the eric update - day 27: the ho-hums

we spent a lot of time at the nicu today, just keeping an eye on eric. he's had a few more "a's" and "b's" than normal over that past few days and his oxygen levels have been turned up ( room air is about 20% oxygen and after a long stint of not having any supplemental oxygen, he's getting anywhere between 25 and 30%. the bloody goo problems are continuing and it's raising the background level of anxiety as we're spending more time tapping his butt or rubbing his back to try and get him to breath. we discussed things with his nurse practitioner and from her perspective he's still doing really, really fantastic. and concurred with kris' observation that the bloody goo problems and the cpap mask are part of a vicious circle. the air in the cpap mask dries out his throat and the suction catheter makes the irritated parts bleed. it just comes with the territory. here's to hoping it doesn't continue for too much longer, because at this rate he's not going to want anyone to touch every touch his nose after he gets out for a very, very long time.

we also didn't get much 'roo time in today as the only chair that fully reclines was in use and if we try to do the 'roo while sitting upright, we find that his neck muscles can't keep his head in the rights positions to get him a steady supply of air. so instead, we just hung around his bed and kept him company.

[ update: much later in the day ( o.k. maybe it was technically early, early the following day, i did get to hold him for awhile; the nicu was abuzz with reports of a possible '22 weeker' being admitted, but as our nurse said, everyone is hoping that they can delay the birth, since - as she put it - "22 weeks is not really, well, compatible with life." it's odd to look at eric and know that there's just two short weeks between their birth gestational ages. a lot of biology must happen in those two weeks. ]

the eric update - day 26: beating the wrap. more bloody goo. and personalized snugglies.

today, eric took one of those teeny, little micropreemie steps that gets him one step closer to being released. he finally beat the wrap! literally. in other words they don't have to cover his bed in plastic wrap to help keep his body temperature stable. it's a big deal for a micropreem to be able to maintain his or her own temperature ( in fact it's one of the release criteria ) and while he can't do it all on his own, he's making great progress.

he's threw more "a's" ( apneas or stopping breathing ) and "b's" ( bradycardia or stopping breathing ) today than usual, almost all of them due to mucus and goo collecting in his nasal passages and throat. the nurses joke that eric is "slimy". it's not super unusual, but the downside is that they can only get the gunk out by thrusting a tube into his nose and suctioning it out. as i've noted before, he doesn't like it at all and the downside is that you can imagine that the suction tube irritates his passages and he's getting a bit more blood in the stuff they are suctioning out. it's one of those things that's "normal", but that gets harder and harder to watch day in and day out. and bloody nasal passages seem like nice little areas for infections to grow, so kris and i spend a lot of time just wishing he'd be a little less slimy.

in addition to postcards, eric is receiving surprise gifts! a friend of a friend of a friend who had twins that graduated from the other nicu in town sent us custom bedding! they were hand made by a nicu doctor and they kept her twins bundled; if you look down in the lower left corner you can see that she even stiched "snowdeal" on the bedding so it doesn't get lost in the laundry.

dang. that's some serious kindness from a stranger.

the bedding is reversed so i could get the stitched name in the shot with him. you might notice the cloth straps which are used to really give him a bundled feeling. micropreems get distressed at the sudden lack of boundaries and really like feeling things pressing around them which they lost when they were suddenly taken out of the womb.

jeanne, thank you.

the eric update: walking the dog(s)

what's my boring life like outside the nicu? well, here's a couple of glimpses that both involve walking the dogs. with four large dogs in the house and no fenced in backyard, you can imagine just how much dogwalking there is to be done. at a bare minmimum they all need 3 walks a day totalling somehere around 2.5 miles. gina and diane (and ruby) help out a lot, but i to still get my (un)fair share of walking a day, of not only because walking 2 miles a day is a Good Thing.

last sunday, i was walking a typical route, not particularly paying attention to anything as i'm lost in thought about the day's tasks at hand. as i'm walking up logon street, passing the meyer may house, getting ready to cross onto madison, i find that i have to pay attention in order to not fall into a hole left by the missing curbs ( a funny story itself, someone has decided that the curbs and driveway entrances on our block are not historically accurate, so they're tearing them out and putting in new ones that look suspicously similar ); as i'm getting ready to step over the hole, trying to manage two large dogs ( a 105 pound malamute and an 85 pound bernese mountain dog ), i hear screaching tires, followed by racing engines. but i can't quite see what's coming up the street, because of all the trees and shrubbery in the way. so i continue to step out into the street just in time to see a truck pass by at about 90 miles per hour ( not really 90 m.p.h. but that's what it seemed at the time since it was only a few feet away ) followed by two cop cars literally in "hot pursuit". i could hear them continue to race down the street as i wondered what would have happened if the timing had been any different. later i would learn that it was this guy and that he crashed into a police cruiser just about a half a mile down the street. surprisingly, i didn't hear the crash. you don't see that everyday, now do you? too bad i didn't have my camera.

aside from almost getting run over during a high speed chase, most dogwalks are quite unexciting. sure, they like killing small land animals and might pull you down the street in an attempt to maul a cat or squirrel or skunk, but usually it's just a plain-vanilla walking and poop-picking-upping. and with the poop-picking-upping, you don't want them to "get the runs" for all the reasons that you can imagine. so, it was with much dismay that i found mauja squatting multiple times and leaving runny, stinky messes everywhere. odd. i thought. hopefully he's not getting sick.

diane would later ask me if any of my dogs had runny poops. "aha!" she said, when i told her that, indeed, mauja just did. "i suspect that means he's the one who ate the four sticks of butter off the counter today." the next day, gina would tell me that his poops would get worse. much worse.

so, if any of our nicu nurses reading this, you can blame mauja for your not getting the multiple loaves of zucchini bread, as he ate all the butter in the house and nobody has time to go out and get any more before the zuccs go bad.

the eric update - day 25: a tantrum and a little perspective.

with eric IV looking quite content much of the time ( except, of course, when his care routine requires that not-so-fun things are done to him ), i found myself wondering when he was having those tantrums that preemies are famous for. sure, he can get worked up sometimes, clenching his fists and thrusting his feet and making little squeaks. but i we've never seen a full-blown, let-out-all-the-stops tantrum. not that you want to see a tantrum, but still. and so, with perfect timing, soon after i arrived this evening, eric decided that something was not right ( of course, it couldn't have been my voice. no, certainly it wasn't that ) and started trying to launch himself right out of the bed. and the screaming. if there was any doubt, him pipes are developing well. this went on for about a minute and no amount of consolation from me or kris was helping one iota.

that's when nurse jan decided it was time to bring in the passifier, because if he has a tantrum for too long then he'll stop breathing and that's no good. the only problem is that he doesn't really know how to suck on the passifier and breath at the same time, so it's a delicate balance. eventually, he figures it out and i rest my hand on him, which helps a little too, i guess.

the postcards have started coming in! i'm not sure the nurses believed me when i told them that he was going to start getting cards from all over the world. we've just received a few so far, but is supect they'll be trickling in for awhile. we were very touched by the kind story from a nice person we don't know who hails from santa clarita, california. it's going to be hard to maintain my cynical side if people keep up with such random acts of kindness.

kris is continuing with her record setting 'roo sessions. she might do two sessions a day at about 2 or 3 hours apiece ( i bet she'd go longer, but that's the longest she can go before she has to "pump" ). as i said yesterday, there are many factors involved in how well eric is doing, but i really think all the kangaroo care is big factor. we're fantastically fortunate that kris can spend so much time in the nicu. she teaches at the local college and has the summer off, so she can spend as much time as she likes with eric. and of course, she likes to spend a lot of time with him ( not that i don't, silly. you know what i mean. ).

ahhhhhh. it's the ol', "put your wedding ring on his diaper to give a sense of perspective" trick. with all the close-ups, it's easy to forget just how small he still remains ( although he has grown 3.5 inches centimeters ( arrgggh. there's a big difference between inches in centimeters. i think 3.5 cm is a little over an inch. ) since birth. yeah!).

the eric update - day 24: by the light of the radiant warmer.

eric's making it all look so easy. he's on 6 cc's an hour of breastmilk and they aren't pulling out any undigested fluid from his stomach so his digestive track appears to be working well. i forgot to mention that he's begun pooping on his own. for the first few weeks they had to help out him out by giving what must have been a very small suppository, but i think he's pooping all by himself now. sniff. they grow up so fast. not much change in his "orders" other than they've officially moved him to 4 hours of CPAP and 4 hours of the nasal cannula. and he's in room air with no supplemental 'oooohs' ( oxygen ). at this rate i suspect he'll be on the cannula full-time quite soon, which is yet another great step forward.

i don't get to spend as much time in the nicu these days, but kris is on constant vigil and he had over 4 hours of kangaroo care with her, in addition to my paltry 1.5 hours. prayers and good thoughts, genetics and fantastic nicu care notwithstanding, i think that all the 'roo time is having a trememdous impact on his overall health.

