Superstar

When our adventure began, 23 months ago and we discovered we would be having a baby, I was filled with mixed emotions. Excited. Thrilled. Nervous. Curious. Happy. From day one I kept a journal, full of the ups and downs of pregnancy, documenting every single piece of preparation for our little arrival. Not knowing of she was a boy or a girl was a blessing really because it meant slight control on our spending;  since she arrived I have become a shopaholic for tiny girls clothes, god knows what I would have spent if I had had an extra 4 months to buy things! I planned to give Ivy the best start in life. The healthiest start in life and the most loved start in life. I think I did this and I am trying my best to keep doing this. Some days diabetes is all I can think of and I struggle not to talk about it all the time, when somebody asks 'hows Ivy?' I launch into a full recall of her past 24 hour blood readings. ."oh she's ok,  had a hypo at 2am and after her juice and biscuits she didn't want to go back to sleep so we were up till 5. Her bloods were high by breakfast so she needed a correction,  still high after eating..I think it was the cereal. Slow releasing so probably bypassed the insulin before it was put into her bloodstream.." when all I had to say was "she's great, she is obsessed with steps at the moment,  all I have to do to keep her entertained is put a box next to the sofa and she's off..perfecting her new skill!"

 I need to remember that Ivy has diabetes, it doesn't have her, with our help and support she will hopefully live a normal life, ideally it will be an extraordinary one full of adventure. Like it typically is at the moment, she doesn't know she has this life long, life threatening condition, she just wakes up every day wanting to go and feed the ducks, play with playdough or dance around the living room. Life is an adventure to her and after the last couple of weeks we have had, I couldn't be more thankful for her innocence.

Two weeks ago we experienced the darker side of diabetes, after several days of generally being very low and having had 25 hypoglycaemic attacks in 3 days, Ivy lost consciousness due to one. I had already treated a hypo at 1:20pm, she came up to the safe range and was back to bouncing around and playing, when I asked if she wanted to go to playgroup she leapt straight up and went to get our shoes,  so off we went. In the community centre she was happily playing with sensory rice and wanted to do some painting,  I popped on an apron, sat her on a tiny chair and after one splodge of yellow paint on the paper she screamed, arched her back and frantically started doing the makaton sign for food; something she does to alert us that she is going low. It wasn't even 2:00pm so I thought she  couldn't possibly be hypo again but checked her anyway. Her blood glucose reading was 2.8, anything below 3.1 is classed as a serious hypo. I took her into a side room and thought I'd read her a story after giving her double her usual dose of glucojuice. She slumped on my lap and I called our Diabetes Team to get some more advise for treating these persistent attacks, whilst on the phone to the specialist nurse Ivy became really drowsy and I was urged by the nurse to call 999. Ivy's head flopped forward and when I tried to get her to respond to her name, her eyes rolled in her head and she couldn't focus on anything. Within a few minutes her head was back and she had lost consciousness,  we couldn't wake her and she just lay there, to an outsider she looked like she was sleeping. The paramedic struggled to find the community centre and arrived 20 minutes after I had given her the glucojuice, he put Ivy on some oxygen and explained that she may need an injection of a hormone  called Glucagon, but they're reluctant to use it on little ones unless they really have to. He checked her blood and she was now 3.8, still in the hypo range but 0.2 off the safe numbers. He explained that he would wait 5 more minutes to see if the  glucojuice would still be working,  another 5 minutes ticked slowly by but he finally checked again, Ivy's glucose levels had crashed to 2.6, I saw the smallest look of shock on his face before he resumed that calm exterior that medical professionals have, he simply said "she needs the glucagon now, pull her trousers down" he administered the hormone injection, which would cause Ivy's liver to expel all of it's glucose stores and kick start the body, it took Ivy about 10 seconds to come around and she was screaming, scrambling to get the oxygen mask off, I was so relieved she was awake, I didn't even think about what would happen next. An ambulance arrived to take us to a&e, as Ivy no longer had any glucose stores it was important to get her straight there, blue lights and sirens, because she had to eat something. I am sure it only took us 10 minutes to get there but it felt like an hour. By the time we got to the hospital, Ivy was back to her normal self, happily playing, at one point she had another hypo with absolutely no signs at all (diabetes is so bizarre in how it affects the body!). We had her pump switched off for 90 minutes, gave her 2 biscuits and her blood sugars remained normal and stable; a small part of my hopeful brain thought she was cured,  sadly not, her pancreas doesn't work how it is supposed to and until there is a cure, that is just the way it is. For the following week Ivy had her insulin intake significantly reduced, her background insulin has been running at 20% of her normal amount during the day, this is the equivalent of her having 0.0005ml of insulin over a 24 hour period! You couldn't even put that tiny drop on your hand! Nobody really knows what has caused this sudden sensitivity to insulin, our consultant said that it isn't uncommon for smaller children to not need as much insulin sometimes. Diabetes requires such a delicate balance of so many factors, some of which are still unknown. Another theory is that she hasn't been absorbing her food properly, due to some kind of virus, leading to a surplus of insulin in her body. Who knows! All we can do is keep checking her blood, pricking her fingers and treating her accordingly, I haven't had much sleep the past few weeks but I don't even care if it means Ivy will experience a little less discomfort.

