The Hospital: An Epic Journey

"Are you okay?"

"Yeah, I'm fine"

I was being asked by the A&E doctor who was treating Mojo early on Monday morning as she lay writhing in apparent pain, pouring with sweat and screaming.

I wasn't fine.

Mojo was very unwell indeed following a brief and violent tummy bug and we were here again, to do battle with her sodium level. Blood results brought the news that her sodium level was 180. Now a 'normal' blood sodium level is between 135 - 145. Mojo's sits around the 152 mark, we began medicating her when it reached the 'dangerous' height of 160 in March. So being told it was 180 was like receiving a body blow, the feeling of having a lead weight pressing on my chest began to kick in. The decision was taken to put her on a drip to deal with her extreme dehydration. My mouth was responding to all the questions but in my head I was just repeating over and over 180! One Hundred and Eighty....she should be in a coma. All the while Mojo is crying and writhing and flinching away from any attempt to soothe her. The adrenaline in my body (which was the only thing keeping me upright) was making my hands shake and I could barely hold the cup of water the nurse had given me. My hands were covered in blood from a nose bleed I'd had just as we were trying to mobilise to get her to hospital. Somewhere at the back of my mind I was aware that I was wearing a very brightly coloured bra and a white vest top and that covered in blood, sweat and sick I must look atrocious.

The hours pass surreally in the hospital, particularly in A&E where there are no windows and the high stress levels mean you lose track completely of the time. The cannula was put in (awful awful awful to watch someone do that to your baby, and usually repeatedly as she sweats so much it must be like trying to cannulise an eel). The drip was started and the waiting game began.

Eventually there was a little relief, we were to be moved up to the ward.

The nights in hospital are tough, sleep (on a tiny camp bed) is broken every couple of hours by the checks the nurses do on her stats, heartbeat, oxygenation of her blood, blood pressure and temperature. In our case this time the drip machine was an unwelcome source of random beeping. It's usually during the night that I find myself crying in frustration, it's always the small things that tip me over the edge like a beeping monitor or a squeaky door.  Mojo was really unsettled and I lay with my head on her pillow stroking her hair and telling her baby mojo stories, which are a concept borrowed from my niece who loves to hear stories about herself when she was a baby. I told her in detail about the day that she was born and about bringing her home and her first walk in the park and her first smile. As the talking soothed her she reached out and stroked my face and there was a moment that I was grateful for the opportunity to share such a magic few hours with my girl, a flash of respite after a nightmare few days.

Earlier that evening I'd been in the parents' kitchen on the ward and exchanged a smile with a man who was microwaving the same ready meal as I was. He had a glazed, frightened, nauseous look, this guy was a newbie, not expecting to be in the hospital that night, not quite understanding why he's there or how it happened. If I was to guess I would have said accident. As we made small talk (I showed him how the microwave worked and where to find a fork!) it turned out his 12 year old son had just been diagnosed with a tumor. I told him how amazing the treatments they have for these things are now and how tremendously resilient children are and how I was sure his son would amaze him with both his bravery and recovery. I left him staring out of the window, not eating his ready meal. My heart broke for him.

The following morning brought more relief, she was improving and we were to be moved to another lower maintenance ward. I went out to use the phone to keep all anxious family updated. I also went to the Chapel in the hospital where I sat for 40 minutes and cried. I cried because we were here again, and facing the reality of her condition again, I cried because I knew this would not be the last time I would sit and cry in this Chapel, I cried because one day will be the last day I cry in the hospital Chapel and none of us know how soon that day will come.

When I got back I was faced with a completely different scene, Imogen was suddenly really distressed again, having slept intermittently there was clearly something very wrong and she was going down hill. Quickly. As she turned over Bill noticed that the whole of one side of her body was swelling, her face was puffy and her legs looked huge. I felt indignant, this wasn't allowed to happen, I'd though she was better, I thought we'd survived this one. As the doctors arrived to check her over a few phrases were used which make my blood run cold, the worst of which is 'Rapid deterioration'. I hate it as it was the phrase used in the letter we had from palliative care when Imogen was born which told us that 'rapid deterioration' could be expected. As the doctors worked I found myself thinking that if this is IT, if this is THE rapid deterioration that leads to us losing her then her last night on earth would have been spent with me telling her stories and stroking each others faces. I was convincing myself that deep down I must have known that's why I'd let her sit up with me that night, It was too painful to bear. Blood tests were rushed off and we were told not to panic. Yeah right.

