On The Mend

Hi everybody

Sorry I didn’t write an update last week but I was feeling a bit poorly.

I got to see my big sister last weekend and we had a big cuddle. She’s a bit silly but I really love her because she always gives me my dummy when I whinge!


After 2 days on Ward 12 I was moved back to Ward 28 as they realised I wasn’t that poorly.  I’ve got a new room right next to the nurses desk so I can shout when I want some attention!

I’ve had a busy week this week.  I’ve been visited by the physios who’ve been checking on my neck muscles. Mummy and Daddy sit me up and wave toys to get me to turn my head and keep telling me how clever I am! I’ve also seen the dietician who said I can have 5ml of milk every 3 hours.  I want him to let me have more but he won’t let me!

As I’m now a bit better on Wednesday I had my eyes checked which I hated (that’s why I’ve pretended to be ill for the last 2 weeks!) and they’re growing as they should be so no more nasty lasers! 
On Thursday I got to have my barium study so my Mummy and Daddy are now waiting to find out if my intestines are growing!  I had to have a chalky drink so they could do their special xray but Mummy and Daddy didn’t know so they freaked out when they checked my stoma bag and it was all white, ha ha!
Emma the play specialist came to play with me as well and did hand and foot prints with me.   I didn’t really like having my hands done so she got a bit messy trying to get me to flatten my hand.


Phew, it’s making me sleepy just sharing all my news so I’m off for a nap now.

Lots of love



Back to Ward 28

Hi fans!

Sorry I didn’t update you all last week but I was feeling pretty poorly. I’ve mostly been resting and fighting those germs.


This is me sleeping on my Mummy’s chest!

I had 4 days on Ward 12 where the nurses could keep a closer eye on me.   They soon realised what a tough little guy I am when after 2 days I took my oxygen nasal prongs out by myself and managed just fine and I moved back to Ward 28 on Saturday night.

Daddy had a shock when he came to see me on Thursday.  Mummy had warned him I was a bit yellow but he decided I looked like a corn fed chicken.  He’s so cheeky….I’ll get my own back when he changes my nappy next!

After 48 hrs with antibiotics locked into my broviac line to try and kill those nasty germs, the doctors tested my line again and it was ok so on Friday night my TPN got restarted.  I have had to have lots of blood tests, which means getting jabbed in the foot, but the doctors are happy that the magic numbers are getting better and I don’t look so yellow either.

I have missed my bottles so much and have been a bit of a diva demanding my dummy. ..a boy’s got to have some pleasure!  Thankfully the doctor said I could start having bottles again today so my Mummy and Daddy gave me 2mls of milk every 2 hours today.  It tasted so good even though it was only a tiny bit.

I still have my silly hat too as I need my cannula for my antibiotics for a few more days yet. The nurses try and wrap me up so I don’t pull at it but I’m quite good at wriggling!

I had my photo taken for the Leicester Mercury too as Mummy is trying to make people aware of how nasty NEC is and for this blog!

That’s it for now as I’ve got to get some rest as my noisy sister is visiting with Mummy and Daddy tomorrow as she’s got a day off school.

Keep following my mummy on Twitter @franhjones and my blog.
If you feel generous please donate via the Donate tab as this will help the NNU ward where the lovely doctors and nurses helped me get better.

Lots of love




More milk please!

Hi everyone!


It’s been a pretty uneventful week on ward 28 this week so I’ve spent a fair bit of time sleeping.  All this resting is paying off as I’m now 3.4kgs. The surgeons are going to do a contrast scan in a couple of weeks where they’ll be able to see how my bowel is growing and when they might be able to put me back together!

On Thursday my Mummy took me out of the ward for the first time. I didn’t have a clue where we were going and it was bright and noisy.  We went to the coffee shop and I could tell Mummy liked being off the ward with me for the first time as she nearly got happy tears!

My Mummy and Daddy promised me they’d take me to the park with my big sister today but my blood sugar levels have been a bit low so my TPN has had to be slowed down so we didn’t get chance to go. I was looking forward to going to this “outside” place they talk about as well!  I did get to see the playroom though and it looks fun..but hopefully I will be home before I’m big enough to play in there.

My milk feeds have been increased a little bit too which is good as I love my milk.  I’m having 8ml 3 hourly. I just wish there was more! I have special medicine too to help my liver which is a bit sour but I like it. Mummy and Daddy laugh because I pull a funny face and smack my lips together when I have it!

That’s all for now. Let me know what you’d like me to tell you next time.



PS. Because I don’t look poorly this picture shows why I can’t go home.  The line in my chest is where my TPN goes and below that is my stoma.


Oliver’s new bedroom

Hi everybody

So I hear my blog has had over 700 views now, impressive hey (a little like me!).

On Monday night I moved to my new home on Ward 28 at Leicester Royal.  It’s a children’s ward so it has lots of bigger kids as well as a few babies like me. I’ve got my own room with a big boys cot and I’ve got my toys to make it nice.
My sister will like it here because there’s a TV in my room and a big playroom.  The play specialist is even getting her a card and present for when she visits at the weekend. ..and I thought I was the special one!!

I’m now having all my feeds (4ml 2 hourly) in a bottle so I don’t have to have a silly NG tube up my nose anymore.  Everyone thinks I’m really sleepy but I know when theres a bottle in front of me and quickly make it disappear!

I got to have a nice cuddle with my mummy today but I was a bit too tired to play…I’m saving my energy for when Daddy comes to visit as well tomorrow.

Talk to you all soon.

Oliver. X



First bath and a new bedroom

Hello! What a depressing post my Mummy wrote!

I’m Oliver and I’m 101 days old now and apart from having a poorly tummy and a stinky stoma bag I’m doing pretty well. I’ve learnt I can get the nurse’s attention if I cry and I’ve not quite mastered how to keepy dummy in so I tend to go bananas if it falls out.

So today I had my first bath. Mummy and Daddy put me in the water and washed me. I was quite happy looking at my toys in my cot and then they put me in a tub of water, needless to say I let them know I wasn’t impressed. It wasn’t so bad in the end though and I got nice cuddles and a bottle after and they told me I’m a good boy (tell me something I don’t know).

I’m now too big to stay on a neonatal ward so I’m going to go to the paedeatric ward soon. Unfortunately this will still be at Leicester Royal Infirmary so my Mummy and Daddy will still have a long way to come each day.

After all the excitement of my bath I’m pretty tired so that’s all from me for now.