It will have been 2 weeks tomorrow since Ivy  had that awful attack and last night,  having studied her stats, we almost hoped that she was returning to normal but then at 3am Ivy woke desperate for a drink, she downed a full bottle of water, I checked her blood...her glucose levels were 18.7! Hyperglycaemia kicks in when blood glucose is above 12, a T1 adult friend likens it to that awful feeling we call a hangover; headaches, feeling sick, being tired, unquenchable thirst.

These are Ivy's  blood glucose readings for today. .
18.3, 9.5, 16.5, 16.7, 17.5, 15.5, 18.3 and finally a 7.7 after giving her loads of extra insulin.

She's poorly. A temperature, loss of appetite, crying, bloodshot eyes, runny nose and after waking up at 8am she has been asleep for the past 2 hours,  since 12! As if a virus isn't bad enough when you're a toddler, she has to deal with raised hyperglycaemia and feel like she's having the worse kind of hangover at the same time. Hopefully it won't last too long, we will keep her hydrated, keep checking for ketones and of course give her as many hugs as she wants and watch Disney films all day!

A friend of mine recently called Ivy "content" I look at her,  and she really is! Despite everything that she has gone through and continues to go through every day, she is the happiest little soul, often in hysterics herself or causing our cheeks to hurt through laughing so much!  To those who don't know her, you wouldn't even know what a courageous little girl she is. Our little Superstar. A superstar who recently raised £450 doing her vwey first sponsored walk for JDRF, the Juvenile Diabetes Research Foundation,  she walked about 40% of the 5k herself; it took 90 minutes, 2 stumbles, 3 blood checks and some snacks along the way. She crossed the finish line to applause,  high 5's and cheers. I could have burst with pride and I cried!

She is amazing!

Steps forward..

It has been a big couple of weeks for Miss Ivy, she started walking! She has has tentatively been taking a little steps here and there for a few weeks but really started going for it in the last few days; she has also mastered standing up from sitting without having to hold onto anything,  so she is always on her feet now. My T1 friend has advised I stock up on Rowntrees jelly pots to treat the inevitable hypo attacks now that she is mobile!

I feel so proud of Ivy; those intraosseous cannula attempts (when they drilled into her shin bone) haven't really held her back at all! She had been making steady progress before she was diagnosed and the consultant said it would be months before she could properly stand and support her weight again, never mind walk, and look at her now, tottering around laughing at this new found skill. It must be so fun to all of a sudden see the world from a whole new perspective and height..and what height, she is so tall!

Her first official steps were taken in the garden, 6 of them took her from a flower pot to myself, the weather has been gorgeous for the past week; so warm and sunny, I love being outside with her, she loves the fresh air, the wind on her face, it always seems to calm her down when she is hyperglycaemic and distressed. It's a shame we live in Manchester,  officially one of the wettest places in the UK which (until she can wear her wellies!!) prevent us from going out sometimes.


A hugely massive step forward this week has been the pump! After running high for  over a month, the consultant decided that we needed to try a new tactic to try and rein in her erratic numbers and the Accu chek Roche Combo was the chosen pump. We chose it mostly because it is a bluetooth set up, once Ivy has the cannula fitted, the pump will sit snug against her back and we won't have to touch it to deliver her insulin! She can carry on playing and not even notice that we have done anything, we just program her carbs:insulin ratios, type in the number of carbs she will be eating,  confirm confirm confirm and deliver. Done. Just like that! The consultant has assured us that it will make things better for Ivy and inevitably for us too, but it will give us 10 more things to think about. In my opinion though, getting my brain to think about a few more things, in exchange for my little lady feeling better is a tiny price to pay!

The biggest news of this blog entry is that as I type, I am wearing this pump!! Just using saline rather than insulin may I add.. Our specialist nurse thought it would be a good idea for both Sam and I to wear the pump for a couple of weeks and get used to it and really get our heads around the technical side of things before Ivy goes live at the end of the month. In a few days we will introduce her to the pump, starting with the noise that is made when the cannula is fired; she will wear some without  a needle. She will also get used to wearing the pump, carrying it around, neatly tucked away in her babygro.

