the one you feed

obviously, free time is not something I have a lot of, as evidenced by the fact that I am typing this post on my iPhone while rowan sleeps on me (some days the only way he will take a nap is if he's lying on top of someone). but I really am trying. I watched a documentary about Anne Leibovitz last night, and she said something to the effect of just having talent is not enough. talent is like a baby, you have to feed it and nurture it so it will grow. this struck a chord with me, so last night while Rowan was asleep, I did some normal stuff - cleaning, teevee watching, but I also did this    ======= >











I was inspired by an awesome book that billy bought me for christmas:

and I also signed up for a crafty online class here:

http://dispatchfromla.typepad.com/dispatch_from_la/rotdoci.html

which I am thoroughly looking forward to exploring this evening when the baby's asleep (in his crib this time.) but don't get me wrong, there's nothing like the cuddles I get from this sweet little peanut. He will always be my top priority, but occasionally I hope to get a chance to "feed" my other babies too ;)

~~~~~

a wise old man was teaching his grandson about the two wolves at war within us all. one wolf is good, fair, brave, honest, and full of hope. the other is selfish, greedy, angry, and full of fear.

"but grampa, which wolf wins?" asked the boy.

"the one you feed," the man replies.

native american folk tale

have a large day

instead of saying conventional things like "have a nice day," or "have a good day," my grandfather (pop-pop) would always say "have a large day." yeah, i come from good stock. and i am writing this blog because i have just had myself a rather large day. here are the details:

of course there was the usual, taking care of the baby (which involves trach-care, g-tube care, getting dressed, love, chest PT, equipment checks, emails to nursing agencies, formula mixing, love, emails to medical equipment supply companies, love, love, love, cold washcloths for his tooth that's coming through, love, walks through the neighborhood, bouncing, flying, love, bottle-feeding, tube-feeding, spoon-feeding, love, love, reading books, talking, joking, love, jumping, bath, more trach care, more g-tube care, changing trach-ties, love, changing into pee-jays,  more chest PT, love, medications all day long, talking to the home-health nurse, love, and i'm sure there's more that i'm leaving out but that's a pretty good depiction.

and then there was that dinner i cooked: chicken burritos. yum. i'm about to go make myself another one just because i brought up the subject. enough said.

board game. this was brought on inconspicuously by me and aaron laying on the couch, bored for maybe one minute. so i looked at him and said "wanna play a game?" so we ended up playing apples to apples. it is the kind of game where more is merrier, so we invited billy and rowan to play along. since it is a card game where you essentially pick a card, we just held the choices up in front of the baby and he got his chance to make a choice. he did that by either smiling at a card, trying to grab a card, or headbutting a card. he was a good little player and actually ended up WINNING the game! yay rowan! mommy couldn't be more proud :)

curling my hair. yeah you heard it first. i actually spent time on my looks. i am moving up in the world. rowan helped me put my hair in curlers and i must say it looks GOOD.

about ten tons of laundry.

kalhua. mi-mi (pop-pop's wife)'s recipe. passed down the generations to little old me. i made 24 pints this evening which are currently sitting in darkness for one month until they can be brought out and given away as christmas presents and consumed in people's living rooms as white russians. i have made kahlua for the past 5 or 7 years (not sure) save last year (due to the bedrest issue) according to mi-mi's recipe so that in itself is big for me.

pumped 6-7 times. also good.

watched the steeler's game. or at least payed a small amount of attention to the steeler's game while making kahlua in the kitchen.

listened to a "this american life" episode about penn state. i'm not penn state alumni or even a fan, but it made me shed a few tears.

i haven't really sat down and rested or reflected on my day until right now. i haven't had a chance. so i think that qualifies as a large day. maybe humongous, but i'm not trying to brag. we'll just call it large and leave it at that.

here's to hoping tomorrow's just as big :)

The last ten movies I watched

1) Black Hole (1979) - I found the soundtrack LP to this movie in a thrift store maybe a year ago.  John Barry is the composer.  Space music is always nice.  I had some drinks while watching this which helped a bit with the movie.  The late seventies special effects are what you'd expect.  I rate this movie a "Strong Meh".

