The Difference Between Jacob and Lilian

Jacob and Lilian have both been stable over the past few days. So stable in fact that Lilian has been moved from Intensive Care to the downgraded High Dependency Unit (HDU), this means that she and Jacob are now in different Nurseries on the Neonatal Unit (*sadface*), but we have to take it as a positive that Lilian is managing better on her own and needs less medical intervention.

Lilian had a good cuddle with Mummy yesterday, and then it was decided that as she was tolerating her re-location so well she would be tried on 'High Flow' instead of her CPAP. This is the middle ground between having the breathing support of CPAP and having no support at all, so she is doing really well! She has now been on 'High Flow' for around 24 hours and spends a lot more time with her eyes open and nosing around the Nursery at the other babies! She now no longer has to wear all the kit she needed for CPAP so we get to see more of her beautiful face.

As she's now a big girl, she has to start getting used to wearing clothes and she has a pretty little vest to wear in her incubator!

Lilian's High-Flow Kit and first outfit!

Jacob also had a cuddle with Mummy yesterday (and hopefully today too) and it seems to be having some benefits for him - he has been very stable with his breathing but hasn't made any progress with it so unfortunately he is still on BiPAP. He has however, gained a massive amount of weight! Some of which is due to fluid retention so he looks a bit puffy, but most is genuine weight gain which has pleased his Doctors. His Stoma is functioning at varying rates, and this is something that the Doctors want to control a bit more, and the Surgical team are in frequent contact with Jacob to make sure they remain happy with how he is doing (one of the surgical consultants advised a few days ago that they may look to reverse Jacob's Stoma sooner rather than later if he continually loses too much from it. At the moment this is the last option they will choose but it's not impossible that Jacob could be back in Surgery sooner than originally anticipated).

Jacob looking a little fuller-faced

I was advised today that technically Lilian is ready to move to our local hospital, but as we have been told all along, they do not want to split Lilian and Jacob up, so Lilian will remain where she is. I was also told that they do not think Jacob would be ready to move for at least another couple of weeks, and due to the Surgical team keeping an eye on his stoma losses (and our local hospital being unable to provide the relevant level of surgical expertise), it is looking more likely that Jacob may not transfer to our local hospital at all, and simply be discharged from here when he is well enough.

This puts around another 2 months on our stay up here, which has been a bit of a blow as we fully expected to phase their return home via our local hospital, and get re-settled living at home before we brought them home. However, the Consultant's parting words on ward rounds were '.....but, there's a different Consultant on tomorrow so they may say something completely different'......... welcome to the uncertainty of our world!