I was so nervous about today, I was gripped with this fear that we were doing the wrong thing and that it wouldn't be the right route for Ivy but after spending time with the pump nurse and using this little lifesaving machine this evening, I can already see that we won't look back. My T1 friend said some people wear their heart on their sleeve and she wears her pancreas on her hip...Ivy's will be gently nestled above that peachy little bottom, without an injection in sight!

Me wearing the pump!

A way of life.

It is 2am, Ivy's glucose levels are slowly creeping up, I have been hoping that she won't wake  because hyperglycaemia seems to really affect her when she wakes with it..I suppose that is because she goes to bed feeling fine and wakes up feeling awful. Sadly, that happened tonight, she woke up sobbing and she needed a correction injection. She is coming back down now and is sleepily watching Postman Pat, my poor girl, it is times like this when the 'why hers' hit me; she will never know what her life was like before she was diagnosed,  she won't remember being able to charge around Anchors Away, soft play centre, for as long as she wanted to without me stopping her every half an hour to test her blood and make sure she eats something if she begins to drop too quickly. She won't remember messy play at home with lots of different foods that she can explore, squidge, squeeze and taste without me monitoring everything and  having to interfere with her exploration and learning. She won't know that she used to eat what she liked, when she liked with spontaneity,  without me checking her blood was ok and giving her insulin to balance the food. Everything seems so rigid at the moment,  I find myself checking every wrapper and weighing so many things to try and find little things that she can eat without us having to interfere and take the fun out of it-we have spent a fortune on babybels, that little round circle definitely makes her smile!

There has been so much in the media the last few weeks stating that Diabetes is draining the NHS and only 20 minutes of exercise a day can cure it, blah blah. They mostly neglect to distinguish between Type 1 and Type 2 diabetes; T2 is mostly caused by lifestyle factors and can be reversed, life can return to how it was before diagnosis. T1 (at the moment) can't be cured. I recently complained to a national newspaper because it clearly stated that "T1 is caused by overexposure to cane sugar", I couldn't believe it!! The Editor of that newspaper replied and apologised for the mistake. Ivy didn't do anything to cause her pancreas to stop working and without us, managing her condition, she would die. Her glucose levels will soar when she consumes any carbohydrates and she will be insulin dependent for the rest of her life. Only insulin can help to bring these levels under control, a daily battle and delicate balancing act. It was nothing to do with cane sugar, any other foods or lifestyle factors. It has been almost 9 weeks since her diagnosis now, it hasn't become any easier but it has become normal and our way of life. It is unpredictable and we are still having to check every 2 hours through the night but I don't care. I miss things from our 'old life' but I don't miss anything for myself, I miss things for Ivy; she will never know her life to be any different, a blessing in disguise maybe? People always ask would you prefer to see the colours in the world and then lose your sight or never be able to see but not miss those colours? A hard choice to make, if you're lucky enough to choose.

Ivy is amazing, I can't praise her enough. I hope that this innocent acceptance of her condition sticks around for as long as possible, I dread the day she asks 'why me?'...I'll tell her that she was born so perfect that she had to be a diabetic child, she can cope with it because she is so amazing and strong,  another little child might not be able to cope with it and they would become very poorly. I'll tell her to embrace it and to promote living with it and not let it hold her back. I'll tell her to chase her dreams and to shout it from the rooftops when she achieves them. I'll tell her to be proud of herself and to never be ashamed.

I'll remind her that little girls are made of sugar and spice and all things nice; she was just made a little sweeter than most.

One.

I have been more than excited for Ivy's birthday, not only because it is a big birthday for a little girl but because it seemed so much more poignant after what she has been through. The run up to it was stressful,  not only because I wanted too make sure it was perfect but also because slowly, but steadily, her glucose levels had been creeping up. She was experiencing prolonged hyperglycemic episodes for most of the day..These are a concern as they are what contribute to the long term issues type 1 diabetics face with, for example, their eyesight and kidney functioning. Our DSN (specialist nurse) advised that it was likely due to her teething; it was driving her crazy, constantly chewing her hand, drooling everywhere and crying. Despite this her birthday was fast approaching and we were excited, I haven't been as excited for my own birthday since I was 7 and I got a Polly Pocket watch, with solid perfume hidden under the face!

On her birthday, we took her downstairs to the living room, which was filled with balloons-these it seemed were far more exciting than her presents! She had a birthday breakfast of blueberry pancakes (carbs perfectly counted of course!) and the opened her presents, her largest being her brand new swing, complete with helium balloons in the garden! Her reaction to first using this was amazing; she laughed and kicked her little legs continuously! We went to Jo Jingles and then the 3 of us went for a birthday lunch to a restaurant called Bem Brasil, perfect for our little diabetic lady because we could measure and calculate her carbohydrates, she could then eat as much protein and vegetables as she liked!  Our evening was spent at Grandma and Grandpa's house with a birthday tea! The entire day was just lovely, a perfect family celebration. 