2) 2001: A Space Odyssey (1968) - Seen bits and pieces of this over the years, never the whole thing.  This has been on my list to watch for years (keep a list, it will help with all your obsessions).  Stanley Kubrick did a nice job with this Aurthur C. Clarke story.  This one is well worth watching.  But seriously, what the fuck is the ending all about?  I had some drinks watching this and got up to piss a few times.  I couldn't find the remote control so I didn't bother with pausing it.  Maybe I missed something but is Jupiter just one big embryo?  I might have to IMDB this one, I don't quite understand it.  Scratching my head, I rate this movie as "Watch This Shit, Homie".

3) Dog Day Afternoon (1975) - This is when people with balls made movies.  I have seen this a number of times.  I find acting pretentious and bad acting down right insulting.  This movie is neither.   It's about a bank robbery gone bad.  If you haven't seen this this you should remove your shoe and smack yourself on the head with it.  I rate this movie as "You Should Have Already Seen This".

4) Tell Them Who You Are (2005) - This movie is about Haskell Wexler.  Wexler was known for being a camera man with a bad attitude.  He also did some directing.  He was fired from the filming of One Flew Over the Cuckoos Nest.  He comes across as a cranky old man.  His son made this movie and should listen to his fathers constant yacking at him about lighting and sound.  This does not come across as made by a pro.  Unless you are somehow related to Wexler I don't know why this would be interesting to anyone.  I rate this "Yawn".

5) Secret of NIMH (1982) - I used to catch this cartoon movie on television throughout my youth.  I found it terrifying, fascinating and down right awesome.  It appealed to me on so many level as a kid in the 80's.  It's not too long and moves quickly.  Go out and watch it if ya can.  I rate this "Watch This Shit, Homie".

6) Nashville (1975) - Very long movie satire about Nashville at the height of country music.  The big joke is summarized at the beginning of the movie when all there is a traffic jam due to an accident.  Everyone gets out of their vehicles only to realize they are all country stars or aspiring country stars.  That's all you really need to know about this movie.  I rate is a "Strong Meh".

7) Jeremiah Johnson (1972) - Great movie about a dude who goes out into the wilderness to become (I think) a fur trapper.  Staring Robert Redford.  He encounters friendly and hostile Indians, an eccentric bear hunter, a dude buried up to his head in sand and a dude frozen to a tree.  My only complaint is that there is too much talking in this movie.  That's a joke.  There is not much dialogue.  I rate this movie as "Watch this Shit, Homie." 

8) The Endless Summer (1966) - Perhaps my favorite documentary of all time.  This film follows two California surfers who chase summer, and the perfect wave, across the globe.  You don't have to be a surfer to enjoy this film.  I've never surfed in my life.  In fact the film appears to be aimed at people who don't surf.  This movie is hilarious.  You have got to stop reading this and go watch it.  I rate this as "You Should Have Already Seen This".

9) Land of the Lost (2009) - Will Ferrell has a few decent moments as he tends to do, but this movie was boring.  I got drunk and fell asleep writing in my man-diary to this movie.  Think it has something to do with dinosaurs. I rate this a "Strong Meh". 

10) Never Been Done (2004) - This is the story of pro skater Jon Comer.  It's an inspiring story of a young man who lost a foot as a kid but became a pro skater against all odds.  That's really all there is to tell you.  Comer has a good sense of humor and seems like a decent and humble hardworking fellow.  I rate this "Watch this Instead of the Mighty Ducks Next Time You're in the Mood for an Underdog Story".

Thanks for reading.  Billy Falls for Look Everyone I Wrote a Blog Productions.  2011.

so thankful

i wanted to write a big long thankfulness blog for today, with lots of heartwarming pictures. but, my SD card on my camera is acting up, and it won't let me upload anything. and i can't remember all the happy crappy thankfulness stuff i was going to write about before. and maybe it was meant to be, because the truth is, this is not an easy time for my family. we are extremely limited in what we can do. some of the people i love are sick. i wasn't able to go to my aunt's thanksgiving dinner like i normally would. but i did make a rockin' turkey dinner for me and billy and aaron, and rowan got to eat his first jar of baby-food turkey dinner. i got to see my dad and my sister, who are both doing well. and considering last year on this day i woke up 21 weeks pregnant in a pool of my own blood, on my 6th week of bedrest, just praying like hell to make it to 24 weeks (babies born before that gestational age are usually not resuscitated), it's pretty easy for me to say i'm thankful. i'm thankful for my ability to get out of bed and make dinner. i'm thankful to be able to clean my own house. i'm thankful to be able to walk my dog. i'm thankful for my family. and i'm so thankful for my sweet baby boy. happy thanksgiving. love, erin

recipe for the best pumpkin pie in the WORLD

aunt becky's pumpkin pie

use a longneck pumpkin or butternut squash. cut into 2-3 inch slices. remove seeds. place in pan (face-down) with a little water in the bottom for 45 minutes or until "fork soft" (meaning you can poke throught it easily with a fork). cut out the meat and crush it lightly with a fork.

