Since last weekend, (when Nicci and I both got to hold our precious son up close and feel his warmth and his small limbs wriggling gently against us) things have been somewhat up and down.

On Monday, Nicci was again able to hold Daniel for some special mother and son bonding.

On Tuesday, the 'leak' on the ventilator tube was beginning to cause Daniel some jip. I don't remember if we've explained this before but the 'leak' was caused by the fact that Daniel had grown out of the original tube they put down his windpipe to help with breathing. It's meant to be a snug fit, but his windpipe is now wider and so as air is pumped down through the tube it can escape from the bottom and go back up the windpipe and not all go into the lung... The doctors had planned to see if they could wean Daniel off the ventilator machine by the end of this week and so, given they had to remove his original tube to be replaced by a wider one that fitted him better, they decided to see if they could wean him sooner. So, for 3 hours our boy breathed on his own! They say some children they try an early wean on immediately look like they need assistance and so are re-intubated straight away. But not our lad! He did better than the doctors expected, but in the end the effort of breathing in and out was stressing his heart and so they did indeed replace the tube with a bigger one. Nicci was there for the whole thing and by the end of the day was emotionally wiped out.

On Wednesday, he had another stable day. He was back on reasonably low ventilator settings and Nicci was again able to hold him for about an hour. During that hour Nicci was actually pleased to be sicked-up on. She sees that as a rite of passage and now feels like a real mum!

Today they did a routine chest x-ray and saw that there was still quite a bit of fluid on his lungs and they were concerned that the 'PDA' (Patent Ductus Arteriosus, which is a heart-lung bypass tube used by foetuses in utero which closes up before normal birth) might have opened up again. The doctors ordered another echocardiagram (chest ultrasound) to see for sure. When we were there this evening we were able to spend a fair amount of time talking to the consultant/attending. The PDA has indeed opened up again. It doesn't seem to be causing him too much bother in that he isn't displaying particularly concerning symptoms - but it is holding him back from being weaned from the ventilator. He's been on the ventilator for quite some time now (all his life!), and the longer he's on it, the greater the risk of more long-term effects on his lung health. Already they are somewhat damaged, but this is common in premies. In short, we want him weaned as soon as possible. They could go in and surgically close off the PDA, and indeed that may well be what they have to do. Should that be the case, the procedure is meant to be fairly routine. It would be performed at his bedside, where he is now. They would go in through his back and 'staple' the duct closed. The tricky bit is identifying the ductus and not getting confused with all the other blood vessels and tubes that are in the vicinity. The closest analogy would be trying to diffuse a bomb - (do I cut the red wire or the blue wire...?), except all the wires look pretty much the same! While this seems pretty scary to us, we know that the doctors involved are very skilled and very experienced and that undergoing it is less of a concern than having to be on the ventilator for extended periods. But it is still surgery, which isn't without risks. And, for the moment, there are other avenues to pursue, like restricting his fluids and continuing to feed him lots of calories in the hope that he bulks up and it closes by itself... which is the route they are currently taking. We're sure they'll make the right decision and know that he is in the Lord's hands, but this whole journey is emotionally exhausting. Do please pray with us....