A Glimpse of Home: Hope, Heartbeats & Healing

As we enter the third week of being back in UHW, the word Home is being mentioned more and more, not by us, by the medical professionals. We don't know when yet, all we know is this is the closest we've been to going home with our little girl.

We have had a few little wins (although we think they are massive!) this week, Eira being the foodie she is, turned her head independently for the first time, for a spoon of food! Going through the week wanting more and more, with the dieticians and SALT team all being guided by what Eira is capable of. Eira has been much more relaxed in herself this week, even being able to go to sleep without the Chloral (sleep medication) and her arms are now much less Joe Calzaghe like and much more relaxed. With new positions being tried, including Tummy Time, which was a firm favourite and will hopefully encourage Eira to control her head independently too. Eira has spent much less time in bed and much more time in her chair and in her pram, venturing over to the Ronald Mcdonald House whenever possible. Eira has also been able to spend time in the sensory room, and as her eyes are reacting to light, this was a great place to be. Firstly, with Nanny & Bampi, but because of an upset stomach, this visit had to be cut short, and 3 poos later, all was happy again. The second visit with Mammy, Daddy & Angharad was much better, and we could have stayed in there all day i'm sure!

Amongst the visitors we've had recently, Eira especially liked Daisy, the therapy dog. Both extremely happy to be relaxing on the bed, with Eira gently moving her fingers. A second visit is definitely necessary!

We also had a little scare during the week, where during routine observations, Eira's heart rate was dropping lower than normal, and at 4am they needed to check Blood Pressure and also do an ECG. All was perfectly normal with both and the doctors suspected it was a combination of being in a deep sleep, and the Chloral working together, Eira has been perfectly fine in that respect ever since.

Eira was also due to have her NG tube changed, which was found to be overdue, and because of this, the end that would have been in her stomach was rather 'burnt' from the stomach acid. A new, much thinner tube was used instead and now Eira is looking much better for it thanks to nurse Alis. Hopefully it wont need to be done for another 90 days!

Eira continues to fight everyday, to stay strong, to improve, and to be Eira again. No child should have to go through this, and the burning question nobody can answer is why? Why Eira? Our beautiful, bright, happy, polite little girl, her life turned completely upside down in just a few hours. Just looking into her eyes, the helplessness is heat-breaking. The 'happy face' smile there once was, hidden behind a gaze of self-pity. I cry myself to sleep most nights, the tears aren't for me, they are for my Eira x