Hello all, I thought that instead of throwing updates in among my replies to other threads that I'd start a thread here for my LO.
I have some mixed news for my first official update here. The best part is the news that apart from one thing, Robert is strong enough to come home. The one thing stopping him is eating. The problem being that, a lot of the time he seems to be struggling to get the knack of the swallowing part of eating and so, panics at the beggining of each feed, this causes his heart rate to drop to a dangerous level and he needs help to get it back up again.
He's had some basic tests so far and they can see nothing wrong with him apart from a mild case of reflux that they don't want to treat. I have to say this annoys me as, mild or not it would make sense to eliminate even the smallest thing that might be giving him trouble. DH and I have brought this up countless times and they don't want to budge on that one.
Over the weekend we were told there was a good chance he would be coming home with a g-tube if things didn't improve soon. A g-tube is a feeding tube that they insert directly into the stomach wall that would go in through a small opening in his tummy. Looking this up for more information, I've read that it can lead to skin infections, leakage of stomach acid and skin irritation from the stuff they use to treat the above two problems. Neither I or DH want to see him go through all of this. He's been through such a lot already including; three infections, two spinal taps, five blood transfusions and and surgery to correct his PDA.
We're working hard to find something that works for him regarding feeding by mouth. The hospital staff were feeding him swaddled and lying on his side. He doesn't like his arms restricted, so we unswaddle when we feed him, he has mild reflux so we don't feed him lying down. On monday we tried him with a Dr Browns bottle because he also has a herniated belly button that they don't want to treat despite us having said that it seems to make it harder and more painful for him to pass gas. <mutters and grumbles here> So, armed with our new ideas we tried all three on him monday and he took an entire feed by mouth with no problems.
Now the hospital are using our new system and he seems to be making some progress. He isn't taking every feed well yet, but he's doing a lot better and things are looking very promising. I've had to put his nursing from me on hold for now as the lying down and eating really does seem to freak him out. But he's still getting breast milk so I can live with that. I'm still having my supply issues but I'm getting tested for hyperthyroidism and hormone problems on tuesday to see if one of those is my problem. The hospital LC's think it could be very likely as I've tried everything I can to increase my milk to no effect. In the meantime, I'm pumping like a crazy woman and storing up every ml I get for when Robert comes home, which could be a soon as a week from now.