First update for a wee while. Thankfully because comparatively speaking its been a quiet week or so for the little lady. Jovie has come on brilliantly since all the problems with her trachey were (cue lots of touching wood) sorted. Her personality is really shining through now as she enjoys longer spells awake and begins to develop more and more senses.
Our training continues apace, with both of us having completed a successful full tube change and daily tape changes, which are all parts of her constant care while relying on the trachey, which will be for many years to come.
Jovies improvement was pleasantly noted this weekend by the doctor we owe so much to, the one who saved her life with the emergency insertion of a nasal tube into her throat three weeks ago. She returned from a two week break and was amazed by the difference in jovie. Very pleasing for her, and us.
All this improvement sees us just days away from the next mighty step as we prepare for Jovies move out of intensive care, where she has spent practically her whole life, and onto the ward. A very exciting and equally nerve racking period awaits us as we are well and truly ripped from what in a perverse sort of a way has become a real comfort zone for us. 10 weeks tomorrow jovie has lived in bed 14 (still haven't let them move her despite repeated efforts!) in the Birmingham intensive care unit. Her 2 1/2 weeks in Worcester before that seem a lifetime ago. Now make no mistake about it, the intensive ward of a children's hospital is not a nice place to be. And we've certainly been here long enough, seen enough alarms go off and do not disturb signs go up to know its a place unfortunately some parents are never lucky enough to see their kids get out of. However in the weirdest possible way its been our home for nearly three months now, and next week if all goes to plan (touch that wood again) and we do get out and onto the ward its going to be a strange old feeling. The relationship we have built up with a number of the nurses and the routine we have grown used to will need to be quickly forgotten as we enter the news phase of this crazy, life changing journey we are on. The 18th came and went with no movement and now the plan is to move us on Tuesday, after two false starts last week (through no fault of ours or Jovies) ill believe it when I see it but it seems certain that at some point next week we are off to the ward. Yikes.
From there its a case of getting us trained to do all this from home, and also get us an actual home ready to come out to, a ball which has started to move this week too.
For those who haven't had a chance to come and see jovie post trachey, we are pretty much fully adjusted to it. She continues to grow (ten pounds now!) like any other baby, and the ventilator restricts very little in reality. We have been bathing her, cuddling her for hours on end and to our absolute delight even taking her out around the grounds of the hospital in her modestly coloured pushchair! Jovie sleeps through most of it but its exciting for us at least...
For the two of us normality has began to creep into life as much as it can do at times like these. Iv been distracting myself with football and trying to get my knee better, while Lorn has started to discover the shops of Birmingham (much to the distress of my wallet) and we have both managed to venture out for one night out at least. Small steps for us all but finally all seems settled enough for us to worry more about what lies ahead than what is happening right now. First on the list of future events, the big move and a genuine sad goodbye to some really great people who have looked after our little lady and helped us get through such a dreadful experience.
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