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!
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.
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)
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.