one of the sensory pleasures of the nicu is provided by the heating element that's placed above him in his radiant warming bed. the heating element helps eric keep his body temperature in a normal range and it glows more or less brightly depending on how well eric is bundled and whether or not eric's bed is enclosed in plastic wrap. if you're taking pictures or reading or talking to eric, the heating element really kicks in and it can get uncomfortably hot. you might discover that if you've had no sleep on 20 cups of coffee and nothing but a slice of toast to get you through breakfast lunch and dinner that leaning under the radiant heating element might make you feel a little funny. so you might decide to bide time by taking a "mirror" shot while wondering how many mirror project submissions are from people looking at themselves looking at a radiant warmer. prolly not many.

as you're grasping the bed trying to maintain your stability, what with being baked under the radiant heating element and sweating caffeine, you realize that you've seen this caution message a thousand times while continually pondering what "insensible water loss" means. later, google will provide the answer as it usually does.

the eric update - day 23: more good news. and more 'admits'.

eric had another great day today. he's up to 6 cc's per hour on his feeds and tolerating them extremely well. he weighed in a 1 pound 10.8 ounces which means after losing a little over the past day or so, he gained a full ounce in the past 24 hours. i think we'll be getting close to being able to reliable count down to when he'll hit the 2 pound mark, which will be a big milestone. they also been alternating between his CPAP ( the face mask ) and the nasal cannula ( the nose tubes ). his "orders" dicated that he was to be alternated on the CPAP for 6 hours and N.C. for 2 hours, but due to a unexpected change in the plan he was was on the nasal cannula for 5 hours today and didn't start throwing an excessive amount of alarms. since the cannula takes more effort on his part, this means that he's even stronger than his care plan might otherwise indicate.

the nurses are becoming a little more unguarded in their assessments of how well eric is doing. all the praise is followed with the necessary caveats, but you can tell that they are very, very, very(!) happy with how well he is doing.

of course, we're tremendously grateful for the comments on his progress, if a bit apprehensive about the possibility of potential downturns.

we were "kicked out" tonight several times because of the number of new admits ( visitors aren't allowed when newcomers are brought in ). i wasn't there at the time, but kris met one of the new dads who was getting a tour of the nicu as his wife was being prepped for the delivery of a 27 weeker.

the nurses showed him eric in an attempt to let him see how well a baby born so soon can do, and he could only muster a gasp as he tried to take it all in.

the eric update - day 22: a day of the (extra)ordinaries

here's to hoping that i can continue with weeks and weeks of posts that are as boring as this one. nothing much extraordinary happened. well, nothing much beyond a relaxing day filled with five hours of kangaroo care with kris, a diaper change from yours truly ( the second one! kris is not exactly quick draw mcgraw with the camera so we don't get to see any pictures of me changing him. sniff. ), a bit of eye contact now and then and some quality reading time. of course, he still likes throwing out the occasional "a's" and "b's" ( nicu lingo for apneas and bradycardias ), but none of them were long enough to make him turn gray or blue, so that's progress.

i don't know how he does it, but he seems to spend a lot time trying to impress upon you just how comfortable he is despite it all. trust me. you know when he's not comfortable. like when he gets done with kangaroo care. then he turns into a writhing mass of clenched fists and thrusting feet while emitting little squeaks.

i like how he tends to open his eyes when i come to his beside to visit. his eyesight is probably no better than 20/600 so it's best to stand 6-10 inches away. he's getting better at staying focused on the center of your face when you talk, but he also tends to let his eyes wander around the periphery of your face, which is fairly "normal". i think in about 3 weeks he's going to have a set of tests from an eye specialist who is going to be looking for signs of a common problem in micropreemies known as retinopathy of prematurity, which is caused by abnormal blood vessels in the eyes. as with most conditions, there are many different stages and manifestations and variable degrees of success from a cadre of treatment options.

it's my understanding that he's at a decreased risk for ROP because his "oooohs" ( nicu lingo for the percentage of oxygen that is added to the air going through his CPAP mask ) have always remained remarkably low. in other words, the staff doesn't have to add much oxygen for him to have and adequate supply in his blood. while oxygen is obviously important, too much of a good thing can cause abnormal blood vessel growth.

but one must always remember that decreased risk does not mean no risk; for now, it's impossible to know if he has any manifestation of ROP, so it's strange to look at his beautiful eyes and wonder if there are problems lurking ahead. it's just one more thing that you try to prepare yourself for, while still attempting to enjoy the moments you do get to look into his eyes.

in addition to some reading about pooh, eric very much enjoys being read "call of the wild". for some reason he identifies with buck, a courageous dog, who is ripped from his cushy surroundings and forced into a life-and-death struggle in the alaskan wilderness where he must learn how to use his wits to survive.

after all the heaviness inherent in buck and his amazing adventures, eric finds the time to enjoy a light game of 'footsie'. well. o.k. it's not really footsie, but it's the best we can muster at the moment.

notice that piglet really, really wants to play along too.

the eric update - day 21: otherwise known as odin.

update!

since even before eric's surprise birth, we've struggled with what to name him. i was always a fan of naming him eric c snowdeal IV, because - well - you have to admit it's a bit of an unusual name; you don't see many fourths and certainly not that many that sound so nordic. i mean, eric all by itself is a scandinavian name meaning ever-powerful and certainly a last name like snowdeal adds to the effect. and as a young boy, i knew firsthand how much fun it can be to imagine yourself as eric the red, doing the fun things that vikings are supposed to do. and when you get older, you realize that it's handy to have people not ever forget your name too.

kris, however, was almost never a fan of naming eric, eric. too much confusion. essentially if she were going to yell at us, who would know who she was yelling at (it's a joke!)? and kris she was very much in favor of naming the baby an "'ooooh' name. that's right. kris likes the letter "O" and thinks it's entirely underused in the name game. and in what is best described as "woman's intuition", kris felt very strongly that the baby should have an "O" name. it's not like she had visions of ancient people telling her to name the baby an "O" name, but "you know. some people know their baby is going to be a boy; i knew he was going to be a boy and was going to have an "O" name." go figure. also, given kris' finnish background and her long time interest in things scandinavian, she also found herself gravitating towards nordic/scandinavian/finnish sounding names.

so, in the spirit of compromise we decided that if we had a boy, we'd name him eric on his birth certificate but give him a nickname that began with "O" to reduce confusion and keep kris happy. as an aside, the night of eric's birth, we briefly flirted with the idea of naming him "independence" ( and nicknaming him "indy" ), but - i think wisely - we quickly shelved the idea after a few the surgeons and nurses winced when we told them our plans. so we stuck with the original plan. family members also pointed out that being 'the fourth' born on the fourth was pretty neat too.

but then we ran into a new problem. we couldn't find a single boy's "O" name that we liked. don't get me wrong, there's nothing wrong with oliver, but they didn't seem to fit when we looked at eric and said his name. the choices were even more limited if we looked for names with a scandinavian feel ( with all due apologies to every otto in the world. it's a perfectly fine name, but it didn't seem to fit well for eric's nickname. ) and besides, if you're going to have a nickname, you had better have a story about the nickname that's better than, "well, my mom had an intuition that my nickname would begin with the letter 'O' and oliver was the least worst choice."

at some point, my sister-in-law mentioned "odin" and kris immediately took to the name. i was skeptical at first. i'm not an expert in norse mythology, but it seems like naming your child after a norse god is just asking for trouble. but kris didn't care. she liked the name and didn't really give one wit if a norse god already had it or how much people might scratch their heads when they heard it. though she said that she hadn't officially decided, i could overhear her over the past few weeks, calling eric by odin on an increasingly frequent basis; so i knew it was going to be an uphill battle ( ahem. that's a not-so-subtle odin pun. ).

a few days ago, kris sent me a link to a site about the norse god odin and it didn't do a whole lot to convince me that it was a great idea. sure, there's a few qualities that seemed metaphorically appropriate, but once again, it seems like your asking for trouble when you give your child the nickname of a norse god whose job description is, in part, to usher the dead to the netherworld. one can imagine him using the, "look. i'm odin! if you don't let me go over to sarah's house and watch reruns of "the dukes of hazzard", i'm going to have to go get thor. and you know what that means. whoopass." at every chance when he gets older.

and so today in the nicu, as i was getting ready to potentially dig in my heels and more strongly suggest the merits of more traditional "O" names, kris started to gesticulate wildly, letting out bursts of "oooh. oooh." and trying her best to nonchalantly point to the young family at the bassinet across the way. as i'm looking trying to figure out what on earth had her so excited, i could finally see it. tattooed on the father's calf we could clearly see a large, bright rendering of odin's knot. the very same odin's knot that we saw at the top of the website about odin just days earlier. neither of us had seen the symbol before we visited the website and certainly didn't know of it's association with odin and hadn't ever seen the tattoo on the man's calf.