Two long hours passed, she calmed down and we calmed down. I had to call family to update them, I paced the corridor, trying to formulate an explanation which would be non-panic-inducing and yet detailed enough to warn them things might be seriously wrong. Mid phone call I was summoned back to the room for results. It was good, her sodium was right down and all her other blood work was normal. The swelling was apparently due to a lack of protein in her system making her body push the excess water into her muscles temporarily. Instantly calm once again descended.

Once we knew everything was okay I went home for my first shower in four days, as I got in the car I turned on the radio and having already covered my relationship with music in this blog it was obvious that anything with any significance could have set me off...

Bon Jovi, Living on a Prayer. I did that strange half laugh half cry thing all the way home.

The rest of the story is uneventful, the next 48 hours were calm, she came off her drip and we jumped through all the necessary hoops to get her discharged home where life continues as if nothing happened. It has to, life goes on (Thank God).

Swimming, Spaghetti & Sweating the Small Stuff

Painting with my Granny & my Cousin

I had a strange experience this week. I found myself sincerely worrying about something that had not yet happened and, were it to happen, would cause me, at worst, minor inconvenience and irritation. In short, I was worrying about something completely insignificant. It was only when the insignificance dawned on me, that the significance followed. When did my brain find space to allow insignificant worries to slip in and make their presence felt?

So I had a metaphorical dig around my head space. Then I found it, with a thin layer of dust on, tucked away in a corner, was the heavy grey box labelled 'impending doom'. It had slipped towards the back, a spot it occupied for years prior to our diagnosis whereupon it was propelled to front and centre and tended to daily. I just hadn't noticed it recessing, clearing the space for frivolous, recreational worrying.

It's no surprise that I have not had time to waste sweating the big stuff because Mojo's diary is jam-packed with fun stuff at the moment. Our month has been spent making ever more progress with the amazing team of people we have around us. Her sitting is improving daily and she can sit for slightly longer each time. She is propping herself up as a reflex which is another one of those things which sounds spectacularly simple but has taken a great deal of work. New skills include
 - Clapping: Single claps which don't always connect and must be prefixed by 'ready...steady...clap' but oh the joy on her face is something to behold
 - Waving: This is down to our lovely portage worker. Mojo can now lift her arm and open her hand to wave when people leave the house. Again she LOVES to do it not least because she gets the kind of reaction usually reserved for a balcony kiss at a royal wedding.


Swimming

- Swimming: Okay so not lengths of front crawl but she has been attending water therapy classes which she has loved, primarily because it combines two of her favourite things, singing and her portage worker Martha (who I think she loves only slightly less than she loves hubs & I)
- Eating Spaghetti: In very small quantities and chopped up into teeny bits BUT it's being eaten!
- Differentiating and choosing between a plastic cup, a rubber dog, a teddy bear and a ball when revealed from inside a fabric bag. Yeah, you kind of have to be there but trust me it's ace.

All in all, life is very good with us at the moment and whilst we never lose sight of how quickly the dust can be blown off that 'impending doom' feeling we must also take the time to revel in it's subsiding and celebrate the wondrous achievements of our little girl who wasn't supposed to have any quality of life.

Let's face the Music!

There is something fundamentally emotive about music. It's well known that babies respond to music in the womb. There is just something about a beat and a melody which captures us. The right song at the right time can evoke tremendously strong emotions.

I've always been a fan of sound tracking my life. Anyone who lived with me through my teenage years, my university life or even in my shared housing years in London will testify to the fact that every time I got dumped (and there were a few) I would choose a song and play it loudly to death while I wallowed. I am a BIG fan of the mix tape.

One of the first 'normal' (i.e. non-medical/therapy based) activities Imogen did was a music class. We joined a class called Monkey Music where a truly brilliant music teacher sings songs with actions and the help of a cuddly pink monkey. At the end of the session the babies sit or lie on a mat together while Nikki (aforementioned brilliant teacher) sings a lullaby and blows bubbles over them. The very first time I watched Imogen lying there with her contemporaries doing something just for her enjoyment, rather than for medical reasons was a very big, very emotional deal. She was four months old.

