such a time of hope and joy, not to mention family and celebration. Last Christmas, Wriggles had no mobility and was not even a reliable sitter-upper at over a year old. She may still be yet to walk, talk or eat by herself but the progress she has made in a year is astonishing despite acquiring a diagnosis and tube. As this morning we sang along to our festive CD, she giggled like a lunatic and copied the actions, sometime with prompting and sometimes spontaneously. 

It is impossible to erase the past. It happened and really is a huge part of our lives. To some people it may seem like needless torturing yourself but really is it fair to forget? Especially when so many have trodden this path before, many with different outcomes, some happier, some sadder. At this time of year, as much as the celebration it is time to remember the babies who fought but were not so lucky, babies and children who were loved enough for a thousand lives but are not here now. We were so nearly them, more than once and that is why these little moments are all the more special for us.

Wednesday, December 12

49/52 Behold the festive...alpaca?


Now don't get me wrong, I like alpacas. I think. What isn't to like? A silly hair, woolly jumpers produced, not hankering taste for biting small children's fingers... the only umbrage I take with the alpaca, is that they aren't renowned for being festive. And that is where we met them, at a Victorian Christmas Fair. The only Victorian element I could possibly spot was the owner of the Punch and Judy exhibit, but nonetheless it was quite Christmassy and free and full of nice stalls. We had been to a Christmas fair the weekend before and rather excitingly met some real live reindeer. At this one, was a pen with three alpacas. Now , given it was Christmas themed, I cannot recall an alpaca in the Christmas story. Donkey? Yes. Sheep? Yes. Alpaca? Wrong part of the world I think. I wonder if they were aiming for camels but ran out of budget. However, Wriggles was rather keen on the alpacas and tried to throw herself over the fence so I will let them off. 


48/52 Momentarily angelic (ish)


Tuesday, December 11

Hard Work

Did you know, two year olds are hard work?

They are also funny, charming, smart, mischievous, sweet and affectionate*, but I would sum up our experience of being 2 so far as bloody hard work.

This might be the bleeding obvious. We've all heard of the "terrible twos" and know that choices=confusion=stamping our feet. But I've just got to write it down to remind myself. Not that I need reminding (I do own a 2 year old, with a personality so big I may as well own two), but I need reminding it IS the bleeding obvious for a good chunk of the day/week/month/year. Because sometimes it sends me barmy to the point I want to tear my hair out and reach for the Emergency Rum** as soon as 'Numtums' (9am showing) finishes, and it is very easy to forget that there are a lot of similar parents up and down the country all doing exactly the same.

It certainly isn't that I don't love my child. I do, of course I do. I love her every millisecond of the day. In some ways, I am peculiarly grateful she even throws tantrums-I nearly lost her on more than one occasion and her prognosis could be so much more severe that I feel I should celebrate every last scrap of life, foot stomping and all. However, in the rational day-to-day life, I roll my eyes along with the best of them and grit my teeth and count the seconds until bedtime and calm descends onece more. Because there is a simple truth we all know, that we have probably applied to many people throughout our life:

I love you all the time but that doesn't mean I have to like you all the time. 

But for some reason, this feels hideous when we apply it to those dearest, our children. Not like our children? Even writing it, the perfectionist in me feels aghast and I feel like squirming, not wanting to admit it. Maybe it's not that simple, it is more fragments of a phase that I don't like rather than a toddler. After all, it is actions performed by an immature boundary-pushing brain that I am perceiving with my adult and emotive-parent brain. But my goodness, it is EXHAUSTING.

hope  know Wriggles isn't on a one girl mission to send me mad. I know she isn't lying awake plotting how to press my buttons (because she is "singing" to her toy Hedgehog and is yet to multi-task). I know all toddlers do this, even the super-nice ones, so it is beyond me that I can't cope better. And then I have to think, yeah me and all the other parents. Because truth be told, even the most serene and kindest of parents with benevolence blossoming around them like a halo, even they get mad and exasperated. Either that, or I have a fabulously lax group of parent-friends. 

Not that that always helps when you are in the moment, the zone of toddler-warfare with your entire house emptied upside down around you and refused biscuits crushed into the carpet. But step back for a second (ie. put the kettle on, preferably without small person clamped to your legs) and breathe. I am finding two things helpful to think of whilst waiting for the water to boil at this point. 1. I was this tiring/irritating/incessant/repetitive/stubborn/single-minded once and 2. The only person expecting me to be Mary Poppins is myself; just getting through the day and trying not to loose my rag- that will do for today. And apparently read 5 MILLION BILLION SQUILLION stories and put the teddy in the box-but-not-the-right-box-oh-god-its-the-wrong-box-quick-where's-the-other-bloody-cardboard-box and patiently open and close and open and close and open and close the same door on the advent calendar whilst balancing an 11ish kg weight (otherwise identified as a child).

Would I have it any other way?


Probably not.

Maybe a tad less whinging (please).

Same again tomorrow then.....

*some of the time
**I haven't. Yet

Tuesday, November 27

Grubs (not) up

The trouble is, when you actively try and make food not an issue, you do that very thing and it somewhere-subconsciously or just like a giant klaxon-becomes a bloody great issue. Anything who can sit with a child who recurrently refuses all morsels, offered or pilfered, and not be affected by it even a little bit can in my opinion get a knighthood, sainthood and any-other-glowing-hood they wish.


I try, I really try to not let it get to me. After all, Wriggles has a g-tube so she has all nutritional requirements going straight where they need to, but nonetheless feeding is the very cornerstone of life. And I hate that she won't eat. Still. At 27 months, on the cusp of age 2 corrected, she is still yet to contribute to her daily needs of nutrients or calories.

This all sounds very harsh on her. I'm not disappointed in her, more feeling defeated by the situation. Orally aversive children, or recovering orally aversive children are hard work-and I mean that in the nicest of ways. I love my daughter, I think she is the bees knees, but feeding is bloody tiring, physically, mentally and emotionally it is nothing short of demoralising. I wish it wasn't, and however lightly I whip away plates and "never mind, we'll try again tomorrow!" and think of ingenious ways to get her to relax around food, inside a little bit of me is just in pieces. Because something so basic has become such a hill to climb.

