Week 5

Wednesday 19th November

Now I’m four weeks old I thought it would be a good time to give Mum and Dad a treat, so today I decided to show off my new smile. Mum got so excited by this I decided to smile a few more times to keep her happy. She then went round and told every nurse who would listen that I had smiled and so I showed it off to them too and they made lots of shrieking noises with excitement - women, they are easily impressed. Apparently I have a dimple when I smile too which helps the cuteness factor - am thinking this could be useful :-)

Mum and Dad had a visit tonight from the community paediatrician Lisa, she gave them lots of helpful advice about how to look after me if go home and checked me out to see how I was doing. She said she had heard from the other doctors that I was “scrumptious” and she was dying to have a cuddle and so I made sure I behaved myself for her. She was very nice and helped Mum and Dad a lot with what to do with me - am sure they will let me know if there’s anything I am meant to do.

OK mum I think I’ll be warm enough...

I also went for a nice long walk today with Mum and Dad round Bournville. Dad says Bournville is one of the best places in the UK because it is where the Chocolate comes from. I’m not sure what Chocolate is, but Dad says it’s like my milk but much nicer, so I think I would like to try some when I have some teeth. Bournville was very nice and it was really good to get some fresh air and try out my pram although I think Mum got a bit excitable and didn’t need to wrap me in so many layers.

Thursday 20th November

Today Mum and Dad had arranged to meet Dr Roper again to give her an update on my progress, she turned up just as I was having my nappy changed which was a bit embarrassing. I had hoped to look my best but that kind of blew that. Anyway, they got me dressed, bathed and looking a bit better by the time the other Doctor (Pat), Grandpa and the other nurses turned up so at least all was not lost.

Dr Roper told Mum and Dad how pleased she was I was doing so well and she wasn’t really sure what to expect from someone with my condition. As it was so very rare and she didn’t have much experience of it she wants to continue meeting me twice a month. I must be very special because Mum and Dad told me there are lots of specialists involved in my care now such as Dr Roper (who is very important and well known internationally apparently) and a Community Paediatrician called Lisa, the Diana Team of specialist nurses who will help Mum and Dad take care of me at home and of course all the lovely nurses here at ACORNS.

Anyway Mum and Dad got a lot of useful information out of their meeting with Dr Roper and Pat the other Doctor and they have decided to increase my feeds slightly and spread them 3 hours apart, starting with 2 1/2 hours and moving up slowly. Dr Roper also said that my DNA results taken from my blood back at the hospital will take a few more weeks to come back and then Mum, Dad and me will all get to meet with the Gene man (geneticist I think Mum said he was called) to discuss the findings.

I met a friend today called Harvey. He is bigger than me and makes lots of noise but I enjoyed chatting with him, he said his Mum and Dad were staying in the flat with my Mum and Dad. He also told me he was poorly too and had trouble breathing and swallowing like me but his Mum and Dad have got used to taking care of him now as he is 9 months old - I can’t remember the name of his condition but that’s OK as neither could he and it is a very big word for us babies.

ignore the limp looking wrist...

Friday 21st November

Today I had a rotten cold. I couldn’t stop sneezing and could barely breathe through my nose (having a tube up one nostril doesn’t exactly help). I had to have suctions every five minutes it seemed and even my Mum couldn’t settle me as I was totally knackered but just couldn’t sleep. Dad spent the day registering my birth. Mum said it was dangerous letting dad register my birth by himself as it was very likely he was going to misspell my name or get my birth date wrong. She said I may even run the risk of being registered as Samantha instead of Samuel depending on how awake dad is feeling.

Dad came back in the afternoon with one birth certificate for me (all details correct) and loads of post he had picked up from home. Among the post was some more cards for me to wish us well and some more cheques for ACORNS. I gave the cheques to Steph the nurse and she was delighted and said she was going to send thank you cards to all the donors.

Mum and Dad have also set a date for when they want to take me home for the day. Next Tuesday sounded good so Steph was going to organise the portable suction machine and oxygen to be available and to get the Diana team of nurses aware so they could come and visit me at home to see where we lived. I am getting very excited so I hope this cold clears up and I don’t have any more scary things happen to me to ruin my chances.

hair modelled by Billy Idol

wanted Dad to make sure I was properly covered with the hood. Dad muttered something about women but I didn’t hear what he said properly through all the layers of clothing.

After the walk me, Mum and Dad all watched the Rugby World Cup. What a fantastic match! - well that’s what Dad said anyway although I don’t know the first thing about rugby and if I’m perfectly honest I slept through most* of the second half. (* for ‘most’ read all)

A good day in all and I am chuffed we won the World Cup as it made Mum and Dad happy and this meant they were nicer to me i.e. less poking, prodding and exercises and more sleeping.

Saturday 22nd November

I feel lots better today. I have had a lot less secretions and only need suctioning twice in the whole day which is excellent for me. Mum thinks my cold may of gone as I’m not snuffly anymore either.

