The New Teatimes

After last week's ultimatum on the eating things front, I have been doing a lot of thinking (and encouraging of biscuits). I do "get" the problem and seriousness of the issue at stake, but I am loathe to chuck a lifetime of being taught about good eating habits out the window. Am I being naive? Is this "for the sake of a few pounds and ounces" attitude in fact not facing up to the severity I am presented with, or am I making a big deal about what should be a no-brainer: doing the best for my daughter. The trouble is, in this arena I don't know what IS best for her. My gut instinct, my protective instinct says not a feeding tube. Continual changing of an NG tube would only be enforcing trauma I'd imagine, especially on a child with a proven track record of being very sensitive to procedures and it impacting on her feeding and sensory acceptance. Any child would quarrel about having something put down their nose, but on one that has already endured more than she should, it just seems cruel. Which leaves us with PEG feeding, or a gastronomy button. I am nervous about Wriggles having an operation; going under general anaesthetic on a ventilator. I know she is older now, hardier, sturdier, more robust, but it still fills me with fear. She is my baby, after all. So that leaves lots and lots of eating. We will soon be switching more high calorie nutritionally complete milk to super-high calorie nutritionally complete milk which we are all hopeful will make a difference. Although they have improved indescribably, Wriggles' eating habits are still so pitiful to attribute to her weight gain, that we have been told we will have to rely mainly on the milk for increasing her weight. Obviously whatever (fortified!) solids I can get into her will be a bonus and only enforce a positive image of feeding for her, but the message was that the focus should be on the milk and calories, calories, calories.

I am struggling now.

It seems so counter-intuitive. But is that because I am subconciously comparing Wriggles to other babies who have had the good luck to tread a more straight forward path? Am I not accepting that we need a change of tack to make some headway to get her onto that path? Am I somewhere just digging in my heels in the desire to have some grasp of normal that I know and understand, when we have deviated somewhere else? I no longer know at all.

The problem is not Wriggles being small and light. She has never been huge, and both sides of her family are on the short and slight (well, a bit wobbly round the edges once cake is discovered) side, so that doesn't concern anyone. The problem is that she is seeming to struggle maintaining weight whilst becoming mobile and exploring food. Both these things are to be expected, but the unexpected twist has been a continual slide from centile to centile. One, is a shame. Two is more frequent weigh ins. Three is really taking the biscuit (I wish!). She is pretty much the same weight she was six months ago, despite taking in more calories overall. If mealtimes (any food and milk combined) took any longer, they would quite literally run into each other. If I limit them, she does not get nearly enough to keep her going and snacks run into snacks running into meals...you get the picture! She has always struggled with volumes, which is were it makes sort-of-sense to think about an overnight tube top-up feed.

What would you do? It seems so funny just when we are beginning to have a breakthrough in curiosity and acceptance and dare I say, enjoyment, of food, to sideline it for the high calorie drink. Concentrating on milk, as opposed to exploring solids in a growing child seems just so topsy turvy. The food aspect is limited as Wriggles still struggles with so many textures and although is gaining in curiosity, will not entertain a vast number of foods. Cheese, marscapone, cream, avocado, nut butters, oil...so much I still have had no success with. Not that I am giving up that easily! So far, the best success we have had is buttered hot cross bun and a sweet potato wedge (just the one. She takes VERY small mouthfuls). I have a list of ideas longer than my arm to try, it is just finding one, or maybe more, that sticks. Wriggles, would eat crispbread or Quavers until the cows came home, but unfortunately they are mainly air!  
Would having a tube allow us more room to manoeuvre with food? Knowing that by hook or by crook, the precious calories will go in, will this free up time to play and explore food in the daytime? To take the pressure off? Or will this confuse the issue by meddling with natural hunger and feeding patterns? My other hesitation is forgetting about healthy. I don't want to "fix" this with say, cake, only to have the issue drawn out years down the line trying to then get a 5 year old to look a pea in the....erm, maybe not exactly the face. My current compromise is a full fat yoghurt or custard accompanied by fruit or a fruit/vegetable puree! But again, am I just not getting it? Are the medics being too cautious or am I not cautious enough? She is still (just) on the growth chart. When is the cut off point when enough is enough? Are we really staring it in the face? How can we be when she is still so full of beans?!

Any advice would be gratefully received. It seems so complex to me and yet to the doctors is so very black and white. I am hoping against hope that these mad ramblings turn out to be just that; ramblings of someone with an overactive brain. There is every chance that we might just stay on that curved line on the graph and buy us some extra time. Better still, Wriggles might prove them them wrong again. Maybe, just maybe, Wriggles will develop a goat-mentality overnight...

Comfort

Wriggles has never been a massively cuddly girl. She has never particularly had a "favourite thing" either above anything else. The plus side of this is that that is one less panic when out and about (HELP I've lost so and so...and they've stopped making it!) but it does make me a little sad. I had a menagerie of stuffed animals when younger and always had one that trailed around with me. Even as a baby, I had favourites whose noses I chewed until they fell off (sorry Piglet).

My favourite of Wriggles' toys is Mouse. Mouse came on day 3 of Wriggles' little life and came as our guardian rodent that sat by her incubator day in, day out when I couldn't be there every waking or sleeping minute. When she moved into a heated cot, Mouse seized the chance and jumped in to, and has also slept in her bed since. She would have moved into the incubator had infection control not frowned on it! Mouse means such a lot to me, having "seen" with her stitched eyes everything I did and more. To me, she is part of the Beginning, which to look at Wriggles now can be easily forgotten about. Partly, I cannot forget it and partly I am desperate not to, as those early days shaped so much and when I brush the tears aside of the grief, trauma and unfairness of it all, I am so proud of how strong and brave my little girl is.