The following day was her party! All of her little friends had been invited to come along at 11am. 

 We booked Charlotte and Jo Jingles to come and do a little session, made up of her favourite songs, instruments and bubbles. Ivy wore an adorable little navy blue party dress,  covered in little flowers, with a pink band around the waist. Her outfit was completed with a pair of luminous yellow pumps, right on trend of course. This girl has an amazing wardrobe! We wanted her to be able to eat the same as her friends, her party food buffet was perfectly baby friendly; fruit cups, carrot sticks, cheerios, jelly cups, baby crisps and perfect little sandwiches cut into tiny little people and flowers. Everything was carb counted and she could eat whatever she liked. We kept a note of it all and because of most of her food choices being low in carbs or carb free, she didn't need an injection of insulin.

Her cake was my favourite thing; I'd spent every evening, in the week before her birthday, making fondant figures of circus animals and a Jo Jingles ringmaster. Ivy's grandma had spent so long perfecting a baby and diabetic friendly cake, sweetened with blueberries. It was amazing! I felt so emotional when everybody sang happy birthday; Ivy just studied the room, completely bemused, not knowing why she was the centre of attention. Not knowing how special the day was, or how special she is. Needless to say, she crashed out afterwards, exhausted by the excitement of the afternoon. I'd like to say she slept for a few hours, but  that's not her style...after about 45 minutes she was awake and charging around again!

That was 3 weeks ago now, so much can happen in such a short space of time. She is on the verge of walking now, tottering around barely holding our hand. This is incredible for us to see, her diagnosis was only 8 weeks ago and the on shift consultant had advised us that the intra osseous cannulas in her shin bone would most certainly affect her mobility. They did but not too the extent they thought they would; she had been close to walking before she was diagnosed, but she has soldiered on and the new realisation that being upright can get you places is amazing, she is on her feet all the time.

As far has her diabetes goes, we had a clinic appointment last week; I was dreading it, as hard as we'd tried to manage it, Ivy's blood glucose levels had been running high for 10 days, she had been suffering with extended hyperglycaemia. Our consultant and specialist nurse were so understanding and have decided that an insulin pump should be the next step in helping Ivy. We don't know a great deal about them yet but having one should help Ivy feel so much better. At the moment the smallest amount if insulin we can administer is 0.5u, about 300 micromils, half a drop! It is a tiny amount but she is still so sensitive that this minuscule drop can send her into a hypoglycaemic attack in no time at all. The pump will be able to administer amounts as small as 0.1u and we will be able to treat hyperglycaemia sooner.

I am writing this at 3am; Ivy has had a particularly stressful couple of hours, with her levels slowly creeping up. We hoped that her background, slow release insulin may bring her down as we've been advised not to correct her below 16mmols, unfortunately (or fortunately. .) next time we checked she was almost 18 but we could now give her half a unit. Until it kicked in she was still so anxious, distressed and uncomfortable,  it breaks my heart to see. She didn't ask for this and she doesn't understand why she is hurting, it is times like this that I am reminded that she will have moments like this for life now, the only thing I can do for her, is try and manage it as best I can and reduce the discomfort she feels..this is easier said than done and when she is sobbing, holding her head and thrashing around, I feel like a pretty useless mummy. What is easy, is the cuddling, kissing and love I can give her to reassure her that she is not alone. My 1 year old, facing so much and who's body is going through so much more than it should be. She is a trooper. An almost walking,  birthday cake scoffing trooper. I love her with all my heart.

A little but massively, important thank you.

Once we had been home for a few days and we were settling back into life away from The Tree House we started to think about how we could thank the staff who had looked after Ivy so well. In recent years Stepping Hill has received some bad press but I can honestly say we have never had anything other than incredible care, especially through our slightly complicated pregnancy, Ivy's lovely water birth and now with her diabetes. Her specialist consultant and several of the nurses who we had spent time with are running the Manchester 10k, in May, for Mediequip 4 Kids and we thought it would be nice to support them. 

We asked our nearest and dearest if they would like to support them too and make a small donation. Everybody replied immediately and said they would be delighted to donate. In 2 weeks we had raised £400! An amount I never even imagined we would be able to collect.  

To go with the donation we also made them a very special thank you card to remind them of the key role they held in saving Ivy, helping her get better and going home. We used 8 photographs of Ivy, starting with one taken half an hour before we first took her to hospital, so poorly and thirsty, clinging her little water bottle, ending with one of her with a big smile, with her special nurse backpack full of her diabetics supplies, ready to go home. The photographs in between show the 'Ivy Revival'. A time line showing the progress she made, the first photo was in black and white, slowly they increased in colour, until the last was full colour and vibrant. Sam created the images and I played my part by cutting and sticking them together!

