Elijah’s recovering well. He’s more than 48 hours post op. His ventilation settings are reducing, he may come off the ventilator onto CPAP again this weekend. His catheter is out, he’s regulating his own blood pressure, and calm in himself. He has a new long line in his right leg, and has just started his TPN feeding through that line, via a combination of drip and syringe driver. This will go on 24 hrs a day from now until… I’m not exactly sure when, possibly beyond his first birthday. I’ve asked several questions about feeding – thoughts jump into my head, I ask a question, my cogs go round, I rapidly forget the original question and or lose the thread of what they’re saying. The children’s hospital will take us on after Jessops boot us out, they’ll deal with the longer term feeding issues. We’re still living day to day, but thoughts of possible long term issues are creeping on in. ‘How do you feed/deal with a baby who’s crawling while attached to a drip?’ I didn’t get a definitive answer.
I am still expressing milk every 3 hours. I do it in a small windowless room where I can lock myself away. I have to label each bottle with the mothers name, baby’s name the date and time. Since Saturday night when things started going wrong, every 3 hours (apart from middle of the night) I’ve been able to hide away for 20 mins, emerge again and fill in a label that connects me to him, write the advancing date and time, and think ‘we’re still here Elijah, we’re still here.’
He’ll barely need/be allowed any milk because he doesn’t have enough gut to process it, he’ll be allowed a ml an hour initially via NG, and this will increase incredibly slowly as the year progresses, if his gut grows/adapts or tolerates it. The TPN will sort him out for all nutrition. I have no idea at what point his mouth is allowed to get involved. I’ll ask that tomorrow.
His scar and stomas are healing. I’m not exaggerating when I say it’s 8cm wide. It’s from one side to the other. ‘A little like he’s had a Caesarian,’ I say. Cue the jokes about him not being able to Hoover for 6 weeks. But I’ve never had a Caesarian, so I’m told proportionately his is bigger than that. As our friends Anna and Andrew say, ‘chicks dig scars.’
We both dared leave him this evening to see Jonah and Amos. Jonah was weepy, and I think just wants a bit of normality. Amos just said to me, ‘duh, you don’t have to cry about it.’ they’ll be fine, and are being very well looked after by Grandparents. It was hard to see them and come away again, but as things settle we’ll get into a rhythm and routine.
I could write and write and write about all that’s going on in our hospital cocoon, But it’s late.
Our friend Liz shared this link with me today: it doesn’t half sum up the love, care and emotion the staff have ploughed into us and others on the unit in the last month.
nursing the nation