NICU Update on Little T

Little T continues to improve slowly. His arm is now down to 17cm. And on Thursday to Sunday he went for almost 3 days without needing any blood transfusions!! Hooray!! They've also reduced his CBC blood tests to once a day. He still has a ways to go before he can go home. For one thing he receives 7 different medications around the clock, and 3 more as needed, and some of them like the steroids require a weaning process. But at least now we can see the light at the end of the tunnel.

His arm is wrapped for four hours and unwrapped for 1 hour.

And now that he's more stable, we have a more normal issue to work on. Little T is a very poor eater. Every three hours, he's supposed to eat 70ml (2.33 oz) of breast milk heavily fortified with formula powder, because he gets a lot of fluid from his transfusions and medications. However he only drinks about 30ml (1oz) from a bottle on average and at most about 60ml. So he gets a lot of it down his feeding tube.

He's usually very mellow and content, but he has a short fuse when it comes to eating. You get about a minute to feed him and then he starts screaming very loudly.

His newest neonatologist who just came on today wants to start him with on demand feeding with a minimum of 280ml per shift (12 hours) with no feeding tube. I agree in principle, but I'm nervous about it. This boy is skinny! Not skinny like Special K. I mean really skinny. His right arm is bandy with no fat and his back is wrinkly because it has no fat. He has a slight double chin and his belly is round, but half the time it's from gas. I know they won't let him starve, but still I worry.

On Wednesday I finally got to breastfeed him again and he finally calmed down and did well. On Friday night I discovered that he had given me thrush. Ouch! So we've stopped breastfeeding until it gets better. Thrush also has made my supply go down. I hope it goes up again once I get better!!