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!
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