January 10th is Clara's Lifeday. It's like a birthday, except we're not celebrating her birth (oh no, that's too normal), we're celebrating LIFE. For on this day, Clara was given a chance at life. Today, a year ago, was the day we talked (very VERY briefly, ie we shut that conversation down) about palliative care. … Continue reading Happy 1st Lifeday Clara!
I'd heard of a stoma, but I'd never seen one let alone cared for one. I'd certainly never even considered a baby might need one. Surprisingly, the majority of stomas in childhood are formed on babies - in fact, 1 in 10 need one. Clara's stoma is an ileostomy. The ileum is the last section … Continue reading Caring for a baby with a stoma
So I said in my last blog post that TPN breaks were some way off. Well it wouldn't be Clara if she went at 100 miles an hour and defied my expectations. Her blood cultures (after the positive) have all returned negative. So today we had a four hour break again! Clara's face below perfectly … Continue reading It’s busy, but it’s beautiful
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 … Continue reading Feeling more like us again
It's been a tough week. I'm exhausted. It's hard to describe the feeling, it's simply mentally draining at the moment. I spend all my time worrying about Clara that I have to remind myself to enjoy the moment. I'm sure every parent feels this, in fact I'm sure the worry never leaves: from the first … Continue reading Recovering from stoma surgery & investigating a blood infection