1 step forward and 2 steps back really does come into play with babies, Aiden made great progress on Monday, he had his CPAP removed and has continued to breath unaided, this was a huge milestone and so positive, Aidan did however have another physical seizure and has had to go back on the brain monitor and which he has remained on since then.
We are getting more involved in Aiden’s daily care routine now that many of the wires are being removed, this means we can clean his eyes, wash his face and change his hideous dirty nappies, but we love it as it’s what we would be doing if we were at home.
Aiden had a MRI booked in for Tuesday at 2pm, we took this time to go home for the first time in a week to get some more clothes, check on the house, we were both nervous leaving but Aiden was going to be away having the MRI scan for several hours and it made sense to go, if felt good to go home but we were very eager to get back to Aiden.
The MRI went well, Aiden did have a small seizure when they transferred him from the incubator to the table but he did manage to come out of this when comforted by the nurse.
Aiden was sedated for the scan and so spent the rest of afternoon and evening asleep, he looked so peaceful.
Aiden now weighs a little over 7lbs and is being tube feed more milk as he grows, Aiden’s a little chunk compared to the 3 other premature babies he shares a room with.
As of the early hours on Thursday Aiden was promoted to room 9 which is a high dependency room rather than the critical intensive care room he was in before. This is a milestone as it means we can have more free access to him. We can take him out of his cot and hold him when we want without having to ask for help, we still do his cares and change his nappies, read him stories, we have also been shown how to aspirate his feeding tube, check the acidity to ensure the tube is still in his tummy and measure out and give him feds, although he does not taste his food he does seem to enjoy them by making faces and sucking noises.
As yet we have not received any information back from the MRI scan Aiden had, however this may not provide much information, it could mainly be used as a bench mark for further MRI’s.
To be able to stay close to Aiden and have 24hr access to him we have been homed by a charity called The Sick Children’s Trust, they are a charity based organisation who provide a home away from home for people with seriously ill children. There are only 8 units available here at Chestnut House and we are incredibly lucky to have been placed in one, the whole team here have been amazing and a constant support for us, without them we’re not sure what we would have done .
We are both constantly running on adrenaline to cope with the stress of the situation and are emotionally drained with the roller coaster ride of feelings, emotions, the highs and the lows but together we know we can get through anything. We are both eternally grateful for all the love, support and prayers for Aiden and ourselves and thank you all from the bottom of our hearts.
We also would like to thank everyone who has donated to the just giving page set up in Aiden’s name to support the wonderful work the Rosie have done. The Rosie is a truly special place with wonderful staff!
With much love,
Fleur and Keith