don't get me wrong - i'm not attaching any Great Metaphysical Weight to the coincidence. as i've said before, i'm a skeptic's skeptic and usually fall into the camp of people who think that it's a big universe and based on the laws of probability alone odd and funny things will happen on occasion ( i can see legions of family members simultaneously gasping and clasping their hands to their mouths in horror, but really, it shouldn't be too much of a surprise after all these years. i guess it would be important to point out that i've also never been able to disavow myself of the rumsfeldian notion that while there are many things that i know that i know - there are many, many more things that i don't know that i don't know. i just don't know how to know what you don't know that you don't know. you know? ) in any case, getting back to the point at hand, i'm not inclined to think spooky "things that go bump in the night" types of thoughts about the whole situation, but it does seem like if you're contemplating nicknaming your child odin and you find out that the people sitting next to you in the nicu are odin's number one fans, you simply can't not name him odin, if not only because it breaks the rules that one must follow when one Happens Upon A Great Story.

now, i'm still slightly wary of nicknaming our child after a norse god, but kris likes it, we get to fulfill her woman's intuition, and it most definately has a great story. and that's why - when eric gets older and he introduces himself - he might just tell you that he's otherwise known as odin.

update: super mega bonus points will be awarded to whomever sends eric a postcard from either odin, illinois or odin, minnesota.

the computer dork equivalent of unknowingly having spinach in your teeth

i've just now figured out that the 'ex machina' rss feed has been borked for awhile. not fully borked as the feed will be read correctly, but if you clicked on the link to take you directly to the post it would give you a '404' error.

normally attentive readers who have no problem accosting me for minor spelling and grammer errors have totally fallen down on the job on this one. i suspect the lack of complaints might be due to the fact that i'm serving full content feeds and one might not normally have a reason to click on the link back to the post unless you wanted to leave a comment.

hi. ho. if you have no idea what on earth i'm talking about, don't worry it's not really that important.

the eric update - day 20: full feeder!

as his nurse donna said today, eric enjoys making a liar out of her. just yesterday she said that it would be a few days before they discontinued his IV drip and had him solely on breastmilk. but today when we arrived at the nicu we found him sans his IV lines and taking in 5.2 cc's of milk an hour!

as soon as we stood over his bed, he opened his eyes and made this gesture as if to say, "geee. it's so nice to wake up and see you again." or at least that's what we'd like think think he was saying :-)

the best part of getting "full feeds" is that he's had two IV lines removed. one of them, the peripheral intravenous cardiac catheter (PICC), was causing the bulbous thing earlier in the week so it's nice to have that gone. they also removed an arterial line from his foot.

as an added bonus, removing the lines makes it much easier to move him around during kangaroo care.

occasionally, when he's getting feisty, he'll push his feet against the plastic wrap that covers his bed which is meant to help keep the heat in.

this is probably one of the toughest photos i've shot as the light levels are very low so i have to have a slow shutter speed and and the auto focus wouldn't work due to the diffuse and wierd light coming off the plastic wrap. if i were a better photographer, i would have been able to capture the times that he rammed his foot so hard into the wrap that it looked like he was going to break through it.

incidentally, i've been under the delusion that the plastic wrap was probably some sort of hospital grade super magical polymer. eventually i noticed the large rolls that the staff has delivered from the local restaurant distributer.

the eric update - day 20: the fourth. part three.

well i guess i've got to continue the tradition of releasing a new movie on the day before his weekly "birthday". tommorrow eric will be three weeks old, so that means it's time for 'the fourth. part three.' ( 'the fourth. part one.' 'the fourth. part two.' ). i'm not sure how many more of these movies i'll continue to make, but i suppose if it's called 'the fourth' you need to have at least four parts.

i can't stress enough that you should not click on that link without some thought about what the people around you will think if you start crying. once again, prerelease screening indicates that the 'tearability' factor has been cranked up to 11, mostly due to the choice of devendra banhart's "the body breaks" for the soundtrack. i had a difficult time selecting a soundtrack this week, so i recruited the help of matthew "i don't post much to my blog but i'm a great friend anyhow" moroz. i just gave him minimal direction as to what i was looking for and i think he came through spectacularly.

a few prerelease screeners have been taken aback at the bittersweet tone that's struck in this week's segment, despite all the great progress that eric has been making. it's intentional.

i wanted to give people the slightest of glimpses of what it's like to sit around the nicu - if you've ever had to do it, i think you'll know where i'm coming from.

the eric update - day 19: new admits. confusion. and countdown to full feeding.

there have been a bunch of new admits in the nicu over the past 36 hours and the place is packed, with even more hustle and bustle and commotion than normal. it's a small nicu with only about 15 beds. if i'm not mistaken, there's only one bed left.

we see many scared and sad faces and it's tough to revisit the feelings that we know they must be feeling, as a few of the admits are quite sick. the nurses are slightly more harried ( certainly to be expected ) so the 'tone' of the nicu has changed a bit. and while eric is in no way being neglected, it still takes the nurses a little longer to get to his bed if he starts to "sag" ( meaning his blood oxygen dips and stays down, but he doesn't go into a full blown episode of apnea ). it's hard not to feel ever so slightly ambivalent at the decrease in attentiveness while completely understanding the circumstances.

disturbingly, it appears that they might be having scheduling problems with some planned vacation time colliding with unplanned admits. we see all new nurses for the night shift and suspect that they might be pulling staff from the "bench". later, eric turned from his ruddy red color to an ash gray during a prolonged case of apnea. while there's nothing particularly notable about stopping breathing and changing color, it was unusual to have it happen while there appeared to be some confusion about who was his night shift nurse. oof. and to make matters worse, the new nurse is abrupt and quick in how she handles eric. i'm sure this type of thing happens. people are human. but in the nicu everything is intensified. the seconds that tick by as your child turns ashen last an eternity. moments of brief confusion are amplified.

in less stressful news, i did find time for kangaroo care today. as usual, he was quite happy and they put his nasal cannula in during 'roo time, which is less abusive to his system than the CPAP mask, so he was doubly happy.

and the nurses have started to give him 4 cc's an hour of breastmilk through his "o.j." tube which delivers it directly to his small intestine. over the next few days they will gradually increase the milk while decreasing the volume of his IV drip. at about 5-6 cc's of milk they will have completely discontinued his IV and he'll be officially getting "full feedings". pooh keeps hearing the nurses referring to the the breast milk as liquid gold and mistakenly thinks they are talking about honey.

for the one or two of you who might be interested in the caloric needs of a micropreemie - the basal metabolic rate ( the metabolic rate required to simply maintain all vital systems ) of such a small baby is about 70 calories per 1000 grams of the baby's weight. in order to maintain a steady weight gain, the doctors like to have the baby taking in about 120 calories per 1000 grams. since eric weighs about 700 grams, he should be getting about 84 calories a day. between his breast mild and IV feedings, he's getting somewhere around 5.2 cc's of food an hour which is about 125 cc's throughout the day and that's 4.2 fluid ounces a day.

both his breastmilk and the intravenous fluid give him something like 20 calories an ounce, which means he's getting - surprise(!) - 84 calories a day ( 20 calories an ounce times 4.2 fluid ounces a day). which is exactly what he needs to keep him running, while allowing him to put on a bit of weight.

the eric update - day 18: mucus interruptus

we still get to see a fair number of "firsts" each day and today it was the first time that kris had the opportunity to change his diaper! i would have done it, but...er...somebody has to take the pictures :-) next time, i'll be eagerly standing in line. honest.

given all the relaxing photos of 'roo care, you might be tricked into believing that he's not occasionally wisked away under duress.

today, his blood oxygen took a dive and none of the typical measures to get him to breath were working.

usually that means that he's collected a sticky wad of mucus in one of his breathing passages, which requires the nurse to suction it out.

his passages were getting clogged a bit more than normal and they were irritated as evidenced by blood getting suctioned out along with the goo. unfortunately, mucous and dried passages come with the CPAP territory. imagine having air blown in your mouth and nose 24 hours a day. i think it's probably like driving 80 m.p.h. down the highway with your head out the window. i know it's "normal", but it doesn't make it any easier to watch the nurses shove 6 inches of tubing into his nose and retrieve great gobs of bloody goo. eric doesn't like it much either. such is life in the nicu sometimes.

in a rare example of restraint, i'll save you from the picture of what they pulled out of his nose.

he alarmed a bit more than usual during the 'roo time today from all the goo; kris did her best impression of someone attempting to relax, but she can't fool me.

despite it all, eric reminds us that he can teach us a thing or two by taking it all in stride and getting mighty comfortable with his blanket.

and the boy's Got Milk. he's on 3 cc's an hour and tolerating it well.

the eric update: postcards from budapest

08.10.09 update:

finally, after a 3 year hiatus, i'm relaunching the postcard project and you can once again send odin a postcard. new address:

odin snowdeal
p.o. box 72
la farge, wi 54639

06.21.06 update:

we recently moved to a new town and i hope to set up a post office box soon. but in the meantime, please don't send any postcards to the old address because we might not get them!