We do have good phases where we can make progress. for instance, she will now touch food even when in a bad phase. She will try and steal food off other people and plates, rather than recoil. She can chew some things and move food around in her mouth before swallowing it. Her gag reflex is nowhere near as prominent as before. She will happily play with cutlery, plates, bowls and cups. She enjoys messy play with food (far more than putting it in her mouth!) and we also play with toy food. So definite progress. At the start of this journey, she would not be near food or cutlery, she could barely swallow without gagging and vomiting, she would not tolerate having food placed on her and for a very long time, the only food we had any success with was yogurt. Up and until well after her first birthday, between her childminder and myself, I think we tried every brand of yogurt, fromage frais, mousse and dessert-pots to try and tempt her. Some went in, a lot didn't. When we are going through bad patches, like now, I have to remind myself of how far she has come really. Yes the journey is very long, but we have done not too shabbily so far. When tube feeding was first mentioned I was horrified, but it actually has helped.

It's just, try as I might, I can't stop myself from wishing we were further on. I know, as an adult without problems, there is so much joy to be had from food. It pains me when I see her batting away spoons, hiding from meals, kicking off in a completely uncharacteristic and exaggerated way, crumbling things to the floor, throwing food and spitting things out that do manage to go in. I am proud as punch when she does touch, taste, lick, or eat something even the smallest amount. I just really wish it was more often. Little breakthroughs are like blinding light in a dark world, I am dancing on the ceiling.

One thing I find hard is that it doesn't sit well with me, this wishing some things were different. Rational-me knows I am not trying to swap her; that this is not some trivial issue I am trying to mould her into; that it does not affect my love for her or my overall parenting. I don't resent her, I'm not angry with her. If anything, I get cross with myself. How did it get to this point? I go over and over in my mind the past. What if I had done that differently, or this differently? Did I not try hard enough? Was it because her reflux took so long to be controlled-should I have stamped my feet louder? Is it her prematurity-why didn't I keep her safer for longer? Was it down to the intensive care experience-should I have kept her solely in the house for longer? I know none of these things I can change. I know I'm not perfect, but I did try at every point. Maybe some things I could have done better-hindsight is marvellous and we can all be guilty of looking with rose coloured glasses at the past and judging the future by it.

So for now, g-tube it's you, me and Wriggles. I know now that her behaviour goes in cycles and we will eventually hit a good patch and build things up again. I know too that in time I will hopefully be able to let go both of this idea of "normality" and also at internal guilt. I just bloody can't wait to get somewhere near there. And not see another Quaver ever ever again.

Monday, November 19

Brick Wall (insert head here)

Today, we had our rescheduled MRI appointment after the last one (or two; I have lost count) were cancelled due to Wriggles being yet again too poorly. Over the weekend we have been seeing off a cold, but today she seemed much better and her numbers were all good so it looked all set to finally happen.

The only thing I had reservations about was it being done under sedative. We don't have a lot of experience with them, but the two or three times that we have ran into them, I know that it takes a lot to knock Wriggles out. Say, a general anaesthetic. In light of this, I mentioned it on multiple times leading up to today to a multitude of people who all nodded along. I also mentioned it today to those looking after us on the ward, the doctor in charge of liaising with the MRI team and anaesthetist if needed and the MRI department. Oh, it'll be fine they all said. We can give her two doses and nothing gets past that! they laughed. Ha ha ha.

So that is what they did. We took a heavy-eyed Wriggles up, popped some earphones on her to protect her ears, clipped a probe on her and turned the MRI on. Which is roughly where the trouble started. It soon became apparent, as I had suggested, that although she might be slightly sedated, she was nowhere near enough sedated to withstand an MRI safely and come out with effective data at the other end. Despite the fact she remained unconscious, she kicked, jerked, arched, screamed and threw herself around. In fact, if the nurse on-hand had not told anyone otherwise, both the MRI team and I would have thought she was fitting, not just fighting the sedative as she was. Even though I was assured it was just that, it was really distressing to watch and trying and comfort her (or even hold her, such was she lashing out and flinging herself around) so goodness knows how it was for her. It really shook me seeing her like it, especially as it continued once we were well clear of the MRI room and back safely on a bed heading back to the day unit. The parting words of the team were "I don't think a sedative is going to do the trick, why not mention a general anaesthetic next time?"

Luckily there wasn't a brick wall nearby to hit my head against or I would have. Several times.

Back on the ward, it took hours to get her to wake up. And even now, nearly ten hours since the dose was given she is clearly still half-under the effects and is too floppy to support herself. It is a shame that it didn't work on a stronger level in half the time! So a funny day all round. And not one I am laughing about. Since the summer when they started taking us seriously and actually noting things down and getting things done, they have been a lot better about listening. I just wish they had this time. I do see they had to try, rather than just steam-roller in with a general anaesthetic if not needed, but at the end of the day, I am my daughter's advocate and protector, and she has been put through a stressful day, a powerful drug (that worked in some ways too well and someways nowhere near well enough) and as she has very limited communication, I don't know how traumatic it was for her and if that will influence things to come. Hopefully because she was only semi-conscious it will seem like a bad dream, but either way it is not helping to make hospital visits easier.

Since the summer admission and the advent of tube-feeding, Wriggles' relationship to and with the hospital has changed. She has always been quite compliant and even when very poorly, cheered to see the nurses who all recognise her. Now, she is terrified of many people and bits of the building she recognises. Whereas before she would be transfixed by sats monitors and thermometers, she is now scared stiff and screams if someone goes near her with a blood pressure cuff-probably the least painful thing! Since the end of July, there has barely been two weeks between visits, be they admissions, clinics, routine check ups or scheduled tests. We have been there a lot. After tomorrow's sleep study (round 3), hopefully it will be a lot longer between visits but it is still going to be somewhere we will spend a chunk of time and we now have another attempt at an MRI to schedule in. 

One thing I worry about is that it will make her resent me, the amount I have to drag her (for good reason) to the hospital and subject her to the uncomfortable, the unpleasant and the downright horrible procedures. She isn't yet at the age to understand the reasoning behind going; far less health problems and some medical practises an adult has trouble grasping. All she knows is that I take her there and it is not nice. I often wonder if she will carry any of these early memories or a subconscious level of trauma or knowledge from it all, especially the longer this hospital-heavy period goes on and her awareness and understanding grows. Whereas in the earlier days she was a little baby who could be pacified, she is now a growing toddler and developing more complex feelings and perceptions everyday. Just because she herself has little speech, you only have to listen to some of her peers' expressions to realise the amount that toddlers do take in, and even if not grasp, process. I am so proud of how brave she is, but in the same breadth I worry that bravery pays a price.

