The End of An Era

Never did I think a week ago that I’d be writing this today. Last Saturday we managed to get Oliver out of his cot for a play before he resumed sleeping. But not anymore as after 21 months of fighting Oliver decided enough was enough.


Just a week ago

The last six months have been so hard seeing our beautiful boy become so poorly but bravely solider on. 
We have always been realistic about Oliver and over the past six months in particular have had to face the reality of losing him more than once. Seeing Oliver’s eyesight deteriorate was one of the hardest things and we were increasingly concerned about his quality of life and what impact all the procedures were having on him.
Last week we met with Jane Hartley, Oliver’s consultant, and she told us that she wasn’t sure Oliver’s bowel was going to recover and we were all in agreement that Oliver had been through too much and we wouldn’t put him through any more major procedures. We also raised concerns about Oliver increasingly zoning out and struggling to focus and so Oliver had two scans on his brain.

On Monday afternoon we met with Patrick McKiernan who was consultant for the week and he sadly told us that the scans showed Oliver’s brain was slowing right down and that nothing more could be done. Within less than a week we had gone from knowing we’d lose Oliver at some point to we were going to lose Oliver imminently. 

We had spent the best part of 16 months at Birmingham Children’s Hospital and Oliver always managed to win the hearts of everyone he met and this week has shown what a loved little boy he was. On Tuesday and Wednesday Oliver had a steady stream of visitors all day with everyone telling their stories of Oliver and how cheeky he was, especially at night when he’d want to play, and of course his little chuckle.

People are so quick to criticise the NHS but we cannot fault them for all they have done for Oliver.  This week has shown how amazing both the NHS and the people that make it are. The Palliative Care Team quickly got involved and they and the Pain Team ensured Oliver had the best possible care and that he was as comfortable as possible. The staff of Ward 8 have been absolutely incredible, providing as much tea as we could drink and the best support. It’s easy to think nurses become immune to seeing children so poorly and not make it, but seeing the nurses so upset will always be something we remember as we realised how much a part of Ward 8 Oliver had become.

On Wednesday the nurses arranged to have a full size bed put into Oliver’s room instead of his cot and this meant we could both lie with him and cuddle him until he left us in the early hours of Thursday morning.

On Thursday we visited Oliver where he looked so angelic in the new babygro we’d left out for him, tucked up with Gruffalo.  We then said our final goodbyes on the ward before packing up and heading home for the final time.

Today was a bittersweet day as Oliver’s Nanny completed her 100ft abseil down Fort Dunlop to raise money for Ward 8.  Oliver passing away made her even more determined and we are incredibly proud of her!  If you would like to donate please visit https://www.justgiving.com/veronicasoar/


We’re not quite sure what we did before Oliver or what we do now but I know we’ll get through it as I have the best husband, daughter and in laws who came every week.  I’d like to say that we had the support of our friends and that we had lots of visitors,  but that wasn’t the case and this whole experience has shown who our true friends are.  However it has shown how strong we are and what an awesome threesome we are.

Sleep tight Ojlet



Something’s Brewing

Hi guys

It’s been a boring couple of weeks really with not much to report.  The highlight has probably been moving into a bigger cubicle!  I was in the smallest cubicle before and just to get out and play Mummy and Daddy had to move my cot and pump stand so I could play on the floor…but now I have a big room with a nice big window!


I went back to theatre again last Thursday to have the stitches taken out of my cornea transplant in my right eye and had some more amniotic membrane in my left eye and they’ve partially stitched my eye shut to protect it and hopefully that will help the bandage contact lens stay in.  The opthalmologists think I have the lost the sight in my right eye but they’re monitoring it closely to make sure the infection has gone.

I’m getting nowhere with my feed and my stoma losses are still high and randomly even higher some days.  I’ve had a few viruses too so am currently needing oxygen,  so even when I’m free from my PN,  I’m still confined to my room.


Playing while I have my nebuliser

Ella was here most of last week because it was half term so it was nice to see her, when she wasn’t gallivanting round the ward that is.  Mummy and Daddy have swapped round this week so I’ve been with Daddy so far this week and Mummy will be coming to switch with Daddy tomorrow.  Daddy thinks I’m getting poorly as I’ve been really sleepy and my blood pressure is really high too so the doctors are keeping a close eye on me. Jane,  my consultant,  is on service this week so I’m in extra good hands!


I love my Daddy!

As well as Nanny doing her abseil, my other Nanny Julie is going to do a skydive when she goes to Las Vegas in March.  She will be doing this to raise money for Ronald Mcdonald House as they are fantastic and Mummy, Daddy and Ella spend more time there than our proper home.  We are very lucky to have a Ronald Mcdonald House near the hospital as it means they can all stay near me.
You can sponsor Julie here www.justgiving.com/Julie-Goodwin3

Anyway, time for more sleepies