Meredith Ward sang my song today on rounds. Rose will stay in Level 3 on high-flow as it’s assisting with her feeding. The air pressure means it’s easier for her to swallow and keep her airway open so less effort. She fed really well today compared to previous days and seems a lot happier and more robust generally. Who’d have thought I’d ever be grateful for high-flow. I couldn’t wait for her to get off it last time! Ventilation means Level 3! Happy with that.
Guy Henry was around last night checking on one of his bubs and caught sight of us in our corner so he came over for a chat. He suggested a Fundoplication and gastrostomy for Rose to treat her reflux and keep her airway safe. Meredith said this morning that that is something we’ll need to look at if Rose isn’t progressing with her weight and feeding and ability to maintain her airway in about 6 weeks time. So we have been given a reprieve. I feel so relieved that we can just take a few weeks to establish feeding and that we’ll be doing that in the extra safe Level 3 environment. I am like a different person today. Rose can tell. She gave me 3 (count them) HUGE smiles today, each followed by a little weep as I think they overwhelmed her. Gorgeous.
Jo visited today and brought a wrap for Rose and one for me (the kind you eat, Lola!). Mum delivered a beautiful rose card and squeeze toy and jumpsuit for Rose from Isla and Louise, Isla had dictated both cards. I love that Rose is part of your family dialogue already even though she can’t meet all her playmates yet they all know about her and think she’s a bit special. I love that!!