So many people say in years to come, we will all sit down and laugh about it. I hope they are right, because right now laughing is the last thing on my mind and I'm pretty sure I can speak for my daughter on that subject too.

Friday, November 16

10 dreams I had in NICU

 1. Reaching milestones (albeit in own time!)

2. Hairstyles. Putting pig-tails in fills me with a glee I didn't think posssible.

3. Having the sun warm my baby's face.

4. Getting up to mischief. The notion of having a monkey cheeky enough to tell off never crossed my mind, seemingly the ultimate in growing up.

5. Discovering joys like swings. Wriggles' best thing ever.

6. Having my baby make me laugh.

 7. Playing tea parties, my favouite childhood game.

8. Messy afternoons and masterpieces. Proud doesn't cover it. Incidently, some washable paint does not wash out of jeans or off fridge doors!

9. Dressing my baby in anything I wanted.

10. Christmas. Christmases plural. Say no more.

World Prematurity Day

World Prematurity Day is at a special time of year for me. Any time would be a special time to celebrate these special babies and special families, but two days before World Prematurity Day, two years ago on 15th November 2010 my premature baby came home. At 36+6 weeks on oxygen, weighing 5lb 4oz and just perfect. 

As much as I would like otherwise, prematurity has changed my life. And of course my daughter's: I don't know what kind of path she might have lead if born at term, but I almost certainly suspect it would have significantly less hospital based days, possibly no physio and maybe not being tube fed. I hope that in time, for Wriggles this all becomes "a thing of the past" but for me, it never will. My adult memory will always remember, always grieve and always think back to. Hopefully less as each year I enjoy her growing up and growing stronger, but I doubt I will ever be able to forget. I often wonder how much Wriggles will remember when she is older. How much she will be afraid. How much we will be still be involved with consultants.

Premature birth happens to one in 13 families. One in 13. That sounds a lot to me, in an age where we can fly to the moon, have robots clean our houses and clone cells. There is so much we can do  and do well as a human race, but predict and prevent preterm birth is not one of them. 60,000 of those babies are born in the UK. Some babies will have no problems, some will have many and too sadly, some will not make it at all but rest in their parents' hearts as angels. Prematurity is a worldwide killer, in developed and developing worlds alike. One in 13 doesn't sound a number you can just brush off and pretend it might not happen to anyone you know. I bet we can all think of 13 friends or family members? Maybe your 13 haven't been affected, maybe your 13 have had several experiences of neonatal care and preterm birth.

Too often prematurity means nothing more than "small". Tiny fingers and tiny toes. Just a bit smaller, a bit weaker. If you speak to a parent of a prematurity baby or health professional they will tell you otherwise. Prematurity ramps up the risk factor for physical and cognitive problems, they have weaker lungs and immune systems even once they hit their term age. Prematurity can mean constant monitoring or treatment. Prematurity can mean fear, tears, grief, anxiety and mental unrest for families. I never imagined having a mental health issue after a premature baby but I did, and am not alone.

Check out Beadzoid's blog for some fabulous ideas on helping out, Bliss the special care baby charity, Tommy's and their latest research and the 24 weekers movie Kickstarter project. Premature birth should not happen in such devastating numbers in 2012. Help make a difference so that 2013 is a better year.

Join in the chat on Twitter tomorrow by tweeting from 1-2pm using the hashtag #BlissWPD

Monday, November 12

12 weeks outside

I find it very hard to think "biology textbook" about baby development now. Instead of all the 'your baby is now the size of a small-but-perfectly-formed-semi-ripe-mango business all I can see and think is what I saw in special care. As well as being truly terrifying, it is a privilege to see what would be a foetus, but now a genuine baby, grow.

From 27+6 weeks, I saw my daughter develop. Not entirely naturally: for the first near two weeks she had machines to help her breathe (ventilator then CPAP) and from 31 weeks she started requiring oxygen again so had two enormous sticking plasters on her cheeks to ensure the nasal cannulas stayed on. She also had a feeding tube, right up until the very tail end of week 36, in time for home at 37 weeks (well 36+6 just to be clever). 

At birth she weighed 1090g (2lb 6oz) and at term she weighed 2385kg (5lb 4oz). By full term on her due date, she weighed a very respectable 3.3kg (7lb 5oz). 

I can only remember that period of development in emotion now. In grief, regret, tears and heartbreak. And shock, pure shock like a thick blanket. No precious kicks, no scan photographs, no lingering over first purchases of baby grows. No decorating the nursery, no showing off a growing bump, no excitement of choosing names. All that was done in a very intense and stressful situation instead, in a clinical environment with doctors, nurses, physiotherapists and beeps, always the beeps.

Our milestones were suddenly very different. Ventilators, IV fluids, antibiotics, diuretics, vitamins, caffeine, oxygen, feeding tubes, phototherapy, hot cots. And cuddles and cares. Snatched minutes of the day allowed to touch and interact with your child. The bliss of having them close, of your lips and hot breath tickling their fragile thin skin, breathing them in deeply to remember until the next 23 hours later...

Sunday, November 11


When you have a baby, one thing you do not normally associate is starting counselling sessions soon afterwards that are in direct correlation to these events. Then again, for too many parents "normality" is thrown out the window. When you have a sick or premature baby or a traumatic birth, the rule book is ripped from your hands and it seems someone is laughing cruelly. You have all the same tools as everyone else but something is missing that you cannot quite grasp. I imagine even the healthiest baby, smoothest birth and both fleeting of baby blues produces a confused, knackered, upset and bewildered parent. But tweak some factors a little more and it can feel like you are walking between nightmares and the best thing in the world. You know you are blessed, are grateful beyond belief, can tangibly reach true love...but that is only one half of it. And that fact casts you even deeper down a path of gloom, grief or blame. Sometimes all three.

