Tuesday, November 27

Grubs (not) up

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


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

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

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

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

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

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

Monday, November 19

Brick Wall (insert head here)

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

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

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

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

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

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

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

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

Friday, November 16

10 dreams I had in NICU

 1. Reaching milestones (albeit in own time!)

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

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

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

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

6. Having my baby make me laugh.

 7. Playing tea parties, my favouite childhood game.

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

9. Dressing my baby in anything I wanted.

10. Christmas. Christmases plural. Say no more.

World Prematurity Day

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

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

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

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

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

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

Monday, November 12

12 weeks outside

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

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

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

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

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

Sunday, November 11


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

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

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

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

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

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

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

My Happy Place

45/52 A New Hat

Tuesday, November 6

Pass on the Luuuuurve

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

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

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

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

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

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

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

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

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

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

Be off with you to read and appreciate now.

Giving In

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

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

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