Since then we have been every week and this music class has been the location of so many milestone firsts. Including the occasion when Nikki offered her a tiny maraca and with characteristic patience waited for her to reach for it, I was about to take it for her when Imogen reached out and took it from her. At this stage Imogens hands were still almost always clenched. It was such an astonishing first that I cried and Nikki cried and I learnt later that pretty much every mum in the room cried. I think my exact words were 'she's not supposed to be able to do that'

Fast forward to a few weeks ago when during a song about the weather, Imogen, entirely mesmerised, sat independently for the very first time. Thankfully I have grown better at keeping a lid on my crying but I couldn't quite believe my eyes.

You would think, given all of the above, that I would be braced for a strong emotional response to seeing my favourite band live. I wasn't. I was invited at the last minute to see Counting Crows a band I love and associate with the very best times of my youth at University. A totally carefree time when getting dumped or missing a lecture was what constituted stress or sadness. I've not seen live music in years and the familiar, loud, pervasive music proved to be perfect erosion of the carefully constructed lid that I keep on my emotions. Thankfully my lovely friends (literally) held my hand and didn't judge me for my tears and despite the emotional interlude I had a really fantastic night.

I tried to think afterwards why I'd been so affected.  Was it because I'd not done anything so completely pre-motherhood for years? Was it the words of the song? Was it the contrast of the carefree days to the complex daily life we have now? Was it that I was struck by the fact that Mojo mightn't ever get to experience the teen angst and mix tapes that were such an important part of growing up for me? Maybe. Was it the three glasses of wine....probably.

 

Swings, Roundabouts and other Cliches

I sometimes worry that my blog posts are a bit like those sympathy-vote back stories they do for X-Factor contestants. Not least because I find myself thinking of words like 'rollercoaster' and 'journey'. Inescapable really but do feel free to pick me up on any excessive superlatives as I continue to keep you all updated.

The last few weeks have brought both amazing development and further illness. Mojo picked up a very un-remarkable tummy bug which lead to very standard vomiting. The problem for us of course, is that when you spend your life obsessing about calories, weight gain and more importantly sodium levels even one day of sickness can cause serious problems. We did have to walk the tightrope of potential hospital admission for four days which was tough. Naturally as soon as she started to recover and we looked back, four days/nights really wasn't long at all. I mean it's nothing. Suddenly the twice daily calls to the (unendingly patient) complex care nurse are a bit embarrassing.

In her inimitable style Mojo has bounced back twice as strong, with a huge increase in her capacity for milk and while her appetite is still non-existant for food when she was weighed recently she has infact put on weight and now is almost on the centiles. It will be nice when her weight doesn't have a < sign before it.

My favourite new development comes to us thanks to the portage and physio team who have been working on Mojo's use of her hands. This has been really very effective and with plenty of practice her hands have found each other. That might sound strange if you don't know how difficult she has found it to start using her hands and it's a developmental step that I doubt parents of developmentally conventional children even notice but as with all milestones this is a big deal for us. Aside from the joy of the development it also has the added bonus of significant comedy value as I watch my very own teeny tiny Bond villain plotting her world domination from the high chair. The concentration on her face combined with the slow open and close of her hands around each other is amazingly funny. Ahh meester Bond I see you av brawt me my meelk.

Maybe you have to be there.

Finally three things have gone by recently which I drafted amazing blogs about and never finished (see aforementioned vomit week), International Women's Day, Mothers Day and Holoprosencephaly awareness week. To summarise three half blogs worth of deep and meaningful musings. Mothers are amazing, my mother is especially amazing, being a mother is amazing, even more amazing when you are a mother to a child with HPE. HPE has brought some amazing women & mothers into my life most of whom I have never and will never meet as they live on the other side of the world however their support and the sincerity of their concern for us is vital to my sanity and I value it immensely.

Failure to Thrive

FTT is an acronym which has appeared on many a note about our girl and it stands for Failure To Thrive. There are many many MANY things I hate about the term.