I was first referred for counselling whilst Wriggles was still on the NICU. We were beginning to be on the home straight which adversely became the patch I began to fall apart. I could not fathom being able to care for my baby at home in the way the hospital did. I got nervous. I got emotional. I cried.  lot. When I was trained in resuscitation and infant first aid, I broke down completely because it was too close to home to the CPR I'd had to try on my minutes-old daughter before the paramedics arrived. Then it was confirmed we would go home on oxygen. The sky fell in. Any notion of being able to turn our backs on prematurity, run for the hills or grasp in the dark for any kind of normal baby-magazine like existence was snatched and I was going to the dragged kicking and screaming into the acceptance.

Initially, I was not overjoyed about being counselled. It seemed like another thing to chalk up to failure. You can't even just have a baby? What sort of a mother are you? That first session I was very mechanical. I had got to the point of facts, just facts. Name. Age. Date of birth. Feelings? No, feelings are tied away. Locked away and thrown the key into the abyss. I don't recall a lot, but I do recall the kind lady saying with clarity at the end "you need to allow yourself to feel."

But I couldn't. I would have the odd breakthrough crying sessions, I would tell our story, I would go through the motions, but it was like there was a solid wall. I was talking but there was nothing behind the words. I would not let how I felt about what I was saying out. It was too dangerous. There was a torrent of emotion somewhere that could quite possibly destroy me. Then after we got home, my daughter got sick and then we came home again, I went downhill very fast. It was like a swift plummet, being winded in the gut. I did ask for help then because the only glimmer of rationality left told me that if I didn't things could get ugly and I was the sole person responsible for my daughter and owed it to her.

I was even less overjoyed about the idea of taking medication. To have to be medicated for being a mother? Despite gentle professionals saying but a mother who has been to hell and back, it just didn't sink in. But I took them, thinking what had I to loose. To my surprise, they helped to dent the cloak I had surrounded myself in. They let in tiny chinks of light and slowly rescued some energy, some drive, some routine... Alongside this I also saw a very well meaning counsellor who patted my knee, passed the tissues and said "Oh goodness me, I couldn't have done that" a lot, and also thankfully stepped up sessions with my original counsellor who had importantly been with me the whole time. She has seen Wriggles at the point of being critically ill, in NICU, at home, playing-she had seen the highs, lows and mundane of our lives. And that went a long way, not least is gaining my trust. She had also had her own premature baby twenty years ago and didn't need telling twice about what followed. She listened to me, said some very wise things and never once told me I was a bad person.

Did she fix everything? No. Did she make things more bearable? Very much so. She embarked on a long quest to try and stop me blaming myself and inflecting blame, guilt, remorse and turning these things into long strings of anxiety and fear. She didn't put a full stop to it all, but she did greatly stem the tide and genuinely seemed to care that I wasn't putting myself in torturous circles. The day before Wriggles' second birthday, she turned up at my flat with a birthday present and card despite not seeing her for months. I was so touched that she remembered and cared enough when essentially we are but a handful of her clients. It is little things like that which slowly help pick back up the pieces and restore your sanity bit by tiny bit. Couselling may not be a magic answer or quick fix but it is a service I believe that all parents or family members in difficult situations should be entitled to as just reaching out can remove some of the bricks of your burden. Without it, I fear I would have fallen very low and very badly. I don't know how things would be now if I hadn't have had that chance.

I wish I could say that presented with the tools of good counselling, the caring arms of supportive friends and family and a good overview of CBT that I am completely all done with the past. But this little blog is testament that I am not. Nothing is that simple. Things may be a lot better but there is always one foot still in the past, stuck in a puddle of murky memories. And sometimes I slip and fall straight back in and need a helping hand in climbing back out. All too quickly, the tendrils of anxiety, paranoia and remembrance can curl round your being until you are caught fast in a trap of fact and fiction and have to unravel what is reaction and what is irrational. These last weeks I have been struggling again, feeling the fight ebb out of me. I guess the difference is that I know this isn't forever because things have improved before and will again; not that it makes things feel any easier day to day until we have ridden this out. The mind is a powerful tool indeed.

My Happy Place

45/52 A New Hat

Tuesday, November 6

Pass on the Luuuuurve

No, it's not too much gin. It is a marvellous linky about great people what blog, inspire you, tickle you, make you weep a little bit and also make you snort unattractively out loud at time. There are several blogs I follow and hold in high esteem, but my favourite is Diary of a Premmy Mum written by Leanna, who was runner-up for Best Baby Blog in the MAD awards this year.

Leanna had been blogging a few months before I did. Indeed, hers was one I read avidly before I started. Her daughter had been born at 25+1 and was a few months younger than my daughter Wriggles. At the time, I was struggling emotionally and reading about similar experiences made me feel sane and less alone. I immediately connected with the way Leanna talked about things, her (often black) humour and the strength that came through even if she didn't recognise it.

One of the first posts of Leanna's I read was about bonding with your child in a pressured environment and it was like being struck-as if someone had been looking in my thoughts about my worries, how I had coped and how I was worried about being perceived as coping and bonding. She talked about 'Mummy-bot', the alter-ego that I suspect many special care parents know all to well.

I also loved when Leanna talked about unwanted victories and summed it up perfectly.

"See I wanted to do what other Mothers did, to cuddle and comfort their babies, to tuck them up in just the right way that only Mummy knows how, but when it became evident that this wasn't really an option, I wanted to know what the doctors and nurses knew! I wanted to do as they did!

Of course deep down I knew that I had neither the skills or experience to carry out these roles and probably looked very ridiculous trying, but still I think my Smidge knew I was there for her. Hell- I think everyone knew I was there for her!

But did predicting an infection or surgical assessment help me feel more like her Mother? Yes. Did it help when I was right? Not one little bit"

In many ways, I still feel elements of this whenever I come face to face with a paediatrician or nurse. Despite the fact I now have my daughter at home, am not just primary but her only carer, I still feel like I'm scrabbling about making up for lost time and wanting to prove that I know everything. Which of course, I don't. 

