26/52 Some Calm After the Storm

It has been a difficult end to last week. I want to dress it up and put a really positive spin on things, shrug my shoulders and say "hey ho, at least...." but I feel rocky and if I feel rocky, then Wriggles must feel very sorry for herself. She is hedgehog-ing away next to me in bed and my ears are a little bit afraid to sleep in case I don't hear her begin to rasp and wheeze, should it start up again. I'm not a hypochondriac, we have been in hospital. Yes, AGAIN. This cause: the common cold most probably.

It scares me that a cold renders my daughter terribly poorly.

It scares me to see her hooked up to monitors.

It scares me to see her suddenly dependant on oxygen and nebulisers.

I know she is bigger now, stronger, more robust. It's not that I am haunted by bad memories continuously exactly or that every nasal cannula brings me back in an instant to intensive care, be it neonatal or paediatric. But every time you see your child surrounded by tubes, wires and equipment, it chips away a little at your heart with the unfairness of it all. I know that despite the admissions, I do now have a take-home daughter but it doesn't stop the grief seeping back in when I thought it was shut out.

Most parents have the pleasure of seeing their children breathe in and out, wiping noses and bothering the GP. I, with thousands of others, have had the privilege of getting exclusive access to the club of parents who haunt the world of ambulances, spout medical terminology, have open access to hospital and being able to spot respiratory distress and jump on it. Or, try to jump on it only for your efforts to be futile. Best to get to hospital then double quick.

It is moving towards a diagnosis of asthma: although her bouts of respiratory distress are only connected to infections, either viral or bacterial, the fact that her episodes are quite severe when they do happen and respond to bronchodilators are key factors to the doctors. As one said, it could be that her preemie airways are hyper sensitive, it could be reactive airway disease, it could be recurrent RSV infections or it could be infant asthma: at this stage, as long as she responds to treatments when needed, what it is called right now is beside the point but it wouldn't hurt to throw a preventative inhaler of steroids into the mix to see if it helps. I am so glad that there is a plan of sorts forming now. It is a relief to know that both we are being taken seriously now and that people care about what happens to us. It is good to hear medical professionals saying enough is enough, this is getting silly.

As the NHS have been so kind to us, we earned our keep as normal by providing a case study for groups of new medical students. One of the doctors we have come to know well looked very pleased to see us as we ticked multiple boxes to pick the brain of his newest protégées. We patiently sat and recounted back the last 22 months to a circle of scribblers eagerly jotting things down and tried to ignore the sympathy in their eyes. What did slightly surprise me, was that more than one consultant this time was more open than they have been in the past. A lot of time it feels like has been put into persuading me I overthink some aspects which have been laughed off. But this time I finally found out that a) they officially have her down as globally delayed and b) they are still considering aspiration as a cause of respiratory troubles. These sound tiny things in the grand scheme, but somehow it is a relief to hear it in black and white. Global delay does not retract in any way from her progress that she has made and is continuing to make. Although it is a little surprise to hear that we are now getting names for things, it also makes me feel a bit more comfortable that finally we all seem to be on the same page so to speak. And just to prove that doctors don't know everything, we also did a brief class for the medical babies in sign language for small people!

And at last today, after a weekend of feeding my syringe and reliance on inhalers and calpol, it seems we have turned a corner.

Long may it continue.

I prescribe a trip to the park....

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!

Fright

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

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

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

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

My childminder never rings.

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

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

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


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

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

Home Sweet Home

Oh little home am I glad to be back!

After writing my last post, we ended up back in hospital within hours. Wriggles was refusing all hydration and vomiting medication and syringes of water back up. After a breakthrough with a spoon of runny ice cream, I was convinced we had crack it, but soon this came up with copious amounts of dried blood. As the afternoon wore she grew floppier and more lethargic and I began to panic. Luckily we still had open access after being discharged just hours earlier, and a phone call to a nurse confirmed they were keen to see her. Being a pessimistic sort, I decided to take along some jimjams and spare clothes as well as a washbag. Just In Case.

