Rant

Today, I recieved a letter from one of the Health Visiting team. It requested arranging a home visit to "see how I was doing and if they could offer any support."

The letter infuriated me. 

It wasn't the offer of thinking about support but rather, the time that has elapsed since my Health Visitor has tried to make contact with us. The last time I saw her, I told her I was still really struggling with depression and anxiety and felt really isolated due to our (recurrent) hospital based experiences.

In that time, she has gone on maternity leave and evidently returned to work (ie. its been a while).

In that time, my daughter has recieved an official diagnosis for cerebral palsy. She has also gone from having recognised feeding problems to being entirely tube fed.

In that time we have had at least five admissions if not more to hospital, including one lasting nearly 3 weeks. This does not include planned surgery, a sleep study or sedated MRI. They will know all of this and above because the hospital sent letters for the health visiting team and my GP.

In that time, I had a minor breakdown and was signed off work for a bit. Before being made redundant anyway.

In that time, I inadvertantly stopped taking anti-depressants and am still standing. Just about.

In that time I am still a single parent with no local family, for what that is worth.

Call me needy or melodramatic, but surely at least some of that is worth a call to just say "by the way, how are you both doing?"? 

I know the reality is those who shout loudest get the most help, but sometimes you are exhausted fighting on behalf of your child for a whole different set of things to carry on fighting for yourself. 

Then, after a rather splashy, giggly bathtime I had a different thought.
Fuck it. 
It's been quite a year and we're still here. Still standing. Still smiling (most of the time). We have bad days. We have really crap days. But the good days outnumber the shit ones. I'm not the best mum, but I'm an alright one. Luckily for them, we haven't desperately needed extra support. Hands up, it would have been really nice, really reassuring, but we've done it without the health visiting team putting their oar in. We've had some support along the way from people who aren't employed to support us in that way, like off the community physio and my counsellor when I was still seeing her, as well as being blessed with a great family, friends and an outstanding network of fellow parents facing difficult challenges. 

On a more serious note, it does make me worry for families really desperate for support. I know times when I have asked before and they simply didn't know what to suggest so didn't suggest anything. Sometimes when they just didn't answer and sometimes when they said "I don't know" and didn't do anything further. I've been lucky to always have other people around who knew an answer or at least a suggestion to help. But some families won't have that, especially if at the beginning of something difficult. I don't doubt that there are many exemplary health visitors out there who do care and do go the extra mile. But there are also a lot I think, that ignore their responsibilities as being the first port of call for many parents asking who help. And they have a lot to learn to join up the dots so that families don't get to the point of being desperate for help, but have some semblance of that a long time before that point.

Mothers Day actual

After a hard week re-living unpleasant memories, I'll be honest, Mothers Day wasn't high on my list of things to look forward too. We wouldn't be with my own mother so it felt a bit of a non-event for me. Without a partner to "help" my daughter make a card or express a glitter-splattered creation, it felt a little flat on my behalf. As so many times, the grandparents came to the rescue. Funny how a little card can make all the difference. It gave me a much needed bit of strength to pull myself up and focus on the person who made me a mother.

As it was snowing, the options were indoors only. In the end, I decided that we would jump on a metro to the Sage where a free lunchtime performance was promised. Sadly, this didn't actually materialise but we still had a really nice afternoon. By the time we got there, we had some lunch (Wriggles even had a crumb of bread as well as some Quavers; there was my gift right there!) which was delicious and then to Wriggles' true love: the stairs.

We only recently re-discovered the Sage. Pre-child I knew it quite well and have been to many concerts there as well as admiring the river view and impressive-yet-bonkers architecture. Apart from attending an event, I had no idea of there being anything child friendly about it. It turns out there is a fantastic under 5s music group every day of the week with a little area on the concourse with a table, chairs and some toys and books. However, these pale into comparison for my toddler with the many staircases. I have no idea what the pull of stairs are for her, but I do admit to shamelessly indulging it as it is brilliant physio for her and brings such a smile!

I spoke to my own wonderful mum in the afternoon, which put a good end to the day. Her voice still grounds me and makes me smile, and without her devotion to us and unwavering support I wouldn't be able to be half the mother I am today. Wriggles adores her too, unsurprisingly, and it makes my heart smile to see them together. And hopefully it won't be too long before we get that again!

Sunday

Mother's Day.

I'm not really looking forward to it.

I feel I should love it, cherish it and feel proud of myself that day.

