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.
Thursday, 21 March 2013
Friday, 1 February 2013
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.
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.
Monday, 14 January 2013
Bring it on!
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.
Thursday, 2 August 2012
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.
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.
Saturday, 6 August 2011
...or so I've been told
I wanted to call this blog something positive so I chose the piece of advice my mother gave me this weekend as I wept uncontrollably in her arms.
I'm a positive person, always have been. I'm also undeniably ridiculously lucky, I have lived an easy, happy, healthy life surrounded by a family who love me. One night across a sweaty dancefloor in Richmond I met an astoundingly fabulous man who is now my husband and until 4 weeks ago our lives were continuing on the planned route...school, university, single years in London, meet at 25, marry at 30, pregnant 4 months later....
And then out of nowhere an anomoly.
Such an unprepossessing word. Anomoly.
Our baby is not well and to save you the medical details after many tests, an MRI scan has diagnosed Semilobar Holoprosencephaly and Microcephaly. We have been advised that this means quality of life (if she makes it to term which is unexpected) will be minimal and that life will be short and hard.
Adjusting one's expectations from the day dreams of dolls houseses and dress shopping, to nightmares of baby loss or serious mental illness has been a traumatic process and one which is by no means complete and has led me here to write about our experience in the hope that this will be a blog, which someone starting this journey of uncertainty and fear, at some stage in the future, can read and gain strength from, whether that turns out to be strength to know that even from the very darkest of moments the sun will come up and the pain will ease or a story of coping and dealing with a rare and difficult condition in a child.
I don't know anything like enough about the condition to know what to expect (this is to be rectified by consultants and paediatrician brain experts over the next few weeks, pending the baby's continued survival) I certainly don't claim to be an expert but I will be using this blog as a cathartic venting mechanism so every day will be a school day.
I'm a positive person, always have been. I'm also undeniably ridiculously lucky, I have lived an easy, happy, healthy life surrounded by a family who love me. One night across a sweaty dancefloor in Richmond I met an astoundingly fabulous man who is now my husband and until 4 weeks ago our lives were continuing on the planned route...school, university, single years in London, meet at 25, marry at 30, pregnant 4 months later....
And then out of nowhere an anomoly.
Such an unprepossessing word. Anomoly.
Our baby is not well and to save you the medical details after many tests, an MRI scan has diagnosed Semilobar Holoprosencephaly and Microcephaly. We have been advised that this means quality of life (if she makes it to term which is unexpected) will be minimal and that life will be short and hard.
Adjusting one's expectations from the day dreams of dolls houseses and dress shopping, to nightmares of baby loss or serious mental illness has been a traumatic process and one which is by no means complete and has led me here to write about our experience in the hope that this will be a blog, which someone starting this journey of uncertainty and fear, at some stage in the future, can read and gain strength from, whether that turns out to be strength to know that even from the very darkest of moments the sun will come up and the pain will ease or a story of coping and dealing with a rare and difficult condition in a child.
I don't know anything like enough about the condition to know what to expect (this is to be rectified by consultants and paediatrician brain experts over the next few weeks, pending the baby's continued survival) I certainly don't claim to be an expert but I will be using this blog as a cathartic venting mechanism so every day will be a school day.
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