Hi, long time since I've written an update, things were moving pretty quick.
We have been home for two weeks now, getting used to a new routine. I am still on parental leave, trying to decide when to go back to work. The last few days at the hospital were pretty hectic, we didn't know until the morning of the day we left that we were actually leaving. It was 10 weeks to they day since her surgery when we went home. Charlotte picked us up and it took about 6 hours to get home with the stops for feeds and Ruby's meds.
Ruby went home on 7 medications (8 if you include the vitamin D drops). It has been a lot to get used to, she gets meds every two hours from 6AM to midnight, except for a break at 4PM. We are hoping that some will be able to come off in the next few weeks, specifically the blood thinner, that should be done in the first week of July, assuming the clots are gone. It has been a lot for us to get used to.
Ruby is doing well, she has gained 520 grams since coming home which is well above her target gains. We hope to stop fortifying her feeds soon, we have another appointment with her pediatrician next week. She is still on the same feeding regimen as when we were in the hospital. Ruby is much more happy since coming home and we can see her getting stronger too, holding up her head much better and sitting up in a high chair for a little while too. She's an amazing girl.
Ruby still has lots of appointments to go to, her doctors, physio and ocupational therapy, speech and language, etc. So things are still busy, especially since we need to bring her meds with us whenever we go into town. Lizzie has been a trooper too and is enjoying having her little sister home again.
Hoping this will be the last post on here. Thanks to you all for your support!