But it makes me remember too much.

Now, in the run up, like last year, my thoughts are constantly back at my first Mother's Day. Sunday 3rd April 2011. Spent in an isolated cubicle in PICU with my critically ill baby in an induced medical coma. I remember it vividly, the whole day. That whole weekend.

Our trip to PICU wasn't supposed to be the length it was. It was supposed to be a few days to help Wriggles over the worst of her illness. It was not supposed to nearly cost her her life. We came in Tuesday morning. Friday morning they were confident about extubating. The hours ticked by, then just before lunch they proceeded. I got to hold her for the first time since Tuesday morning. Oh sweet joy to have her, albeit semi-unconscious, on my lap.

20 minutes.

20 bloody minutes.

And she collapsed. The team rushed in and they had to put her back on the ventilator. The room stopped, I was frozen as the alarms sounded and the room swarmed. As they worked quickly to re-intubate I broke and called my best friend in tears. I couldn't say anything but "just come, please come." And she did. My angel that day. And what an angel I needed.

After re-intubating, Wriggles took a lot of knocking out. From 2pm to 11pm. They kept increasing and increasing, adding in more and more drugs to try and get her under. Just before she finally succumbed to her chemical sleep they remarked they'd in effect sedated a herd of elephants with the amount of drugs they'd pumped in her tiny body.

As she drifted off, Nicola the nurse and my friend A tried to distract me. We talked about Nicola's forthcoming wedding and gave verdicts on her dress options she scrolled through on her iPhone. It was a little tense, but hooked up to the ventilator, Wriggles finally at peace, the rest of the night looked simple. But I couldn't leave. I put it off and put it off. Midnight ticked by. I just couldn't leave.

And then it happened.

Nothing outward, nothing obvious.

But in a flash, Nicola had pulled the crash buzzer and the alarms had gone mad.

Wriggles had gone into cardiac arrest.

I've never seen people move so fast, so quick. Never knew there were that many "spare" doctors and nurses on a unit. But here they were. Shouting numbers and instructions. Adrenaline. Chest compressions. More shouting. Bagging. 

We sat, A and I gripped in fear. In shock.

1 minute 30 seconds was all her heart had stopped for.

The longest 1 minute 30 seconds I have ever, ever, ever known. It could have been hours for what I knew. I was shocked when I saw it written down later. Only 1 minute 30 seconds? But it went on for so much longer.... And of course, the fuss did. Stabilising her was much longer than 1 minute 30 seconds. Because in that time, the game has changed. The odds had gone from her being a little sicker than suspected to not knowing if she would be there the next evening.

It was April Fools Day. Ha fucking ha.

Saturday was very bleak. She needed bagging several times as stopped breathing even on the ventilator. Her blood pressure was far from stable and continued to drop throughout the day, upping the odds of a second cardiac arrest. She went from 15 minute obs. To ten minute. To five minutes. To continuous. 

"She is very, very sick indeed."

I was told she was the most unstable patient at that point in PICU.

Gently, they told me I should call family. Make sure people could come.

On Mothering Sunday, our nurse was Dominic. He had his own baby girl, just days apart from Wriggles. I think he felt it quite keenly, the close ages of them. He was very, very compassionate. When I came in, he had given her a bed bath and dressed her gently in a pink and red striped sleepsuit with the front open for medical access. Her Sunday best. And there on the side there was a bright orange card in the shape of a teapot with a poem and stapled teabag. Wriggles has somehow found time to wake up and wield a felt tip pen! To this day, that card is one of my most cherished possessions. It meant so, so, so much that someone remembered. Remembered even in the sickest situations that mothers were not just desperately hurting and scared but needed celebrating. My friends came in and bought me a card. My parents bought me a card. I kept them all. Over in the parents accommodation, they were my solace on the bedtime table. My arms ached for my baby girl, my nights bleak without the breaks of night feeds. The room was quiet, too quiet. The cards filled that gap just a little. They gave me some strength.

And my mother came, and would stay for the next fortnight whilst we held our breath before finally coming home. Mothers are amazing creatures. I never needed someone so much.

But that is what I will always, or at least for now, think. That first Mothering Sunday. The worst weekend of my life. One I wish I could forget. The kindness of others was incredible. Our family, my friends, some wonderful nurses who went beyond their duties; but it doesn't take away from what happened. 