As well as Mouse, Christmas Hedgehog and Eloise-the-Rabbit also still sleep in her cot with her. These have both enjoyed brief dalliances with as being The Chewed Toy of the moment that would get flung about and piqued more interest than anything else. I suspect in time, they will be favourited again. I love the idea of having bedtime friends that are special to fall asleep and wake up with; a little separate world different from the frantic pace of the daytime.

I still have my own comforter; the filthy cat in the picture is mine that sleeps in by my bed. When Wriggles comes in to sleep with me or when she is poorly she often has the cat to chew or wallop. As it is quite old, it's limbs are a bit all over the place so perfect for "flying lessons" or holding onto tightly. It really needs a wash, and has lost all but one whiskers but neither of us seem to care. I love seeing Wriggles with my old toy-it is like it has come full circle in a way. 

Dear NICU

Dear NICU,

I am angry. So angry. I know I shouldn't be but there are so many things I want to say to you. Maybe it's not healthy nearly 2 years on but I need to get this off my chest.

You denied me my role of motherhood. You took away my basic rights as a parent. You can SAY I'm still the mum, but how was I really being a mum just sitting? Sitting and staring. Watching and waiting. That's not parenting.

Do you know how demeaning it is to ask for permission to touch my baby? Not even hold, but touch? And when told, albeit gently, no not now, no not today, how you snapped my fragile heart and stamped over it before brushing it aside for dead.

How patronising and sad it is to have cuddles put on a rota, as if it was another chore to tick off. 15 minutes a day; 3pm after cares.

How I felt as small as a gnat, no smaller, as worthless as a flea because I wasn't breastfeeding. I couldn't even do that and you didn't care. You didn't even say, don't worry because it wasn't important as long as my child grew.

You smashed every one of my dreams and preconceptions of my first child, my baby I will never ever recover or now live. My innocence was lost within hours. It doesn't matter if I go on to have another baby; I will never get those hours back with her.

You were rubbish at sharing. All those weeks and I could only visit. Every night I had to leave. Every night I had to leave my baby with someone else. Someone very kind and very skilled but a stranger. Every night I had to accept that someone else would comfort my baby because I couldn't be there to do it, and might get to hold her precious hands while I wasn't allowed.

You had the most important job in the world looking after tiny vulnerable beings that were each the centre of someone's universe and yet you had no compassion. Day in day out some babies would get sick. Worse, some might leave this earth. Why didn't you do something? Something more?

You weren't me. You might have cared for my baby but you will never love her and you took her from me when she needed love the most.

Kind regards,

but maybe not that kind,

Mouse

ps. By the way, thanks for y'know, saving my baby's life and looking after her. Thanks for giving her the chance to live so we could both be happy today. More than happy. Um. Maybe you could just ignore all of the above?

*screws letter up and throws it in the bin*

Sigh.

25/52 a rare moment capturing the toddler sat down

Choosing to See

One dilemma for parents of ill children, particularly very young ones, is choosing how much to watch with the consent of the medical team; how long to stay and when to leave. As well as being there for your children, you have to protect yourself as you are the adult living with the knowledge, the memories and the decisions.

I was watching the fabulous yet emotionally wrenching Great Ormond Street on BBC 2 this week about pioneering and experimental surgery. One brave set of parents were asked an incredibly difficult question: if an operation was going wrong, would you want to be brought into the theatre to be with your child? I have never been in this exact position, but I have been asked a similar question. When Wriggles was in Intensive Care and had her cardiac arrest, one of the doctors who wasn't doing life saving procedures gently suggested I might want to leave.

I didn't.

"Are you sure?" a nurse gently asked. "It can be very distressing."

I stayed. To her immense credit, my best friend who had happened to be sitting with me at the time, stayed with me. I'm not sure I could watch someone else's child go through that.

Although since I have been haunted by the memories that have been fiercely burnt into my mind, I don't regret it. Some people might see it as rubbing salt into a wound, of doing further harm to yourself, of not looking after yourself. It is a very personal thing and one that I think can only be truly decided by the exact circumstances in that exact minute, and the severity and gravity of the situation. Obviously your own beliefs also play a part and your knowledge of your capabilities. 

When Wriggles was is NICU, I preferred to stay with as many procedures as they would let me. I stayed for the head scans, the retinopathy exam, the blood tests. I stayed when they had to stimulate her at times if she lost colour and had apnoeas and bradycardias. I don't think that this makes me a better person than someone who couldn't stay at all. Everyone knows what is best. In NICU, a large part of staying for procedures stemmed from a sense of guilt and a very precarious mental state that I was in. Yes, of course I wanted to stay for Wriggles' sake but also I felt I had to. As I have written about before, the very early days were a minefield that were dictated by pure shock and with no roots in emotion or rationality. The guilt from this once it passed was horrendous and taunted me that however much I loved her, I could never make it up from the ambivalence of the first days. Of course this isn't the case. I know now that shock and trauma breeds automatic responses that don't reflect love, passion, family, memory or truth. I became a little obsessed with the idea of staying by her as a mark of my devotion. Luckily, I didn't see anything too horrible and was rewarded by being able to sneak extra cuddles as compensation. Had our journey been far more rocky, it could have been a different kettle of fish so close to that time.