Since starting blogging last year, both of our blogs have unfortunately charted recurrent emergency admissions and varying states of health for our mad preemies. Of course there have also been some brilliant moments and milestones, but it is the unexpected twists that throw you off course and intensifies a need for a helping hand. And Leanna has been nothing short of that, a metaphorical cyber octopus maybe. From supportive comments on the blog, to touching packages sent to our children's ward, I know that there is at least one person out there, if the other end of the country, that "gets it", that knows how it feels. And that makes me feel really quite secure and a bit relieved. And also quite popular on the wards if in hospital. So far, my ill daughter has thwarted our efforts to meet in real life, but I am determined that one day we shall to exchange frazzled anecdotes, run after mad toddlers and eat a lot of biscuits and keep gin in business.

With world prematurity day coming up, there are many great posts over at Diary of a Premmy Mum about how it is having a baby in hospital, unwanted transfers, life on discharge and a growing ex-prem toddler. And if you still want more, there is toddler-craft with egg boxes and some thrifty pumpkin tips! 

Be off with you to read and appreciate now.

Giving In

In July, I accidentally came off my antidepressants that I had been taking for over a year following a diagnosis of Post Traumatic Stress with secondary depression and anxiety. I had been feeling a lot better, was managing day to day life and my own feelings and so when Wriggles was rushed into hospital, asking someone to go back and collect them for me was not even in my top ten of priorities. In fact, it wasn't until pretty much the end of the stay did it occur to me I didn't have them. When we did get home, complete with NG tube, I was really a bit of a mess to actually register whether I should re-start taking them and was quite distracted by the fact that we had appointments and community nurse visits coming out our ears and that my mum came up for a fortnight to keep an eye on us (ie. to make sure I wasn't tipping the loony scales). I was so fatigued throughout the summer months from admissions, then surgery, then getting to grips with a gastronomy tube and then coming to terms with the CP diagnosis that the world was slightly spinning. Who wouldn't struggle? I got dressed (if mis-matched), left the house (because I couldn't bear to always stay in) and Did Things to try and amuse the toddler. We had some fun, survived the second birthday and then landed in hospital again and since then I have been struggling to bounce back. After a few horrid days, it all subsided and I wondered what I was making the fuss about. But since then, it has been creeping back up on me like a little dark cloud hovering over my head following me around and is not going away. I feel like I am teetering on a tightrope wire over an abyss, about to fall any minute into an untold pit. I can't switch off the worry, both irrational and rational, however hard I try. I can't relax or concentrate.

On Saturday, we went for a Halloween soiree (read: small gathering of 4 toddlers and cheese on cocktail sticks at tea-time) and I had a G&T. Because my previous medication didn't mix with alcohol, it had been virtually two years since I had had a drink with the exception of the day when I got the letter confirming CP where I drank enough rum to feel completely numb and send me to sleep. So, understandably, this one drink sent me a little squiffy. As I walked back at around 8pm with the Wriggly one in her pushchair dressed as a cat grinning madly, with firework displays going off around me, it felt like walking on air. I wasn't in ecstasy, just pleasantly cushioned with a warm and fuzzy feeling enveloping me. I didn't worry, I didn't obsess. And then the next day, it hit me. I used to feel like that at least the majority of the time. I used to feel like that pre-child. I used to feel that way when my PTSD and it's entourage was being effectively dealt with. I used to feel Alright, I used to feel Relaxed, I used to Smile without force. Maybe I didn't float everyday, but I didn't drag.

So I am giving in. I am going to plead with my GP to let me try medication again. I feel like I am struggling and I need a cushion to get me through this next bit. I have been patiently waiting for this 'low mood' to lift and it is doing nothing apart from drawing in closer. Memories, feeding tubes and hurt doesn't go away just like that. But if I could a little less like a zombie, that would be marvellous thank you very much. Please.

Sunday, October 28

Mini Break

Today we have to go back to our favourite place for a mini break to complete a sleep study.

Wriggles has gigantic adenoids, tonsils that want to stand up and be counted and on going reflux and on top of this is a restless and noisy sleeper. She often snores like a drunk having fallen out of the pub-so lady like. All of these things combined with a "ropey chest" (to quote one of the consultants. There's nothing like being blunt) means they are keen to rule out central or obstructive sleep apnoea.

Besides, it's been nearly just over two weeks since we were last on the respiratory wards which must mean it's time to go back again.

All that aside though, this admission I'm not too bothered about. Yes, it's a bit of a faff but this has to be our only admission with no intervention, apart from putting some wires on and off and possibly the odd beep. So I'm feeling a bit chipper. Our other planned admission involved surgery and an anaesthetic and our next planned admission (an MRI) also involves a sedative. So this one: I wouldn't go as far to say I'm laughing, but you get the picture. I'm sitting on the fence to if they find anything-I think since the tube was placed her snoring has improved massively (which would fit in with aspiration being reduced) although it certainly hasn't gone altogether. They may well find nothing of concern which would be marvellous. If they do, I'm not entirely clear of the next step but suspect it may involve removing said adenoids and tonsils, which if it came to it I'm not against. Whilst I am far from a fan of surgery, they are proving to be a blessed pest and secretly I've clung on to stories that non-eaters started eating better after the removal of them and tonsils, although our consultant has warned me this would not be a given.

I do feel a slight amount of nostalgia going back. Maybe not nostalgia (after all, we are barely out of there enough to feel such) but fondness for such a chunk of our lives has been played out in that blessed hospital. So for a non-scary visit, I'm almost looking forward to it. Change of scenery? En-suite? Travel packets of instant coffee? Check! And besides, I can't possibly do the washing up or sorting out piles of rubbish in my flat if I'm not there! 

If I stop and think about it, it makes me sad. Sad that we are that used to hospital that it feels like a break or a holiday to go in for ultimately some important diagnostic tests. So I'm not going to. For now, I'm going to pack our best pyjamas and some travel sized toiletries and pretend it's all fine. I bet it will last until we have to leave the flat. 

Then you'll have to drag me there.

Friday, October 26

Tiny no more

Recently I have been trying to do some sorting out. As happens when you have a small child, odd tiny socks and vests you never bought breed and end up EVERYWHERE. Today I found a wee bootie wedged behind the clothes horse and was momentarily caught stock still at it's size. It was so small. Yet it was easily that for a 3 month old child; needless to say it fitted mine up until around her first birthday. When I find these small items of clothing aimed at the first few months of life, I then have to further pinch myself to remember my baby was even smaller. Seriously small. At 1090g (just under 2lb 6oz), little bigger than my hands. Her eyes barely open, unable to breathe for herself and so frail. Her first picture a few hours after birth is a little shocking. I treasure it, but it is not a cute baby picture by any means. I love it because she is my baby but I can't quite imagine it on a board with other baby pictures of squashy newborns or even pictures later down the line of NICU.

