Week 2

Wednesday 29th October

I did very well overnight and managed to stay off my ventilator all the time. This morning my nurse Amanda (sheís actually a midwife) increased my feeds to 8ml an hour, which concerns Mum a little because she is not sure sheíll be able to keep up with me. They have also decided to add 1ml of ďrapid weight gainĒ liquid to my milk to help me put some weight on, so this time next week Iíll be ready to help Dad put shelves up.

This afternoon all my grandparents visited, including Grandad C who I have not had a chance to meet until today. He wasnít the most exciting, so I just slept through the whole visit.

The best news of the day is that I have been transferred from the Intensive Care Unit (ITU) to the High Dependancy Unit (HD). I managed to keep the same incubator so I was not too disturbed. If I take after Mum then high dependancy should be about right, at least thatís what Dad says.

Anyway, must get some sleep now as I have my biopsy at 1pm tomorrow.

just a little bit longer mum...

Thursday 30th October

I was feeling very energetic this morning. Mum and Dad came in and I had a quick peek at them and started waving about my arms and legs. I had thought that if I  performed a little for them this might encourage them to call off the biopsy, but sadly Dr Helen Roper arrived at 12 oíclock.

As I have been doing so well they decided that instead of giving me some morphine they would try with just paracetamol and a local anaesthetic, so as not to make me sleepy again. So 10 minutes later I had a cut 1 cm long in my left thigh with a huge bandage wrapped around, making it look a lot worse than it is. This is very good for effect, so am hoping its worth lots of attention.  I heard Dr Roper tell Dad I was very brave and didnít cry (am glad Dad didnít mention I am actually unable to cry just yet). She also mentioned that I might get a little scar where the cut was, but Dad said this wasnít such a bad thing for a boy as it makes them look tough.

Dad keeping a constant vigil

Shortly after my little operation I was wide awake again and this time checking out my parents with both eyes wide open. I didnít think much of the faces they were pulling at me through the incubator port hole, so I spent the next hour studying my hand instead. My nurse Emily then gave me another feed (am on 12 ml an hour now) and this made me very sleepy so Dad also went off for a kip  - he wishes he had someone to squirt food into his tummy every hour then he wouldnít have to bother waking at all.

Evening update: Todayís activities really started to take it out of me and so at 8pm they decided that since I was struggling to breathe properly they would return me to the ventilator in the Intensive Care unit. They put the tubes back in my mouth and this really helped me to relax a little. Having got the tubes put back they also had to give me some diamorphine to ease the discomfort so I began to feel really sedated again - guess this means I can get some rest after a particularly hard day.

Friday 31st October

Today was a pretty quiet day as they wanted to let me build my strength back up after yesterday. They started to feed me again (they stopped last night when I went back on my ventilator), this time 15ml an hour, which is a full feed for me.

The results of my biopsy wonít come back until next week, so I think Iíll just be hanging around until then. The good news is my new spot in Intensive Care is right next to the radio so at least I get some entertainment, the bad news is they keep playing that Rachel Stevensí song. The even worse news is this encourages Mum and Dad to sing to me. So if anyone can send me some earplugs, my address is Bed 3, Neonatal Unit, Heartlands Hospital, Birmingham.

Mum and Dad seem a bit upset with me for being back in Intensive Care as they were hoping I was slowly working towards coming home.

Dad says I have to work on leaving as soon as possible, otherwise Iíll develop a Brummy accent and my first words might be ďyooorightĒ or ďUp the VillaĒ.


meet the new hat...think I preferred the old one.

Saturday 1st November

Today was a very busy day indeed. Firstly Grandma R came to see me in the morning, I had arranged to meet her at 12:00, but she was so excited to see me she arrived about 11:00 - typical. Luckily I was already dressed and accepting visitors. After that Dr Roper came back to see me, but I think she was mainly interested in talking to Mum and Dad. She told Mum and Dad that she had the results of my muscle biopsy already, which is much sooner than expected. It turns out I am suffering from a disorder called Myotubular Myopathy, which means nothing to me and even less to Mum and Dad. Anyway, Dr Roper explained it all and it went something like this:

Myotubular Myopathy is a very rare genetic disorder, which effects the muscles of newborn babies. It mainly effects boys rather than girls because it is caused by an abnormality normality found on the X chromosome and as girls have two X chromosomes (and boys have one X and one Y), girls normally suffer less because the second X chromosome does not have the same abnormality. Anyway, the problem is that my muscles stopped developing correctly a very long time ago (when I was in Mummyís tummy) so they look like they are the muscles of a very small foetus. This means that my muscles are not strong enough for me to breath on my own and apparently they wonít get better and there is no treatment they can give me.