Dealing with the obvious one first, it can't be a good thing right? Everyone wants their children to thrive. The thing that gets me about it is the accusationary tone. Helping our children thrive is part of the whole parent job description. Parents whose children thrive are commended for their excellent parenting! By writing FTT on her notes I just read the 'FAILURE' bit. You, yes you Elizabeth, are failing to sustain your child, you are failing to meet her needs and you are failing her, now go and join that unfeasibly long queue for a blood test and think about what you've done.

The dictionary definition of thrive is - to grow, develop or be successful. To casually assert on her medical notes that Mojo is not achieving this magical 'thriving' status totally disregards the tremendous progress she is making. It makes me defensive of her. Were she able to understand the world around her and comprehend the meaning of FTT how unspeakably defeated would she feel. Having spent all week being bent and poked without complaint or tears, having drunk shed loads of that disgusting high calorie milk we insist she drink, she's even been trying to sit up all by herself and STILL you don't think she's succeeding.

The final thing I hate about FTT is the road it leads us down. The road we currently stand at the bottom of, the one with just enough turns in that you can never see what is around the corner. Today FTT lead us to blood tests and results which mean we have to start medicating our girl. We have thus far been very very lucky in avoiding medication for her. She has self managed all of her symptoms, it now appears that can no longer be the case. This makes me sad.

It is ungrateful, unrealistic even, to feel sad. Scroll back a mere two blog posts and tell that pregnant woman that she's going to feel sorry for herself because her baby needs some electrolytes replacing and she will cheerfully smack herself from the future in the face for being stupid. And yet sometimes the little girl within me wants to, despite everything, stamp her feet and shout that it is just not fair. Why can't she just be fine, why can't my baby be well, why do we have to go through all this. It only lasts for a minute or so and is always quickly replaced with the overwhelming realisation that without holoprosencephaly she wouldn't be our Mojo and maybe we would have an easier life, but a life without our girl would be infinitely poorer.

So hand in hand we go back to the hospital to discuss next steps and despite all the little FTT notes they may put in her book we will continue to grow, develop and be successful. Together.

Bring it on!

Back in the darkest days of our pregnancy I used to daydream about our baby, how she would be the exception to the rule and she would survive. If I allowed myself, I would imagine her coming home with us and being with us for Christmas. If I was getting really carried away I would dream about the doctors saying that they had made a horrible mistake and actually we didn't need them and we could take our baby girl home and live normally.

Never in all my most indulgent dreams could I have imagined these past two months.

On the eve of our girl's first birthday, I was kneeling on the kitchen floor attaching helium balloons to weights when the enormity of preparing for a 1st birthday hit me, so too did the tears. Tears which were never far from the surface for the rest of the weekend. The monumental first birthday came and went, surrounded by family and friends and love and cake and laughter. At precisely 2pm on her birthday the exact time when, on the day she was born, we were being told that there was no hope, we were together as a family, in our home, over-flowing with that same hope which we were assured didn't exist.

At Christmas we put out carrots for Rudolph and whiskey for Father Christmas. She danced to hymns in church and then we watched as she used her faltering grip to rip open presents and she sat at the table sucking on strips of turkey. It was a million miles from the stress of last Christmas which was spent in and out of hospital while doctors tried to work out why her sodium was so high.

So the New Year arrived and with it our home review by the Hospice whose excellent care we have officially been under since she was born. I'm not sure what I was expecting from our assessment but when the nurse concluded that Imogen was not in need of Hospice care and we would be discharged I was stunned. I closed the door as she left and cried and cried. The Hospice provides care to children who are not expected to reach their 19th Birthday and despite the fact the nothing at all medically has changed the fact that someone has said that we can be removed (even temporarily) from that category was akin to the high I felt when they said we could take her home after she was born.

So far 2013 has felt a little bit like an especially cheerful episode of Glee or a really feel-good musical film. The good things just keep coming, all of sudden we are meeting people who are talking about the future. Physio, early years centres and Portage have arrived into our lives. This week someone spoke to me about mainstream nursery and schools. Out of habit, I wanted to tell her that I don't like to talk about things like that because it breaks my heart that Mojo is unlikely to ever need them.

Last year was all watchful waiting and being prepared for 'rapid deterioration' and this year is all about progress and pro-activity and LIVING, enjoying our quality of life.