We took the card and donation to The Tree House after an appointment with one of our Diabetes Nurses, of course the nurses swooned around Ivy, all desperate for a cuddle.  They didn't actually recognise me at first, proof that there really is no place like home for some R & R! When we gave them the card they cried and we cried, they were so surprised and grateful for the donation and the card was passed around every member of staff before being put pride of place on the front desk. Ivy had her photo taken with the team on shift and she will receive a letter of thanks for helping The Tree House, all of these will be little memoirs of her diagnosis journey, of The Ivy Revival.

A whole new normal life of carb counting.

Home sweet home. It felt amazing to sleep in my own bed, like a cloud compared to the one in hospital! That first night went quite smoothly, Ivy's sugars were pretty stable and we slept like babies. It was the following day which shocked me, it was like having a new baby; as first time parents your routine goes to pot, you don't really think about yourself, you eat at the most obscure times and leaving the house is an absolute mission!

We used to eat our meals around the table but all of a sudden it took so long to create, weigh, cook and carb count Ivy's meals that we forgot to cook ourselves anything. Here is an example of how we have to carb count Ivy's food: If she wanted a bit of banana (surprisingly high in carbohydrate!) weighing 26g, we would have to find out the number of carbs per 100g of banana, make this a percentage and multiply it by 26g. Ivy can have 0.5 units of insulin per 15g of carbs,  any less and she couldn't have any with being too sensitive but her blood sugars would still escalate, we found ourselves having to encourage her to eat much more than we used to, thank god she loves her food. I remember the first meal we gave her in the hospital, there were fishfingers and mixed vegetables; the fish was deep fried so we removed the bread coating,  we wouldn't dream of feeding a 10 month old deep fried food but then a nurse pointed out that it meant Ivy didn't actually have any carbs!

It isn't just the carbs we have to consider, we have to think about how these are broken down and used by the body. When consumed with fat and protein, carbohydrates take longer to break down and make their way into her blood. Her insulin is given before her meal so that it is ready and waiting to break down any new sugars she has eaten, sometimes because they take so long to reach her blood the insulin can cause her glucose levels to drop and cause hypoglycaemia before being corrected. Other times we found some carbs broke down too quickly and she'd spike with hyperglycaemia (too high) before the insulin had time to tackle them. It is so unpredictable and frustrating!

Recently we have started to struggle keeping her steady through the night. Our two hourly checks show figures between 12 and 8 around midnight but by 3am she is hypo; up we all get, jelly out, rusks out, toys out...Ivy is not keen to go back to bed after a midnight snack!

The other end of the spectrum is when she is hyperglycaemic. This is when her sugars go too high, typically if they go over 15 we have to give her an injection of corrective insulin.  Unfortunately, because she is so sensitive to insulin, we have to be careful when we give it to her. One night she woke up at midnight crying, we tested her blood glucose and it was 15.1, we called the hospital for some advice and as she had had a hypo earlier in the day they recommended not correcting it as it could floor her. Sadly that meant we had to ride it out and hope that her slow release insulin could bring it down. Checking every hour, we just had to wait. Poor Ivy was so upset and obviously hurting, she tried to get comfortable but she couldn't lie down or sit down, or be held or even sit still. She was a little fidget but a fidget who was obviously desperate to sleep, she kept asking for a breastfeed but because of the sugar content in the milk she wasn't allowed to. It is horrible saying no, she doesn't understand why it was refused and it was even harder because she didn't want it for the milk, she needed the comfort to help her feel better. Three tiring hours later, by 3am, her blood glucose levels had reduced enough to allow her to have a breastfeed. Whether it was the insulin or her getting worked up and crying, or a combination of both, we don't know but within in minutes she was fast asleep, not too long after so were we!

We had our first meal in public a few days ago, rushing around we realised it was Ivy's lunch time. We decided to go to M&S cafe because they do perfect little, crust free, cheese sandwiches with the carbs already counted for us! We could hardly be inconspicuous,  the only free table was in the centre of the busy cafe and knowing we were going to have to give her an injection my heart started to race. I slowly got the pen ready and when Sam came over with the sandwiches, we stood up, I held Ivy and he injected her thigh. It was over in a minute and Ivy happily tucked into her lunch and I began to breathe again. Shortly after an older lady came to see Ivy and explained that she had noticed (who hadn't?) that we had given her an injection and she asked if Ivy was diabetic. She explained that her late husband had been too, she gave Ivy lots of attention and us lots of encouragement. Her kind words were almost healing for the internal fear I have, that I am going to let Ivy down and be utter rubbish at managing her diabetes.