04.26.05 update:

to clear up any confusion - you can still use the p.o. box to send odin postcards or whatever you'd like - and this post will always contain the latest address. so before you send anything, check here to make sure you're sending it to the right place. once again, the address to use is the same as the one i posted in october, even though we're moving as the postcards are not sent to our home address :-)

eric c. snowdeal iv
p.o. box 1514
grand rapids, mi 49501-1514

10.02.04 update:

since we've moved to a new nicu, please don't send postcards to the old nicu address! so, for all you procrastinators, here's the new address:

eric c. snowdeal iv
p.o. box 1514
grand rapids, mi 49501-1514

as an added bonus, people can send stuff to eric at the new address after he's released from the nicu. woohoo!

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o.k. i'm getting way, way too many emails asking for my personal address and how you all can support eric IV and us during this difficult time. now, as much as i'm astounded by all the emails i'm getting from around the world, i'm not quite ready to give out my personal address or start passing the hat around ( although i reserve the right to change my mind, if my bandwidth bill starts to eclipse the nicu bill ).

however, the other day i received a wonderfully kind email from a woman in budapest who wanted to send eric a postcard and i thought it might be an easy and fun way for everyone to express their support. so, i talked with the nicu nurses and they said they would be happy to get his postcards and put them up around his bed. so, if you or your family have been thinking about eric and are wondering how you might be able to let him know that you care, feel free to send a postcard to the following address:

don't use this address anymore! if you send postcards here, we won't get them :-) eric c. snowdeal IV
NICU - 8th floor
c/o. st. mary's hospital
200 jefferson ave s.e.
grand rapids, mi 49503

bonus points will be awarded for postcards sent from preemies ( or their parents or nicu nurses ) with a short version of their birth story and/or nicu experiences.

update: ooops. i forgot that not eveyone knows that eric will be in the nicu for the next 3 months, so it's not like you have to run out and put the postcard in the mail today, as there's plenty of time to procrastinate. not that i'm encouraging procrastination, mind you.

and, i'm not saying that i'm trying to game blogdex or daypop or anything ( which, of course, means that's exactly what i might be saying ), but if those amongst you with the means are feeling charitable and you'd like to link to the post to get the meme out, i'd be mighty obliged.

i mean, c'mon. if you were in the nicu for 3 months, you'd like a postcard or two, too :-)

the eric update - day 17: YABPTMAKC

yes. it's Yet Another Boring Post That's Mostly About Kangaroo Care.

today when we arrived i happened to catch him getting a transfusion. there's nothing out of the ordinary about this transfustion. he's had 7 of them so far, which is to be expected. he gets 7 cc's of blood with each transfusion. obviously he'll get increasingly larger transfusions as he gets bigger. he doesn't seem to mind them too much, although after he got this one he started to cry and there didn't seem to be anything we could do to settle him down.

his jaudice is getting better without any phototherapy. his bilirubin levels have dropped under 4 and went from 3.7 to 3.4 in just the past 24 hours. so his liver is getting better at processing the toxic byproducts of dying red blood cells. interestingly, a nurse told me that they aren't really sure precisely why phototherapy helps to break down the billirubin, but back in the 70's they noticed that the babies that were close to the windows in the nicu did better than those that were not.

apparently, i stand corrected about kangaroo care and its adoption in the states. kangaroo care is "becoming" standard practice in america, but it's not as fully adopted as in europe, where it's not uncommon to have separate rooms with beds to encourage parents to stay 24 hours. i had commented yesterday that i was surprised that there were prominent nicus in the u.s. that didn't advocate kangaroo care, but that was based on old information ( from a book that was only a couple of years old, so you can get and idea of how quickly it's being adopted ), according to nurse jan ( whose hands star in part two of 'the fourth' and whom we think eric enjoys immensely ). in fact, the other nicu in town is going to be building a new facility and rumour has it that they will be adopting the european practice of having sleeping areas for parents to encourage them to stay for as long as possible.

sadly, from what we've seen, it might not be appreciated by as many nicu parents as you might think. this might come out all wrong and i might just regret saying it and i'm not trying to cast any dispersions or make any judgements, but we've been stunned at how few visitors come to see the other babies. the nurses have commented that it's not that unusual and that it's very difficult for them to see how little time your average nicu parent will spend with their children. i think we see people visit for see average of a half and hour a day. period. including on the weekends. and nights. again, i know this is going to sound like i'm saying "ooooohhh, we're sooooooo great and you're not. neeener. neeener" and i'm not trolling for "you're such fantabulous parents" comments; and i certainly understand that people react to the trauma of being in the nicu fishbowl differently, but it's honestly shocking when you think about the fact that most of the kangaroo care studies recommend at least two hours per day. and those crazy europeans want you to sit around all day.

i guess i'm honestly wondering what the other nicu parents are going through. i'm sure there's a nicu family counselor out there that could shed some light on the many varied ways that families react. [ update: see this thoughtful response for many rational reasons as to why nicu parents might not be around as often as one might think. given what i've seen i supsect i might not be being as sensitive to the 'distance' ( we live a mere 4 blocks from the nicu ) and the 'other responsibilities' ( i guess those other responsibilities don't go away on the nights and weekends ) issues. ]

oh. and he's on 2.5 cc's of milk per hour! and he's producing poops on a regular basis! well, he still needs a very tiny suppository to keep things regular, but he's pooping nonetheless.

the eric update - day 16: doing the 'roo with pops

finally! after a false start earlier in the week and kris hogging all the kangaroo care time recently ( obviously, i hold no malice - moms always get first dibs on kangaroo time ), i was beginning to wonder when i'd ever get a chance to get some skin-to-skin time.

he stayed on my chest for two hours without throwing a single, solitary alarm. it's amazing how much their breathing and heart rate stabilize when doing kangaroo care. he'd been having bouts of bradycardia all morning long that immediately disappeared as soon as he was put on my chest. and his heart rate really does do less "bouncing around". it's hard to believe that there are still some fairly prominent nicus that don't encourage the practice. even if the physiological benefits to the baby weren't fairly well proven, it obviously does the parents a world of good.

as you can see, he was a very happy boy after it was all done - all smiles and making cutesy eyes at kris.

the eric update - howdy stranger

if only because some of my family members that are checking the site regularly might be confused by all the strangers commenting, i'll point out that this site is getting quite a bit of 'traffic' from boingboing. i'm not going to even try to explain boingboing to my nana in machias, maine ( maybe it helps to know that xeni, the person who posted the link, also does occasional work for npr? ) who is getting the daily update after it's printed out, but suffice to say, boingboing has a very large readership and there are many, many, many more people rooting for eric.

in fact, between the "regulars" who've been visiting the site for years and are patiently waiting for me to go back to more boring topics, the scads of family members that are hitting 'refresh' every ten minutes, the many moms ( and a few dads, likely ) from nursingmom.net ( the thread was graciously started by my sister and it's amazing to see it take on a life of its own ), the dads from daddytypes and everyone else from from bloggingbaby, i think it's safe to say that eric developed quite a large support network. and what a varied network it is - i imagine everyone bumping elbows at his nicu release party, saying chummy things to each other.

i obviously knew that his story might interest a few people beyond family and "the regulars", but i really had no idea that so many people would find it so captivating.

update: so, why is this site still "up" after already exceeding my monthly bandwidth quota, even before getting the boingboing treatment? because michal over at cornerhost is a true gentleman ( and fascinated by the story, i suspect ). so, in a certain way, you could say that this site is being brought to you by michal and you should remember that when you're looking for a hosting provider with a "human touch".

the eric update - day 15: more of the same. in a good way.

nope. you never get tired of seeing the finger grab.

we had another great day today. his white blood "differentials" are all back to normal and he's now getting a whopping 1.5 cc's an hour of breast milk, which - if i've done my math correctly - is a little over an ounce a day. he didn't forget to breath at all today and he had 8 episodes of bradycardia ( slowing of the heart rate ), but they can all be attributed to a buildup of saliva in the back of his throat. micropreems don't have a fully developed swallow response ( and all the tubes don't help ) and somehow that leads to his heart rate slowing down. nurse cheri said he lets them know that he needs his mouth suctioned by throwing a bradycardia alarm or two. he's funny like that.

and he got two more hours of kangaroo care with kris. maybe tommorrow i'll get my chance.

