Well Ashling is finally smiling and getting used to being at home. It took longer than we'd expected for her to figure it all out! But she's a lot more relaxed now.
A quick update on her wellbeing since we got home: Unfortunately when we went in for an appointment with the Orthopedic team, they decided that Ashling would benefit from a few more weeks of casts as one knee wasn't as straight as the other so she's back in the full leg casts - poor little thing cause it's very hot here in Auckland at the moment. Only a couple more weeks hopefully. The team in there are fantastic though and couldn't be giving her better care.
The biggest challenge since we've come home has been her feeding. She has developed very bad reflux, which apparently is quite common for babies who are predominantly fed by tube. This means that her feeds are taking ages and she's pretty uncomfortable during them so we have to take frequent breaks. We're hoping things will improve though as her Dr has prescribed something which should help.
In relation to her oxygen, she seems to be more comfortable and doesn't seem to be working as hard with her breathing so the home care nurses have started trying to gradually wean her down or off the oxygen. So fingers crossed over the next few weeks.
Otherwise, she's gaining weight and looking good - we just need to get rid of the bloomin' tubes!
Sorry that I haven't been in touch, it's been really busy. Ashling has been getting excellent home care with almost daily visits and she's getting her casts changed weekly as well so I haven't had time to do anything, besides take care of her. I've decided to stop expressing milk though and start giving her formula (very tough decision!) so hopefully that will give me some bit of time. Feeding has been taking well over an hour, then I express and then have about a half hour before it starts all over again. Pure madness! Things should start to ease up now hopefully. Bring it on!!!
Thanks again for reading this. Will put some more photos up in the next week or two. xxxxx
