Me and my scalp cannula
I’m writing this from the Children’s Intensive Care Unit because today I have had my 3rd broviac line so have been back to the theatre again! My Mummy came down to theatre with me today and gave me cuddles until it was time for me to go in. I have been a very brave boy and I’m just resting here before I go back to Ward 28. I need to have some more blood first which I think will be my 12th transfusion… I’m a little vampire really! Hopefully my TPN will be restarted later and even better, milk!
Gowned up ready for theatre
Yesterday I had an ultrasound on my liver because the doctors are a bit worried that my jaundice is not improving and that I look yellow. So after 4 months in Leicester I am going back to where I was born, Birmingham. This time though I will be going to Birmingham Children’s Hospital where they have a special liver unit that can keep an eye on me and hopefully make my liver better. They also have a really good short bowel unit so they can monitor me there.
I’m going to miss being on Ward 28 as I’ve made friends with lots of the nurses and especially Emma the play specialist. I might be back to Leicester yet though as Dr Patwardhan, the surgeon who saved my life, is keen to finish fixing my tummy!
That’s all for now.
Lots of love
First of all, hello to all my new followers! My blog has now had over 6000 views and I’ve got fans as far away as Australia and America!
I’ve had a good week and now weigh 10lbs 5oz! The doctors and nurses keep saying how well I look and everyone loves my chubby cheeks!
My feeds have gone up to 8ml every 3 hours which I love! Even if I’m having a sleepy day I still wake up enough to guzzle my milk!
On Monday the surgeons came to see me and put a catheter in my stoma. This is a long tube with a bung in the end and they keep the bung in for 4 hours and then take it out for 2 hours to try and stretch my intestines. I don’t mind it and hopefully it will work as I really want to see what this “home” place is like. It sounds nice!
Me and my big sis!
I’ve had lots of fun this week and Emma the play specialist has been to play with me lots. She brought me a special chair called a Bumbo and I’ve been sitting in there and trying to hold my head up. She sings lots of songs with me too and takes lots of photos for my special diary.
Mummy and Daddy have learnt how to lock my line when my TPN finishes so they have done this every day this week and that’s meant I could have a little walk round the ward with them. I love being out of my room, there’s so much to look at and lots of bright lights!
I had another bath this week and Mummy put lots of nice bubbles in and Daddy held me in the water. I splashed around a bit and decided baths aren’t actually too bad!
My big sister Ella had a day off school yesterday so she came to see me and gave me lots of cuddles and played with me. When my TPN finished we all went down
to the café for lunch but because I couldn’t have anything I had a little sleep instead!
I know when my Mummy and Daddy are with me and I love seeing them. I can almost smile and reckon I’ll get it sussed very soon! In the meantime it’s really funny watching Mummy and Daddy do silly things to try and get me to smile!
Having a nice cuddle with Mummy
My Mummy, Daddy and Ella are coming to see me in a little while so I better have a little sleep before they get here.
Speak to you soon.
Hello everyone and a massive thank you for sharing and reading my blog. We’ve now had almost 2000 views!!
Oliver has now settled in well on the children’s ward and becoming more alert and awake during the day…although he’s still a bit of a night owl.
Oliver’s big sister Ella visited on Saturday and loved the playroom on the ward and being able to play with Oliver as he was wide awake!
The consultant visited us on Friday and the plan is to continue to increase Oliver’s feeds providing he tolerates them and to slowly increase the time he spends off TPN. Oliver’s feeds have now gone up to 7.5ml 3 hourly.
Oliver is displaying signs of jaundice as the TPN affects the liver so this needs monitoring. The plan remains for Oliver’s stoma reversal to take place around Christmas time so we’ve set ourselves a new target to have Oliver home by which is Easter. (Sigh!)
Our latest drama is leaking stoma bags and we had to change Oliver 3 times yesterday! Oliver showed his impressive tummy muscles off by managing to spray poo into the air mid change too, it was like a fountain! Cue a bed sheet change too.
Unfortunately I can’t visit Oliver today as following the virus I had last week all my joints have become badly affected and I can’t move around very well and ended up at the local hospital at 4am as was in agony! I’m sure I spend my whole life in hospital! I’ve never suffered like this before and its very frustrating but hoping rest will help and I can be back with him tomorrow.
Please continue to read and share my blog. Oliver’s currently thinking of inspiration for his next instalment!
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.
As if being an hour away from Oliver wasn’t bad enough I’ve got a sickness bug so haven’t been able to see Oliver for 2 days so far. Good job Paul is taking lots of pictures for me although he’s back at work tomorrow so he won’t get a visit. I want to see him so much but need to know I’m not going to pass on my germs!
Oliver was moved from NNU to the children’s ward last night and has a side room because he’s young and in isolation. His favourite nurse Keara got him all ready for his move doing his care, changing his stoma bag and putting a fresh baby gro on and took him to the ward. He now has a full size cot so looks tiny in it.
Oliver now weighs 3kg (6lb 10oz)
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.
Today should have been Oliver’s due date. Instead he’s celebrating being 100 days old, in hospital.
Oliver was born at 25+6 weeks after I spontaneously went into labour. He was born at Birmingham Women’s Hospital, an hours drive from Leamington Spa where we live and weighed 2lb 1 oz.
Oliver just a few hours old
Oliver spent his first 5 weeks in Birmingham where he spent time on and off the ventilator until he was stable enough and until a cot became available at Coventry University Hospital. In Coventry Oliver thrived and was steadily gaining weight and increasing milk feeds as well as slowly coping with less support breathing and moving from CPAP to high flow and then low flow.
We started to regain some normality in our upside down world and things looked good.
When Oliver was 7 weeks we got a phone call, asking us to come in straight away as Oliver was unwell. Oliver had been put onto an oscillating ventilator to help him breathe as his tummy had become so distended his lungs had collapsed. The doctors suspected he had an obstruction or possibly NEC. We were told he urgently needed surgery but we may have to travel up to 2 hours away as Birmingham Children’s Hospital and Leicester Royal Infirmary did not have space. Thankfully Leicester Royal Infirmary were able to make a space. The transport team arrived who were reluctant to transfer Oliver and were told it was highly unlikely Oliver would make the journey as he was so poorly and his chances at surviving a major operation was slim.
We said goodbye to Oliver and made our way to Leicester not knowing if he would survive the journey.
Oliver made the journey and survived surgery where half of his small bowel was removed due to NEC. Necrotising Enterocolitis is very common in premature babies and causes their gut to become diseased and die. It causes high levels of infant morbidity and the causes are still largely unknown. He was still very critical and needed a lot of support and several more blood transfusions and at last count had had 9 transfusions. He had a stoma created and after 2 weeks the stoma was looking less healthy and the decision was made to take him to theatre to insert a broviac line and also look at his tummy again. A further 10-15cm of dead bowel was removed and within days Oliver’s stoma began working and his condition improved.
A very poorly Oliver the day after his first operation to treat NEC
Now 100 days old Oliver can only tolerate minimal feeds due to his short bowel and his main source of nutrition comes from TPN which is given intravenously. 2 weeks ago Oliver had laser treatment for ROP, eye disease common in premature babies.
We’d hoped to have Oliver home for his due date, Paul’s birthday in October and then Christmas. We were told yesterday this is not possible so we will have several more months of this. He is now outgrowing the neonatal unit and will soon be moved to a paedeatric ward until his stoma is reversed in 2-3 months. Once his stoma is reversed we will hopefully have a better idea of how well he will be able to absorb food and how long he will need TPN for…and when we can finally get our boy home.