I knew that Progress filled days weren't something one should get used to in these kids. 

I had seen the light at the end of the tunnel home for Christmas or at least for January and I was hopeful.

They've put the Christmas lights up at RMH and every time I see them lit it serves as a reminder that most likely we're not going to be home together as a family this year. 

Dylan's system began dumping this weekend. Well, they assume its dumping because she's lost quite a bit of weight and her little hiney is burned to the point she refuses to sit. The skin coming off in layers, blistering and raw. I've been placing the oxygen mask in her diaper to speed the healing and ease the pain which does help considerably. She stooled 12 times yesterday, all an acidic, watery pastel-green clay color with the smell of upset digestion and bile.

I'm still hopeful that it's just teething symptoms because she's irritable and chomping down on everything she sees, refusing to sleep and wanting me to cuddle all day/night.

Another variable is that instead of gentamicin we are using Amoxiclav which I think is contributing to the color, and its side effect is increased motility (read:diarrhea). The good news is that we haven't had the distention and backup we did with the gent.

TPN has a tendency to turn babies' teeth yellow (like egg yolk or a 20 year, pack-a-day smoker's) so I'm a bit apprehensive to see how they come up as well. It's astonishing how something as hard on your system can keep you alive.

At any rate, if she's not gaining weight, they'll take away our breastfeeding times and put her back on continuous feeds at a lower rate and turn her TPN back up to the volume we started at, only increased because of her size: as size/weight increases so does the volume of TPN necessary to meet growing requirements. 

The emotional bonding we've done through these feeds has been what's helped keep me going and the thought of them being taken from us leaves me hollow. 

Dylan's become used to these sessions, too and looks forward to them as much as I do. I can't bring myself to prepare for having to deny her the comfort we both need; she's older now and I worry that me refusing her requests will affect her long term. Hearing her cry for something I want to, and am instinctually programmed to give, wears on my mothering spirit.

The doctors don't make decisions on Sundays so if they make that call, it'll happen tomorrow. I will enjoy these times we get to share today that little bit extra.

Please pray that Dylan gains weight tonight and this week and that her system begins absorbing again. 

Love to all, 

hug your beautiful babies.