The procedure went well – Clara’s Hickman Line is in.
Clara spent yesterday recovering although she was very much her usual self almost immediately.
The general anaesthetic left her feeling sleepier than usual during the day so she slept on and off for most of the day, well and truly mucking up our routine. Clara mostly sleeps through the night… But not last night! 1am she woke up and fancied being entertained until 6.30am. I finally managed a coffee at 11am and boy was that caffeine essential to functioning today.
As we are on an open ward, rather than in a private room, it’s difficult to let her cry. On occasion, I know if I leave her she’ll settle herself. However when she’s really demonstrating those lungs I don’t want to be ‘that mum’ that means no other baby or parent on the ward gets any sleep. Clara doesn’t really cry, unless she’s hungry or wants to be entertained with cuddles, story time, and her dummy.
The Hickman line looks the same today as it did yesterday – a coil of pipe around her chest that goes into her chest one end and connects to her tpn fluids the other end. Currently there’s lots of dry blood around it but they won’t change the dressing for a bit to give the site more time to heal.
As well as a Hickman Line, Clara also had a new jejunostemy pipe put in during her operation. As the other pipe kept blocking, they’ve tried a pipe slightly bigger. This will also stretch the bowel slightly which is good for Clara as it means more surface area to absorb nutrients.
It feels like we are learning from the beginning about how to manage her new ‘accessories’.
Her jejunostemy bag functions the same but rather than be on a long flexible pipe like before, this has a solid plastic disk on her tummy where her pipe goes in and a very short tube before the bag. This makes it really hard to pick her up whilst ensuring the weight of the bag doesn’t pull the tube out of her tummy.
Her Hickman Line is also taking some getting used to. Whilst Clara loves having her feet free, I’m the one who’s nervous about touching her chest, or how I pick her up with her tubes, or which side I lay her on. I’m sure I’ll soon get to grips with it, but at first it’s very overwhelming.
The exciting bit:
The Hickman Line has finally given us our freedom. For the first time this year, Clara and I were free. Free to roam the corridors, free to go to the playroom with ease, free to have a cuddle, without all those pesky wires in the way.
To get this freedom, Clara needed to have the Hickman Line because this was the only line that could cope with taking her off the tpn fluids for a short space of time.
So today we had two hours off the fluids, meaning we weren’t attached to any fluid stands. Clara’s blood sugar was checked before we went, and after one hour.
We were lent the use of a pram from the ward and off we went on adventure around the hospital. We covered all the central corridors and ended up in the M&S cafe for a luxury hot chocolate. Crazily, I had forgotten to take her dummy, but Clara slept the entire road trip.
As I walked down the corridors, people gazed into the pram at the baby and said ‘so sweet’ and ‘so much hair’.
As I took pictures of the pram in the corridor with Clara inside, people must have thought ‘she’s mad’ or ‘she’s pretty obsessed with that baby’ – they’re right though, I’m both.
Tomorrow I’ll take Clara out in her own pram. If the weather allows, perhaps we’ll brave the outside with our woolly hats and snowsuits. Tomorrow would be only the second time Clara has ever been outside of the hospital walls.
As she continues to grow, as long as her blood sugar remains level, time off the tpn will increase.
The adventures are about to begin.
Clara and the Gutcracker 