It is 3 weeks today since we first went to the hospital, it feels like an absolute lifetime ago now though.  Things are slowly starting to feel normal, although on Tuesday I face the whole new challenge of day time decisions without Sam, as he is going back to work. I am sure I know what to do but the reassurance I get from double checking with Sam that Ivy can have 10 extra blueberries, or she only needs half a unit of insulin, or even just to confirm she can have a breastfeed,  makes me feel so much better!

What if I make a mistake? What if her blood glucose messes up and she floors or goes through the roof? What if she accidentally eats a chocolate bar she finds stashed somewhere?
I know, I'll ring Sam!

Living in The Tree House

Physically, The Tree House is your typical children's ward in an NHS hospital. Cots with babies in, beds with children in, seats full of parents, grandparents, siblings and friends all there to support and love those precious little people in our lives. What makes The Tree House so special are the nurses, doctors, ward assistants and cleaners  who work there. I will forever be indebted to the team who saved Ivy.

We were moved from HDU to the special care unit, we had our own little room,  with a single bed that I shared with Ivy. Normally a great sleeper, recent events had given her nightmares and she struggled to settle without me sleeping near her. Not that I was complaining, feeling her little body in my arms at night was an amazing comfort to myself as well. I felt, and feel, ridiculously lucky to be able to hold her.

Ivy was taken off the drip and had all those wires removed, an additional infection (a virus which some now believe can be a trigger for t1 diabetes) was gone and she just needed her stats checking 4 times a day. She still needed her glucose levels checking every 2 hours but she was so good, she was already starting to hold her tiny fingers out to be pricked, releasing that little drop of blood for the monitor. She still had the two canulas in her head, but now the drips were gone, they could be taken out.  One at a time they were removed, she loved being able to lie on her side but the sites became "boggy", her head became very swollen, full of excess fluid. It drained away within a few hours but our poor poppet's head was as round as the moon! It was at this point we were told we could take her for a walk. Armed with a tube of glucogel, in case she went hypo, we walked to Sainsburys...and went straight back! I was so nervous.

On the Tuesday morning, the consultant who succeeded in inserting the canulas and effectively saving Ivy's life in HDU, came to see us. She said she had never been so nervous when calling work for an update after treating a child, she wasn't 100% on what the outcome was going to be. When she was told that Ivy was stable and making slow progress she was so pleased and relieved,  she called back an hour later to hear it again, and then she called once more! Eventually the doctor on shift had to tell her to stop ringing and to enjoy her day off! She took the name of the on call GP who we saw on the sunday because she wanted to applaud her quick thinking.  We owe that GP, Dr Bettina Schoenberger, more than I can imagine.

A doctor called Isaac, full of energy and wide smiles, gave Ivy her first haircut, on a bed in HDU. When she was critical and the nurse came to ask our permission to shave her hair, she did a very conservative job only removing a little bit (on the right hand side) that could be hidden by a comb over. A few hours later, Isaac explained that a second canula was needed as the emergency one may not last. He proceeded to use an NHS bic razor and a little pair of scissors to remove all of the hair on the left side of her head. He was so charismatic doing it, checking it here, trimming a bit more there, that I couldn't really be horrified at what was happening to my beautiful girls head. As a souvenir he packaged up a little bundle of hair..very thoughtful! Prior to this whole experience,  I had imagined Ivy's first haircut to be an exciting time, being beautifully styled by our friend Laney, a very talented hairdresser, with not even the hint of a bic razor in sight!

The nurses adored Ivy and she adored them; although at first she did scream every time somebody in a blue tunic came near her... After her ordeal, I wasn't surprised really! They all spoke to her in such a gentle way, you could see her relax more and more, until eventually as soon as she clocked anybody walking past the room her arms shot out and she smiled a smile that no one could refuse. She was showered with attention,  cuddles, toys, smiles and compliments. She had her favourites, including a young man who came to clean the room each day. I think at first he wasn't sure what to do when she scrambled to the end of the bed every time he came in but I think he actually began to like it and made excuses to come and see her.

Sam was allowed to stay with us at the hospital, making the night shifts a bit easier. When Ivy's glucose levels begin to creep up, she becomes very irritable and finds it really difficult to sleep. One night we were both shattered and found it particularly hard to try and settle her, at 11:00pm a lovely nurse called Sarah came and offered to take her for a walk,  the next thing I knew it was 4am and both Sam and I had fallen asleep. I went to find Sarah, Ivy was fast asleep in her pushchair, all of the night staff had taken it in turns to play with her, including the doctors. In that time she had also had a hypo, been given some glucojuice (high glucose concentrated fluid) and some toast which sent her sugar really high; she is so sensitive! The staff let us catch up on some sleep and dealt with it themselves, some might say it is their job but I think they went above and beyond what they could have done.