When I find tiny things, I always have a pull to go back to our NICU memory box and find her first nappy, first small, even for doll's clothing. I find it staggering to look at them and think that baby, my baby survived and thrived. That babies, some half her weight can too. I can't explain the pull to keep looking at these things, keep reminding myself. In many ways it is like poking at an open wound. God, it hurts when I think of the pain and suffering she has been through. The mental pain and suffering I and my family have been through. The scars we are left with.

I find myself afraid of forgetting, alongside paradoxically being desperate to move on. It has defined things for so long and is really my only experience of motherhood. For so long I wished we could have been one of the average statistics, the "normal", the tears-free, the one where you knew your baby would be there the next morning. Now two years down the line, we are in a little limbo. In part, it is oceans away. In part it is still with us every day in form of some problems or delays or memories. In a strange and not-entirely welcome way it has become my normal, which is what I think I am afraid of letting go of. Instead of doing all the things I expected to do as a mother, I did lots of hospital based things and seeked out people in similar situations for vital support. Now we are in a position to mix and match effectively, I find I often flounder. It feels disloyal, like we are turning our back on all we went through that made sure I had the daughter I have here today. Which is so silly; we all know children grow up, lives move on and people grow with change. Being able to do some "normal" things is homage to the doctors and nurses who fought alongside my special girl.

Sometimes prematurity, illness or additonal needs feels like a secret world, one you can only imagine until you suddenly have the key and being in that walled place is a thousand times more overwhelming and vivid. In some ways, life will never be the same again. "Prematurity is an experience no one really thinks about when they embark upon the adventure of parenthood. And it’s not one anyone wants. But once fate flings such a twist our way, we find ourselves part of the secret society we never asked to pledge." Finding tiny keepsakes feels like a mascot of this new club, a lifelong allegiance with a terrifying induction. It is less about clothes, or first dummies, just that these firsts are so different to the firsts we might have anticipated. But they are still firsts, to be cherished alongside the grievances. But it isn't easy. For the first year, I so wanted to forget. Now I can't bear the thought of forgetting.

Thursday, October 25

How to be a nasty mummy

1. Bribe your child out the house with the lure of going to the swings when actually you need to get the flu jab for the both of you.

2. Ensure a heavy surprise rain shower happens, thus quelling any playground antics.

3. Realise you have left your pushchair raincover and umbrella roughly by your front door, now at least 20 minutes walk away.

4. Given that it is that seasonal time of year for flu jabs, try and arrange said jab in the same week as your child's blood test which has left a nasty bruise to maximise any misery.

5. Stop child from escaping out the doctor's surgery every 30 seconds.

6. Get blasted jabs. Administer Calpol immediately but don't let your 2 year old draw up the syringe for being-in-public-and-wanting-clean-trouser-related reasons. Cue tantrum.

7. Let small child menace toys in doctors for a few minutes to calm down. Ensure child has an argument with a plastic chair. Step in to admonish chair and pacify small child. Cue tantrum #2.

8. Go for lunch. Cue tantrum #3.

9. Try and pick a cafe with a liberal escape-promoting highchair. Don't let your child repeatedly try to escape out of it.

10. Refuse to let toddler touch a piping hot steam-emitting sandwich RIGHT NOW for safety reasons. Cue tantrum #4. Try to explain loudly exactly why for the benefit of people sat around you, all exchanging looks about that poor un-fed baby.

11. Blow on sandwich and when appropriate give small piece. Try to keep eye rolling to a minimum as pieces of your lunch go flying.

12. Attempt to encourage eating and actively attempt to feed small child. Cue tantrum #5. Give up.

13. Borrow book from the basket of child-friendly distraction devices. Pick the wrong book.

14. No small child, you are not going to fling this china tea cup what does not belong me to.

15. Admit defeat and rally troops for return home. When coaxing loopy toddler into coat, try and lightly nip fingers wildly waving around in the zip. If this fails first time, try again.

16. Pretend you can't see everyone else in cafe now averting theirs eyes to your screaming child.

17. GO HOME. Make sure your toddler is exhausted but refusing to sleep. If your child doesn't understand this concept, by all means Wriggles is happy to hand out tips.

18. Put the kettle on. Wrestle toddler into cot.

19. Ignore washing pile and the sea of destruction around you that happened at breakfast.

20. Realise you have forgotten anything useful from the shops such as washing up liquid and toilet paper. Look wistfully at cupboard containing emergency rum.

Sunday, October 21

G-tube 6 weeks on

This *points up* makes me very happy.

Now, just ignore a) the mess b) the fact my child is only half dressed at gone noon and c) the fact she is covered in paint (one of those days when you have to pick your battles. The bath can wash it off later).

That is a child who has suffered terrible oral aversion for eighteen months and as a result is now tube fed. Now obviously, she did not eat the whole hunk of bread. In fact, I think the area consumed amounted to about the size of my little finger nail (and I have tiny hands) but the point is she is going for it.

We have had the g-tube for about six weeks now. I can't believe it is only that long; it feels as if we have had it far longer. I think by the time we had it, Wriggles so badly needed it, that it fitted in perfectly because there was no other option such was the struggle of feeding, gagging and vomiting. The first week was a shock to the system. I knew how much we needed it , knew how much better it would be than the NG we had been making for with for a few weeks, but I wasn't ready for how taken aback I was by the sight of it. Something artificial and permanent sticking out of your child's unblemished perfect skin is a shock. Even if you know how necessary it is, it still got me. Let alone her. I really struggled with how to communicate to a small child how she could be put to sleep, then back up in pain with a lump of plastic sticking out of her stomach and at that point, an ostomy bag. The bag went, feeds were cautiously resumed and we got back home. After a few days of feeling sorry for ourselves, we picked back up. That is to say, Wriggles picked up; she clearly couldn't care less and her attitude gave me a jolly good kicking. If a not-quite-two-year-old could cope with this, then her twenty-something mother was bloody well going to join in. Of course it isn't that simple-as a mother and an adult I am effectively "feeling for two" the emotions, the presumptions, the hopes and fears and everything that is attached to coming to terms with the fact that normality has flown out the window.