he's got a bit of a bulbous growth near the entry point of his pic line. besides being fairly nasty looking, it's not anything that overly concerns the staff. fluid collects at the entry point of the pic line that threads close to his heart. he keeps his hand folded in such a way that fluid tends to pool in the area. it's really not very pleasant to look at, but it's fairly harmless. they did try to get him to keep his arm extended more today and it got better, but he didn't cooperate for very long.

the eric update - day 14: the weigh in

i haven't been posting many updates on eric's weight, because - well - not much interesting happens in the first couple of weeks ( unless he gets sick and loses a bunch of weight ). all his energy in the beginning is spent fixing vital systems and isn't directed towards weight gain per se. micropreems will typically lose a little ( it's normal to lose about 10 percent of their birthweight in the first few days ), slowly gain it back over the following two weeks, and then ( hopefully ) go on a weight gain tear.

tonight, he weighed in at 685 grams, which is about 1 pound 8.2 ounces. he was down to 1 pound 6 ounces a few days after his birth, at which point he weighed 1 pound 7 ounces.

so he's perfectly normal. for a micropreem.

we also learned tonight that, after being taken off breast milk when he went back on the vent, he's back on regular "feedings" ( technically they aren't feedings at all, but rather "gut priming" to get the blood flow going in his stomach, but gut priming has a much less appetizing ring to it, so i just call everything a feeding ). he's on an IV drip of breastmilk at a rate of 1 cc per hour, which is different than the previous feeding protocol known as "gavage" feeding which involves putting a few drops in his endotracheal tube. i think they are being a little more cavalier about the amount that they are giving him because it's being given through his new "o.j." tube goes straight to his intestines ( see today's prior post for more information on his feedings, the "o.j. tube" and how this all might be related to his most recent downturn ).

i'm a little suprised that they would start putting him on 1 cc per hour of milk when they were expressing concern that some of his issues over the past few days might possibly ( or might not, depending on the latest theory ) be related to his feedings, but what do i know. i'm not a doctor. and i don't even play one on tv.

in any case, if we tolerates his feedings, i'd expect him to start gaining weight quickly over the next few weeks.

oh. and as you can obviously tell from the picture - he clearly doesn't like to be weighed.

the eric update - day 14: baaaack in the CPAP saddle! and more kangaroo care.

lots and lots of things going today. he was doing so well on the vent and they were so quickly dialing back the "assist" settings that they put him back on the less abusive CPAP regime last night! w00t! again, they thought it wouldn't be unusual for him to stay on the vent for a few weeks, so this is a great sign that he's recovering quickly.

his white blood count differentials are looking better. they still haven't found a specific bug and nurse practitioner dawn and i talked about the meaningfulness of the tests for quite some time today. they are useful as a "barometer", but not as useful as compared to full-term differentials, since there seem to be so many special exceptions to the rules for micropreems, as their immune systems simply respond differently or not at all. n.p. dawn has apparently seen micropreems close to death with no differentials at all and perfectly healthy babies with big swings "to the left" ( she kept referring to a "swing to the left", which i'm sure refers to a change in the standard differential graph, but i never bothered to clarify the point so i could be wrong ). so, in the continuing saga of making Educated Guesses, since they've not found anything in his cultures ( again, you might not ever find anything in the cultures ) and his insulin has stabilized, they feel that he could be: 1. responding appropriately to the antibiotic regime. 2. stabilizing after being Just Plain Tired and the differentials were a Big Red Herring 3. stabilizing after having a bout of the earliest stages of necrotizing entercolitis (NEC), which is an inflammatory response in his gut that we talked about the other day and which could cause the differentials that they were seeing. 4. stabilizing after "aspirating" his food back from his stomach into his esophagus, which - for reasons that aren't well understood - can cause apnea, bradycardia and differential shifts to the left.

when eric went back on the vent, they stopped his feedings, which would have reduced the potential inflammatory response ( just one of the many variables that changed ) and/or the potential aspiration events, so they are now moving away from the yeast infection theory and towards the theory that he's not tolerating his feedings. to that end, the observant among you will notice that he now has a green "o.j. tube" ( oral-to-jejunum ) inserted through his mouth ( can you guess where an "n.j." tube originates? ) and threaded down his esophagus, through his stomach and directly into his intestines ( you did remember that jejunum is the name for the beginning of the intestines, didn't you? of course you did. ). the o.j. tube will reduce the chance that he will aspirate his food.

the potential NEC is a little trickier to manage ( and much, much more problematic if they don't catch it in time ). about the only thing they can do is reduce the amount of milk they give him in the "gut primings" and watch him very closely.

anyway. the greatest part of going off the vent and back to the CPAP is that we can start the kangaroo care again! and this time kris had him on her chest for over 1.5 hours and completely hogged all the time. i think she needs to learn how to share :-)

the biggest excitement of the day came at the end of the kangaroo care when eric decided to surprise everyone by pulling out his endo-tracheal and o.j. tubes. i can't imagine that it was very pleasant, so hopefully he'll realize not to do that too often. he was quite unhappy with nurse donna when she abrupty had to wisk him away from kris to start rethreading tubes.

oh, and it shouldn't go unmentioned that as of 8:36 tonight, he'll be two weeks old, which brings his overall survival stats to closer to 85%, which is certainly a lot better than his chances when he first came into the nicu.

the eric update - day 13: the fourth. part two.

you've been clamoring for it, so i released the sequel to 'the fourth' a day early!

prerelease screening to select relatives and nicu staff indicates a high 'tearability' factor, but not quite as high as the first movie.

the music was ripped from the second track on lullaby: a windham hill collection, which provided the track to the last movie. i've been a huge fan of tuck and patti for years and it was one of the reasons that we bought the collection. if you like the track you'd be wise to dig into the rest of their discography.

enjoy. it was a lot more difficult that i thought to edit down all the analog footage that the nicu nurses shot over the first week. did i mention how great they are? i hardly think that videographer is written in the fine print of their job descriptions.

the eric update - day 13: a mostly lazy day

today was a very boring day with not a single, solitary alarm; well maybe this is not quite true actually, as the nurses will typically induce apnea during some of their procedures, but nobody counts those. except maybe for eric.

he's still on the vent, but they are continuing to gradually reduce the settings and suspect that perhaps over the next few days he might be able to go back to the less abusive CPAP regime. this is surprisingly good news, because the staff has been suggesting for the past few days that he could possibly be on the vent for a couple of weeks.

and his infection seems to be getting better. there's still no definitive results to indicate what sort of infection he might have, but all of his differential blood counts are looking more positive and his blood sugar is normalizing.

so, with a lack of white-knuckle events to pass the time, we found ourselves enjoying just sitting around his bed, reading more from winnie-the-pooh, talking with the always informative and mostly cheery nicu staff and just generally having what passes for a lazy saturday these days.

the eric update - day 12: bugs in the system

sorry to say, i don't have any substantive news to report today. overall eric appears to be in the early stages of fighting an infection of indeterminate origin, so we got a refresher course in infections and immune response as the staff plays a detective game based on clues from his differential blood count. as i'm sure you all remember from your high school biology classes, there are many different kinds of white blood cells and his doctors are trying to deduce the best therapeutic course based on the available evidence.

why not just "plate out" a sample of cells and see what kinds of bugs are growing? well, therein lies yet another peculiar prematurity problem. the staff can only withdraw a very small sample of blood to test for infections - perhaps a half a cc at a time. this is such a small sample of blood that it's unlikely in the earliest stages of infection that you'll actually catch the bugs in the withdrawn sample. in many way, you actually don't want to find the bug, because then you'll know that the infection has progressed farther than anyone would like.

so you can't base your therapeutic course of action on the results of a culture. perhaps you could just blast his system with a wide spectrum antibiotic? that's no good either, as you'd be creating an environment, what with all the humid oxygen-enriched air that's being pumped into his system, that would support the quick creation of antibiotic resistant strains of whatever you're trying to pummel into submission. there are also other generalized bad side effects that result from the administration of prophylactic antibiotics in micropreems.

so you rely of educated guesses after looking at his entire clinical picture. there's still nothing showing up in his cultures and his total white blood counts are now stabilized, after going on the upswing over the night. more informatively, his neutrophils ( his "big gun" immune cells as wendy, his nurse practitioner, likes to call them ) are down and his bands ( immature neutrophils ) are up. so something is picking off his immune system "heavies" and he's trying to make more and they aren't maturing fast enough. his blood sugar is starting to rise slowly, which more specifically indicates that he might have a generalized yeast infection. or at least that's what they are guessing.