for each pie, use:


1 1/4 cups cooked pumpkin
2 tbsp butter
1 cup sugar
2 tbsp flour
1 tsp vanilla
2 eggs
1 can evaporated milk

mix the wet ingredients together, then add the pumpkin, then add the dry ingredients.

bake at 425 for the first ten minutes
bake at 350 for an additional 30-40 minutes

the pie is done when it is "springy"

sprinkle the top with cinnamon while hot

and there you have it folks, there is the recipe for the pumpkin pie i've been lucky enough to have eaten every thanksgiving for my entire life, made possible by my awesome aunt Becky. trust me, this is the best pumpkin pie in the WORLD!

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!

awesome. the basement flooded. again.

and as you can see from the above picture, we have a lot of crap down there. luckily i am awake with rowan all night (no nurses) and noticed it before it got too bad. so i woke billy up and he, aaron, and i all hoofed stuff up to the main floor. there are men with large fans coming tomorrow morning to try and dry the carpet back out. i'm sure that will involve a lot more moving of things, but at that point i'm thinking i will be asleep. when we called the landlord her reaction was "wow, that hasn't happened in twenty years!" which is the same exact thing she said when it flooded last march. whatever. as long as everybody is okay there's not much that can phase me. the rest is just details.

billy and i got a chance to hang out in the basement last night after the night nurse came. he wrote in his journal and drew stuff on me while i played super mario brothers. here's the artwork i now sport on my left ankle:

we were really into the panorama setting on the camera last night, can you tell?

well the basement probably won't be functional now for at least a month, so i'm glad we enjoyed an evening down there last night. if a third of the house is out of order for a month, do you think we should get a third of the rent discounted? here's to hoping...

saline and toilet paper dreams

i'm not entirely sure, but i think last night i might have had a dream about normal saline and toiliet paper.

                                                            

i don't think you'll find that one in the dream interpretation books. i think it is a reflection of how my life is being over-run by medical things. one reason i became a nurse was because i felt it was a job that you didn't have to take home with you. you clock in, do your shift, clock out, and leave. the rest is up to you. i guess the joke's on me! i never dreamed i would be running a mini-intensive care unit out of my living room with my son as the patient. but it's okay, i'll just be uber-medical-girl for a while until this is all behind us.

i cut back on our home-health nursing hours today, and BOY do i feel awesome about it. now the nurses will just basically be here when we need to sleep, and not while i'm awake and perfectly capable of taking care of Rowan all by my mommy self. i wish i would have done that a long time ago, but i didn't even know that i could. and i suppose it was nice to have some extra coverage while we adjusted to everything at home. but hopefully, with a little help from friends and family, we won't need all the nurses up in our face all the time and Rowan can go back to being a sweet little mommy's boy for a while :) ever since Rowan's been born there has been a nurse of one sort or another messing with him in some way or telling me and billy what to do with him. between the NICU nurses, the rehab nurses, and the home health nurses, the boy could definitely use a reduction in the RN factor in his life. and so can mom. when Rowan cries in the middle of a nap, i feel like i have to race a nurse to get to him first. when i want to hold him, i want to pick him up off wherever he happens to be sitting without someone hovering over me saying "do you need help?" i realize this may sound ungrateful and rude. i realize these people are just trying to do the best they can to help out. but it gets really REALLY old really fast. i don't think you could ever imagine what it's like to have nursing in your house unless you have it. and 16 hours a day. that's 2/3 of the day, of your LIFE, that these people are in your house. i wouldn't even want my best friend in my house that much, let alone a stranger i never met who happens to have RN behind their name! the vent, the medical supplies, the medical procedures, the oxygen, the tubes and wires attached to my baby, i can handle all of it. what i can't handle so well is ALL THE FRIGGIN NURSES UP IN MY GRILL ALL THE DAMN TIME!