Soon we met the diabetes team who will look after Ivy until she is 18, we needed to learn how to inject her ourselves and the thought of this terrified me! We were given a dummy pen and a piece of plastic, fake 'skin'. Sam felt able to start learning before I was, he practised a few times and then gave her a half unit of Novorapid; her fast acting insulin. It took me a few more days, the nurses were so patient and understanding, my heart raced just using the dummy pen and piece of skin! I can still recall the feeling I had when I had to give Ivy her first injection; my hand shook as I hovered above her soft baby thigh for a few extra milliseconds. I pressed the pen and held it in place for 10 seconds, they were the longest of my life and once I removed it, I realised I had stopped breathing!  It has got easier but I don't think I will ever get over the feeling I have each time we make a tiny little bruise on Ivy's perfect body.

Whilst Ivy was our priority, our family and friends made sure we were fed, clothed and looked after. Sam's parents brought us our tea every night; the lovely home cooked meals couldn't have been more different to the meal we had the first, terrifying night, we were in hospital...worried and simply eating for something to do, we ate a non-descript beef curry and rice from the hospital canteen, only open for an hour at midnight! It hit me how much we take for granted, being able to pick up anything we fancy and just eat or drink it. That would never be the case for Ivy; another new challenge we faced was to work out how many carbs there are in every single thing she ate, then work out how much insulin she would need to balance it. Thank god Sam is more mathematically minded than I am!

We left The Tree House on a Tuesday,  9 days after being admitted.  I felt so nervous but ready to go, we were going on 'home leave' which meant we could go home for the night and if we needed to,  we could go back the following day. Armed with a supply of needles, insulin, glucose test strips, epi pens, monitors, sharps bins, ketone test strips, diabetes diaries, food diaries, leaflets, booklets and a full A4 list of what Ivy will need on repeat prescription, we said a very emotional goodbye to the nurses and went home to our little house. After our first night of independent injections, decisions and 2 hourly blood monitoring, we decided we were ready to be discharged. That word sounds so final!

Diagnosis Day

One Friday, when we were out for a walk, Ivy almost instantly went from a smiling little girl, enjoying a pear in the sunshine, to a little girl slumped in her pushchair with her head tilted to one side. Assuming she was tired, we carried on walking but within minutes she began being violently sick. My friend helped me to get Ivy changed, people were walking past giving sympathetic smiles but carrying on their way. Before we got home, Ivy had been sick again and she fell asleep. She slept for hours. In January this year, she had gastroenteritis and these symptoms were almost identical, minus a temperature.  Whenever you take a baby to the GP, more often than not you get told your baby has a 'virus', to give them some calpol for their temperature and keep an eye on them, with it being the weekend we thought we'd do this, wait until Monday and if she hadn't improved, we would go to the doctor.

Ivy slept all weekend. She woke every couple of hours to drink some water and go back to sleep. Both friday and saturday night, she woke needing a new nappy, she normally lasts the night with the same one, but these were more than saturated.  She was soaked through, her vest was wet right up to her neck and her cot sheets needed changing, we just put it down to her drinking more water.

We have taught Ivy to do some simple baby signs and on the Sunday morning she made the sign for food, we thought this was a sign she was getting better, as she hadn't had any solids since that pear on Friday (we now know it was because she was literally starving). We gave her a yoghurt and disappointingly,  she was sick within the hour. It was after this that her tummy became very bloated and her breathing very heavy, her chest drawing right in.  After calling the NHS 111 number, they advised we take her to our local out of hours service.  There we saw a wonderful GP who had enough of a 6th sense to request a urine sample, going above and beyond what she could have done. Sam took the sample back to her a couple of hours later, he rang me saying that there was glucose in Ivy's urine and we had to take her to Stepping Hill Hospital.

We arrived at the Tree House, the children's unit within the hospital,  and assumed we would be told she had a virus and she would be monitored for a while.

Ivy sat on my knee, trying her best to be interested in her 'That's not my hamster' book but quickly became quite limp and her head flopped back, she couldn't hold it up. The assessment nurse checked her bloods and couldn't hide her shock when it read 24.1, exclaiming that it was very high. A normal range is between 4 and 7... shortly after  that a senior consultant came and sat with us, pulling the cubicle curtains to hide us from the ward she very gently explained that as well as having high glucose levels, Ivy also had something called ketones in her urine. These 2 indicators combined are typical of Type 1 Diabetes. She said it will take a few minutes to sink in, I felt like I'd been hit with a sledge hammer and I cried,  instantly thoughts were flying around my head, I questioned and blamed myself, had I fed her the wrong foods? Had she had too much sugar? Some of the many myths that surround T1D. I felt guilty that her pancreas didn't work properly, I made her so surely it was my fault it was broken? I was reassured, there is no prevention, it will happen regardless of lifestyle and environmental factors.

