pulling another all-nighter

well we've been home for three weeks, and have had three nursing call-offs already. hope this isn't going to be a pattern. for as much as i bitch about having nurses here all the time, we really do need them. anyway, it's another night with no coverage, and i sent billy to bed early because he works in the morning. ro is asleep, he's been sleeping through the night for a while now (hope i don't regret saying that later!) i'm not too sure what i'm going to do to keep myself awake all night...the day nurse comes on at six, so i guess i better brew some coffee!

Lily Allen - LDN

a fun song for the day!

reading lessons!

rowan is very excited to read his new favorite book!

he's a very serious reader

this is his favorite page. he could "read" it for hours! (or until he gets all cross-eyed and wonky-looking!)

baby doll head on a stick

i was very excited to find two bags of these things at the thrift store one evening. i amused myself for a few weeks putting them in random places all over town, like the neighborhood flowerpots or sticking up from sewer grates. they're cute and creepy all wrapped up in one little package!

Heartless Bastards - Could Be So Happy @ The Collect

rowan's eating "habits"

i should probably rename this blog "notes from behind a breastpump" because that seems to be when i write these things. my life is pretty busy now, and i guess that's the only time i get to slow down and think. i have been pumping exclusively (i.e. without breastfeeding at all) for almost 6 months now. from what i understand, most women aren't able to do it for that long. i'm not sure why i got so lucky, but i can't say i'll miss it when it's time to stop. it is good for the ro-man so i'll take it while i can. the little bugger will eat from a bottle (something most trached/vented babies won't do), but he's not too interested in breastfeeding. plus after i pump i have to add extra calories and protein to the stuff to make sure he grows sufficiently. babies with BPD (or bronchopulmonary dysplasia--rowan's official preemie-lung-disease diagnosis) burn so many calories just trying to breathe that they often don't grow so well. so even if he was interested in breastfeeding it wouldn't be a great idea...because the milk wouldn't be fortified with the extra calories and protein that he needs. so i pump. and pump. and pump. takes about 30 minutes at a time and i'm supposed to do it every two hours while awake, so you can imagine what a huge time-suck that is. since rowan's been home i'm lucky if i can do it every 4 hours, but like i said before, i'll take what i can get.

we recently went to see pediatric surgery (one of rowan's many specialists) for a follow-up on all the surgeries that rowan has had. the doctor was asking me about rowan's eating habits. he looked a little stunned when i rattled off "80mls of breastmilk fortified to 27 calories +benepro four times a day by mouth if he will take it (if  not we put it in his g-tube--a handy little thing that provides us direct access to rowan's stomach so the poor kid can't get away with not eating), and 27 calorie similac with iron plus benepro plus microlipids continuously at night, 35ml/hr for 7 hours via g-tube." honestly i'm not sure why he was surprised; i'm sure he's seen babies like rowan before. but it struck me once again how regimented and un-natural this all is. it always makes me laugh when rowan has a gassy day and one of the nurses usually finds it necessary to ask me if i ate something funny. um, let's see here...my child is basically being force-fed measured amounts of food with several different types of synthetic additives, not to mention 8 million medications. as soon as he farts twice in a row, let's blame the breastmilk (the only thing he eats that is actually supposed to be easy on his stomach.) yeah, that makes a lot of sense.

freedom has a price

billy and i are about to embark on a night without nurses. it's a blessing and a curse. pro: there are no folks coming to meddle around in my private life tonight. con: i am going to be pretty tired tomorrow. we sleep in shifts, and it's my turn to go first. night-night!

Lucinda Concrete and Barbed Wire

plastic tubes and wires

lucinda williams has this song called "concrete and barbed wire." it's always been one of my favorite songs; it's about the things that come in between us. she sings about her man who's in jail. she can't go visit him because of all that lies in the way..."it's only made of concrete and barbed wire." i'll see if i'm web-savvy enough to post a you-tube video of the song on here. anyway, through all this stuff with rowan i often thought of that song, except i sing "plastic tubes and wires" instead of concrete and barbed wire. rowan and i are both hooked up to our plastic tubes and wires right now, across the room from each other. he's on his breathing stuff, and i'm on the breastpump. and there's a(nother) nurse over there holding and rocking and talking to him while i'm over here making his breakfast. don't get me wrong, we wouldn't be able to do all this without these nurses, and most of them are great. we are very fortunate to even have this little miracle baby in our lives. but something about it is just, well, strange...

our screwy life

i am sitting on my green glider rocker that was meant for the baby room. instead it is in the living room, which is the new baby room. we moved the crib, etc... downstairs when we realized that it would be hard to take rowan up and down the steps, due to the heavy equipment he is attached to. there is a nurse sitting at the table across the way, charting. she's here to watch rowan while me and billy sleep upstairs. i barely know her, really just met her, but it's her job to watch rowan and make sure he stays safe through the night. so here she is, charting in my living room. it's strange what we can adapt to if we have to. billy is watching a documentary on west virginia coal-miners. there's a lady singing about black lungs. rowan makes a noise and the nurse gets up to soothe him. i am immediately jealous. that should be me, not some stranger. but she's just doing her job and he's going back to sleep and here i am typing about it all. when i was pregnant i was excited to have one of those basinettes that hook on to the side of the bed so you can just reach over and touch your baby if he stirs in his sleep. instead he sleeps on a different floor and if i want to go see him in the middle of the night i have to explain myself to a stranger in my living room. now the lady on tv is singing about unions and picket lines. the nurse is opening a bag of pretzels. i am still rocking in my glider and ro is still asleep. i am so thankful for our weird, frustrating, scary, fucked up lives.