We have had some teething troubles with the tube; two infections needing antibiotics and dressings, and hypergranulation tissue making an unwanted appearance. Fingers crossed, it has now all settled down and things are pretty good. I have lost any notion of caring and have primed feeding sets, vented, flushed and hooked everything up on public transport, in lifts, in H&M, in the park, coffee shops, baby groups and in an art gallery. We have got some funny looks and stares out of curiousity but have not yet had to deal with any questions which is a relief.

When the tube was placed, we were still very much in a not-eating cycle. Wriggles is prone to being a little more receptive and trying some limited foods for a few weeks, then frequently going for months with complete refusal to take anything by mouth, touch food or acknowledge anyone eating. Even if she is not all-out refusing, she will take miniscule amounts of familiar food such as a handful of crisps a day. Hardly sustaining! Just over a week ago, we started a period of trying food again. I had forgotten how intense the heady bliss is when your non-eating child willingly takes something. When she reached out for something I nearly fell off my chair and had to hold back tears of relief. Since then, I have tried to capitalise on her curiosity especially in the finger food department and in the last week we had tried:
  • Mummy's chocolate brownie
  • cake crumbs
  • bread (including toast)
  • rice cakes, particularly bright yellow "cheese" flavoured ones and salt & vinegar
  • pizza
  • gingerbread
  • hand cooked crisps (not by me, by M&S). Worcester sauce got the thumbs up, parsnip did not
  • scones
In the last few days, she has also decided to let me spoon feed her limited things (yoghurt, mango, raspberry, banana or blueberry puree) too which is brilliant. Whilst I am over the moon about independant eating with finger foods and expanding that area, I don't want to take away from her ace progress but I will stress when I say "eat" it is far more from a sensory and curiosity point of view than a nutritional or otherwise perspective. The amounts that are chewed, and not always swallowed, are very small and are far more about practising her oral skills. Friends who have seen her put food to mouth simply do not understand the problem. The "problem" is that she might only put one thing to mouth per week if that, and there is no guarantee she will actually masticate, swallow and digest it. Even if she does, we are a long way from her actually eating orally any calories, as the time it takes normally expends more calories than it creates. So if I was to be super-keen on emphasising the calorie side of things (which for the record, I am not. It is very early days, and thanks to the tube we have a nutritionally complete formula which provides all her calorific needs to maintain and increase weight to be able to facilitate hopefully increasing food intake eventually) then the only way to do so would be spoon-feeding purees which she can take a reasonable volume of, for someone not used to eating. On a good day, she can take about 60g (half a baby pouch or jar or a small fromage frais pot) comfortably before she looses interest or gets upset. On a mind-blowingly good day, she can take just under 100g but these are rare and to be celebrated in the extreme! Those sort of amounts and the likelihood of matching those calories are at this point only the stuff of dreams when it comes to finger food or self feeding. But this is why I now love the tube: the pressure is off and it doesn't matter. We have time. We can do it at her pace, and if that takes an age it is ok.

For the time being, we also seem to have her reflux under control which presumably will only help her willingness to try food. She also seems more comfortable in herself and my washing machine is enjoying a longed for break from twice-daily service. I have now been doing this long enough to realise that this isn't a "fix". Refusal and the return of more aggressive reflux may be around the corner. It's sad but true, and I have to acknowledge this. This isn't a defeatist or pessimistic viewpoint although it might seem this way. After the road we have been on with feeding, reflux and tubes to date, I know we are far from the end or even the middle. And it pays to be realistic. It pays to set new goals or everyone becomes upset and frustrated. So if we get through more than one fromage frais in a week and I get my dinner played about with by someone that isn't me, then we're winning. It may not seem much, but to us it's huge. It has taken me a long time to accept this and adapt to realising my baby girl is not as straightforward as I might like but not any the worse for it!

Thursday, October 18


On Monday I had a bad day. After discharge the day before from hospital, the adrenaline that had kept me going through the previous 3 days was wearing thin and I felt anxious, on the brink of tears all the time and exhausted. Exhausted doesn't even begin to sum up how I felt-we use that word too lightly a lot of the time, but I felt so leaden and frankly like I just wanted to curl up in a ball in dark and damn the two year old, the house and the entire world that needed me to do things. Of course I didn't-well, I did the damn the house and ignored defiantly the washing up, pile of dirty clothes and the spillage of coffee in the kitchen. And I didn't take the bins out. Rebel. However dead to the world I feel, I cannot damn the two year old. Because she needs me and no one else is here, and that pesky thing called love and conscience. I simply couldn't and cannot ignore her little face. As much as I would love the block out my ears and sit in the dark all day, she is the reason I keep going even if my movement is without feeling, emotion or motivation. Even knowing I want to ignore her and am too tired to care about playing tears me up with guilt, making the whole things worse. It did get to a point where I just laid on the sofa, whilst she safely played by herself for half an hour or so, tipping every box upside down and cheerily lobbing things across the room. It did her no harm to amuse herself for a fraction of the day, and meant I could scrape a fraction of enthusiasm and vigour together for bedtime. When I kissed her goodnight and told her I loved her, I meant it by then. It wasn't just going through the motions like the rest of the day had felt like.

Tuesday felt a bit better, and Wednesday better still. By today I felt back to "normal", whatever that is. I was scared at the beginning of the week that I was back slipping on the road to a terrifying pit of depression and anxiety and it is only now that I am able to acknowledge just how far in the last two years I have come. Only a little over six months ago, after I very nearly lost the plot entirely and had a brief hiatus from work to recover from a very unsettled and horrible period. In the end, I was made redundant as the company needed a full-time more reliable person which was a blessing in disguise. If I was still working, I dread to think what state I would be in now. Although days are times are hard still too, being at home means I can at least try and give me all to my daughter, not feel like I am drowning or slowly peeling away from the world and all I hold dear. I have written about suffering with PTSD and the secondary depression and anxiety that tagged along with it. This blog turned into a balm in helping me to sort of my jumbled up mind and find some sort of order, rhyme or reason and also importantly to realise I wasn't alone, a freak or a terrible mother. Just a mixed up one that needed to get a little better. And I have. So much better than I thought. I used to have Mondays all the time. I would go through months of Mondays, and even when they weren't entirely bleak my best was never good enough. I used to have panic attacks in groups, cry at the postman, avoid people deliberately and spent the evenings crying or sitting there, numb and void. I still have times when the anxiety creeps up with an unwanted "BOO!" and have to really work to just brush my hair and put on some tights. My care for my little girl might not waver, but it takes only a little trip up for me to let caring for me slide.