The Fear.

I don't really want to write another down hearted post again after yesterday's weigh in, but Wriggles has got a sniffle.

I know, I know. About 90% of babies and children and a large population of adults right now have a sniffle. If it is not one bug, it is the other bug doing the rounds. Basically, it's still technically winter and everyone has the lurgy or if they are lucky, is just getting over it.

It has been months, five long months in fact since the last bug. But hearing her snuffle and cough is enough to set my adrenaline cursing round my body and reaching for the holdall which I have always used as the Hospital Bag. On autopilot, I reach for the phones to check they are charged and that I still have the out-of-hours doctor and NHS Direct stored. I panic; have I got enough cash for a taxi just in case? Last spring to autumn I always had spare money in the house as bundling an ill baby into a taxi headed for the nearest A&E became a weekend hobby. I knew the postcode to the doctors surgery by heart and could recite all medical history and current medication in seconds.

Growing Up: Wriggles in Review on Home Oxygen

 At first, going home on oxygen seemed very daunting. It was easier than I imagined once I got used to it and more of an inconvenience than something of terrors. Wriggles was on just 0.1 litre-she just couldn't kick the habit and needed that little bit of help to ensure she did not plummet quickly or run into any trouble. We used the canisters rather than the concentrators, and had two large canisters about half my height for the flat, and a portable one for going out and about which neatly fitted into a rucksack for my back. Well; a specially designed rucksack rather than your average one. It did make me look like an astronaut and elicited some intrigued attention when leaving the house. I was once followed around Sainsburys by a man-it turned out his mother was going to be on home oxygen therapy too soon and he was curious to ask questions and was having trouble plucking up the courage!

There were good and bad points to be on home oxygen. Obviously the main one was that it was vital for Wriggles' survival and enabled her to grow and develope as she should. It also meant we could be at home rather than languishing by a cot on a paediatric ward. Other good points were that it meant we hit criteria to recieve some help, as it was an additional need and something that required specialist training.

Not only did potential babysitters need to be proficient in knowing the workings of a canister, the level of dosage, check the said infant was saturating well, what to do if it all went wrong and being able to administer first aid (CPR) they also had to be able to tape cannulas on to small babies who do not want cannulas or anything else taped on. Understandable really. The skills were easy to pick up; the main barrier was that it frightened the living daylights out of many people as it made Wriggles look far more vulnerable than she was. I was in no way ready to leave her for a night down the pub, but even if I wanted to, I would have been hard pushed to find someone willing. I was however helped out with FST, the Family Support Team from the Great North Children's Hospital and also a lovely lady from the Rainbow Trust who would run us to hospital appointments and help get groceries. Although we could have got by without these ladies, they really made a difference especially as I was a single parent, so had no other half to share the duties, the worries or the practicalities with. Or god forbid, the rushes to hospital.

Wriggles was in recipt of DLA (Disability Living Allowance) and we were able to apply for a Blue Badge for our non-existant car.  The former was incredibly helpful especially in getting to appointments, the latter was a nice thought.

The bad points were that annoying (have you tried to bathe a squirmy 'newborn' attached to a metre of plastic tubing? I would only advise it if you really have time on your hands and a penchant for frustration and are a sadist who enjoys torturing themself with the fear of getting bubbles in the cannula).  You need super-organisation for going up and down stairs to swop over from big to travel cylinders. You need a steely soul to prise off the sticky tape that holds the cannula in place on a regular basis to change it over and often have to treat sores on the face, unless you are lucky enough to find a sympathetic professional to prescribe duoderm tape. The other downpoint is the bloody tubing. You grow to be barely aware of it; until you trip over it with a full plate of beans on toast and stub your toe on a bookcase.

