The Life of Ryan

Here's the low down on Ryan's business---he is not a happy camper, generally.  Right after his reanastomosis surgery he figured out hungry in a big way.  and he is hungry.  and mad. and we're stuck giving him continuous feeds into his g-tube (up to 17 mL/hr with plans to go up to 18 tomorrow!) which doesn't satisfy his desire to have a full belly.  He LOVES his omeprazole and loperamide that he gets to drink by mouth--like dessert....you give him a little drop and he shoves his hands in his mouth and rubs the med all over his face as if to bathe in it it's so good.  it's adorable (and sad).  He doesn't cry like a normal baby, he ROARS--like if a lion cried, it would sound like Ryan when he cries--it is deep and loud and scary.  He is still super strong--holds his head up like no problem--looks all around the room.

otherwise--he got his g-tube changed out to a button 2 weeks ago and though it looks better and is easier to maintain, his body doesn't like it as much and we are trying to come up with ways to deal with a reaction he's having to the button--otherwise, his Broviac line is still looking good despite it being placed directly in the poop-path.  

A few things make Ryan happy:

---this particular hold (which is causing his right side of his head to be flat)
--sucking on things (sometimes--sometimes he just gets even more furious like he knows we're trying to pacify him and he's hungry darnit and knows when he has a bottle and when we are trying to give him a pacifier)--here he caught his thumb..
-being outside (plenty of times, he's raged and when we take him outside, he settles right down and falls asleep)
--long conversations with nana

-and this stupid mobile which he will stare at for a long while (and which made me cry the 3rd day after he was home b/c I could not make him happy, but if i placed him in his pack-n-play he would happily stare at the mobile for an hour---he likes me now i think though)

oh, and of course his little 17mL bottles that he can take every 3 hours make him happy for the 12 seconds it takes him to drink them.  then he is mad again.  but it is getting better...the past few days he's had more moments of contentment.  he smiled at me ON PURPOSE (yay! finally!) yesterday and today and seems to be comforted by me, finally.   the only good thing about him having continuous feeds is that he sleeps through the night (of course, we don't because there's Nora).

Doesn't love the swing, but will occasionally sit there and look around the room--also like to sit in the bouncy seat and stare at his IV pole.  Ryan is great at eye-contact and tracking objects.  When he is calm, he'll just look at me for so long.

This is what cute looks like (also, miniature version of John i think):

The babies don't seem to know each other--I keep placing them next to each other when I have the chance but one or the other seems to freak out (here Nora was in between shrieks).  

update: after CHIRP clinic today--9 pounds, AND we are going to let him be TPN-free for 4 hours each day! (assuming his blood sugars are OK while off the TPN)