okay. good. glad i got that off my chest. so hopefully this reduction of nursing hours will do me some good and keep me out of the looney bin, which is where i was headed. and hopefully my brain can stop torturing me with these saline and toilet paper dreams!

a pretty funny book

actually, anything with the name McSweeney's or Dave Eggers on it is usually pretty entertaining. this is a funny book of random lists, including "desserts to avoid at last meals," and "embarrassing things that happen while using a lightsaber." i just brought it to work with me tonight (good thing, because it's not very busy in the ER at the moment) to start reading. here's a good one i just came across:

THINGS THEY SHOULD DO:

     they should let people sleep in restaurants

     they should show people how to kill ghosts

     they should not let children kill pigeons

     they should give blind people free flowers

     they should bring back dinosaurs for military purposes

     they should design a motorcycle that runs on urine

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

ha!

i think i could write a companion book of lists pertaining to all the ridiculous shit that occurs here in the emergency department. double ha!

thank you thank you thank you

i am feeling very thankful for so many things right now. one being this:

the little graham-cracker-crust bits are just to DIE for! i am also grateful for my amazing ability to stop eating it before the whole pint is gone.

i am thankful to have a job to go back to tomorrow, even though i'm not altogether happy to be going back to it...

What would Nurse Ratched do?

 (i am also a nurse, for all of you folks out there in internet-land who don't know that yet).

i am thankful to have had a 6 week maternity leave after already having been out of work for so long on bedrest and post c-section/NICU days.

i am thankful that we have a good night-nurse this evening, so i can sleep easy.

i am thankful rowan got to go for a walk today, and have his bath out on the back porch amid the fireflies.

and most of all, i am thankful this sweet baby is home with his family where he belongs, laying in his crib and making squeaky-noises while he sleeps. good night, little guy. i'll see you in the morning!

fun with medical equipment, part one

ooh look, a ballard. YUM!

I am going to tear this thing to SHREDS!

WHAT?

Okay, fine, I'll play with a normal-kid toy.

Amy winehouse -October song

RIP amy winehouse

sing, sing a song

i am pleased to announce that rowan passed his hearing screen with flying colors today! we have so much to be thankful for, and the fact that he came through all this with his hearing and vision intact is just one of them. what a little fighter; i'm so proud of him!

the latest (and greatest) in feeding tube extensions

to all you other special-needs parents out there, i feel like i've struck gold and need to share. we had struggled for a few months with mic-key extensions and syringes falling out of them and making big messes with whatever happened to be in the syringe (usually stomach contents) spilling everywhere and generally being a pain in the ass etc, etc... if you are a parent of a child with a mic-key button i think you know what i'm talking about. rowan was having some redness around his mic-key site and the nurse practitioner from peds surg ordered him an AMT mini button to see if that might fix the problem (the balloon is shaped differently and prevents some of the leaking that was causing his irritation). well, by the time we got the equipment from our DME the redness and leaking had resolved so we haven't changed out the button yet, but we found a great thing with the AMT mini extensions. the feeding and med port are made out of this gummy sticky purple plastic that is SO MUCH BETTER at holding the syringes/feeding tube ports/or whatever you happen to have plugged in there in. we literally have had ZERO disconnects since using the mini extensions. and they fit right into the mic-key button just like a mic-key extension. so my advice to any parent struggling with the accidental disconnect issue, even if your child has a mic-key button, ask your DME for AMT mini extensions rather than regular old mic-key extensions. they are SO MUCH BETTER!

here's a pic:

and they're purple! much cooler. oh, and i forgot to mention that the actual tube is made of more flexible plastic, so they don't get hard and stiff as fast as the mic-key extensions. frankly, i don't know why they even have the mic-key extensions anymore. these are so much better.

alright, well rowan is laying on the floor trying to eat his hands, so i guess i better go get him a bottle!

status update and etc...

