Tag Archives: pacifier

the eric update – day 91: 13 week birthday! cafffeine free! visit from grandparents.

while flickr has been having issues, i’ve been getting behind on posting updates. so for now, i’ll just post the super abridged version and maybe i’ll get around to posting the longer version when time permits. you can see annotated photos from the day here.

  • you didn’t forget that it’s eric lucky 13 week birthday did you? of course not. 5 pounds and 13 weeks old! what’s next? of course, his 3rd gregorian monthly birthday, tommorrow.
  • his docs took him off caffeine today, which was helping him to remember to breathe, which means that they think he’s at risk for having anymore “apneas of prematurity” ( he could still have feeding related apnic episodes, however ). he didn’t have any alarms during the day which means that he probably won’t go home with a monitor that measures his heartrate and respiration. in other words, he’ll go home without any wires!
  • eric had another visit from his grandparents, which he enjoyed quite a bit.


day 91: another visit from grandma snowdeal!

another visit from grandma snowdeal! strange – her eyes aren’t red anymore 🙂 she demonstrates a superb ability to keep eric from refluxing so she’ll definitely be getting lots of holding time in the future.

day 91: another visit from grandpa eric!

and whenever you find grandma snowdeal, grandpa usually isn’t far behind. i’d use the old, eric watching eric watching eric line, but i used that one.

day 91: caffeine free!

on the day before his three month birthday, they decide to take him off his daily dose of caffeine, which is supposed to help him to remember to breath ( i never really understood why caffeine does what it does, but someday maybe i’ll look it up ). he didn’t have a single alarm after the sudden withdrawal ( i might have an alarm or two if somebody decided to suddenly take away my caffeine )! since he’s not having any alarms that are due to what’s know as “apnea of prematurity” ( as opposed to feeding-related apnic episodes ), they will probably decide to send him home without a monitor, which means he’ll go home without any wires!

the device in the picture is the home monitor that he would have gone home with. he’s been hooked up to it since he arrived, in addition to his other monitors, just to make sure it works well. it makes the most ear bursting sounds if he has an apnic episode, since it’s designed to alert you even if your on the other side of the house. when you’re sitting right next to it, you’d swear that your ears might start bleeding if it goes off for an extended period of time.

day 91: more intentional paci grasping

i never get tired of seeing how good he’s getting at keeping the supersized paci in his mouth all by himself.

he’s nearing his three month birthday old (actual age, technically, he’s still not supposed to be out the womb for two weeks), so i guess it makes sense that his motor skills and coordination are really beginning to take off.

day 91: hands

eric is clasping his hands, content after a bottle, while kris is resting her hand on his chest. you can see the ever present supersized paci in the background.

the eric update – day 90: five pounds! infant massage. another bath.

while flickr has been having issues, i’ve been getting behind on posting updates. so for now, i’ll just post the super abridged version and maybe i’ll get around to posting the longer version when time permits. you can see annotated photos from the day here.

  • 5 pounds (2280 grams)! woohoo! he’s as heavy as a bag of sugar! weight gain despite reflux is a good thing.
  • infant massage. we’ve been giving him more massages lately to help keep the gas moving along. infant massage has also been shown to have all sorts of other benefits, so it’s a good thing to do regardless ( indeed, the nurses at the old nicu gave eric regular massages, but they don’t seem to think it’s as important at the new nicu ).
  • yet another bath. you can’t have too many bath pictures can you? no, you can’t, especially when you’re giving a bath to a baby swaddled in cloth diapers. it’s cute. honest


day 90: five pounds!

5 pounds (2280 grams)! woohoo! he’s as heavy as a bag of sugar! weight gain despite reflux is a good thing.

day 90: another bath?!@ I.

hmmmm. can you tell he’s hungry? putting a web cloth diaper on him worked so well, that we decided to go all out and swaddle him completely, only unwrapping the parts that we needed to wash when we needed to. bath times go a lot smoother now.

day 90: another bath?!@ II.

yeah, he’s hungry, but he’s pacified temporarily by the supersized paci. i imagine that he’s looking at me thinking, “i’m going to remember this when i’m 16.”

day 90: another bath?!@ III.

time to be dried off by pops. my hands still look purty large next to his head.

day 90: infant massage. I.

we’ve been giving him more massages lately to help keep the gas moving along. infant massage has also been shown to have all sorts of other benefits, so it’s a good thing to do regardless ( indeed, the nurses at the old nicu gave eric regular massages, but they don’t seem to think it’s as important at the new nicu ).

we’re following the techniques described in Infant Massage: A Handbook for Loving Parents. i’m not an infant massage expert, but it seems like a good book.

day 90: infant massage. II.

little odin loves to have his feet massaged. being in the nicu is tough work and after a long day, he thinks it’s just grand it you spend a little extra time on his feet.

day 90: infant massage. III.

don’t forget to massage the arm and hand! he’s strong and likes to flex his muscles in an effort to impress the nurses.

day 90: infant massage. IV.

this move is called “paddling the waves” or something like that. but really it should be called “letting out the gas”. the rice makes him less gassy than the barley, but since he’s still not supposed to even be born for two more weeks, any solid stuff is rough on his gastrointestinal tract. so we spend extra time getting the gas out.

