Oliver has been doing really well lately and is now a whopping 9lb 11oz. He is still on antibiotics from his infection but they are due to be discontinued this Friday so we have our fingers crossed that his infection has gone.
The little dude is spending more time awake now and is really alert. It’s lovely that he now responds to our voices and looks right at us and we can interact with him a bit more. He’s still not too keen on his baths but we put him directly in the water the other day and he didn’t seem to mind it as much as when he’s in his bath seat. Rather than screaming he looked quite puzzled!
Oliver’s usual reaction to bath time!
His TPN has been able to be brought forward so his 4 hour TPN break starts at 2.30 pm and that meant we were able to take him down to Starbucks at the hospital restaurant today. It’s only the third time we’ve managed to take him off the ward so it’s still a real treat for us. Oliver even woke up to have a little look around!
Oliver also had an ultrasound on his liver last week which has shown that his liver damage has not got any worse and his jaundice levels are improving.
The bad news, however, is that his barium study has shown that he has less bowel than the surgeons had thought. He has about 20-25 cm left which is 25% of what he should have. To manage a “normal” life he needs at least 50cm so the next steps are for the surgeons to carry out a procedure to block the end of his stoma to try and stretch the intestine. This will involve another general anaesthetic and the process is likely to make Oliver unwell. This will take 6-8 weeks and when they carry out the reversal the surgeon is planning on cutting out a section of bowel and cutting it and sewing it to make a longer piece. We are very fortunate that the surgeon looking after Oliver is very experienced so we know he is in excellent hands! It’s likely this may postpone Oliver coming home and he will need TPN longer term so we will soon start to train how to manage his TPN at home.
We remain positive that we will finally get our gorgeous boy home one day and in the meantime we need to make the best of the situation…. we can guarantee Oliver will have the best decorated room in the hospital at Christmas!
As always, thank you for reading and following our little hero’s journey.
Oliver and Daddy in the coffee shop
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
After a week of good progress we’ve had yet another set back, this boy knows how to keep us on our toes!
On Tuesday Oliver’s scalp cannula was removed, his feeds increased to 4ml 2 hourly and his urso (medicine for his jaundice restarted) and he was alert, happy and all looked good!
Oliver enjoying a nice cuddle with Daddy
On Wednesday we noticed a strange rash on Oliver’s left leg so vitamin K was started, thankfully this hasn’t spread or got any worse. He was due an eye check up this week but it was decided to postpone this until he’s better. We had signs Oliver wasn’t himself on Thursday and Friday as he’d been unsettled for the nurses and very sleepy when we visited. The decision was made yesterday to move Oliver back to Ward 12 for closer observation over the weekend and another antibiotic has been restarted. Whilst all of Oliver’s observations have been good his haemoglobin levels were a little low so he’s now had his tenth blood transfusion!
Oliver has been visited by the physios this week who have been great at suggesting exercises to strengthen his neck and encourage him to face the other way as he tends to favour facing to the left and is getting a wonky head!
We also met another member of the surgical team yesterday and they will be doing a barium study on Oliver, once he is well enough, to see the progress of his gut. We were given another reality check when he explained that even when the stoma reversal takes place there is no guarantee it will be a success and another stoma may be needed.
At the moment it feels we will never see the day we get to bring our boy home but we’re trying our best to stay upbeat!
On a more positive note we had a meeting with Action Medical Research this week who are funding a study into the causes of NEC at the moment and I will soon be sharing our story with them. Oliver took part in the Dove Study
before he developed NEC and hopefully his results might give some clues to why this terrible disease occurs.
One gorgeous sleepy boy having some tummy time.
Until next time, keep sharing and following on Twitter @franhjones!
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
Well we finally made it outside. On Monday Oliver’s TPN finished in time for us to be able to take him for a walk around the outside of the hospital and to the restaurant for a cup of tea. It was so nice to be able to be able to take our baby for a walk, even if it wasn’t in the most exciting of places. Oliver seemed to like his pram anyway and slept the whole time!
But just when things were going well Oliver started spiking a temperature on Monday and today (Wednesday) it was decided his broviac line has become infected. As a result his TPN has had to be stopped and he’s had to have a cannula in his scalp to give him fluids and antibiotics. His feeds have also been stopped.
As I arrived today Oliver had just had his cannula inserted into his head and his jaundice levels have risen so he looks quite yellow and waxy. He is also back on oxygen so this all came as a bit of a shock.
As Oliver needs extra support he has now been moved to a high dependency ward where he can be monitored more closely. He has had his fair share of attention with nurses, doctors and surgeons all visiting him and deciding the best plan of action.
Oliver relies on his broviac line for his TPN and will need this line for a long time so the doctors are trying to clear the line infection with antibiotics. If Oliver deteriorates further then the line will need to be removed, which will mean another trip to theatre for another line.
It was very hard leaving Oliver today as I’ve just sat and cuddled him all day, holding his dummy while he’s been wriggling around as he’s missing his bottles. Whenever he’s been poorly before he was very young and slept most of the time but today his big eyes were looking at me and I just wanted to make it better.
Get well soon little dude!
Please continue to follow my blog. I have added a Donate tab which links to my Just Giving page where all donations will go to Leicester Royal Infirmary Neonatal Department.
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.
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!