Intensive care at 6 months old was a different situation. I was mentally a lot more "with it" and had allowed myself to fall hopelessly in love with my daughter whom I had cared for, for four months since discharge. I didn't have the same conviction that leaving the room was the equivalent of deserting her for good. However, I still stayed throughout the ups and downs. This was very different though: in NICU, she was very sick and very fragile from prematurity. But, aside from the first week of her life, there wasn't a point that either the medical staff or I believed her life was endangered. Vulnerable, yes. Developmentally uncertain, definitely. But on the absolute brink? If anyone thought so, they never said. In intensive care though, she was in a very critical position. At the beginning of the stay, although I wanted to be with her, with persuasion I could walk away and sit next door when they intubated, x-rayed or took bloods from her. At this point she wasn't yet critical so I was confident that I could come back and she would still be there; be mine. The ties became much stronger over the coming days as she became sicker. By day 4 of PICU when she arrested, I was thrown into the dilemma: do you want to watch? 


There was no way I was leaving then. If, in that split second as I had to acknowledge, I might loose her then I wanted to be with her. I wanted the person that loved her most to be within touching distance if the unthinkable happened. It's a funny parallel: you simultaneously never give up hope and believe stronger than you have ever believed in anything in that moment, but at that same time, you have in your face the very real fact that life is hanging in the balance. It is like being on a tightrope, but hugging it tight, so tight as if you will never let go and that is what will save you. I felt the same when my dad was critically ill a few years prior-you don't allow yourself to project that life will cease but yet you know it may and the fact nips on your heels as you run on, believing in love and life. And this is the point where only you can choose what to see. Some people will need to stay; some will equally need to go. There is no wrong and no right. One parent may need one thing, and one another. Each may have regret afterwards, but that will vary massively on the outcome.


We were the lucky ones.


One minute thirty seconds.


It could have been so much longer.


It could have been so much quicker.


It could have been a different story altogether.

Could I do it again? I hope against hope I will never ever have to. It is not something I could ever forward-plan. Ours was a one-off episode and thankfully Wriggles has never been that severely ill again. Yes, poorly, yes needing support, but never like that. Watching and listening to stories of families that live that state for infinitely longer was utterly humbling. Both the children and their parents have strength beyond anything you imagine when your child is first placed in your arms, or through an incubator porthole. Love is a force that truly is incredible.

Messpot

Last Chance Saloon

Today, we had our review with our dietician, Lovely Ruth. It had been a few months since we saw her and although I had the familiar butterflies, I was largely very confident with the progress Wriggles has been making with trying out new foods, textures both orally and otherwise and her acceptance with mealtimes generally. She has made huge strides with her oral motor skills this year, learning how to chew and push food around her mouth. I hoped for at the least a gold star!

In the weighing room though, I began to catch a whiff of reality as they furtively plotted her height and weight. I knew from regular weigh-ins at baby clinic and the fact her ribs have suddenly got visible that although she isn't consistently dropping weight, that her weight is very unstable. I tentatively asked how the dreaded graph was looking. She has dropped another centile, in weight and also in height for the first time.

Although never exactly beefy, I used to have a vaguely chubby baby. When we started out weaning, Wriggles was quite healthy looking and cheerfully sitting around the 50th centile. Even after her intensive care foray, she still stuck not too far from there. Even after the dreadful summer of hospital admissions, she didn't stray stupidly from her line, and sat around the 25th centile mark with her height nicely matching up. No one was really overly bothered about the chart at this point. She wasn't doing anything overly silly, although no one was quite listening to me about the lack of eating anything. Ironically, at the height of her reflux when she was vomiting large amounts nearly every feed, she was around her heaviest.

And then, bit by bit, it all began to fall away and over the last few weeks I began to uncomfortably notice my child is resembling a xylophone. I know part of it is that she is growing up and loosing the baby features and also is a lot more mobile and full of beans. But to keep being full of beans and keep her development fuelled, she really needs energy. And energy, as my biology lessens taught me, comes from food. She is already at a disadvantage with slightly dodgy lungs thanks to prematurity, so she needs even more energy than your average mad toddler. Ideally when your baby or child is learning to eat, it helps to have some weight to play with as they might yo-yo whilst dropping milk feeds to accommodate food and tasting through things finding out what they may or may not like. Unfortunately, this is where we hit our snag. Sitting at the bottom of the blasted graph, we now has no weight to play with and an all-too-well documentation of having "no reserves." And thanks to acquiring a dietician and a very interested paediatrician, now the graph does matter and we are very much on the radar of the team again. We now have to make 'plans' and have 'options'. And I'm not just talking choosing lunchbox items.

Excuses

Of late, I haven't been blogging so much. Or rather, I haven't been posting as much. I have started writing most nights, but either words or paragraphs in, something pulls me back and I press delete or mark it in my drafts folder, which realistically never comes out again. It's not that anything particular has happened or gone wrong, I've just felt a bit "meh". After my month off work, I felt so much more settled and on top of the world. Since returning to work and accepting redundancy, I have been, to put it politely, all over the place and a bit sorry for myself. Partly, a parade of bugs that are never quite bad enough to keep either of us at home hasn't helped and neither has Wriggles' sudden toddlerdom of tantrum throwing or sleep regression!