It is less of problem when they are very young; it was when Wriggles began to be more aware of the world around her it became more of a pest especially for her. Although we went home at 37 week, effectively 'term', making her a 'newborn' she had slightly less floppiness than a newborn having been undergoing physiotherapy on the neonatal unit for the past month and having built up a little strength. Tummy-time with tubing is no fun. She was a star though and powered through it.

In reality, the worst thing about home oxygen is the increased risk of RSV; Respiratory Syncytial Virus. This is a common virus that most people will get at some time, that is essentially cold-like. However, in the very young (6 weeks and under), premature, immunodeficient, those on oxygen therapy and those with chronic lung disease such as asthma and broncho pulmonary dysplasia, it can be very severe and can lead to stays in intensive care on ventilation and can sadly in some cases, be a primary cause of death.So we were advised to essentially take up hermiting for the winter months. Needless to say, you don't meet many people during hermitting. In fact, you see very few (not including the postman). Although the reasons were impeccable and Wriggles' health was paramount, I feel I missed out on vital mummy connections to make and having missed any antenatal friendships, it ended up being months before we so much as came across another mum and baby, which would have really helped in those early days, just to know I wasn't alone and that everyone finds it tough, oxygen or no.

But, we got through it. Now it seems a long time ago. In reality, it was just a year. And how things have changed. Wriggles still does tire easily and due the fact her lungs are not tip top and much of her energy goes into existing not growing, she is still quite small and i don't expect things to change anytime soon. But it gave her the best possible start and also enabled us to escape the confines of hospital, for which I am ever grateful.

What a difference a year makes

Good Riddance

Hurrah, January is nearly out the way!

I am not wishing life away, but I have no fondness whatsoever for January.

It is long.

It is cold.

It has normally sold out of Christmas selection boxes.

It is normally the season for the binmen to go on holiday meaning the rubbish is overflowing.

It needs at least two pairs of socks, most of which are missing, presumed eaten by the Hoover.

It is stripped of cheering sparkly tinsel, lest it bring you Bad Luck.

It is time to embrace the thermal vest, which could frankly could be anywhere in the flat.

It is very hard to persuade a strong-minded 1 year old to go out of the nice warm living room to the cold outside so that mummy can please buy some milk to have a cup of coffee.

It is full of sneezy noses.

It makes me wish I had shares in Kleenex.

Although actually, so far, Wriggles nor me have had a truly disgusting sniffle. Mild yes. Enough to hide under the blankets and watch CBeebies and read books all day, but nothing too vile (and I would like to keep it that way, please).

January is also slap bang in the middle of RSV season. Respiratory Syncytial Virus, or bronchiolitus as we are more familiar with, is bad news to most parents but strikes a gloom into the hearts of parents of premature, vulnerable and immunodeficient children. The risks are much more potent and the potential for complications is more acute. Every snuffle sets me on High Alert, and I know I am not alone. Because of this, Wriggles receives 'shots' to protect against this, in addition to the flu jab and winter-long antibiotics to see off any nasties. Today we had the last immunisation for the winter, which should be effective until the beginning of March where the blasted virus tails off it's dastardly work. Not only am I relieved to have gotten this over, I am also glad that it is one less trip to Outpatients to contend with, and one less activity involving the pour soul being stabbed with a needle. Hooray!

Long live February (nauseating Valentines Day notwithstanding)!

Growing up: Wriggles in Review Rooming in and Going Home

If SCBU was fraught with mixed emotions and sadness, rooming in was sheer elation. It marked a very significant point in our journey: 1. home time and beginning of my true journey of parenthood and 2. the first private moment with Wriggles since the very first moment of birth, (which to be honest was not great as I was trying to speak to emergency services whilst administering CPR whilst holding her in the crook of my arm still attached via umbilical cord in a state on intense shock).