Last Mother's Day, Wriggles "made" a card at nursery. Two purple splodge hand prints on pink card. I cried like anything when nursery handed it over. They didn't know the significance; last year she was holding on to life by a thread. This year she is painting cards! Why can't that memory block out the other one? Why must I re-live that first day? That first I didn't want?

This year will be better still. I has to be better still.

But right now, I just want to get it over with. I know I will re-live the dates, a month later in the same way. The same anniversary of the same thing. So please brain, in light of that let me forget just a little this Sunday!

Because there are so many nice things to remember.

Because there is this:

Which two years ago this Sunday, I wouldn't let myself dream I could have.

Round-up

I have been taking a little break from blogging recently, as partly we have been out doing nice things and also I found been having an internal battle as to what every day sometimes entails. Sometimes it feels I am making an enormous fuss over what is so little compared to others and sometimes it feels very hard when I see other people who have has it 'easier'.

Here is some of what we have been up to:

We started looking at trying partial blended diet in the new year and have now swapped at least one bolus feed of Paediasure for blended food per day. This has been a bit of a rocky trial but seems to have now levelled out. It may have been complete coincidence with a reflux flare-up, but after started upping food volumes Wriggles began having problems tolerating her formula which she needs to as it supplies her entire dietary needs! Even with blended diet, at least 70% roughly of her calories and nutritional intake is still reliant on the formula. We tried adding carobel to the formula with no results apart from much thicker vomit. I was really torn in two minds about carrying on, or just trying to get back on track keeping feeds down and making Wriggles as comfortable as possible and decided to press on, just another week. In the last fortnight we seem to have turned a corner. She now has a breakfast blend of 100-150ml (depending on the calorie density) of porridge and fruit puree with an added probiotic and spoonful of Manuka honey. I knew from the rare forays into spoon feeding in the past her gut tolerates most fruits and porridge/grains so knew these would be safe for her. I started swapping roughly calorie for calorie and adding flushes of extra fluid throughout the morning for hydration. Almost immediately her bowel movements were noticeably different (in a good way). Also, more recently she has begun to show either hunger or curiosity much earlier in the day. Before, I would give her a bolus of 100ml Paediasure around 9:30am and would try and push back her "lunch" bolus to try and elicit some symptoms of hunger from her. Day in day out, it would get to gone 2pm (around an hour and a half past her scheduled feed) at which point I would just feed her to keep her hydration and sugar levels stable. She just didn't seem to register hunger or was that hell-bent on not wanting food! Also over the last few weeks we have perfected the Makaton for "lunch" accompanied by a "llllllll" sound, and this last week, Wriggles will sign "lunch" and start eating Quavers. Alright, the main oral intake she has is Quavers. We have tried one or two other food items, but Quavers are (still) the predominant item of choice. But, until mid-February she was on a near all-out boycott of all food and was sliding back to being ridiculous in food-based situations so frankly I don't care. I'd rather they were less yellow, but I'll take them. She even touched a slice of banana on Friday. That sounds pathetic but honestly, that is HUGE.

Physio is still going really well. There are no big or obvious leaps, but Wriggles is very slowly getting steadier on her feet. She has had one or two moments where she stands for a few seconds (albeit hunched over like Quasimodo where she can't straighten her legs out fully or shift her weight to be upright) before toppling, although these massively come and go. She did a handful of times before Christmas, then once again last week and nothing since! If nothing else though it gives me a glimpse her brain and muscles are making connections and things will come. Right now our Friday group is the highlight of the week I look forward too. I know it is good for Wriggles and it is so good to speak to other parents of not medically-perfect children. It's a place you don't need to keep a brave face on and where you can celebrate the tiny stuff that everyone else knows is actually gigantic.

Last week we had our six-monthly development review with her paediatrician, Dr W. I do slightly wish the respiratory doctors coordinated all of our care as they are the ones I trust implicitly and respect the most, although Dr W is still good. It was an odd appointment; largely quite positive although I came out feeling very confused and quite deflated. These things really stir up emotion; essentially sitting in a room and discussing your child's shortcomings for an hour can be exhausting. I'm still getting my head around it a few days later. There are no real changes from it and much more watching and waiting. The general consensus is that she is still around a year developmentally delayed on average, although now she is getting this is definitely more an "average" as some areas are getting progressively more noticeably delayed whilst others are far less of a worry. It is hard as the paeds, although obviously very clever with a lot of experience, only see snapshots. I tend to trust for instance, our physio more because she sees Wriggles much, much more regularly and has a good idea not just of her capabilities and limits but how her personality and surroundings will influence those.