When I started this blog, after reading others that either amused or inspired me, it was for me to use both as therapy to get over the bad memories and to make good memories. When it started, Wriggles barely ate and we had spent about four months constantly in and out of hospital between which I would go to work...only to be in hospital with Wriggles the day after or sometimes, hours. However, things were showing signs of improvement and I was hopeful that our journey might be looking more straightforward. Quite quickly, it became apparent this wasn't too be the case. Although things have been up and down since coming out of NICU, I've always been very aware how things could be more complex, more limiting. But a small part of me, the regular mum bit, not just the ex-neonatal-mum, has also been aware how much simpler things could have been.

24/52 Mad Toddler Hair

Angel

Over this year, I have got involved in fundraising and awareness work with Tiny Lives, the charity that supports my neonatal unit. The project I have been working on recently, is a commemorative quilt to hang in the unit that has squares dedicated to nearly 100 graduates from special care as well as numerous sponsored buttons from friends, relatives and well-wishers. As well as seeing all the parents and staff delighted with how the project is going, the sad bit is when babies don't and haven't made it. NICU is a turbulent place, and the sad truth is that babies can go downhill in a matter of hours. Sometimes a problem increases and sometimes it can come out of nowhere. Some of these babies may have been born critical, some may have had congenital and underlying health problems, some may have contracted an infection, some may just not have been meant for this world. Baby loss is a heartbreaking subject, and one I would never do justice to having never experienced it personally. I can sympathise, but not empathise however much I may like to. These parents have had the hardest thing in the world and are nothing short of heros and heroines.

Warning: Contains Sick

I am sick of all the sick.

I have scrubbed my carpets better than Cinderella ever could and I can still smell it. 

On my fingers, washed a thousand times.

On our clothes, washed again and again and aired in sweet fresh air.

In Wriggles' soft baby hair, washed as many times as she'll let me.

The sickly smell of regurgitated vanilla peptide-milk has seeped into my consciousness and is following me about.

At work or with friends I become paranoid others smell it too.

Every time in public that Wriggles' hiccups, I tense. Is another fountain coming?

Did I pack enough spare clothes?

Have I got a muslin or tea towel?

If not, why an earth not? Stupid mama.

How pissed off is this swanky art gallery going to be? (Actually didn't bat an eyelid.)

Slightly, Wriggles is too over-friendly with the rounds of viruses. Mostly, she has a very sensitive gag reflex and still at 21 months is plagued by reflux.I am pretty sure the gag reflex is strongly linked with reflux, which has besieged her since term.

"Reflux is what happens when your baby's stomach contents come back up into his food pipe (gullet or oesophagus) or even into his mouth. The long name for reflux is gastro-oesophageal reflux disease.

Babies get reflux because the muscular valve at the end of the food pipe, which acts to keep food in the tummy, hasn’t developed properly yet. This means that when your baby’s tummy is full, food and acid can come back up. This can cause him to bring up small amounts of milk (possetting) or even vomit.

During the first year of your baby's life, the muscular valve gradually gets stronger and better at keeping food down, so his chance of having reflux decreases. About half of babies will get some reflux during their first three months, but it’s only a real problem for a small percentage of these. By 10 months only about five per cent of babies have reflux," from Babycentre.

Oh dear. Once again, we sent to have fallen into the small pond of percentages making us ever so slightly different from those all-hallowed baby books. Wriggles has always had the vomiting variation of reflux. Projectile vomiting at that. She can easily aim halfway across a room. One of my strongest memories from her 'newborn' period was when she was term plus a few weeks, one friend who was visiting came in and sat on the end of my bed. She was still wearing her coat. She opened her mouth the speak and bleeeeeeeeeeeugh-Wriggles managed to get her dinner in the coat pocket. We can laugh about it now. To her credit, my friend could laugh about it then, once she had gotten over the first few seconds of being stunned. She even (sort of) continued laughing when she had to wear her coat into work the next morning.

It took a long time to get a GP or HV to take me seriously about the reflux. It even took a while to persuade the neonatal consultant we were under. In fact, it took over seven months and changing doctors surgeries to get anyone to listen, and then it clicked with the consultants. The difficulty feeding, the recurrent chest infections, the coughing... Possibly because she was vomiting large quantities several times a day, and as a result of the irritation was producing large amounts of mucous, which really wasn't helping her already impaired scarred lungs.

The first port of call for most babies trying medication to control reflux, is commonly an antacid such as Infant Gaviscon. They reduce the acidity, so even if they do not decrease to occurance of reflux, they should reduce the pain and discomfort. Infant Gaviscon helps to thicken the stomach contents making it harder to force their way up. Side effects include constipation, which Wriggles already had and was made worse. Gaviscon did not suit her at all, so off we trundled back to our New Favourite Ever GP. Infant Gaviscon does suit a lot of babies though, and for many will control the symptoms. It can be used if you are breastfeeding also, if added to a small amount of water in a bottle.

The second medications we tried were an H2 Blocker (or H2RAs) and prokinetic agents in tandem with each other. These were both weight sensitive so needed reviewing regularly, but finally began to do the trick. Week by week, although the reflux was not eliminated, it was lessened. We were able to go from about 60-70% of feeds coming back up to maybe once or twice a day. It was still far from this posseting I have read about, but my washing machine could at least draw breath!
H2 Blockers, such as ranitidine, act in a similar way to antacids. They reduce production of stomach acid so what comes up should be less and hurt less.
Prokinetic agents, such as domperidone, are used to treat nausea and vomiting in adults. It also helps the stomach contents to move more quickly into the intestines. Prokinetic agents help formula fed babies most and those on solids, and breastmilk is digested quicker anyway.