The nurses had tried three times to leave Wriggles in air to test whether she was dependant totally on the oxygen. Unfortunately she was, and her sats would dip to worryingly low levels quickly without it. And this was without energy consuming activities like feeding! So the oxygen tanks were ordered and on Saturday 13th November, exactly two months old, I moved in to the parents flat with my overnight bag and a jittery sense of excitement. It was bizarre but just what I needed. Being on our own was bliss. It was such a relief to be able to cuddle her for as long as she would tolerate, feed her on demand and say whatever I wanted without someone listening it. And best of all, it was how I imagine! I fell in love even further and it confirmed that my deepest wish was to have my baby with me forever. The weekend went smoothly and on Monday we were officially signed out and free to go! I was slightly nervous; being a mum in hospital was one thing but home with no one to ask advice of right away was another. Plus she was on oxygen, increasing SIDS risk and everything had to be super-sterile as the risk of germs to a premature baby are well, risky, and even more wobbly to one on oxygen with Chronic Lung Disease.

I think unstrapping Wriggles out of the carseat in my flat is possibly one of my proudest moments to date. It officially marked the end of SCBU and the beginning of complete Independence. I kept expecting the hospital to ring up and say there had been a mistake, but of course they didn't. Everything felt such a novelty being at home.

Later that day, one of the community nurses came out to check we were settling in fine and to go over any questions about the oxygen cannisters. Someone would visit twice a week to check her sats (to ensure they were 94% and above) and weigh her weekly to make sure that she was still growing at a suitable rate, as having weaker lungs meant that much more energy was diverted into breathing rather than being a baby. Wriggles settled in very well. So well, she rapidly went for a nap. Seeing her in the moses basket, dwarfed, was a lovely moment. It was so homely and cosy, and no-one had wanted to take her temperature and count her respiratory rate for at least 24 hours! Oh dear. That meant it was down to me.....

Book Review Monday

As this weekend I have been reflecting on time in SCBU and what it means having an ex-prem baby, I am looking at "Lyra and the Flying Fish" written by Peter Emina and illustrated by Alice Ridley. 

"It's a strange and dangerous world out there...

Lyra and White Rabbit were together from the very first moment. As the second moment arrived, Rabbit lay there with his head next to hers. He could feel her tiny breaths passing along the plastic tube the doctors had fitted to help Lyra's not quite ready lungs puff, pant & gasp. He listened to the air as it tickled his big furry ears.....

Peacefully floating on the surface of life, Lyra is very good at ignoring everything. But when her beloved Rabbit is taken away by an unschooled whooshing jumble of flying fish, Lyra finds herself caught up in an amazing watery adventure below the surface of the ocean. With the help of her new friend Timothy the turtle, she bravely vows to find White Rabbit at all costs.

Journey beyond the incubator and into the imagination with this highly original and beautifully illustrated tale of a premature baby."

This book was written and illustrated by a couple based on their niece who was born prematurely at 24+5. Lyra needed CPAP to help her breathe, which her mum (Alice Ridley's sister) would refer to as her 'snorkel'. This kick-started their idea for an underwater adventure to communicate not just a different and gentle description of life as premature infant, but also to inspire hope about getting through: an essential ingredient that anyone who has had experience of prematurity will know. Premature babies find touch and movement very distressing which will interfere with their wellbeing, so for long periods are in their incubators with a comforter. Of course their parents are never far away (most likely, say right next to them!) but the physical barrier can sometimes seem very overwhelming. 

This story touched me deeply as the mother of a premature baby born at 27+6 requiring breathing support. There is an intense side to the experience which is very tough to communicate, but this book very gently and imaginatively put the words down in a way that is not scary or upsetting. It is both whimsical, gentle and magical whilst clearly showing the fierce determination of Lyra and the friendship and comfort she gets from White Rabbit. I initially bought it as a way of explaining to my daughter about her start in life when she grows older, but upon reading it over and over again value it as much for the story which is a brilliant tale of adventure and friendship even if you have no experience of a premature baby. The illustrations are beautiful and really bring it to life. It slightly reminds me of the concept of Alice in Wonderland, but if she had a friend to go with her down the rabbit hole!

