Roslyn is officially 100% orally fed 3 weeks tomorrow (15/04/22)!!! She went 100% oral feedings on the 26/03/22 after we slowly started topping her NG up less and less. We removed her NG on the 27/03/22, with the view that we could always reinsert it if needed, but hoped that swallowing would be more comfortable with a tubeless throat. Since then she has gone from strength to strength and her NG has never had to go back in!
She is taking in around 750-850ml per day with 7/8 bottles a day. She's gradually learning she can take bigger bottles and going longer between feeds but we are usually giving her a bottle every 2-3 hours in the day time and only one middle of the night feed if she asks for it (sometimes she doesn't and we get a really good nights sleep!). She is sleeping from 7:30is to 6:30ish and her night bottles are 11pm and SOMETIMES 3/4am (if she asks for it) so although she asks for bottles often in the day we do get a decent nights sleep between us all.
Her weight has dropped from the 75th centile to just above the 50th but she looks in proportion. her height is in the 96ths centile and her head circumference is in the 75th centile. Her dietician is happy with this so long as she continues to follow this new centile - they have stated if her weight is more than 2 centiles out of her height they may want to look as solutions to that. But as of right now everything is going smoothly - it is also worth noting that at birth her weight was just above the 50th centile so she is the same proportion as she was born now. So everyone is happy with her she is doing!
She has about 30% high energy SMA mixed into her usual SMA formula to increase her calorie intake. She is taking it well!
Worth noting that she is not on any reflux medication now - either her main reflux symptoms was due to overfeeding and now she is in control of her intake she has no symptoms at all. She may have grown out of the reflux phase. Or her NPA and NG being out has helped (the NG keeps the stomach open and can make babies prone to reflux symptoms). I think it may be a mix of all of the above but the biggest difficulty was definitely overfeeding in my opinion.
It seems she has overcome her bottle/feeding aversion! She is now happy to eat in unfamiliar places... Look at my girl being brave and eating in a busy hospital waiting room!
My husband and I are now starting to look into baby led weaning for the coming month or so! Getting very excited to introduce and play with foods and flavours with our little girl. But getting overwhelmed with what kind of sippy cup would be good for a cleftie... If you have had success with a particular kind please send me a message and let me know! We are in no rush as she is only 4 and a half months - but starting to research early and acquire useful bits and pieces!
Annd here is her 4 month photo... continuing to grow like a weed!
She certainly has come so far!
And the good news keeps coming. Her surgeon at Broomfield, Dr Kangesu and the rest of the team at the cleft hub (Speech and Language therapist, dietician and her cleft nurses) also all think Roslyn is doing amazing. They all remarked how quick Rosie was to no longer need both NG and NPA and she was one of the quickest babies to no longer need both tubes!
When Dr Kangesu had a glance at Rosie's cleft at 8 week - he stated she would likely have her cleft repair close to her 1 yr birthday. Somewhere between 11 and 12 months. But examining her at 18 weeks and considering how well she has been doing and the fact she is a big girl (thanks to mummy and daddy's tall genes!) we are now looking at doing her cleft repair at 9/10 months around October to beat the winter bugs.
I couldn't be happier. I am so proud of my little girl, my husband and myself. We are clearly quite the team <3