If none of these make a significant difference, there are PPIs or proton pump inhibitors which we eventually ended up trying when the oral aversion and still-ongoing vomiting was affected her weight and intake of solids (ie. none) and milk, which was unreliable. Omeprazole or lansoprazole are often prescribed and can be in a liquid form which has a very short shelf life and is hideously expensive, or more commonly MUPS-a water-dissoluble tablet. The plus side of MUPS is that the strong medicinal flavour and odour is removed: the downside is that as in many soluble medication, it is never 100% and so you can be there stirring the solution until your arms ache like billy-oh to ensure a correct dosage. It is also easier in tube-fed children to use liquid, although certainly not impossible to use the tablets.

If reflux is ongoing, it could be worth checking that it is reflux and not a Cows Milk Protein allergy, as symptoms can be similar. If you are formula feeding, you can request to try either a lactose free-formula, soya formula or hypoallergenic formula such as Neocate or Nutramigen. If your baby is on solids; try cutting out dairy products making sure to replace them with appropriate foods for a balanced meal plan. Parents should be able to request a meeting with a paediatric dietician if their HV cannot give them full information needed. There is an ever increasing market of dairy and lactose-free items; it just takes that extra five minutes of label reading in supermarkets or some ingenious recipe scouring of which the internet is a goldmine. Soya intolerance or allergy is also not uncommon in babies, so it could be worth considering this. If you are breastfeeding, try cutting things out from your diet to see if it makes a difference and keep a food diary. It will take a few weeks to work, to get all the proteins out of the body's system so if you or your doctor suspect this, you may have to be patient and give it a while. Working with our paediatrician and sanity-saving-dietician, I tried Wriggles on a dairy free diet for three months. It made a very slight difference to her stools, but not to the vomiting, chestiness, feeding ambivalence and her weight gain plateaued then wavered. With the blessing and encouragement of our dietician, Lovely Ruth, we gave this up and switched to a high calorie peptide milk with lansoprazole which we have been on for the last seven months.
And all was well. Most of the time.

The vomiting and chestiness reduced, and with a sigh of relief, we began to think we had seen the back of the big, bad Reflux. The main problem we were left with, was a very sensitive gag palate. Sometimes, all it takes is for something to touch Wriggles' lips and she can be sick. Now she is older, I do think a small amount of this is psychological behaviour, but for the most part, she goes eagerly to complete a feed or try something and it is heartbreaking then to see her enjoyment and hard work come back up all over the pair of us. Watching her retch over and over until there is nothing but bile and mucous is really unpleasant-emotionally as well as physically! My poor bairn. Teething and bugs always make it far worse, and I suspect this current resurgence we are in the middle of is fighting off a plethora of bugs that she is meeting in the temporary nursery she is at for the last week. Roll on the end of June!

Other things you can try include using a wedge or creating a slope for your child to sleep on (think several Argos catalogues and Yellow Pages), frequent winding and little and often feeds. Also buying really nice smelling soap to make bath times more relaxing to give that dreadful sick-y smell a good seeing off-the same applies for investing in pot pourri in the living room. And take a look at Living With Reflux: a fabulous charity dedicated to supporting those people through the difficult time when you appear to have morphed from mother to Mrs Tiggywinkle and is full of supportive similarly-frazzled parents with tips for understandably-frustrated babies and to just soothe your nerves as your HV shrugs it all off. Again. But keep trying with doctors if you believe it really is affecting your child; arm yourself with information and don't give up. You know your child best and know what goes on everyday. Babies need a spokesperson and you need a night's sleep!

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.

My girl?

Plop.

Through the letterbox came the written report of the last appointment at 15 months corrected with the paediatric team which had gone fairly well. They were happy to leave it until around August, just before Wriggles is 2 and seemed content that I was doing all the right things and generally being a Good Mama.

"...at clinic, Wriggles was quite happy playing on the mat and was reluctant to go back to you [me]."

Bang.

Like a dagger to my heart.

Inside I crumpled up again, momentarily back swimming in confusion, hurt and rejection. 

After I got over the initial struggle of NICU coming to terms with my very new, very surprise and very vulnerable little scrap in an incubator, I fell in love. There was never a question over that. The struggle I had was accepting that Wriggles felt anything in return for me. This struggle was a very long one and took many session of counselling, many cuddles and many many months (I would say well over a year) until she started blowing me kisses and hanging onto my leg.

 

Parenting is a very unique relationship that breeds unconditional love from the responsible carer towards their dependents. And it is always assumed that this love, in a different more taken for granted way, is returned by the children. At it's least sentimental, because in most cases, the child knows no other parents and no other love. It is the first relationship, and hopefully most long lasting and simplest yet most complicated they will ever have.


When our minds play with our confidence, cruelly, we question even these most basic facts. Whether she knows what love is, I am Wriggles' constant and the person she is with by far the most. I am there morning, I am there night. I am there in the middle of the night. Just me. Just us. I am there in sickness (either of us) or in health. I am there in good spirits and there in a grump. So knows that. As my friend V pointed out recently while Wriggles was blowing kisses to her, she knows what kisses are and distributes them so freely because we have such an affectionate relationship and to her, kisses are the norm, because she has always got them. What a lovely innocent world.

I know the report was not in any way criticising me or suggesting my daughter is indifferent, or worse, doesn't know who I am. It's my fear shouting over my rationale and that if she didn't know my world of security and comfort, she would be fearful to do any venturing. It's just that my (not so) secret fear is that deep down she doesn't understand who I am, and running on from NICU thinks that the entire world is her family, happy to embrace and be caressed by stranger after stranger taking my place.

