Cha Cha?

I had hoped by now to be posting how well everything was going as Clem ramped up his milk feeds, but it so often just doesn't seem to work like you hope it will in NICU. A few steps forward, a few backward, some sideways...

I'm seriously losing track of days here, but sometime in the last week Clem decided to hook his finger in his NG (nasogastric) tube and pull it out. Not the end of the world, but unfortunately it looks like when he did that, it might have dislodged the TAT (trans anastomosis tube) that had been used to gradually start feeds. So instead of trickling into his lower intenstine, the milk was going into the dilated upper part of his bowel above the repair site, and unfortunately his system didn't seem to be tolerating this. 

So after a break from feeds, removing the TAT, and resuming full IV feeding, he has now started very gradually on milk feeds via his (replaced) NG tube into his stomach. This has had mixed success with a few frustrating starts and stops and unfortunately a fair amount of discomfort and unsettledness for Clem as his poor digestive system tries to come online. 

The staff here keep assuring us that with 

'gut babies' this part can be painfully slow, with regular setbacks par for the course, and then one day something just clicks and things start working as they should. Still waiting...

Clem still spends most of his day sleeping, as you would expect from a baby who still isn't due to be born for another week and a half, and has had two major operations already. He is however starting to have a couple more 'quiet alert' times each day, which we are enjoying. Here he is enjoying wearing his first clothes, that some very thoughtful friends created for him, that are not only gorgeous but also NICU-friendly to accommodate his wires and tubes. 

One of the big concerns as parents, beyond Clem's immediate health, is the potential long-term effects of this time hospitalised. I feel so relieved to say he's started doing all the things you'd expect of any 3wk old baby - the newborn drunken rolling eyes are giving way to developing focus on our faces, and he's happily gripping a finger - most often Lena's. We are all tired, missing being home, and longing for the time we can all be together as family, but surviving and still very grateful for the support of family and friends, and that this treatment is available for Clem.