Size Does Matter


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

2 thoughts on “Size Does Matter

  1. Sorry to hear that Oliver is facing more surgery, he’s a little fighter though and I’m sure will continue to be in the future. His pictures are adorable!! So proud of you all in the way you have and are having to deal with every situation that has been thrown at you. It will all be worth it when you finally get to take him home. Keep positive, we’re all thinking of you, lots of love to you all xxxx

  2. You have a gorgeous baby. I remember when our daughter Mercedes was born at just 3 lbs. 2 ozs. She was such a fragile little gem. Now she’s almost 13 and as healthy and happy as can be. I pray the same for your precious little one.

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