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. ]
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.
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.
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!).
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.
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.
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.
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.
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.
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.
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.
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.
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.
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 iv10.02.04 update:
p.o. box 1514
grand rapids, mi 49501-1514
eric c. snowdeal ivas an added bonus, people can send stuff to eric at the new address after he's released from the nicu. woohoo!
p.o. box 1514
grand rapids, mi 49501-1514
don't use this address anymore! if you send postcards here, we won't get them :-)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.eric c. snowdeal IV
NICU - 8th floor
c/o. st. mary's hospital
200 jefferson ave s.e.
grand rapids, mi 49503
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.
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.
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".
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.
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.
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.
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.
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.
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 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