The support we have received from our friends and family has been amazing. People keep asking what we need right now. Apart from Clem getting better so we can all go home, there's not much we can think of that we need just at moment. Maybe a day off? Ha ha, no days off in parenting! A day we can all stay home in our pjs, without abandoning Clem? He doesn't get a day off from hospital though, so neither will we, for now.
The meals we have received have been amazing. Sending out huge gratitude to all those who've provided or offered more meals. However our freezer space is now full, and our need for meals has actually lessened in the last weeks, so thankyou, but we don't need any more meals just at the moment. Ronald McDonald House is usually self catering, but community groups come in from time to time and put on a dinner for everyone. In the first weeks we were here, there was just one dinner every 1-2 weeks, but lately it's more like 2-3 dinners each week. These are a nice chance to chat with other families, some of whom have been staying here for much longer than us. Although we are considered 'long term', I'm grateful that unlike others, we have some chance of being home in the next weeks/months.
If you're in Australia watching channel 7 TV today (not my first pick of how to spend a lovely sunny autumn Saturday, but you never know) you may have spotted Lena hamming it up for the camera. She's been filmed a couple of times now for footage to use during today's telethon to raise funds for the new 60 room Ronald McDonald House they plan to build just up the road. Sentimentality and cuteness aside, with only 19 rooms in the current house, we were very lucky to get a spot as many, many families are turned away. Hard as it is to juggle a preschooler and a baby in NICU, this would all be so much harder on everyone if our family were split up at this time.
Clem is doing well this week. He is an enthusiastic breastfeeder and has learnt so much in a week and a half of trying. They're still stealing back most of the milk he drinks by aspirating back up his naso-gastric tube, but at least he's able to find comfort and work on his skills. He's still being fed primarily intravenously, with just small amounts of breastmilk continously trickled through a tube into his intestines. At the moment it's just 2ml per hour, but that's been enough for him to poo daily for the last few days (again, hooray for poo!) so if things continue to go well, his milk feeds may increase in the coming days.
The big question of how much longer we'll be here is still unknown. Either at the end of next week, or early the week after, the surgeons will get together to discuss Clem's case and decide whether to continue the current plan, or do another surgery. We've sort of settled into the complete uncertainty of our current life. Day by day.
No comments:
Post a Comment