I haven't had counselling since April or taken anti-depressants since June. Initially I thought that not having active treatment meant things were fixed but am slowly trying to accept that because my mental health was triggered by very real events that I am still often reminded of, that it will take a while for the anxiety to ebb away and re-train my mind of happier times and less high-alert reactions. The difference is that I now have some basic tools and a better sense of "normal" to help me through rough days, where as before I felt like I was swimming in a huge sea, alone, against the tide. Now I am paddling-I just get out my depth sometimes. But I've got some metaphorical arm bands.

Depression and anxiety aren't quick in and out experiences, but they are not forever. They come in waves like many illnesses. It takes experience, support, belief and a whole lot of laughs and smiles to ride out the tough times. But it does get better. If eighteen months ago you'd have told me I could sleep and even remember to feed myself 3 meals a day and truly immerse myself in the day for at least 6 days out of 7, I might have cried. Or laughed. It feels like I have grown up a lot in that time, but I think it is less growing up and more just my mind growing out. It takes some compassion and understanding to realise it is ok to not be perfect and not weak to ask for help.

Monday, October 15

Not Fair

We all get angry. Anger is part of what makes us human, albeit it a less pleasant trait. We all have tempers which we all loose. Saints excepted. 

At the moment I feel very very angry and frustratingly have nothing to blame or take out my anger on. I'm not even convinced that it is even anger through and through, just that I am feeling close to The Brink again and anger is the nearest emotion to express myself right now. We have just been through another hospital-based saga and I am feeling very tired and very lost.

Obviously I don't want to take it out on my little girl. Neither do I particularly want to take it out on myself.

So what?

Cry hot tears in the shower?

Throw things?



Ignore the washing up and eat cold beans out of a tin?

Stamp my feet?

There isn't something I feel angry at. Just life. Just another 3 days watching my daughter helplessly in hospital when yet again a cold sent her in for emergency treatment. It was the 12th or 13th admission, not counting the countless other times we have loitered about for a few hours having a whiff of oxygen here, an antibiotics prescription there... I am so fed up of how things pan out. So fed up that a cold at 2 years old still equals a few days watching my child struggle. Watching doctors worryingly count her breathing from the other side of the room, lest they upset her and exacerbate the problem. Watching people tick off ideas that may or may not work. Watching her little face in pain, fear and confusion. What is happening now? Why can't I protect you, little girl? I wish I could.

I am fed up of not knowing, not being able to do anything and sick of extortionately priced hospital shops. I am fed up of drugs rounds, of over boiled vegetables and not being at home. I am fed up of being anxious. I am fed up of feeling sick with adrenaline and then not being able to come down for days or weeks afterwards before crashing and feeling so drained all I want to do is curl up in the dark. I am fed up of being catapulted into fear when the machines beep. I am fed up of not knowing what is "the best". I am fed up of seeing my daughter in pain or unwell. I am fed up of not being able to explain to her. I am fed up of being in and out of hospital when there is so much else we could be doing. I am fed up of hospital demolishing my confidence and feeling like it belittles how far we have come. I am fed up of it mucking up worked-for routines that suit our lives and having to cancel both important things and fun things.

It is not fair.

Sunday, October 7


One of the precious things that our neonatal unit gave us was a disposible camera that lived by the incubator. Even in the era of whizzy phones and digital cameras, these were perfect for when you had forgotten or ran out of memory. Even better than that, they were indispensible for nurses taking pictures for you at moments when you couldn't be there or for them sneaking pictures when you weren't quite aware or when you were there on your own and wanted to commemorate a snapshot in time.

I always think of 7th October being the date when everything fell into place and I knew that come what may, I could never ever say goodbye to Wriggles and that however dire things panned out we would just make the most of it with each other. This picture however, must have been taken a few days prior as on the 7th October she started requiring some oxygen again so would have had cannulas taped her her cheeks. There is another picture that goes with this, and in both I look so relaxed and blissfully happy with her in my arms. I'm pretty sure this was taken when the nurse's had changed over to night shifts. Once I felt more comfortable in NICU and less able to leave willingly, I would stay as late as I could before catching a late metro back home.

Being able to look back at these is very special. The first few weeks were so fraught, both medically and emotionally and I really wasn't myself. I remember very clearly repeatedly describing myself as "drowning"; being underwater and not being able to break through to the surface where not just real life but also my real self and feelings were. For what felt an age, I felt nothing but pure shock and really struggled to connect emotionally to anything at all. So being able to look back and recognise that whatever I felt inside, I also obviously had clear signs of being and falling in love with my daughter despite so many concerns. It is so easy to look back and brand things with sweeping statements and how we perceive things happened: for a while I made myself quite mentally unwell by torturing myself with the thought "I will never be able to make up for her early start and for not falling in love at first sight; however much I love now will never be enough". When I read back my special care diary and pieced things chronologically back by photographs, I actually halted any possible not-keeping-Wriggles proceedings far earlier than I thought and then with help was a busy bee trying to make things happen in the best possible way for her coming back with me, which she of course did, just over two months after her birth. What I think of as being a very bleak time was in actual fact little more than two weeks. When I think of how I let those two weeks define almost a year for me, it makes me sad as it feels like I missed out, trying to be some kind of super-brave when all I had to be was myself.

When I look at it now, two years on, I can see a little bit there of who I was to become. Little glimpses of a proud mummy and a woman stronger than I might think or admit. So much of Wriggles' little life has been blighted by worry, fear and very real concerns and wrong turns, that it makes the good moments so much more precious. Somewhere inbetween all those things, we've built up a happy solid little life. It may not be all singing and all dancing, but it's ours and I love it. And I think somewhere in this photograph is a sense of belief that it will all be alright in the end. 

This doesn't look to me like a mother preparing to say goodbye, this looks like someone treasuring what is to come.