Ivy was taken to the High Dependency Unit, her ketone levels were 5.9, emergency treatment is needed at 3. By this time her hands and feet were purple, her body was shutting down and keeping it's blood near to her heart. For 2 hours the consultant and 4 nurses tried to insert a canula into her tiny veins, they prodded and poked but it was proving impossible.  It was so urgent to get her rehydrated and start flushing the ketones from her body, that they decided to drill into a bone in her calf, at this point we left the room. We waited outside for 45 minutes, hearing the occasional painful, cry. A nurse eventually came out and asked our permission to shave her hair, the drilling hadn't worked and they'd decided to access the veins on her head. When we eventually went back in to see her, she was lying flat  on the bed, with tubes attached to her head, being flushed with saline solution. She was drifting in and out of consciousness but at least they were able to start removing the acid that had built up in her blood.

They moved us to a room in HDU where she was connected to a drip; wires were connected to her for monitoring her heart rate, oxygen levels, blood pressure and breathing rate. She looked so small and we felt so helpless. A registrar explained that they had never had a baby diagnosed with T1D, so young,  and they were unsure about the amount of insulin to administer,  they decided 0.3ml per hour was to be the starting point. They were in constant contact with the specialist diabetes team in Manchester. The phrase DKA was mentioned several times but nobody explained what it was.

We later found out that Diabetic Ketoacidosis (DKA) is a dangerous complication of diabetes caused by a lack of insulin in the body. It occurs when the body is unable to use glucose because there isn't enough insulin to break it down. Instead, it breaks down fat as an alternative source of fuel. This causes a build-up of a by-product called ketones.

DKA is potentially very serious. High levels of ketones in the blood disrupt normal working of many parts of the body. The more ketones in the blood, the more ill a person with DKA will become. Left untreated, DKA can cause potentially fatal complications, such as severe dehydration, coma and swelling of the brain. The NHS advises that you seek emergency medical assistance if you show any of the symptoms (extreme thirst, tiredness, frequent urination) and vomit; this was Ivy on the Friday.

Ivy had to have blood tests every 1-2 hours and because they hadn't succeeded in inserting a canula for taking bloods they had to use a heel prick test and simply squeeze,  squeeze, squeeze her little feet to extract enough blood for 2 vials, a gas test and a glucose test. For days after, they were bruised, sensitive and swollen.

After 24 hours Ivy was allowed her first breastfeed since getting to hospital, the effect was instant, she relaxed and was so gentle.  I will cherish that moment forever.

The 0.3mls of insulin didn't work and it was decided Ivy should have her first injection, they gave her the smallest,  possible amount 1/2 a unit and the effect was quickly noticed.  12 hours later we were downgraded from HDU to Special Care, a big step in the right direction for our Ivy Revival.

Introducing Ivy

Ivy is our little girl, she is 11 months old today and I cannot believe that this is the last month of her first year. She is the most amazing thing to have happened to me, she makes me laugh every day.

She is the most positive little thing and hardly ever cries or complains; I am sure I sound like a very self righteous mum, singing about her baby, but when you love something so much, why wouldn't you?

Ivy has lots of favourite things; her favourite food (without a doubt) are blueberries,  she could demolish an entire punnet in 5 minutes! Her favourite way to spend a Friday morning is to go to Jo Jingles, a music movement session. She is the little geek of the class, shaking a marracca, patting a tambourine,  clapping and waving when she is supposed to, sitting straight up, focussing her whole attention on Charlotte and Jo! Her favourite thing to do at home is make her way around the living room with a tiny piece of fabric, "cleaning" anything she can. She loves her treasure baskets and thrives on routine. She loves to dance, bopping up and down on the spot, or moving her legs like Elvis, to any music she hears. Her favourite songs are "If you're happy and you know it" and "Wind the bobbin' up". She is so sociable and has lots of friends, her best friend is a little girl called Jessica. She is still breastfed and has the most amazing appetite for solids, the only thing she won't eat is broccoli,  which strangely enough was the one thing I couldn't stand when pregnant! 

I could go on and on talking about my little best friend, she loves life and is never bored pottering around with such an innocent curiosity. 

There is one thing you should know, as it is the reason for this blog, on the 13th of April 2014, she was diagnosed with Type 1 Diabetes. Nobody could have prepared us to hear those words, the tears were pretty instant and the unnecessary guilt quickly followed. In minutes she was swept away from us and was in the High Dependency Unit. A parents nightmare.