lots has happened in the three or so months since i've updated this site, but i definitely don't have time to share it all while i'm here at work and (once again) writing from behind a breastpump. yes...i am still pumping. my goal is to make it through the winter...to hopefully help rowan fight off any nasty cold/flu viruses he may encounter. i probably won't know what to do with myself after i stop i'll have so much time on my hands...(yeah right.) but anyway, the biggest news is that rowan's home vent nurse practitioner told me that she anticipates being able to start the vent weaning process when we go back to visit in january.

WOOT

WOOT!

supposedly weaning is a long process...we were told 6 months or so if all goes well, but it will be so very exciting to start. to even unhook him from that big heavy machine for fifteen minutes and just carry him around the house will be such a joy. right now i can't do that without getting a major backache, because it's baby in one arm, vent hanging off the other. if i had time for a chiropractor or some PT i could really use it, because my back is KILLING me!

in other news, rowan is sitting up almost all by himself, for a minute or so at a time. we still keep our arms around him, or at least have soft pillows around him, in case of a topple, but he is doing great. he is playing with all kinds of toys, pulling mom's hair, and taking off his own diapers. he has also been successful at removing his mickey button with the balloon still up. while this is not exactly a good thing, it is a sign of a healthy active baby, so i can't get too upset about it. he can also disconnect his vent circuits from time to time. he hasn't pulled out his trach yet, but we are keeping a close eye on him because i'm pretty sure he could if left to his own devices.

okay, that's all i can really update for now because break-time is over, and i gotta go save some lives.

later!

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.

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...