When I first discovered the world of blogging, particularly those with a premature baby aspect, one of the most important posts I read was this one by Beadzoid. It very much spoke to me and in my dark moments when I felt very alone, offered a chink of light that someone had had similar worries to me, and if they hadn't been certified then I wouldn't either.  

This week, Wriggles is in temporary childcare; not an ideal situation but a necessary evil as she will only try and eat the printer at work. She has started to cry when I leave and I am told, stand by the stairgate for a while after looking out. It breaks my heart and I smother her with guilty kisses on return. You do care. I'm so sorry I doubted you. I'm not leaving you. I love you. The minute we are home, she scrambles away to explore new worlds and hoot down toilet rolls. Then out of nowhere gives me a big hug or grabs my hand. Then the spell is broken and she is off again, but I am revived.

Oh, to be a parent. You just can't win either way.

Then and Now

Then.

 

I miss looking into your screwed up squished "term" face, seeing glimpses of features yet to come.

I miss your snorting and snuffling through the night: you sounded exactly like a hungry hedgehog in the undergrowth!

I miss being able to be still with you; just watching and waiting for nothing.

I miss your napping, curled up on my chest. Now if you consent or are allowed to sleep on me, you are more lolloping starfish than a little dormouse.

I miss your whole tiny hand being still almost too small to hold just one of my fingers-and I have tiny hands myself.

I miss, in a wierd way, you grabbing my hair and getting tangled up in it. Things I thought I would never say.

I miss putting you down in one place and knowing you will still be there, albeit a bit lopsided in two minutes time!

I miss at least two naps a day.

I miss that utter dependence on me.

Now.

I love it when I carry you around, and you cling on tightly with your fists and wrap your arms around me like a bushbaby.

I love that you have such a personality and a huge range of expressive faces. Even your stuck out bottom lip cracks me up.

I love that you give cuddles back. When you reach out it is The Best. Thing. Ever.

I love it when you try to pull yourself up by pulling on my trouser legs.

I love it when you "bring" me a toy (normally thrusting it up my nose) you want to play with, or better still, want me to play with with you.

I love it when you copy things and do actions. You are so sweet when you hit yourself on the head with a hairbrush ('brushing your hair').

I love seeing you get excited: bet it about the swings, a train, Mr Tumble or coming home after a long day.

I LOVE it when you blow kisses.

I love it when you curl your fingers around mine.

I love that your understanding is growing each day.

I love that you are such a daredevil and scared of nothing (except possibly eating and our friend Leila's hippo torch).

I love it when you are with other little children and I can see you trying to work them out. And then trampling on them-must sort that last bit out.

Oh me lads...

Blaydon Races painted by William Irving, 1903

Yesterday I decided to get into the spirit of Wriggles' acquired Geordie heritage and join in the celebrations for 150 years of the famous Blaydon Races, written by George, or Geordie Ridley. He wrote and performed the song in 1862, first singing it in the music saloon at Balmbras which was also the place where people would congregate before setting off to see a horse fair at Blaydon race course. The ballad tells of a fairly fictional event of a bawdy bus ride along the route, but the characters and places mentioned in it were are real and can be traced today. The Blaydon Road Race, as is more familiar today, has been going since 1981 and happens annually, as the song states "on the 9th of June". The song is often referred to as being the Geordie 'National Anthem' and is one any friends from the North East can recite by heart whether they like it or not!

The amassed crowds

One of the many events scheduled around Newcastle and surrounds, was a day of music and celebration by Grey's Monument organised by the Sage Gateshead, our outstanding centre for music. Amongst performers, the County Durham born Graeme Danby, one of the stars of the English National Opera would be performing both the traditional ballad and a new version for 2012, with lyrics compiled by the listeners of BBC Newcastle to mark the changes that have taken place in the 150 years. It was really quite heart warming to see hundreds of people gathered of all ages out of a warmth and pride in the song and the strength of both community and identity in this area. When Graeme Danby was performing the new song it was such an atmosphere; the hairs on my neck stood up and a lump came to my throat as the crowd bellowed along with the traditional choruses. Everyone clapped and cheered along, and any of the musicians who were not on stage just started up in the crowds making for a truly special performance. A variety of talented Northumbrians played throughout the afternoon, and then at the end of the day, everyone came together again for the traditional and much-loved song. Song sheets were handed out to the crowds, and a sense of anticipation was crackling. It was as if the earlier song was forgotten; this was what it was all about, the history and heritage of these people. At 6pm, the 4000 amassed runners started the race from Bigg Market, Newcastle out to Blaydon and celebrations ran on into the night.

Rather like the Jubilee, I was highly sceptical about the whole affair and put it down quickly as not my kind of thing. I had heard the song bellowed by football fans and although appreciated the painting, was not very keen on it. I thought it would be a good day out for us though, and that Wriggles would enjoy the music and that it would be something to tell her about as she gets older, especially if we stay here and develop a strong sense of place. After all, it is not always 150 years of anything everyday, far less with a concert attached to it. I may have a slight Scrooge-attitude to many mass events, but I am determined not to let that spoil my daughters fun and innocence. If I have to shut up until she can make her own mind up, so be it! But, like the Jubilee street parties, I was pleasantly surprised and swept away in the cheerful and friendly nature of it all. I actually found it slightly emotional; the strength of the celebration in belonging and history. My father has always been fascinated by under-told history, like folklore and things passed orally, particularly song, in communities and families and it is not until I had Wriggles that I appreciated the importance of keeping small fragments alive and treasured, as somewhere down the line if not all the way along, someone will be fiercely proud and engaged in their history.