The biggest news really is housing. We have provisionally be accepted for an upper Tyneside flat in an area we like! So far, the paperwork has been exceptionally minimal and we haven't actually yet seen the inside so I am trying to be very cautious but am inside bubbling with intrepidation and excitement! So much of the past months I have lamented moving, and now it is near I feel quite impatient to find a new haven and settle down in the place that should see Wriggles take her first steps and through primary school. So if I disappear again, then we're moving hopefully!

Nice Things Of Recent

Playing at the seaside beach at Whitley Bay

A real steam train and playing with wooden trains at the Stephenson Railway Musuem

  Taking a walk in Jesmond Dene

More steps at the Sunderland Winter Gardens

 Our local gallery for an erm, culture vibe. At the Laing Art Gallery

Fish! At Blue Reef Aquarium

My Tubie

One of my fears about getting a tube was how well Wriggles would cope with it.

Our feeding tube had been mentioned and talked about for a while, but when it was placed was pretty much a snap desicion based on evidence of aspiration, making it a less of a choice and more of an urgent medical necessity to protect her airways and lungs.

To my surprise, Wriggles transitioned pretty well to the G-tube. We only had one real incidence whereby she obviously missed having a bottle. Maybe I was 'lucky' that her delay in communication meant she just couldn't communicate her distress more frequently, maybe she is just wonderfully easygoing, maybe her slightly muddled up sensory signals meant she herself couldn't process missing things and any subsequent hunger or lack of oral stimulation or maybe a little of all of the above. I think by the time the g-tube was placed, both of us and all the nurses we had come to know exceptionally well, were just so delighted to see the back of the NG that frankly anything would have done! The NG was necessary at the time but was just horrible. The worst part about it was it's impermanence and against the tide of reflux that swept daily meant it needed replacing so frequently. When it was first decided that tube feeding was the plan, the nurses gave us a silk NG which can be kept in for 4-6 weeks. It lasted under 24 hours. 3 silk tubes later and it was clear we may as well go with the standard ones used in hospital as they were not going to stay down that long. And they didn't. I think the longest Wriggles kept one in for was 36 hours, and that was strictly a one off. Her gag reflex and reflux was so unpredictable even when medicated that the tube stood no chance.

As soon as her chest was clear enough to withstand a general anaesthetic we were admitted for surgery to place the g-tube which we now have. Handing her over in theatre and walking away was a very raw moment and one I will not easily forget. The path back involved walking past the entrance to PICU, the ward we know all too well. I know the layout like the back of my hand. It is one of those places forever imprinted on my heart and one that makes my heart creak at that. Just an hour later, I practically ran back to my baby in recovery. She was so small on the big bed. So small. And so in pain. It was all I could do not to wail and thrash myself. Slightly hesitantly I picked her up, so afraid of hurting her. I peeked under her huge surgical down and saw the new tube. At that point, she was still very small for her age and the tube looked enormous poking out of her tummy. A horrid part of me felt revulsion at this alien object piercing her beautiful unblemished skin and an overwhelming sense of dread that just maybe, I had made the wrong decision. After all, there was no getting away from the permanence now. This was staying in until at least a further operation.

Back on the ward, she required oxygen for the next 24 hours or so. Once we found our space, she didn't move from my lap for the rest of the day. I think I had one bathroom break. Never has she sat so still, writhing in discomfort. Just hours earlier she had been so full of beans, smiles and giggles. Now she seemed so young, so helpless. The responsibility of being a mother, advocate and guardian never weighed so heavily on my shoulders. I had consented to this for her. 

Inspecting her new addition

The next few days were unsurprisingly unsettled. Gradually I learnt to care for the tube, she perked up a little and we got the all clear to come home. The relief at being back in our familiar little sanctuary! Her age was difficult. At that point she was still not showing tremendous amounts of understanding, and even if she had, what do you say to someone not yet 2 years old about not being allowed drinks anymore, surgery and a foreign object dictating your feeds that is connected to your innards? I struggled to process it as a 25 year old mother, let alone a toddler brain. I drew her some pictures and tried to tell her about it, tears pricking my eyes. Days ago I had hated NG tubes with a fierce passion. Now a part of my longed for them again. Wriggles, my rock as always, showed no such feelings. She adapted astoundingly well to her new tube, feed regimes and warily let me carry out the cares for it. And so, we recommenced life, albeit with a some special formula, gigantically heavy feeding pump and bagfuls of syringes. Soon, it was as if we had always had the g-tube. I began to come to terms with the fact Wriggles was now a tubie and was going to be a tubie for at least the next year, probably longer. I think the NG always carried a little hope; it slipped out so easily maybe a magical solution could be reached and we could just whip it out to discard it forever?

