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!
Sunday, 27 April 2014
Thursday, 24 April 2014
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.
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.
Wednesday, 23 April 2014
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.
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