40 days and 40 nights…

So today has been one where I have laughed and cried, felt worry and pride, shock, upset and fear. It’s unreal how quick things can change, for the better and for the worse.

When Ash and I arrived today (well when I arrived as Ash was still queuing for a parking space) I found the Dr in Austins incubator and the sister holding a funnel shaped oxygen mask over his face – immediate panic! Turns out they were measuring his head as there had been some discrepancy in growth over the last 24 hours – super panic. I did the usual 50 questions routine, what ifs and all the rest of it…although I still found time to get a picture of Austin without his headgear on…(he breathed entirely on his own for the 5 seconds it took me to take the picture) ash arrived at this point.

Shortly after, the ward round started and we had a full update from the consultant. 

Rory – doing really well on his two hourly tube feeds. Stabilising on his high flow 3, with a few Brady’s and de-sats. Oxygen slightly higher than usual. 

Austin – doing really well on his Cpap, over 24 hours now, oxygen really good, in fact the lowest it has been, even on Bipap. Slight swelling still – most likely fluid. Looking to try two hourly feeds from 5pm. Head measurement slightly ‘puzzling’ specialist consultant to do full examination and head scan ordered. Again I asked a million questions…possible outcomes, bleed or swelling on the brain, brain not growing properly, skull fused too early requiring surgery…ultimate fear, worry and panic.

After the ward round we spent some time with the boys. Austin was sucking his thumb – super cute! Daddy completely distraught…..you can take a dummy away, but not a thumb. 

https://vimeo.com/167499257 

I asked a ‘stupid question’ which didn’t turn out to be quite so stupid as nobody had an answer….the boys are identical, we know this because they came from one egg. When they were first born, they were completely identical to look at but now they aren’t quite the same, Rory is Looking a little bit of a fair-skinned redhead (my little prince harry) and Austin more olive skinned and dark haired. I asked if this was down to environmental differences such as them both having different lighting, medicines, breathing support etc…..nobody had an answer!

After hand cuddles and lots of baby talk, we left the boys settled. 

Mummy and daddy have been super busy and so this afternoon made time to make good use of the funds raised by Jack & the Matlock and Bakewell RUFC teams. The nurses always compliment Rory & Austin on their muslin cloths which we take in for their bedding because they are colourful and the hospital ones (as nurses say) are getting tatty and are mostly white. So…we purchased 90 muslin cloths, which is the equivalent of two per incubator, to spread a little joy across the unit, making all of the babies incubators bright and colourful….and everyone likes new bedding don’t they.

We also purchased some goodies for the nursing staff and put a little tea & biscuit hamper together…and then put the rest of the cash in an envelope to be paid into the trust fund for the neonatal ward. I had some pictures printed of the rugby team which I have put with the cash and hamper so that the staff can see who has played a part in the fundraising and give recognition of their balding efforts. Thanks again to everyone involved. We feel that we have made great use of the money and hope you will agree. 

I rang a couple of times and eventually Austin had been examined and then scanned and everything was OK. The mystery remains….although the consultant remeasured and thinks maybe there was lack of consistency in the way he was measured. All of that panic and worry….for nothing!

I went back this evening with uncle Craig and he played hide and seek with Rory and took it in turns to pull faces through the incubator. Here is Rory wide awake. I’m sure he is nocturnal.

However, upon walking through the door was told that transfer forms had been completed for the boys to transfer to Barnsley. This was a complete shock, seems our babies are now well enough to be moved to a lower level unit and as there is a need for beds at Jessops the process has been hurried along slightly earlier than expected….if expected at all. 

Not really sure how I feel about it as Austin only just fits the criteria, been on two hourly feeds for 6 & half hours and Cpap for just over 24 hours and has only been out of intensive care for 6 days and the Barnsley unit only has 3 high dependency beds, so it is unlikely that the boys will endure their road trip together, or even on the same day. I suppose I have to swallow my feelings because actually…the boys will receive the care they need (even if they end up moving back to Jessops if they have a wobble) and nothing else matters. 

💙💙