Don't get me wrong, there is no place for smug self-satisfaction when living with such an unpredictable condition and if you knew how many times I have started blog posts and then thought, God I can't publish that as it is tempting fate too much, you'd laugh.

I am however, starting to get the message that my girl has been giving me since she could first kick in the womb. I'm not going anywhere mummy, bring it on!

If today...

If today is the day that you get news which rocks the foundations of your world, if you find yourself dizzy with horror at how you will continue to function, then your today, is my yesterday or, more acurately, my one year ago today.

In honesty I had forgotten that I'd started this blog almost a year ago and it was my need to write down my feelings on the anniversary of the diagnosis that brought me back. There it was, in black and white, me, a year ago, full of fear, shock and disbelief and importantly a hope and a resolve which, I had yet to acknowledge, but was clearly present.

The months which followed my first post were without question the most difficult of my life. I never returned to tell our story as it was too painful, too personal to commit to 'paper'. The medical meetings were bleakness after bleakness and the letter which stayed with us throughout the remainder of the pregnancy outlined in no uncertain terms the likely outcomes. There were three options. Option one - your baby will not survive to term and nature will take its course. Option two - your baby will be born but labour will be too stressful and she will die within hours, the letter outlined the fact that they would hand her to me to die in my arms! Option Three - your baby will be born in a 'reasonable state' by which they mean breathing, and she will be transferred to the neo-natal unit and eventually the hospice. That was it, our best option was a hospice with a severely disabled baby with no chance of any quality of life.

Important to say at this stage that the doctors we spoke to were exemplary and could only tell us what research and a very small pool of experience with the condition told them. I hold no resentment to towards them.

So the months rolled on, every day I woke up thinking today will be the day and often I'd realise that I'd not felt the baby move for a while and my spine would run ice cold until I could be sure I'd felt her move again. We had to continue with life, there were people around us who couldn't bare to see our pain and this helped us to paint on the brave face and live. We did everything that we had planned, went to parties, went on holiday, cuddled our friends children, congratulated people on the arrival of their healthy babies. There are a few incidents over the months that stay with me as being my 'rock bottom' emotionally. The first of which was on the holiday we went on just after the letter with our options had arrived. It was a holiday with all my family, parents, siblings, in laws etc. It was a good holiday, fun and full of love and support and we both enjoyed it. On the last night we went to a restaurant and outside there was a brass band playing. Now I love Brass Bands we had one at our wedding reception. As we stood listening they started to play Smile by Charlie Chaplin. It was only as the words began to start in my head I realised that I could hardly breathe. 'Smile, though your heart is aching/Smile even though it's breaking' Standing up from the bench and trying to compose myself is possibly the hardest thing I've ever had to do.

Then before I knew it it was December and I was still pregnant and the baby was going to arrive. We had bought nothing as we had no expectation of bringing her home and we went into the hospital with a bizarre mix of resignation that we had done all we could and hope that it was enough and fear that it wasn't. The neo-natal doctors came to see us three hours before she was born because news had reached them that we were optimistic and that we had hope that she would make it. They came to manage our expectations and re-iterate that it was very unlikely that she would survive, they even told a story that another baby with the condition had died in the delivery room just a week ago. I tell myself that it was the pain he felt for that family which led him to tell us that story. As though preparing us would ease our pain but I don't ever think I will understand the logic of sharing it with a mother in labour.

There is of course much more to this story, the seven minutes after she was born during which she didn't breathe, the moment when they said that she could come with me rather than go to the neo-natal unit, the bizarre occasion when she was 2 days old and a midwife came to apologise that we couldn't be sent home until the next day since they needed a consultant to see her. I cried, and she was apologising, I said 'No you don't understand, I can't believe that we can take her home'.

And now one year after the diagnosis shattered our world I sit here watching the Olympics, while she sleeps next to me. Her life is not without it's challenges (who's is?) and she will struggle developmentally and there is always that uncertainty which on some days feels more claustrophobic than on others. Medically she is truly remarkable. Personally she is spectacular.

So if today is that first day for you, and you know that there will be other dark days to follow, I truly hope that the sun comes up for you and shines as brightly as it now does for us.