so they're leaning towards proactively treating him as if he has a yeast infection, but they don't want to pull out the antibiotic equivalent of a gatlin gun ( technically, it's called amphoteracin, but all the nurses call it amphoterrible ), because it has nasty side effects that are all the more nastier when you're born 15 weeks premature. but they did stop his gentamicin which is a general purpose antibiotic and started him on something that i can't spell because i scribbled it too quickly in my notes and now i can't read the name. hi. ho. maybe it wasn't important :-)

and adding insult to injury kris went to the doctor and discovered that while she's well on her way to making a full recovery, in terms of her blood pressure at least, she has not one, not two, but three different bugs who have started calling her bladder home. of course, there is no single antibiotic that will kill all three, so she has several horse pills that she needs to take several times a day. the doctors don't appear overly alarmed, "as long as they don't move to your kidneys."

the eric update - day 11: the call on a very small animal

the phone is ringing.

you awake with such a start that you actually have to remember that you were just sleeping.

after remembering where you are and that phones ringing at odd hours are A Bad Thing, you're off the bed and launching yourself out of the bedroom and into the hallway, heading towards the place where the cordless phone should be, but isn't.

you wonder why the phone is never in the first place you look, as the answering machine that's cleverly located down three flights of stairs picks up the call. your adrenaline is pumping now, but not quite enough to stop the asinine thought from entering your head that it might have been a wrong number.

after navigating the byzantine phone menu you finally see what you knew all along - a missed call from st. mary's hospital.

you discover that it's clearly not going to be a good day when you try to dial the number revealed on caller-id, only to find that the number has been disconnected. it doesn't make sense in that way that only makes sense at this hour. defeated, you toss the phone to your better half who somehow manages to get a nicu nurse on the line.

efficiently, it's relayed that nothing tragic has happened.

"o.k. he's back on the vent?"

"you had to 'bag' him twice in the night?"

"his bloodwork indicates that he might have an infection?"

you wonder if there are any negative side effects to repeated and prolonged episodes of fight-or-flight syndrome as the conversation ends with a succession of "um. yeahs." and "o.k.s" and a final "o.k. we'll be there as soon as we can."

and so coffee is made, dogs are walked and breakfast is skipped, but a shower is not.

as you walk into the nicu, you can see all the nurses looking at you kindly, but observantly, out of the corners of their eyes. they know you've received your First Serious Call and they are observing you for signs of A Major Freakout. you think you feel fine but you wonder if maybe you don't know yourself as well as you might like to believe.

as you walk up to his bassinet, you hear the acronym soup that is suprisingly comprehensible: a 'PIP' of 15 and 'PEEP' of 5. his backup respiratory rate provided by the ventilator is 40 and his 'oooohs' are set to 35%. he got 'bagged' twice in the morning even after going on the vent and his wbc went up to 11 from 1, which means that he could be developing an infection; consequently, they've begun giving him vancomycin and genomycin.

as they're telling you all this, you notice that your new social worker, jennifer, is emerging from the background and trying to calmly assess you. you imagine that your reactions might even become part of your permanent record. you reassure jennifer that, indeed, you have the mental fortitude and steadfastness of character to weather the most perfect of storms.

later. after studying your son's head for quite some time, you decide that today is a good day to begin teaching him about pooh.

""it is hard to be brave," said piglet, sniffing slightly, "when you're only a Very Small Animal." rabbit, who had begun to write very busily, looked up and said: "it is because you are a very small animal that you will be Useful in the adventure before us.""

the eric update - day 10: care. kangaroo style.

so i guess you really can't prepare mentally for what you're going to experience in the nicu. yesterday we had no idea we'd spend the day getting our son to breath and today we thought we'd probably walk in and find him on the vent.

instead the nicu nurse exclaimed, "how'd you like to try some kangaroo care today!"

it was one of those moments where you want to start running laps around the nicu stations yelling, "yeeeeeeehaaaaaaawwwww!" but you don't. because that would be rude and self indulgent. not everyone else is having such a good day. so you just walk over to your station with a certain jaunt to your step and get ready for Another Perfect Moment. incidently, this is a good example of the subtleties and nuances that one must observe while becoming a 'nicu parent'. you're in a fish bowl with a half a dozen people on their own emotional rollercoasters and you're all simultaneously trying to figure out how to "become" a parent in front of complete strangers.

kangaroo care is simply a way of holding a premature baby so that there is skin-to-skin contact. the process is fairly simple - or as simple as you can get when you're holding a baby who has attached a variety of sensors, wires and tubes; eric, wearing only a diaper, is placed against mine or kris' bare chest. in addition to providing both parents with a great way to bond with your child, it has been proven to bestow a range of physiological benefits to the child, from stabilizing the baby’s heartbeat, temperature and breathing to boosting a premature baby’s brain development. and it's a whole lot of fun.

kris held him for an hour and indeed, his breathing and heart rate improved, as evidenced by a lack of apnea alarms. of course, as soon as the nurse put him on my chest, his oxygen dropped and we basically spent 10 minutes trying to get him to breath deeper before giving up and putting him in his bed. feeling like i got the short end of the kangaroo care stick, i decided to give him a massage with an ointment that smooths his skin, prevents water loss and helps him retain heat.

the eric update - day 9: the rollercoaster

eric was "throwing" more alarms than usual today. mostly apnea ( forgetting to breath ) and bradycardia ( slowing of the heart rate ). while completely normal, it can still get tiring to sit, staring at the monitor, with a hand ready to rub his back or the bottom of his foot to jumpstart his breathing, if the alarms start. last evening he had 6 apnea/bradycardia incidents alone and he had 8 more over the night. typically, he might have 3 or 4 in an entire day - so the rate has definately increased.

when micropreems are having trouble breathing it means, at best, that they are getting tired and at worst something else is going on, such a systemic infection ( in this particular case, it's probably not a generalized infection, since they didn't see an elevated white blood count in his latest labs ). in either case, you'll often see a range of systems start to work less efficiently as things start to slow down. and when that happens, the nicu nurses have to do many unpleasant things to your baby while you watch. this is the sad part of their job and they are all the more heroic for doing it day in and day out.

the nurses are going to put him back on CPAP full time, since the nasal cannula takes a little more work on his part and if they need to start "bagging him" ( ventilating him manually with a small bag like you might see on the tv program 'ER' ), then it's possible that they might put him back on the oscillating vent. i don't even think they'd call it a set back, but rather he's just telling us that he's tired and would like us to take over for awhile while he recoups.

another sign that he's getting tired came when they suctioned the contents of his stomach and found 1.5 cc's of undigested colestrum. they are giving him 0.5 cc of colestrum every 2 hours, so clearly his digestion has slowed. if the food sticks around for too long then a condition known as necrotizing enterocolitis (NEC) can set in quickly, as the blood supply to his bowels is decreased or interrupted. under those conditions, hypoxia ( lack of oxygen in the tissue) can kill or damage the cells in the bowel wall, eventually leading to perforation and peritonitis ( infection of the abdominal cavity ). advanced NEC is something you don't ever want to see, since it requires very difficult bowel surgery, so they'll be watching him closely.

so, in the end, today was quite demanding and typical of the rollercoaster that a 24 weeker can put you on; and when juxtaposed against what happened yesterday, today was a great reminder that one needs to focus on enjoying each moment for what it is.

the eric update - day 8: the perfect moment

what can i say? the kid enjoys defying the odds and exceeding expectations. last night he had his umbilical arterial (UA) line removed and they thought they might remove his umbilical venous (UV) line if he looked good over the night. they only remove these lines when he's begun to stabilize enough that he doesn't require extremely precise measurements of blood gasses, so it's one more sign that he's doing fantastic.

they thought perhaps they'd try to put what's known as a pic intravenous line in a good spot in him, which they'd thread close to his heart. then they'd need to watch and wait and make sure that he faired well after the routine, but still difficult, procedures.

he did so well over the night with all the changes that we were very pleasantly surprised to find the nurse asking us if we'd like to hold him when we arrived at the nicu! they had been telling us that it could be weeks before we could hold him, so you can imagine the range of emotions we felt in an extremely short time period.

i know this might be bordering on the cliche', but it truly was one of the most sublime and inspiring events of our lives and the pictures don't even come close to capturing the essence of the experience.

the eric update - day 7: eric's first movie!

o.k. i'm an imovie novice, but i thought you all might enjoy a sneak peak of a much longer version of movie that i'm working on.

update: i posted this late last night and forgot to warn everyone that i pulled a 'spielberg' and can rightly be accused of blatant pulling on the heartstrings. keeps a tissue handy :-)

the video clip at the end is tiny piece of what the wonderful nicu nurses have shot.

update: many people are asking, and i can't believe i forgot to properly attribute the music clip on the movie. it's track 1 on lullaby: a windham hill collection. the vocal track is not properly credited on the amazon link, but it's quite clearly carly simon's voice. kris had picked up the cd a couple of weeks before the birth and had been playing it at night to help her sleep, so eric heard the song dozens of times in the womb. and while i might not necessarily subscribe the theories that puport to prove that music therapy in the womb will make your baby "smarter" ( kris respectfully disagrees with me on this point ), it's well known that babies can "hear" in the womb at 20 weeks and can differentially respond to sounds that they've heard in the womb after delivery.

