Just The One Journal

"I've got creon,  creon in my nose, creon in my toes,  creon in my hair,  creon everywhere" Learning your baby's natural routine or trying to implement your own is difficult, i'd planned to just listen to my baby and follow his lead...but you can't do that when it comes to medicines. From L-R: Bib, Creon in pot, Syringes with Flucloxacillin  Having a newborn with Cystic Fibrosis is hard. Antibiotics must be taken on an empty stomach so 2 hours after a feed or 1 hour before. Physio needs to be done morning and evening, but a crying baby wants food not physio. It is especially distressing to give Henry his Flucloxacillin antibiotics as he cries so much and pushes it out of his mouth. We called the nurses who advised to blow on his face fast which makes him swallow (a baby's natural reflex) and squeeze his cheeks. Yesterday was a triumph as he took all of the antibiotics and none dribbled out thanks to me holding his cheeks so his tongue ...

Henry actually slept between all his feeds until 3pm YES!! So spent the morning watching OITNB and then went for a walk over the bridge to Battersea Park. A beautiful sunny day in London, managed to pack his feed and nappies just incase and off we went for a lovely walk (even though lazily I am wearing my maternity pyjama top and just about bothered to take my trackies off and squeezed my post-natal wobbly body into my old dungaree dress...) Sailing boats on the Thames Still wearing my pyjama top...

2 weeks ago my son was diagnosed with Cystic Fibrosis. It was devastating. The 2 week window after the heel-prick blood test results had passed, so I was feeling happy we had 'no news was good news'  when the health visitor called up and requested my husband and I be around in the morning as people from the lab wanted to talk to us. "they prefer to speak to both parents". I kind of knew there was going to be unexpected news. The health visitor and a nurse arrived at our flat, sat us down and quickly told us that he had high levels of something from the heel prick test and wanted us to come in and talk to the doctors. It felt like a concrete slab had been whacked in our faces and we were both distraught both during their visit and after. They had made us an appointment and a few hours later we went off to the Royal Marsden Hospital for Henry to have a sweat test done to definitely confirm he had the illness. Now they said don't Google but of course I did, I li...