well it's a new day and i'm feeling much better now. i woke up at 5:30 to relieve the night-shift nurse who leaves at 6AM because...(insert drum roll here)...we have NO DAY NURSE TODAY...(insert applause and tears of joy.) i actually get to relax and chill in my own house in the morning without someone talking in my ear immediately as soon as i wake up about this or that      all.   morning.   long.....rowan is still snoozing in his crib at this point, but i'm so excited about the fact that when he wakes up and needs something, I will be the one who gets it for him. i'm sure there is a parent somewhere reading this saying, "oh my god this lady has all the free child-care in the world and she's bitching about it. what a numbskull!" but believe me when i say it gets old fast. yes i can sleep in and leave the house unrestricted whenever i please and it does come in handy sometimes, but the trade-off is huge, as i believe i've made it perfectly clear in this and other posts.

i had the thought that, at some point, there might actually be a nurse somewhere who reads this and is offended at all the complaining i do. and that's fine. all i can say is, it's nothing personal. most of you are REALLY great, and somehow make a seemingly unbearable situation somewhat tolerable. but i'm sure you already understand the complexities inherent in the job you do. and hell, it's my blog and i'll cry if i want to.

so now that i got the obligatory bitch-fest out of the way, i am proud to announce that rowan had his early intervention therapy evaluation about a week ago, and they felt he was behaving on a 3-month-old level, which jives with his adjusted age. this is great news, as we have been told that, due to his prematurity, he is at risk for having developmental delays. so far, he isn't showing it, though, and the news was good so we'll take it! another good piece of news is that his hearing really seems to be improving since he got home. preemies are at risk for hearing loss, and when he left the rehab, his speech therapist was very concerned that he might not be hearing as well as he should. i tended to agree. he didn't startle to loud noises, and generally didn't respond when talked to. he failed his first hearing screen in the NICU, but the nurse that day told me he was very agitated for the test and that could be part of the reason why, but this obviously added to our concern. we follow up with audiology on july 22nd, but in the meantime since coming home, he has started to show more signs that he can hear us. he is startling and responding to voices more often than he used to. our primary care doctor told us a few weeks ago that some babies who spent a lot of time in NICU are used to so much noise pollution that they need to be in a quiet environment for a while before they start to differentiate sounds. i'm hoping she was right.

in other news, rowan is starting to get used to his passy-muir (or "speaking") valve. he still isn't 100% back to where he was before we discovered the old one was broken, but some days we can leave it on for over 2 hours without him being too bothered...a big improvement from 5 minutes at a time only a couple weeks ago. he is also learning how to make some vowel sounds which is just the cutest thing ever to watch. he is starting to make shapes with his little lips and say "ahs" and "ohs," and then smiles like he just did something really awesome (which he absolutely did!). the other new thing he's doing is something we call "the lip trick" which is where he tries to suck his top lip into his mouth and make a smacking noise. fascinating, i know. i could watch him do that for hours.

and my little boy is growing like a weed! at his doctor's appt on friday he weighed in at 12lbs 2oz, which is at least two pounds heavier than he was when he left rehab one month prior. my goodwill donation pile is growing, too, as he doesn't fit in most of his clothes anymore. the boy is literally too big for his boppy!

we also made some changes to his feeding schedule which involved increasing his total volume (since he grew), and ditching the overnight continuous feeds. his doctor likes to use these as a way to "sneak in" extra calories and promote growth. it seems like a really good idea, but rowan's little gut didn't seem to like it, judging by the way he thrashed about in his crib all night, not quite waking up, but not resting comfortably either...and very gassy. most other parent accounts that i've read said pretty much the same thing about continuous overnight feeds: that they seem to increase gassiness/fussiness/cramping during sleep. and it just makes common sense that when you're sleeping, you're body should be resting, gut included, and not trying to do the work of digestion all night long. so long story short we got rid of the continuous feeds and rowan just gets 100ml bolus feeds, either by mouth or by g-tube, 6 times a day. i get to pick the times...as long as he gets 600ml per 24-hour period the docs are happy. right now i have the night nurses putting two of them through the g-tube while he sleeps, but will soon try to spread them out so he can have more periods of restfulness overnight. so far he is sleeping much better by all reports. so that's that.

well i'd say that's a pretty decent update. the only other thing i guess everyone usually asks is "when can he come off the vent?" and the answer is, of course, it depends. but it definitely won't be before the end of this winter. rowan's lung doctor feels he still has some beefing up to do before the big event, and also that it would be thoroughly unwise to try and wean him during cold and flu season. if rowan gets a cold or the flu, that is when he will really need the vent, i'm told. so here's looking forward to a winter full of tubes, wires, and home health nurses. thanks for reading, and i hope everyone is having a large day!

