100 days since Sarah-Hope's last transfusion - learning about platelets and parenting!

Platelet production

Today we are celebrating the fact that Sarah-Hope has not had a platelet transfusion in 100 days! As mentioned in Sarah-Hope’s 14 month update, it was exciting to realise at the start of the year that she might be producing her own platelets and that the year would hopefully involve less transfusions. Sarah-Hope had such bad gastro over the Christmas holidays that she had two transfusions just 10 days apart (due to the infection negatively affecting her platelets) instead of the three week interval we were hoping for. After her transfusion in January, we tested her platelets 12 days later and they were 73 – the best result we’ve had after 12 days. A week later they were 60, which we were really impressed with as that is not a very big drop given her history. We tested 26 days later and they had gone back up to 72, amazing! Then, over Easter she had another bad gut infection which knocked her platelets... but not enough to need a transfusion. We also know that while in many cases platelets normalise by school-going age, her platelets may also vary throughout her lifetime so we're keeping an eye on them. But for now we are delighted to have been out of hospital for 100 days, been amazing timing since we have a newborn baby in the house!

And now what… Parenting?!

With Sarah-Hope being out of the "regularly in hospital zone", life feels rather strange! We got so used to blood tests and hospital admissions - it didn't even feel burdensome, we just did it. On transfusion days I didn't concern myself with her general development, but just concentrated on trying to make the days as fun for Sarah-Hope as possible - her friends Gerry the giraffe and Spot the Dog, her favourite book from Uncle Michael, special visits from Granny Berg (who would keep the nurses on their toes and teach them a few dance steps along the way!) and her many admirers, including the driver who transports her platelets from the blood bank to the hospital and always took time to stop by and visit, would keep her well occupied for the duration of her hospital stay. But now our weeks are no longer punctuated by these events... and in a sense some of the medical cloud we've lived under has lifted. And in the meantime, Sarah-Hope is a toddler, a little girl with emotions and a serious will of her own...  she needs to be parented!

I find it amusing that people think that 'given what we've been through, regular parenting will be easy'! The problem is that because of what we've been through since Sarah-Hope was at 13 weeks gestation, we've never thought about any regular parenting issues! So instead of thinking about how to entertain her in hospital and keep her 'isolated for health reasons'... we’re now starting to think about play on an everyday basis and what socialisation should look like. Instead of how to minimise tears and help Sarah-Hope forget about those needles... we're perplexed about how to handle tantrums and the tears which accompany them. What's probably the most challenging about this is the ordinariness of it all. Previously the dominance of Sarah-Hope's health challenges put us in a space that was quite unique. The goal was simply survival and people respected that. Now we're dealing with issues that are more in the 'general parenting camp', where people have such strong opinions about what you should be doing as a parent (amazing how much energy people have to debate these topics!) even though nothing’s really black and white. I don’t know if it’s my fuzzy breastfeeding brain, or if all these areas are really so grey but I’m used to being someone with such conviction about any topic and I can’t seem to work it out!

On this journey from where Sarah-Hope’s medical concerns dominated to being concerned with the whole of her development path, I’ve been caught by surprise at my reactions to her emotions. I have watched as my daughter gets wheeled in for surgeries, had so many needles and drips inserted into her that I’ve never even tried to keep count, falls over and bangs her head as she works out how fast she can bum shuffle while maintaining balance… and have never shed a tear. But the thought of Sarah-Hope crying because she is sad seems too much for me! I think this is because I know that her journey will be one of emotional difficulty… and while we’re so grateful to be out of that phase where we were going to hospital most weeks, a whole other journey has begun. Loving, guiding and parenting Sarah-Hope through her emotional development is a whole new ball game. And it will require us to be aware of our own emotional health - which is not a bad thing.