Hi everyone, Thank you to everyone who is following Ffion's progress - I have been to see her today and had a cuddle which was really lovely :-) On the good news front she is out of the incubator, her jaundice seems a lot better and they've stopped monitoring her heart with the ECG trace as they are happy she is stable and regulating her body temperature ok.
On the kidney front, her creatinine levels haven't dropped at all, but it's still early days. Maybe we had our hopes up too soon that we would see a difference. Her nephrostomy operation has meant she has a tube through her side into her kidney and she is due to have a scan tomorrow where they put some dye down to see if there is a blockage, and if so, where it is. Although we thought there was definitely a blockage, the doctors haven't ruled out the possibility that there's no blockage and the kidney is just a bit duff (for want of a better word!!) We are really hoping that there is a blockage, because that means it can be removed with surgery and we can see some improvement. If the kidney is just malformed we stuck with it as it is, and the longer term will not look so bright.
We also discovered today that she has a hole in the heart (ventricular septal defect and pulmonary stenosis), but thankfully this is a pin-prick hole and will just need monitoring not intervention (phew!)
We are hoping now for some progress in her feeding. At the moment she is being fed down a tube through her nose into her stomach because they need to be strict about how much she's getting so they can measure everything. We are beginning to offer her a bottle feed but understandably she's not bothered. The hope is that she doesn't lose her sucking reflex, although she has no idea what her mouth is for just now as she's never had a proper feed yet. Again it's early days, but the feeding issue is another that's taken into account when they decide when she can come home.
Once again thank you everyone for your thoughts and prayers. The results of tomorrow's scan will be important for us in terms of knowing what's happening.
Kenny was listening to one of Fraser's CDs in the car yesterday and an old children's song came on that many of you will remember from school - 'He's got the whole world in his hand'. We've been singing the verse 'He's got the tiny little baby in his hand' quite a lot... :-)))
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