Just The One Journal

8.15pm I feel incredibly angry. I got a call from Henry's nurse this afternoon that his cough swab from last Friday revealed he had grown Enterobacter and needs to now go onto Ciprofloxacin. I was told that they had faxed it to my GP and I could collect and give it to him starting tomorrow and for 4 weeks, although the nurse then said that's unusual as its normally 2 so I really have no idea how long for. She mentioned that he needs to be away from sunshine or wear factor 50 as ciprofloxacin can make skin photosensitive. Now i'm really angry as he had previously been given this 3 months ago and I was never told this information. Also she said that this infection is related to the gut and its possible that he doesn't have a lung infection and that he may have acid reflux which went on the cough swab but just to be sure you better give him the antibiotics. The fact that they don't know for certain or haven't asked us in for another cough swab to determine jus...

On Monday we took our 12 week old son to the Royal Brompton hospital for his bronchoscopy and pH test and were a very apprehensive. The doctor's had briefly mentioned it in past clinics but no-one had talked to us about it in detail. Even after receiving the letter confirming the date the staff still didn't elaborate on when he could be fed afterwards or tips to help in hospital and for parents it is a very anxious and worrying time taking your tiny baby into hospital. Once again the feeling that we are being not told certain information so as not to scare us , leaves us feeling more alone and more worried. I searched the Internet for any more information on how to deal with a baby going in for a bronchoscopy but found nothing except medical terms which was very frustrating so I wanted to detail what exactly happened and how to prepare: 7am feed 8am fasting only a small amount of water  10am came into hospital. There was a bed shortage so we were taken to the pl...

"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...

Despite what you think NO-ONE moves out of your way, they actually barge their bags and person into you and push themselves first all the time. A priest, an actual priest, dog-collar and all, pushed past me on the street the other day. Need I say more. Women are the worst for not moving - there was 1 seat free on the tube, no-one else on the platform, she clocked I was pregnant and actually pushed herself on first and sat down. Kindly a man did give his seat for me opposite her so I gave her death stares for the whole journey. I don't know why women are the worst but I feel that they just look at me and go well it was your choice to be pregnant or they have never been pregnant and don't understand. Where are the discounts? Surely its logical to think that as we are far more exhausted and can't walk half as far as usual that they would give you a discounted rate on buses and tubes. I walk everywhere mainly to save money and I have been unable to walk down the street wit...

So we had a huge hassle with the buggy. Decided on a Silvercross because it looked really nice, sturdy and we will mainly be walking or taking taxis living in central london so we wanted something with big wheels and easy to move.  We ordered through John Lewis online for a Graphite colour frame and camel coloured hood, received the hood quickly but they said the frame could take up to 8 weeks delivery! waited 3 weeks, started to panic and thought baby might be coming soon and I still hadn't received any confirmation of when the frame would arrive. Popped into Peter Jones in Chelsea and they said that becuase Silvercross is actually made in China(so much for the famous 'British' brand) they won't be manufacturing it till early May and then a seperate department would inform me when they would deliver adding another week!! Baby is due on May 03rd so that went down well with me... So instead I cancelled and ordered the Chrome frame which took 3 days to arrive. I don...