Well, what to say and where to start!? Jovies op was declared a success on Friday, and on the surface it was exactly that. She has been a more active, calmer and all round happier baby since the trachey was fitted. Her attention is better, we've enjoyed clearer and longer eye contact and there is now a more settled sleeping pattern beginning to form.
It hasn't been without some major stumbles, it took just over 24hrs for jovie to whack the entire trachey out, causing all manner of panic and subsequently emergency alarms and re-attaching. The same happened again the very next day while tonight it was all the more alarming when it seemed to dislodge itself, again causing alarms to be pulled and doctors, nurses and the rest to swarm on bed space 14 like bees to honey. Not fun to see and a huge dent to our confidence in thinking we may not be a million miles from getting her home. In fact its quite simply a clear indication that we are. Miles and bloody miles. Now the trachey disconnecting is one thing, we are both already familiar with reattaching it when that happens, but pulling out of her throat altogether is a serious fright, and something that has to be avoided before we can fulfil the dream of getting our baby home.
Our first meeting with the social workers proved a daunting indicator of the behind the scenes work that needs to be done before we can realise that dream. Along with our training (after jovie is declared 'safe' we both have to be signed off as fit to care for her) there are carers to hire (there will be one with up at all times during the night and possibly occasionally during the day) and the small matter of finding a house to live in! Not to even mention the process of applying for the various financial help which may come our way.
Scary stuff all round. It is nice to be speaking about the future though, however complicated that may be.
Jovie had made suitable progress by Saturday night for us to feel happy enough to slip away for some (relatively) subdued birthday celebrations, so thanks to all who popped along for that.
Its birthdays all round in many ways as jovie was 8 weeks old today, sharing her birthday in a round about sort of a way with her granma, who I sure wish was around to see all this in person!
The plan for the next little while is a case of wait and see really, the ventilation jovie will use long term is yet to be decided, while the docs plan on putting a camera down her trachey tube to check its in the right place on not getting stuck on anything. Apparently for a baby so small the tube is a little long and requires a bit of propping up of sorts to stop it dropping into one lung or the other.
Jovie has outgrown her first clothes as she continues to tolerate her feeds well. Another thank you to everyone for the gifts we've been receiving, and a special mention to the darts and domino players at my uncle Eddies pub in Edinburgh who have raised a generous kitty for us which will be added to the donation we plan to give the Ronald McDonald House charity when we finally get out of this place and the hard work will really start...
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