day 90: infant massage: V.

after the bath and massage, he’s more eager than ever to show us that he doesn’t need any help keeping the supersized paci in his mouth.

day 90: infant massage.  VI.

the final step of a good massage, of course, is getting to sleep in your most comfortable ‘jammies.

the eric update – day 87: waiting. a fistful of paci. barley feeds. mobile.

day 87:  a fistful of paci

after eric’s neonatologist’s consulted with pediatric surgeons this morning about his hiatal hernia and possible nissen surgeries, they’ve decided to hold off making any decisions to see if non-surgical management will help improve the reflux. while that’s great news, they’ve also decided to delay his inguinal hernia surgery so they can do it when and if they decide non-surgical methods are no lnoger working to control the reflux at which point they’ll do everything at once. since his neonatologist last night said that they had already had a hunch that he’d need the surgeries eventually, but that the pediatric surgeons didn’t like to do them before a baby weights 2,500 grams, i’m guessing that from their perspective we’re playing a waiting game – they wait for him to hit 2,500 grams, while letting us try less invasive treatments in hopes that something might work.

day 87:  barley feeding. I.

to that end, they finally gave orders to start supplementing his feedings with barley which helps to thicken them and will hopefully help to keep the food in his stomach where it belongs. remarkably, after we added the barley, he almost completely stopped spitting up his food! even more importantly his blood oxygen levels remained stable after eating, which means there’s less reflux in his esophagus stimulating the nerves that initiate the cascade of events that lead to an apnea. he’s still showing signs of reflux, such as pursing his lips and making chewing motions with his mouth, but he responded quite well to the barley and appears to be much more stable; in fact, he hasn’t had any alarms in over 24 hours! whooohoo!

day 87:  barley feeding. II.

sometimes after adding barley to the milk, micropreemies have a more difficult time drinking their bottle, but eric doesn’t seem to mind at all and drinks it as quickly as ever.

do the remarkable results of adding a little barley to his feedings mean that he won’t need surgery? it might and it might not, depending on the results of additional upper GI series ( we don’t have any sceduled yet ). it’s possible that the barley is helping to make eric more stable, while masking esophageal damage that will gradually result in feeding problems, which we certainly would like to avoid. but the barley might, just possibly might, help to stabilize eric enough to allow us to bring him home while he gains weight and we to see if he really does need surgery or if things will gradually get better as eric matures. eric’s neonatologist said that he would let him come home with an unrepaired inguinal hernia, as long as everything else was under control. i’m guessing that if we see two or three days of no alarms and no significant “desats” after feeding, we might be talking about going home sooner rather than later – not that we’ll ever tell him that, mind you.

day 87: yet another bath. I.

so, while we wait, wondering if little odin will be coming home in one week or six, life in the nicu hums along; today, eric actively grasped and held his paci for the first time ( motor coordination! ); we gave him a bath and got a great tip from a nurse about how draping eric in a wet cloth diaper will give him a “bundled” feeling, making baths a lot less stressful. micropreemies often will get agitated when they lack the boundaries that were familiar when they were in the womb. he loved it. if we removed the diaper he’d start to fuss, but as soon as draped him in the diaper, he calmed down quickly.

day 87: yet another bath. II.

he’s hungry, so he decides to suck on the web diaper that we’ve draped over him

day 87: developmental mobile

and we brought in a mobile that will supposedly encourage his development and vision. i don’t know if the claims are about stimulating development are true, but it seems like a good idea to have something familiar around when we finally get to go home.

the eric update – day 86: photo op! unexpected rop exam. upper GI. more surgery? longer stay?

day 86: photo op. I.

one of eric’s neonatologists from his old nicu stopped by today. she does research at the new nicu and after talking for a bit about how he was doing, she asked us if we’d allow her to have some pictures taken for a publication that they are putting together about the ROP research that she’s doing with eric’s opthamologist, dr. droste. of course, we were happy to have them take some pictures of little odin, on the condition that i could take a picture of them taking a picture of him.

day 86: photo op. II.

the man in the photos is dr. droste, who performed eric’s rop surgery and the woman in the lab coat is dr. poortenga. we like her a lot, since her quick actions helped to unstrangulate his strangulated hernia on day 35. had she not been successful eric would have been transferred to the new nicu much sooner for emergency surgery. she’s very nice and is one one of the many people that we were not able to get a picture with before leaving the old nicu, due to the quickness of the transfer – so it’s nice turn of events to finally get the picture afterall.

day 86: photo op. III.

during the photo-op, dr. droste took a moment to perform a follow up exam for his recent rop surgery. the good doctor still thinks eric looks “good”, but believes he has a 50% chance of needing further surgeries ( which is a higher estimate that he provided immediately after the surgery). he also clarified that kids with disease similar to eric have a 20% chance of developing more severe ROP, an 80% chance of ending up with 20/100 vision or better and a 60% chance of having 20/50 eyesight or better. so, there’s a good chance that he’ll need some sort of eyeglasses in the future, but that was probably going to happen anyway, since nearsightedness runs in the family.