Publisher's description 

Interview with author and illustrator 

More Grey Hairs

There has been a pause in any posting due to my little troublemaker deciding it is once again time to visit, as Grandma calls it, the H Place.

At the very end of September, Wriggles had a very minor sniff but nothing out of the ordinary. Our physio came out on Friday 30th and at the end of a session listened to her chest and was perfectly happy. She was a bit of a grump at bedtime but nothing more. However, as the night progressed things went very downhill, very fast. She could not settle and quickly developed a hacking cough. Calpol and inhalers and saline drops did nothing and the poor mite could not even take water if she wanted as would just cough, choke and vomit. All through the night I held her upright, rubbing her back. As the hours wore on, she grew palers, clammier and her breathing gew decidedly more laboured. She was vomiting consistently (delightful) due to the cough. In the early hours I had had enough. After beginning to bring up bile with fleck of blood, I rang NHS Direct in a panic who sent us along to a&e. Oh dear a&e! How I have er.....missed it. Since the weekend previous. Oh well. 

Mind you, it has been a while since a middle of the night dash. Unfortunately it was quite reminiscent of when we had the dash that culminated in the infamous PICU stay; whereby I bundled us into a taxi who was a driven by a chap called Maxell Onions (you can't make these things up) who drove the wrongway down a slip road onto a major A road and would go right every time his sat nav said left.......

Once there this time, a nurse eyed the invalid warily muttering "She looks quite short of breath". She effeciently whisked us around to the room that brings a chill to my spine: the snappily named 'resus'. Bays of resusitaires, with monitors, ventilators, emergency equipment for life-threatening occasions and such like. Wriggles, who was slightly less wriggly than normal, laid on a adult bed which of course dwarfed her ridiculously. She was quickly hooked up with ECG leads and an oxygen pulse monitor. As suspected, her sats were low and her heart rate was looking a bit silly. Bucket-loads of oxgen with nebulisers were administered whilst different medical staff ran around waving themometres, trying to take blood tests and piece together medical histories (that was the easy bit. One doctor walked in "Oh hello!! It's you two again...what are you doing here? Oh dear...." and was able to bring everyone else up to date). As the shifts changed over and breakfast dawned round, Wriggles was more normal-coloured and trying to eat the oxygen mask and was showing far more acceptable numbers on the monitor. Whilst they tried to work out whether to send us home or keep us in for observations, we got ready to go round to the Day Unit rather than take up space in a&e. 

Off we went, pushing the big bed along with an emergency oxygen cylinder Just In Case. We got through the first set of doors from a&e and suddenly the newly-stabilised patient deteriorated infront of our eyes. Within seconds she was labouring breaths again, recessing so much you could see all her ribcage and muscles and her heartrate shot through the roof. Casualty-style, we quickly all jogged into the second Resus room of the day. More oxygen, more nebulisers.............. This time, it took hours and hours for her to reach anything nearer stable. A blood-gas had them debating whether to send her up to High Dependancy straight away or to give her the benefit of the doubt.

At least that made the former decision easy: we were definitely staying in.

In total, we ended up in hospital for just under 3 weeks. As no definitive infection seemed present, the likelihood is that Wriggles aspirated something. There has always been a slight infection in her right lung on X-rays, but normally this is not the root of problems. After the initial weekend, where she was on oxygen and IV fluids, she was weaned off both. A team of paediatricians decided that the likely explanation was that due to her cardiac arrest whilst being ventilated for pneumonia aged 6 and a bit months, her swallow coordination is sometimes defective resulting in infrequent aspiration. Due to the fact she already has Chronic Lung Disease (Broncho Pulmonary Dysplasia) and a history of respiratory tract infections, they decided that this combined with her notorious solids aversion and reflux were all grounds to be fed nasogasterically for the forseeable future to allow her tissues to renew and her brain to mature. We were referred to speech and language who observed a one-off oral feed and agreed that this was a good idea. Just to be sure, they booked a fluroscopy (moving X-Ray, like a barium swallow) for the following week. In between this, Wriggles did catch a gasteric virus which put us in isolation. 