Race down Collingwood Street

I was born and raised in the South East where no one seems to give two hoots about where they came from. I certainly feel little allegiance to where I grew up. Fond, yes, but unless I specifically believe in something like some of it's services or a place, then I wouldn't go out of my way to stand up for it. Traitor? Who knows. Moving up north, one of the biggest surprises was the fierce pride that people have in the North East. There is really such a sense of people pulling together and celebrating and safeguarding the history, traditions and culture around it which is wonderful especially in an over changing world. Whatever people think about how things are today and the differences between the new 'culture rich' Newcastle compared the the industrial city famed for far more working class fare, they refuse to let the past lie forgotten. Even if much of the city is now unrecognisable to the past, especially for a newcomer like me who has only ever seen the product of a huge regeneration project, it will always be remembered and both the community spirit, independence and sense of place will always linger in families.

My Hinny

Altogether now....

 "I went to Blaydon Races
Twas on the ninth of June
Eighteen Hundred and Sixty Two
On a summer's afternoon
I took the bus from Balmbras
And she was heavy laden
Away we went along Collingwood Street
That's on the Road to Blaydon

Oh me lads, you should've seen us gannin
Passing the folks along the road
And all of them were starin'
All the lads and lasses there
They all had smilin' faces
Gannin along the Scotswood Road
To see the Blaydon Races..."

23/52 Tidyed up

Uninspired: our week

In the "Big Girl Chair" for a rare moment

Art Attack

My Little Princess

"Hmmm how much mess can I make...?"

Wherever next?!

A Day of Two Halves

If ever there was a day of getting out on the wrong side of bed, today was it. I only have one side of bed, but obviously today it was Wrong. 


I had a rare lie-in until 08:20 (thanks Wriggles!) but awoke in grouch-mode and it got worse and worse. I intended to get ready early and go out before 10 to take Wriggles to soft play before lunch in the hope of tiring her out a bit so she might re-take up napping in the daytime and thus start sleeping a bit more normally at night times. Partly due to the rain and mostly due to my ineptitude, we weren't both ready until gone 11. Wriggles was driving me up the wall, only content to throw everything off my bookshelf constantly ad shriek at me if I dared correct her from reading books upside down (not a deliberate attempt to spoil fun: she can and has for months read them the 'right' way and now her upside-down-and-back-to-front method is very rough, breaks the spine of all the books and thus makes the pages likely to fall out. She has developed superhuman strength and can easily destroy a board book) or suggest that she could do something, anything, other than book flinging either with or without me. I discovered I had missed a series of payments on things so had to do some organising and grovelling which is never nice, and finally wrapped up a parcel to post to a dear friend who is having a baby shower this weekend, which I cannot afford to go to (WHY do airlines charge practically an adult fare for infants who will after all, only be sat on your lap with no luggage?). There wasn't a proper reason for getting cross, especially with Wriggles who after all was only being a toddler, but I found myself getting increasingly wound up and stressed with everything. The washing up pile haunted me, reminding me that I was rubbish at doing things when I knew I should and I felt tired and a bit overwhelmed by just life.

By the time we left, it was pouring down but I could not stand to stay inside. I know from prior experience, being couped up with a full of beans Wriggles in destroy mode is not a recipe for a happy day. We had a nice hour where we go some jobs done, called in on our recently retired childminder who was delighted to see the Wriggly one and had some lunch . Then the trouble brewed again as I tried to persuade the baggy-eyed and yawning child to have a nap. Just five minutes (or preferably twenty if you're asking). She looked sleepy. She has until very recently, had a hour or longer nap after lunch to recharge her batteries. This has suddenly turned into a battle meaning by 5pm she is a whining and exhausted child and bedtime is frankly a miracle when it eventually occurs. We walked around the park. We walked around the park again. We had some top-up milk. We walked around the park some more. In the rain. An hour later, with a very frayed temper I gave up. 

It is very rare I am grumpy with Wriggles or tell her off seriously. I do employ "No!" at appropriate moments ("NO Wriggles do not turn the TV on or off/grab plug sockets/climb onto the toilet/throw your dinner on the floor") but partly I've never really had cause to tell her off and partly I'm terrible at it as I instantly feel terrible. I'm not talking about dodging discipline, but shouting for the sake of a bad or frazzled mood over something that doesn't warrant that level of reprimand. I know it was wrong to snap at her, but snap I did. What with working and managing everything on my own from baby things to finances to the sodding washing up (where, where does it come from!) when it gets to the end of the week, a hard week of sleep regression, a frustrating previous day at work, then to be honest I need Wriggles' nap as much as she does. Just to get fifteen minutes or so to me. Just to sit down without guilt and breathe a sigh of relief. Just to know that the whining will almost-probably be cut out later. Just to have a cup of coffee that is still hot. Just to stop being two parents rolled into one with eyes in the back of my head and enough patience to shame a saint, for a tiny tiny fraction of time. I was cross and I told her off. I'm not proud of it. At all. But it was that or burst into tears. Needless to say, it did nothing. With defeat and now over an hour lost, I gave up and chalked it up to my list of failings and headed into soft play. As I paid the entrance fee, I knew full well that she wouldn't last the two hours it gives you but by now we both needed somewhere neutral and shrieking friendly.