Since I was loads better Dad took me out for a nice long walk. When we headed off I was nice and cosy but half way through Dad got a call from Mum on his mobile saying she had noticed it had started raining and she

Sunday 23rd November

Everything was going really well today until Mum and Dad decided to show off their recent training by organising a change of my feed tube. To say I hate this is a huge understatement - well I think most people would hate someone sticking a huge hose pipe up their nose and down their throat. I’m afraid to say I sobbed like a girl when Dad pulled out my old one and then sobbed again when Hilary the nurse inserted my new one. Anyway Mum said my new tube is softer and more bendy and will last longer in my tummy, so hopefully it will irritate me less and will mean I wont need to go through this ordeal for at least another month.

More preparation was made today for my trip home Tuesday. Mum and Dad practised their physio on me although Mum refuses to do my suctioning because she says she doesn’t want me to associate her with anything distressing - Dad says she doesn’t want to do it because she’s a weed.

strike a pose

I don’t know why but Mum really likes it when I smile I at her - she even cried today. She called to Dad to get a picture of me grinning but Dad said he didn’t have the card in the camera to get any pictures done. I sensed Mum was then a bit annoyed with Dad for this.

Mum and Dad then left me and went out for the first time in a month. They went to the cinema to see a film called Love Actually, which they said had a gorgeous little boy called Samuel in which made Mum miss me lots so they were pleased when they came home -I was pleased too as they saved me from a noisy 5 year old boy who was sat in the lounge with me and keeping me awake.

Monday 24th November

Mum must really love me, she swore she had had it with needles after being pregnant with me and feeling like a pin cushion for nine months. But today the doctors told her she should have a flu injection to prevent her catching the flu and passing it to me, which could be very dangerous for me. Mum agreed to the injection and she didn’t even cry like I would (and I suspect Dad would too) and because she was so brave the nurses gave her an Eeyore to add to my Winne-the-Pooh collection - she was dead chuffed.

I wasn’t feeling great today because I had a sore throat, but I tried to hide it from Mum and Dad because I didn’t want them to cancel our trip home tomorrow. I hope I’ll feel better by the morning, because Dad says it takes quite along time to get home and I don’t want to feel ill in the car.

The doctor came to weigh and measure me today, I am now 3.46Kg (7lb 9oz) and 56cm tall (although the nurses call me 56cm LONG just because I can’t stand up). Because I have put on some more weight Mum and Dad have changed my feeds to every 3 hours meaning I get a chance for a good kip in between each feed.

Before I went to bed tonight Dad decided to give me some Calpol to help with my sore throat and snuffly nose, I’m hoping I get a good nights sleep so I feel good for tomorrow although I imagine I’ll be too excited to sleep. Good night.

Tuesday 25th November

Well what a day today was. Mum got me dressed really early while Dad packed up the car with all my things including my portable suction and oxygen machines. I then spent the next half hour saying my goodbyes to every nurse as they all said they would miss their cuddles in the day but they were all really excited for me to get a chance go and visit my rural retreat.

Then Dad put me in the car (and I love my car seat by the way - very cosy) and we headed home. Then five minutes later Dad realised he had forgotten my blanket and we turned around again to go back and fetch it.

Packing to go home was exhausting

Second time lucky we headed home again and this time made it all the way - it must of been a quick journey as no sooner did I nod off when we had arrived. Although I was excited to see ‘home’ I didn’t see any need to wake up straight away as I was making the most of my comfortable car seat.

I woke up with two very strange faces staring at me which gave me quite a shock. Both the faces were very black and hairy and had big green eyes - Mum then shooed them off, got me out of the car seat for a cuddle and fed me. Later on she introduced the scary faces as my cats Jack and George both of whom seemed very interested in me and kept wanting a sniff.

I got given a tour of the house after lunch and decided I really liked my bedroom. Its ace as it has a really comfy rocking chair which Mum and I sat on while she made faces at me making me smile lots.

Later on I was really full after my feed and Dad decided to change my nappy, but all the movement was too much for my full tummy and I decided to be very sick. Dad then rushed me downstairs and sucked out everything from my throat which made me feel loads better. I then fell asleep on Mum as my tummy wasn’t so full anymore and it was a lot more manageable for me to breathe. When Mum went to put me down she caught my tube plaster on her jumper and yanked out my tube! This upset me a little but also meant it was time to return to ACORNS as they knew how to put my tube back down and I really needed it for my next feed.

So we packed up our stuff and said goodbye to Aunty Claire and the furry black cats (it was nice of Jack to warm up my car seat too). When we arrived back they decided to put down my tube around my next feed, but this took a lot longer than I would of hoped and I have to admit I got quite upset. Mum and Dad both tried to calm me down but I wasn’t very happy and after my feed the nurses said I looked very pale and needed some oxygen as . I think they should also give some oxygen to Mum as she always looks very pale.

Auntie Claire tried to catch my smile, but she’s no David Bailey

After my oxygen I felt better but the nurses, Mum and Dad all agreed I wasn’t coping very well on my three hours feeds (as I was sick twice in 24 hours) and so over tonight they intend giving me it every two hours again. I am happy with this as I can now get some rest without a really full tummy. Phew what a day.... I really could use some rest now so am going to go to my moses basket and go to sleep - I will update you on how I feel in the morning. Night night...
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