Once recovered, we went for the fluroscopy which confused everyone. There appeared to be no swallow problem. She did have a peculiar reaction to a puree but not one that showed any obstruction, aspiration or allergic reaction. The doctors shiftily withdrew to decide on a New Plan. No one quite knew what to do. The respiratory team had been so confident that they had discharged us from their care and handed us onto SALT, SALT now wanted to hand us onto someone else... They had just spent two weeks training me in nasogasteric feeds and setting up a community support plan with the view of ng feeding for the next twelve months minimum and not ruling out longterm PEG feeds. The respiratory team, neurological doctors, developmental paediatricians, physios, SALT had been sure of aspiration being the cause. Over the next few days we saw an array of paeds all with their own take on things. The inconclusive evidence looked shockingly to be.....drumroll.......it was all a result of prematurity complicated by pneumonia which was a most likely a complication of prematurity! Excellent. I could have guessed that myself without spending weeks in hospital undergoing a barrage of tests.

Oh, and she might have a milk intolerance. Or she might not. It could be the reflux.

So with that, we were released into the outside world again. Over the weeks, the seasosn had changed from people in shorts to people in coats, mittens and umbrellas. The air was chilled and afternoons suddenly grew dark.

So now we are back at home as normal. The ng tube, for the moment, is out. We are on high-calorie soya-milk and an continous antibiotics Just In Case. During hospital, Wriggles has perfected sitting unaided (what else can you do in a very small room you cannot leave in case you contaminate people?) and has developed a love of shredding important bits of paper and newspapers I have not yet read, and also discovered the joy of banging on cardboard boxes. I have returned to work and am trying to remember exactly how many marbles I had a few weeks ago because I seem to have less now... Almost a year ago in Special Care I believed, naively, that leaving dear old Ward 35 was the end of the premature experience. The birth and NICU/SCBU had left me in deep shock and for me, discharge symbolised a new beginning. Hope. A light. A world free of clinical procedures, antibacterial gel and feeding charts. A world where I stopped being a rabbit in the headlights and became A Real Mum. Wriggles would have soon reached term and no longer be 'a premature baby'. This began  to wobble when a week to discharge they decided she would leave on oxygen. But I still clung to this ideal of it being the fairytale end. 

Of course it isn't. I'm sure some parents do leave and leave it all behind in the hospital reception with the overpriced crisps and tacky cards. But it often feels as though we never escaped the world of prematurity. To look at, you would never guess she was a premature baby, far less a 27 weeker. But the oxygen followed by frequent admissions from respiratory "incidents" have been a haunting reminder of prematurity. Each seems to invoke the trauma of the previous. This last admission has particularly triggered the memories of PICU: the weeks in a different world, roaming hospital corridoors at night, the eerie quiet of the 24 hour Costa Coffee at midnight. If I think too much, I hear the hospital machines with perfect clarity. Of course, if the alternative was to not have my darling Wriggles, I would go through it all again with hesitation. Yes it has been traumatic. It has shook my faith in the world and a sense of right and changed my outlook of life. But equally, my darling daughter has shown me a kind of love and joy that I don't believe can be equalled. She is better than the tastiest biscuit and more fun that running down a beach in the sun. When she smiles at me, I can forget the things I've seen and hours at a bedside. At the end of the day, miraculously, she seems free of any condition and utterly perfect. I know time is a great healer; it will heal my memories and will renew the cells in her lungs and rest of body and build up her immune system to make her stronger. Time will ensure she grows up and grows strong, away from being a fragile, premature baby. A year ago, I could have put her in my pocket. Now at 14 months old, we are not quite out of the woods of the whole experience but I am dreaming of hope again.