the hard days are really hard

oh my god some days this whole thing gets REALLY frustrating. parenthood is hard enough without someone saying, "oh yeah and by the way your baby can only come home attached to a million gazillion wires and you won't be able to carry him around the house with you and every time you take him outside for a while he will pay for it by wheezing the rest of the night and it's not only possible but probable that at any moment he could turn blue and NONE of your friends or relatives will be able to come close to fathoming what it is you're going through and you will have no choice but to let a stranger with a nursing degree come sit in your house and give you unwarranted advice about your life and how to raise your child for SIXTEEN HOURS A DAY. this person may or may not know what they're doing, and they may or may not be of any help to you. go and enjoy your child. good luck."

advice for compulsive hoarders

here's an idea for all the hoarders out there: let the last item you buy be a digital camera. then you can photograph all of your precious sentimental belongings before THROWING THEM THE HELL AWAY! then you can open up a shutterfly account to put the pictures. there is much more storage space on the internet than there is in your house. just a thought.

Zee Avi - Monte (Live From The Basement)

learning to laugh and other adventures

keeping weird hours definitely messes with my productivity. billy and my sleep schedules are all over the place this weekend being that there seems to be a home nursing shortage at the moment. right now i'm not quite tired enough to sleep, but too tired to do anything, so i'll just veg out on the glider-rocker and write a blog.

rowan is fast asleep on his boppy on the floor next to me. he is the picture of peacefulness. heck, he's not even breathing. he's letting the vent do that for him. must be nice to have that option! as long as he remembers to breathe when the time comes to be off the vent then that's okay with me. relax now while you can, little man...

billy and i spent the better part of the afternoon trying to make rowan laugh. he was actually doing well with his speaking valve (which lately he hasn't been doing so hot with), so we got to enjoy hearing him make some noise. we didn't hear a laugh exactly, but we think he tried. it sounded a little like a loud exhale while he was smiling really big. his other favorite thing to do is lay in his jungle gym and swat at stuff. the jungle gym has three animals hanging from the top that he can look at: a monkey, an elephant, and a lion. he always wants to swat the lion. even when we move the animals around and put the lion in a different place, he always seems to find it and SWAT! bye-bye lion. then he puts his hands together and stares it down as if he's coming up with an evil scheme. one of his nurses thinks that he's hired the monkey and the elephant to take care of the lion for him, but i'm pretty sure he wants to do the job himself:

"i'll get you yet!"

doesn't he look like he's totally determined to do some damage there? trust me, this is one baby you DON'T wanna mess with, mr. lion.

well that's about all i have to report for now. guess i'll find some other non-productive activity to work on!

other options for trachties

for anybody reading this who has a trach and is looking for some nicer trach-ties (as well as other products), check out this website: www.neotechproducts.com. they can be a little pricey, but they do offer free samples (just do what i did and call the 800 number and ask for some free stuff.)
these are the coolest ones:

they're camo! can you believe it?!? and they also come in blue, pink, and red hawaiian. they are made of neoprene so you don't have to worry about getting them wet, and they can stay on for 3-5 days at a time. they are a little stretchy, but we didn't have any problems with them being TOO stretchy (and therefore allowing the trach to fall out) when rowan wore them. the only issue i have with them is that the velcro on the sides digs into his neck a little. when we use the regular ties that velcro on the sides AND the back, then the back of his neck gets really irritated. so i've just been switching back and forth.

the other ties i really like (although they don't look quite as cool) are these:

 

mostly because they are made out of REALLY soft material, and the fabric is so wide that it wraps around the velcro and protects his little chubby neck from all the pokes and jabs that the velcro on the other ties give him. they only recommend that these be used for a day and then thrown away, but i have gotten 3-4 uses out of them by washing them with soap and water and allowing them to dry. it's also nice that they are flesh-toned (for some of us anyway) and a little less conspicuous than most trachties.

i am also thinking about fashioning him some custom-made-from-mommy homemade trachties...wouldn't that be bad-ass? but i haven't gotten that far yet. we have very little nursing coverage this wonderful holiday weekend, so maybe i'll get some time in the middle of the night to come up with a design!

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.