And actually it did the trick. I chilled out and relaxed especially as Wriggles clambered over me. Seeing her cackling away to herself trying to climb the wrong way up the slide reminded me why I love her completely. I helped her perfect her clambering skill, which I suspect I may regret. It was rather hot in there, and as time passed Wriggles began to concern me slightly. She was getting very sweaty and clammy; I removed her t-shirt and clipped her face back. She was still very hot. In horror, I watched a bright rash spread across her arms and chest. It was very red and very spotty. Whether fever or heat rash it was hard to tell. Gradually it faded as I tried to cool her down and my bed time it is as if it had never been there. It is horrible moment though when your heart leaps into your mouth and panic is suddenly everywhere! We came home without even and had a cuddle that put the world, or at least mine, to right.


This week has been a little ray of bliss in terms of Wriggles' feeding. We have tried:

• Mummy's sandwich
• Mummy's cake
• Strips of pitta bread
• Wafers
• A bit of buttered roll 
• A vegetarian sausage 

...which have all gone down relatively well. I'm not talking huge amounts, but just tasting and Wriggles voluntarily putting them in her mouth is such an enormous step. I decided to bite the home cooking bullet today and make some sweet potato chips. To my amazement, as I deposited some on the highchair, Wriggles abandoned the strips of toast she was dribbling on and took one. And put it in her mouth. This was a beautiful moment; it was the first thing I have made she has touched*. Obviously I am delighted she now will try toast and sausages, but was giving up hope of ever being able to nourish her myself! Alright, I know it was just a bit of essentially fried potato. I imagine I could have possibly obtained some from the frozen aisle as the supermarket. But I cooked it. 

It dawned on me that I am enjoying food times with Wriggles. For the last 14 months I have been very much trying to enjoy food times zen to a fine art, but enjoy it? No way. Would you enjoy your offerings refused for months and months? Every day, several times a day no matter what you do with it? Would you enjoy seeing your child make herself sick with distress because she caught sight of a spoon....no not her spoon, your spoon you intend to eat your yoghurt with? Would you enjoy finally revelling in her trust that fromage frais is actually yummy only to see her stomach contents cover the entire kitchen because of one little gag? No, thought not. Live with, yes. Accept, yes. Chill out about, very almost yes. Enjoy? No. But now, now Wriggles is trusting food enough to at least make sensory discovery and her own mind up and at best actually use her oral skills and digest it, now there is variety and her enthusiasm matches my own, now it is fun. Now if she just put on a little bit of weight so I couldn't play the xylophone on her ribs...!

Getting a bit cocky with the "climbing" malarky...

Vegetable Glue

I cannot really speak for meal times and fussy eaters, as our path with weaning and consequently feeding has strayed from the norm and into an area regulated and plotted by medical professionals. However, I do remember growing up with my sister who was a supremely fussy eater (she accused me of being a traitor when she saw me eating broccoli. She was at least 14 at the time...) and I suspect that my little baby is fast becoming a contrary toddler so I thought I had better brush up on some literature to arm myself with knowledge for the next stage of development. One book I discovered whilst working at Seven Stories, the centre for Children's Books and remembered fondly ever since was Vegetable Glue by Susan Chandler and illustrated by Elena Odriozola. It always raised a giggle from children and story times and an understanding eye roll from many parents around the room.

Vegetable Glue is a cautionary tale from a little girl who only eats cake. The problem with this is that vegetable glue keeps all your body parts stuck on* and makes sure they do not fall off. Should your head accidentally take a tumble, you would need to flag down a wise granny (or possibly greengrocer) and beg for some magical glue to repair the damage.What's that; you've never seen someones arm spontaneously fall off in the playground? Ahhh, well they must have all eaten up their greens then to keep their arms and legs stuck firmly to their bodies. You don't need to guzzle down your body weight in peas and carrots to create vegetable glue, a few bits from your plate will suffice (if you are unsure, ask your mum or dad. They generally seem quite knowledgeable in the vegetable consumption arena). And I don't know about you, but if I knew my head was likely to fall off in the middle of going down the slide then I think I would stay indoors too. Terribly embarrassing, this body falling apart business.

"You can see for yourself,

That something's not right,

People don't fall apart.

It's just not polite.

I have to keep with me,

A big tub of glue,

To stick bits back on,

To make good as new."

So how then, do we avoid this? Luckily, the answer is here and written beautifully in rhyme. The text is large for new or budding readers (or tired parents) and accompanied by gorgeous watercolour illustrations on every page.

"It's not in the shops and it's not on the telly, beacuse vegetable glue is in everyone's belly!

But I was quite silly and made a mistake.

I wouldn't eat cabbage, or turnips or beans; I didn't like carrots, I didn't like greens.

I didn't eat sprouts and now I've no special glue. No goodness inside me, like other kids do.

While others are playing, I can't even cough. If I sneeze or I burp then something falls off."

By this point, I was already sold on the book when I first read it. It's marvellously silly as well as being full of subliminal common sense, but just in case your child might not be convinced, there is an almost obligatory rude picture for all the back row to collapse in giggles....

Although she is too young to sit through the whole story or understand fully the content, Wriggles is more than happy to flick through the pictures and was amused by the rhyming text. It also lends itself to silly noises and learning body parts if you feel like being very involved and interactive.

I don't know about you, but I will be having mainly vegetables for tea tonight. With a side helping of more vegetables. You can't be too careful....

*not scientifically proven but backed up by 99% of desperate parents especially at dinner times