Of course we couldn't. As we had discovered in the past, paediatricians do not give feeding tubes lightly. We have now had the g-tube for four months. It feels like forever. In some ways, it has of course complicated things especially daily care. A lot more is medicalised and our movements are slightly restricted by needing to adhere to a feeding plan and having lots of equipment. But in other ways, things are simpler. Easy as: feeding tube = less chance of aspiration = less chance of admission to hospital! We haven't had an admission now for 3 months, which is one of the longest stretches ever to have been out of hospital. Yes, we have a super long way to go until we don't rely on the tube but now I accept that the tube is here to stay and that is that. And as for my little tubie? Frankly, I could take lessons from that girl. The way children take things in their stride and adapt never ceases to amaze me. Nothing is stopping that girl from doing what she wants. Not a feeding pump, not a piece of medical grade silicone protruding, not nothing. We still struggle with oral feeding. Reflux is still as unpredictable as ever even with medication. There are still fears about aspiration. There are still respiratory issues. But my little girl is growing, smiling and taking life with both hands and that is what matters.

Complex

Wriggles gets as much post as I do, if not more. Today yet another letter plopped through confirming we have been referred to ENT because of sleep apnoea. I am really glad about this referral (apart from a possibility of impending surgery) but there was one line which made my heart sink.

"I enclose a copy of my last clinic letter on this little girl. She really has a number of quite complex interconnected problems."

All I can think of when I look at her little shining face, is how can the simplicity of such a happy child be complex? Be so complicated? Warrant so much medical involvement? Cause so much worry? 

I still struggle to accept our lot sometimes. Accept Wriggles, no question. And I know Wriggles comes hand in hand with her problems. But sometimes I still feel in a dream-like daze when I think of them and look at her. For want of a better word, she looks so normal. 

Along the way, we have met so many wonderful children and brave parents who deal with so much more than we have. Their strength to get through and fight always impresses me and makes me feel often we are making a fuss about nothing. So it always comes as a surprise when paediatricians or similar refer to Wriggles as being complex or a medical pickle. Because y'know, she is pretty normal. Apart from the non-eating, tube feeding, vomiting, chesty, hospital-loving, appointments-riddled, non-walking, non-verbal thing.....oh. 

God, I hate the word "normal".

Alternative Physio

Between every week to two weeks, we have physio through the NHS for Wriggles' cerebral palsy. We also have a rough program to follow in between times, focusing on leg stretches and some work on the pelvis and core. As well as this traditional physio, I am lucky that despite not being able to walk on her own, Wriggles has cruising skills and loves a sense of danger....making the playground an excellent work out! When the weather is permitting we go often, and it really does help as there is also an incentive for her to do things.

One of the great things about the climbing frame is that it gives her the ability to help walk forwards holding on either side. This is definitely one of her weaker areas as her core is wibbly wobbly. If she could side-step and cruise to get around, she would. Actually, if she could crawl she would but she is slowly figuring out that crawling on ice, snow or mud is not as easy as trying to walk. When going forwards with her hands either side on the bars, she tires easily and walks much slower; you can see the poor sausage working hard! She is now a dab hand at her beloved stairs and pulling herself up, although during the latter her legs often get confused and bend awkwardly. Her balance and spatial awareness also get a good work out and the swings help her sitting which of recent has been a bit more unpredictable as a growth spurt has confused her hamstring muscles which impacted on her posture. 

And above all, the playground is wonderfully enjoyable and doesn't feel like a chore at all! Even if people assume she is far younger, we don't get as many second glances as I hobble around holding her up, or if we do we're having too much fun to notice.

Matilda Mae

For Matilda Mae, taken too soon at just 9 months old but loved so much by her family; forever.  

Matilda has a Bliss Precious Star Fund and bloggers are helping to name a star for her. 

Fly high, Matilda Mae and my deepest sympathy and love to a family I have never met but followed regularly on a very honest and loving family blog. xxx