the eric update - day 7: what a week.

wow. has it really has been a week? i guess it has. and he just keeps getting stronger and stronger with each day.

i know every nicu parent probably thinks it, but i know he's really grabbed the hearts of many of the nurses. they go far above the call of duty for him, stopping by his station on their off hours or when he's technically not on their watch, snapping polaroids of him doing cute stuff when we're not around and even shooting great little movies of him ( you'll see those in good time ). he's a devilish little charmer and some of the nurses even think he's quite a rascal. i'm not sure what that means, but they seem to think it's a good thing.

today has been fairly quiet, which is exactly what we want. without all the hullaballoo, you can pick up subtle differences between the days, such as he's getting much more responsive to my voice; today, when i first came up to the bed and started to peel back the plastic wrap, i said, "heellloooooooo! eric." and he immediately thrust his little arm up and out the enclosure through the narrow slit in the wrap, catching me by surprise. sadly, i don't have my camera with me every single instant of the time that i'm there, so i missed that shot.

later he decided he wanted to squeeze my finger, which was fine by me. technically, this is not his first finger squeeze. auntie diane has been claiming that he's been squeezing her finger for days. but today i guess he decided that i was a good substitute.

the eric update - day 6: finding a routine and a first feeding

today was the first day that we had a chance to begin even thinking about establishing some sort of visitation routine. in many ways, we're profoundly lucky, in terms of how easy it is to go see eric. some of you know, but most don't, that the house that we bought for the snowdeal show ® is a mere 4 blocks from the nicu. we really couldn't have planned it any better. when we were looking for properties with our co-purchasers ( sister-in-law and her partner ) we discovered that one of us ( sister-in-law ) was actually only interested in looking at houses in a very specific 8 block area in the historic district ( where, of course, we eventually found a house ), but the rest of us were leaning towards getting some land outside the city. many long and heated discussions were had where we tried to get gina to be reasonable and move up to an hour away . she wouldn't have any of it. we were on the verge of dropping the entire plan when we found the house we bought before it even went on the market. so we literally can take a brisk walk and see eric in 10 minutes, ultimately because gina was stubborn and uncompromising about where she wanted to live. strange, but true.

today, felt like the first day where we could sit back and try to relax in the nicu. however, relaxing involves trying to find strategies to cope the fact that on this particular day as you walk up to his bed, his nicu nurse is calmly, but with firm expedience, shutting off a beeping monitor and, if you look close, you'll notice that she's simultaneously getting him to remember to breath.

"hi!" she says, with an oddly cheerful tone given the circumstances. "he's a great night. a few bouts of apnea and bradycardia this morning, so we'll let him calm down for a bit after he starts remembering to breath again. all very normal, of course. amazing how well, he'll slid into 26 weeks."

right. it's all very normal. so i decide that i'll catch-up on some light nicu reading while my son remembers to breath, hoping that his brain stem continues to develop at a good clip over the next few weeks so he doesn't have a to deal with forgetting for long. i find myself having to remember to not casually flip around the nicu "doorstop". the first thing the nurse will tell you when you get the book is that you really shouldn't just flip around to random pages and to just stick to what's relevant to your current situation, as "you'll just worry yourselves needlessly."

after things settle down, eric's nurse tells us excitedly that she thinks he's ready to get his first feeding. and a few moments later, she's attaching a syringe filled with colostrum to his endo-tracheal tube.

he quickly starts to wrap his hand around his air mask and feeding tube, looking quite content and breaking your heart at the same time.

the eric update - day 5: the discharge blues

everyone tells you it's going to happen. you're running on vapor and adrenaline for days on end, as a stupendously wonderful support team of family, friends and specialists forms around you. you can't believe that something so fragile can possibly be making so much progress in so little time. time passes. news that you can't almost stand to bear keeps getting better and better. and almost without warning, you're staring at them.

disharge papers.

and after weathering so many challenges, the best you can muster is guilt.

you're going home and he isn't.

sure. he's got some cozy accomodations and best support that anyone can ask for. but still. after you leave, he's still here. getting poked and prodded. rubbing his eyes and looking around. thrusting his legs and arms, still likely confused as to where his boundaries went, until maybe nurse jan comes by and tucks him in or holds his legs and arms against his chest to fool him into thinking that he just might possibly still be in the womb.



but despite no tubes and a whole lot of great progress, you're still sad because you're not there. and that's when you realize a whole new kind of hard is only just beginning.

the eric update: the best day. evah!

nothing but good news today. early in the morning, the doctors decided to take kris off her magnesium sulphate and discontinue her IV completely. so no more tangled mess of cords coming out of her. and her labs all look more positive, so i think it's safe to say that she's starting the "normalization" process. she's eating regular solid foods and even has real pajammas on, so that all makes her happy. and in the evening she finally got the go-ahead to take a shower. i guess the novelty of a sponge bath wears off pretty quickly.

even better - kris got word that she could see eric! despite all the pictures, her initial reaction was to gasp at how small and fragile he appeared to be amidst all the equipment. we stayed for about an hour and watched as they prepared to put him on a new ventilator. we talked, and touched and even saw him open his eyes! that's right, his eyes were fused shut and nobody was expecting him to open them for another week or two, but i guess he's enjoying proving everyone wrong. he'd struggle to keep them open and slowly start closing them, until i'd say his name and then he'd try to open them again.

the new ventilator is a big step for him. he's been on what is known as a high frequency oscillator which rapidly causes his chest to rise and fall as it helps him take 300 to 400 "breaths" a minute. this is absolutely necessary when he first arrived, but he shouldn't be on it for too long as it can affect his long term lung capacity. so, it's a really good sign that he's on a new vent called a "baby log" which is in "continuous positive airway pressure" or CPAP mode. so no more oscillating and he'll essentially be doing most of the breathing while it's in CPAP mode. this is another big stabilization step, so it's fantastic news. he will probably be on his new ventilator for awhile. or not, i guess, considering how much he enjoys beating the odds.

[ update: he's been on the new vent for a few hours and he doesn't like it so much as his blood gasses started looking bad - mainly due to him forgetting to breathe. so they've taken him out of cpap mode and put him in 'pressure support ventilation' (PSV) mode with a volume guarantee (VG) of 3 cc's and a backup rate of 44 breaths a minute. so essentially if he forgets to breath, the machine ensures that the makes 44 breaths a minute and it also makes sure that he's getting 3cc's of air, which is about the capacity of his super small lungs. ]

and, proving that he really does have snowdeal genes, they started giving him caffeine today which he seemed to enjoy. i always said that you can't start drinking caffeine too early or too often. no, they aren't trying to create a coffee addict, but rather the caffeine somehow helps him to remember to breath. micro-preems apparently have a bad habit of forgetting that they aren't in the womb and simply forget to take breaths. it's not unusual for babies to be released and still be on a caffeine schedule as they are still forgetting to inhale.

he's been under the "jaundice light" again today and he's looking a little yellow, but that's completely normal and the least of anyone's concerns.

thanks so much too everyone who has sent flowers. they kept coming yesterday and today and we're starting to look like a regular florist shop. the room is really fragrant and nurses and been poking their heads in because they can smell the flowers all the way down the hall. word has spread around the floor and everyone is so surprised at the amount of support she's getting. in just the hour that we were in the nicu seeing eric, she received six arrangements, and was obviously very happy. again many, many thanks to everyone for sending the flowers. considering how much she's improved in the past 24 hours, i'd say the plan worked perfectly.

in fact, you all can stop sending flowers because there's a small chance that she might not be here to get them. amazingly, she's making such rapid progress, that they are hinting that she might be released tommorrow evening. if not tommorrow, then almost certainly on saturday. her recovery is simply amazing as it's not uncommon for the preeclampsia "10 percenters" to take weeks normalize.

lots and lots of people all over the world have let us know that they're sending us good thoughts in whatever way seems appropriate for them and i must say that while i'm typically a skeptic's skeptic, it certainly doesn't seem to be hurting; we've had nothing but good news and both eric and kris are making surprising recoveries.

but while kris is clearly out of the danger zone, eric still has a tough road ahead. amongst many other impending issues, everyone is going to be very vigilent about infections. one bout of pneumonia can wipe out all this wonderful progress.

the eric update: he's no wimpy white boy

on a day that statistics will tell you will probably be a bad day, we received some great news! at noon, we found out that the hole caused by the patent ductus arteriosus (pda) had closed in response to the medicine they gave him over the previous 24 hours. so, at least for now, there doesn't appear to be any reason for him to get transferred to a different facility for surgery. he also has a greatly reduced risk for a class IV "bleeder" ( our neonatologist's term for a brain hemmorage ). one of the side-effects of pda is that it sends five times more blood to the brain than is actually necessary, which in turn stresses the brain vessels. he's still at risk for a bleeder, but much less so.

