Life at home – week one

We’ve been at home a week today and life is good! Clara’s even had the customary first baby bath in the kitchen sink!

We’ve really settled in as a little family and whilst we are still working out our daily routine, I think we’ve got the mornings nailed.

Breakfast has become one of our favourite times of day as we sit together in the kitchen, Clara eats her breakfast and I eat mine, sat in the dining room watching the trees and the birds over the top of the stable door. All this fun is exhausting though, not before long there’s a burst of energy for a quick play followed by a half hour nap.

Clara still sleeps beautifully all night. The hospital really did form a routine for us and I’m so glad it’s stuck! She’s in her own room and seems to enjoy being in there. I have a monitor in our room next to me but I’m still so sensitive to any movement on it – it must be paranoia from her ill days. If she so much as kicks her legs I’m awake. Hopefully I’ll be able to take lessons from Clara and sleep deeply soon.

We’ve spent a lot of time out and about. Taking Clara to the shops has been fun – I know I won’t say that in a few months time when she’s grabbing things off the shelves but for now it’s the normal things we are loving the most!

We’ve had a couple of hospital appointments to return for and (as strange as it sounds) it’s been enjoyable to go back. The hospital became familiar to us, it’s the one place I knew I’d be everyday and there were lots of people there who could help me. Our little friend was still on the ward as a patient at the time (now home) so we cheekily squeezed in one last play session in the sensory room.

Clara remains on parental nutrition four nights a week. It’s a lengthy sterile process to get her connected to her intravenous fluids for the night, but it’s so important we get it flawlessly right every time. Yesterday, Dean got all the way through the process up to the point where he has to access Clara’s Hickman line when he noticed a very small hole in the corner of a sterile glove. We had to start the whole procedure again, we simply cannot cut corners.

Once Clara’s PN process is over, and she is settled in bed, it’s back downstairs for us to finally get dinner on around 8pm. If we started the process before 7pm then Clara wouldn’t have much time with her daddy as he gets in from work about 6.30, but we can’t do it any later as fast forward 12 hours and there’s another procedure to take her off her fluids in the morning. Both procedures require two people (one to keep Clara’s arms and legs away from the sterile spaces!) so we have to get it done together before Dean can go to work.

Unsurprisingly, not much actual housework has been done. I’m out of practice! Six months living in a children’s hospital meant I didn’t do any, and before that… well we’ll go with the excuse I didn’t do much because I was pregnant. The upkeep of the house has been very much thanks to the house husband.

Today, we’re back up to the hospital for another X-ray as Clara’s new line still isn’t bleeding back. I’m interested to see what happens next, I’m not even sure what the options are. The only next thing to try I know of is on the assumption there’s another blood clot.

We currently use Taurolock, a line block solution that sits in Clara’s line when she isn’t attached to her IV nutrition, which should help fight blood clots, line infections, and occlusions. We might try a Taurolock-Heparin mix, Heparin being an anti-clotting agent to help attack any existing blood clots and prevent any new ones.

By this afternoon we’ll have a plan of action, but for now, I suppose I better dust off the duster. It’s time to get some housework done.

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