Boy is this an emotional roller coaster.
Only days ago I wrote:
“... it should have felt like we were close to getting back to ‘normal’. Back to milk feeds, tpn breaks, and walking around the ward with my baby in my right arm and her pump stand in my left. Perhaps looking ahead to what comes next.
But for some reason all of that still feels a very very long way away.”
And yet here we are: back on milk feeds (okay just 2ml every three hours in the day but it’s a start), walking around the ward with a dressed Clara in my arms and her pump stand just a step ahead.
Okay, so TPN breaks are some way off. But Clara went back on TPN today for the first time in nearly two weeks so that’s a huge step in the right direction. Forget the breaks, I’m so happy she’ll be getting such good nutrition again. Her blood cultures have come back negative so far for the awful AWFUL bacteria infection found earlier in the week in her blood – the conclusive result is due tomorrow. But with the amount of negatives we have had now, it was deemed safe for us to use her Hickman Line again. We are currently feeling very lucky as the lumbar puncture also came back negative. No words will describe the relief. I can’t really express simply what this means, but in short it means no going back to theatre for another operation and it’s given us an extra lifeline with Clara’s most important vein.
On Sunday Clara was dressed in ‘day clothes’ for the first time since her reconnection operation nearly two weeks ago. It just felt so good having my stylish girl back! She’s back to her inquisitive self, I love it!
I woke up Monday morning thinking “I’ve got this”. I woke up before my alarms. I knew it was going to be a good day (and my gut feeling is normally spot on… Except when guessing the gender of my unborn child… ) It was mostly, I imagine, because I had such a wonderful Sunday with my husband and Clara. Clara has been such a delight to be around all weekend, and I’ve enjoyed holding her close to me more than ever. The downside is now Clara gets upset if you put her back in her cot, why can’t she lie sideways being rocked in the arms of her Mummy forever?! Mummy’s backache that’s why…
Now Clara has recovered from her two operations recently, it’s back to tummy time. Laura, one of our lovely nurses, reassured me having a stoma will not stop us doing ‘normal’ developmental things. So I thought let’s get going. (I’m still paranoid Clara won’t reach developmental milestones for some reason… Damn you Google).
Clara was a bit bewildered with the new toy I’d got her to help build muscle and make it a bit more fun:
She loves kicking off with her legs, rolling herself forward. Hilariously she managed to roll herself forward until she softly face planted the bed. Honestly, it was funny… She was fine!
Tomorrow Clara has an MRI to reassess the unexplained white matter found on her brain when she was a newborn. Hopefully they’ll also scan to see if she has an auditory nerve between her cochlea and brain.
It’s another day of finding out more, but this time I feel prepared. Nothing now seems as bad as an incredibly damaging blood infection that could have already reached her heart and brain… It’s funny how life throws a little perspective in the mix when you need it most.
Clara and the Gutcracker 