speaking of brain hemmoraging, when our neonatologist was explaining the effects of pda, he took the opportunity to launch into a discussion of bleeders. it turns out there are four classes of them, with 'class one' being not visible with the naked eye and not typically associated with negative outcomes and 'class four' being visible through the scalp and often fatal. in what was one of the many conversations we've had over the past few days that can be quite disorienting, we found ourselves listening to him calmly tell us that he probably wouldn't even bother telling us about class one or two bleeders, as he'd end up driving us insane with that much detail.

there are many other physiological consequences of the ductus arteriosis closing , the most notable being that they can reduce the percentage of oxygen that he's getting via the ventilator. we normally breath air that has 20 percent or so of oxygen. for the past few days, eric has been getting anywhere from 30-60% oxygen. after the duct closed, they were able to move towards a schedule of letting him breathe ambient air with occasional enrichments of oxygen. also, they have been actively managing his blood pressure with dopamine and his blood sugar with insulin and they've stopped both of those treatments. later in the day, they also told me that they stopped giving him antibiotics to reduce the risk of infection. these are all stupendously wonderful signs that he's stabilizing and setting himself up for the long haul. of course, he'll still have bad days and downturns, but things are looking positive.

as donna, eric's nurse today, was giving me an update about the pda and how good things were looking she stopped and laughed, "you know - he's not a wimpy white boy!" she went on to explain that, when compared to other races, white male micro-preemies ( a technical designation for preemies that are born less than 26 weeks in gestational age and weigh less than 1 pound 11 ounces ) typically get more sick, have more bad days and have longer hospital stays. "i've been doing this for over 20 years and i don't think i've ever seen an explanation for it. but lil' eric ain't no wimpy white boy. and that should make you very happy."

indeed.

unfortunately, kris is still not progressing as quickly as she'd like and she's three days post delivery, which means perfectly natural post-partum emotions are beginning. a bad morning was made worse when the nurses told her they didn't want to even try to see if she could make it down to see eric, given her current condition. she's still at an increased risk for a seizure if she has too much sensory stimulation, so they want her to have another day of quiet rest.

her blood pressure is still dangerously elevated even after starting an additional blood pressure management medicine; her platelets has also been down throughout the day, while her liver function is elevated, all of which are trends in the wrong direction. it's nerve-wracking to anticipate each new lab result and continually discover that she's not only not stabilizing, but technically getting worse ( although thankfully she's not in any pain ); however, the doctor reassured us that she's not atypical for cases of severe preeclampsia such as she developed. he expects her to have another day or two of trending in the wrong direction, followed by a gradual normalization process. first her kidneys will start working more efficiently, followed by better liver function and finally her platelets will go back up. he said her kidneys are looking better, so we'll patiently wait for the others to follow. her doctor also gave us a little more information about the specifics of her case. about 10 percent of preeclampsia cases have similar etiologies and, as we discovered, if the baby isn't delivered immediately it will die and the mom will quite likely die. to highlight the point, as a consequence of the disease process, kris' placenta had become 30% calcified over a very short time ( possibly 24 hours ). had we waited even a short period of time to go to the ER, the placenta would have become completely calcified and eric would almost definately have died from a lack of oxygen. it's also more likely than not that an undiagnosed underlying condition will be found that is known to amplify the effects of the preeclampsia ( essentially "causing" the severe "10 percenter" cases ); so, after everything settles down, they will start testing her to see if they can find the root cause.

amidst all the disappointing lab results, kris is feeling better and making other important signs of progress. she's started to regularly produce milk with a breast pump, which is getting stored down in the nicu ( neonatal intensive care unit ) for when eric is stable enough to start feeding. she also had her first solid food today, after days of nothing but an IV and the occasional juice. she happily enjoyed what would have otherwise been a bland cheese sandwich. and she also had her catheter removed! if you've ever had a catheter, you'll understand why this made her very happy.

update: later in the evening kris finally got her first set of postive lab results and her blood pressure, while still high, seems to be gradually trending downward. her results are promising enough that they aren't going to pester her every few hours over the night to draw blood and it looks like she might have a realistic chance of seeing eric some time tommorrow.

the eric update: 48 hours!

time is something that i don't have a lot of, so i'd like to thank everyone who has commented and sent an email. i won't be able to respond, but please know that it really, really means a great deal. kris didn't progress much today and spent much of the day sliding in the wrong direction. she's out of life threatening danger, but everyone is hoping that things start to look better tommorrow. of course, she's not able to see eric, which is the hardest part for her to bear.

eric took an expected turn for the worse in the morning, but gained some ground over the remainder of the day. his liver is not working as well as it should so he's susceptible to jaundice. he was a little "jaundice yellow" this morning, but got more pinkish over time.

more significantly, eric has a "normal" condition known as patent ductus arteriosus (pda) , which is essentially a hole in the heart that needs to be closed. over the next few days, the doctors are trying to close the hole with medicines, but if it fails then he will need to get heart surgery. if they don't close the hole quickly, he has a much higher risk of brain hemmoraging, so we're obviously waiting anxiously to see if the medicine works.

since kris can't see eric yet, i'm taking pictures everyday and tranferring them to her ibook, so she can constantly see how he's doing and what he looks like. i've uploaded some of them to my flickr account so that friends and family [ and any others ] can stay abreast of his development. i hope to revamp parallax to keep a daily running journal of eric's development. i assume that this will mostly be of interest to close family and friends who are scattered around the world, but even if you don't know us, feel free to cheer along. every little bit of support helps.

kris enjoys flowers so please send them to:

kris salmi-snowdeal
c/o. st. mary's hospital
200 jefferson ave s.e.
rm #923
grand rapids, mi 49503

we've recieved flowers from "eastern floral and gift shop" ( 616.949.22000 ) so i know that they know how to get flowers to the hospital, but i'm sure other florists in the area can get a bouquet to her. even if you don't "know" kris, i'd be mighty obliged if you sent her flowers. she could really use the uplift. i can't stress this enough. if you have the slightest inclincation as to what kris is going through, please, please send her flowers. she can use any little but of support she can get. thanks.

pregnancy update: born on the fourth of july.

Eric C. Snowdeal IV.
born at 8:36 p.m. on july fourth 2004.
weight: 1 pound 7 ounces
length: 12 inches

sometimes things they don't turn out quite exactly how you planned.

72 hours ago there was not a single, solitary hint that kris and i would be thrust into the most emotionally wrenching experience that any parent-to-be could ever go through. what looked initially like a bad migraine turned far, far too quickly into a life threatening, early, undetectable and freakishly aggressive case of preeclampsia.

in 48 hours kris went from a healthy, happy mother-to-be, to a woman who was frighteningly close to having a stroke and seizure and whose kidneys and liver were failing. and so, at 7:00 p.m. on july fourth 2004, the impossibly hard choice was made to deliver eric at a time when the odds aren't in his favor to help kris survive.

kris is slowly recovering. her blood pressure is still far, far too high, but her kidneys and liver are slowly recovering. beautiful and fragil eric has a tough, tough path ahead of him. the statistics are not good for a baby born in the 24th and 6th day of gestation. the professionals would not give him a better than 65 percent chance of survival. but he's already shown himself to be a good fighter and i truly believe he's going to give it one hell of a shot.

no matter what your pursuasion, please think good thoughts for us.

we're going to need it.

the lizard and goliath

i long ago gave up on religious evangelism of browsers. i know this might strike some as a surprise, but it's been my experience that the intertia of the status quo is just too great. that is until recently. it doesn't surprise me a bit that mozilla and its offspring are at 200,000 downloads a day.

as craig says, you know the "damage has been done" when i can convert 3 familial laggards to firefox in one week. i'm not saying there's going to be a tipping point reached any time soon, but i do know that for the first time in, well, forever, the proverbial grandma's of the world are looking for alternatives.

flickr test

i'm testing flikr flickr after creating an account a few months ago and not doing much with it, until the fine flikr flickr folks recently released a mac uploader. [ s-ed: it's fliCkr, not flikr! ]

the good news is that it works great! the bad news is that i quickly chewed up my 10 meg free account upload allotment after uploading just 3 photos. so i guess, i'd either need to reduce the size of pictures, which is more work for me and therefore highly unlikely, or i need to payup.

amusingly, i can't see how to upgrade. i assume it involves money. i'm probably staring right at the upgrade button.

update: hmmm. i don't care for this template with tables. perhaps there's a way to change it?

update: why yes, there is a way to pick a new template. there are plenty of non-table default options. apparently it only picks a table-based style if you don't select a default template when you are first setting up your account.

poly vous, rendezvous?

well, it looks like i'm the last person to notice that apple has ported rendezvous to windows linux and java. choice is good. howl is still around for those that dislike the apsl.