Mum and Dad seemed to be very upset by this news, because they donít know what to do to make it better. Iím donít know what all the fuss is about because I am perfectly comfortable where I am. I get a nice warm bed, 24 meals a day, cuddles with Mum and Dad and my nappy changed as often as I want, but you just canít please Mum and Dad.

Anyway, after the chat with Dr Roper every man and his dog (well not actually his dog, they are not allowed into the hospital) came to see me. I saw, in no particular order:

Grandma and Granddad C, Grandma and Granddad R, Uncle Tony and Auntie Kate, Uncle Jonny, Auntie Claire, Auntie Sarah and Uncle Steve. They were all very nice if not particularly smiley (they all sat and cried a lot), but by 7pm I was knackered .

At midnight I had a nice long cuddle with Dad and they gave me a nice new outfit to wear. Although Iím not sure bunnies are really me, itís far better than being naked - especially if Iím to keep getting lots of visitors.

The other news of the day is that I am still getting full feeds and they have taken me off my drip (actually last night). They have also taken me off my antibiotics because my cultures came back negative, which is very good because it means I have one less needle in my hand.

Sunday 2nd November

After yesterdayís news that Iím not going to get better, the nurses have let Mum and Dad stay at the unit with me so they get a bed too. Mum says their bed isnít as nice as mine and they donít get fed every hour either - Iíd be inclined to ask for a new room if I were them as it doesnít sound very good.

Anyway -this morning they said my tube had slipped into my oesophagus (whatever that is) and that was why I kept choking and bringing up my breakfast, so they decided to take out my tubes to see how I did unventilated. The consultant spoke with Mum and Dad about the best way to look after me (since there was no treatment they can give me to get me better) and they decided that I should be made as comfortable as possible and not to be ventilated again as it is isnít very nice for me. So the doctors left me in my incubator with a little oxygen and kept giving me some diamorphine to make me happy. The only annoying thing was I canít swallow my secretions, so I kept having to be sucked out every hour.

I then got moved to my own room! Mum and Dad were very impressed as they said it was very special treatment indeed, especially for the NHS :-)

The Doctors asked Mum and Dad if I wanted to be christened and they decided it would be nice, so a lovely Vicar came to see me and I was baptised with just Mummy and Daddy and Marie the nurse present - I didnít think much of the event and wasnít too bothered by the water being splashed on my face and had a nice sleep afterwards.

After my sleep I decided to make the most of things and so spent all evening (and most the night) awake and playing games with Dad. First we spent hours examining my hands and then we had a good chat. Mum meanwhile was crying lots - not sure why because I am perfectly happy. I also got to wear some of my outfits they had bought for me and chose this top with the cat on the front saying Ďmeowí - I remember hearing a lot of meows when I was in mummyís tummy.

Monday 3rd November

After a long night of playing and chatting with Mum and Dad I finally got some rest.

The specialists and doctors came in to talk to Mum and Dad again and to see if there was anything I needed. Dad asked if they could make me more comfortable as the secretions were building up a lot and this was giving me trouble breathing. They decided to give me some more diamorphine which should slow down my breathing and relax me more. This seemed to help as I was able to stay awake when I wanted to but felt loads more happy and comfortable.

I was still getting full feeds every hour (15ml) and my diamorphine, but as that was all I needed Mum and Dad got to have more cuddles with me because there was a lot less tubes and wires attached to me. I liked the cuddles and fell asleep on dad for a long time.

The most exciting news today was they stopped my extra oxygen as I didnít really need it. Mum asked if they could move me to a cot instead of my incubator so I got a brand new bed! This was much more interesting as I could see loads more and Mum and Dad could touch me easier - the down side is I kept getting loads of load kisses on my head just as I was trying to nod off.

alright enough fussing mum...

the new Ďopen topí model

Tuesday 4th November

This morning the consultant came to see again to check that I was comfortable. Dad told them that I was getting a bit fed up of having the secretions sucked out of my mouth, so the consultant said they would be able to stick a small plaster behind my ear to stop so many secretions being made.

Mum and Dad also got a visit from a Family Care Officer called Christopher Reed. He came to tell them about a place for children like me called ACORNS in Selly Oak, Birmingham. Apparently they can take care of me like they do here, but also take care of Mum and Dad and they get a more homely room to stay in with me. Mum and Dad said they would think about it and see how I got on today.

No much else happened apart from my secretions got better when the patch started to work and this made me much more comfortable. I also think Mum and Dad could use some more sleep as they are starting to look a bit rough (but obviously I wonít tell them this as I donít want to upset them).

Finally - Happy Two Week Birthday to me!!

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