day 86: upper GI exam. I.

after the photo-op, we went on what eric’s nurse called a “field trip” for his upper GI exam. and what a field trip is was! i think i might have left the mistaken impression that we were overly concerned about the radioactivity of the barium during the exam. i guess it was poor wording on my part, since kris and i have both had upper GIs and know that while it’s not a risky exam, we know that it’s not exactly a walk in the park either and all things being equal we’d have preferred to not have to have him wheeled to a far corner of a hospital, strapped to a board and rotated around while drinking a barium milkshake. but that’s just us being worry wart parents, because eric simply couldn’t have cared less. he took it all in stride and, amazingly, didn’t cry once. he just looked around and calmly took it all in. i guess in the world of a micropreemie, it’s just another day in the nicu.

day 86: upper GI exam. II.

the exam room is small, but it’s filled with lots of equipment, including a large x-ray machine.

day 86: upper GI exam. III.

little odin is quickly place on a board that will allow the technical staff to rotate him 180 degrees to get a variety of views of the radioactive barium flowing through his digestive tract during the upper GI test.

day 86: upper GI exam. IV.

eric is strapped to the board to prevent him from falling off during the procedure.

day 86: upper GI exam. V.

kris conforts eric right before the upper GI exam begins.

day 86: upper GI exam. VI.

during the exam, they carefully rotate him while feeding him radioactive barium to get front and side views of his gastrointestinal tract while he’s feeding.

day 86: upper GI exam. VII.

two techs, jeff and jeff, look at the x-ray movie as the food moves down his esophagus, into his stomach and enters his small intestine.

day 86: upper GI exam. VIII.

kris comforts eric after we believe the procedure is finished.

day 86: upper GI exam. IX.

eric’s hungry, since they skipped his 12 a.m. feeding before the procedure, so kris gives him a bottle which he gulps down.

day 86: upper GI exam. X.

d’oh! right after kris gave eric his bottle we discover that they want to get a few more images to help them clarify an abnormality that they found in the initial test.

day 86: upper GI exam. XI.

jeff looks on as he completes a second set of scans. he’s looking at the narrowing in eric’s esophagus, which – if you look carefully – you can see on the monitor. eventually he determines that the narrowing is simply a “tertiary contraction” which happens when his esophagus contracts in an uncoordinated manner that’s not uncommon in micropreemies and not – thankfully – a physical obstruction caused by abnormal vasculature.

day 86: upper GI exam. XII.

eric’s nurse gave him a “rubber ducky” for doing so well doing the procedure. after we return to the nicu, the duck looks on while eric sleeps since he’s very, very tired from such an exciting adventure.

unfortunately, they discovered that eric is refluxing almost as soon the milk hits his stomach, which is not good. the preliminary assessment is that he has an undiagnosed hiatal hernia, which happens when the stomach prolapses through the diaphragm. although it’s a relatively small hernia, it could still be the cause of why eric is refluxing so quickly. we don’t know much at this point and will have to wait until tommorrow when the pediatric surgeons get a chance to review the results of the upper GI. why would the pediatric surgeons be reviewing the upper GI? because the neonatologist’s hunch is that eric should have the hiatal hernia repaired and is also a candidate for a surgical procedure known as “nissen fundoplication” which strengthens the stomach valve. it’s hard to imagine that a little over a week ago, we were close to going home with eric and now it appears that we’ll need to make some quick decisions about an ever expanding list of surgical options.

day 86: upper GI exam. XIII.

while it seems reasonable to contemplate repairing the hiatal hernia, we were a bit surprised to hear that they also thought he might benefit from the nissen procedure, since my understanding is that it’s done as a last resort. perhaps they’d just like to do it if they already have to have him in the operating room. in any case, we’ll know more tomorrow after talking with the surgeons.

unfortunately, if he does need surgery, unlike the inguinal hernia surgery, they don’t often perform it on babies that weigh less than 2,500 grams, which means – under optimal conditions, we could be faced with another 10-20 days in the nicu, just waiting for him to gain enough weight for the surgery. and if he starts having problems gaining weight due to the reflux, then it could even longer.

temporarily abandoning the rollercoaster cliche’ in favor of the marathon metaphor – while things might look quite a bit different tomorrow after we talk with the pediatric surgeons, it’s hard not to feel like the finish line keeps moving farther and farther away.

the eric update – day 84: more recovery. impending hernia surgery? 12 week birthday!

day 84: ever so slowly recovering.

eric seems to be slowly getting better, due in part to his new meds to control his reflux. he’s almost completely stopped having milk coming out of his nose and mouth, although we can still see him pursing his lips and making a motion with his mouth that looks like he’s chewing; both actions are signs that he still has fluid coming up, but it’s a lot less forceful. thankfully, the number of alarms have also gone down and he’s gone from having 10 to 20 apnea alarms a day to just one!

he’s still showing signs of being overstimulated in his new environment. we expect him to return to “normal” in a day or two or three, but at the moment he’s still showing signs of being stressed. if you look close, you can see that his cheek looks “mottled” which is a subtle sign that he’s getting too much sensory stimulation.

so, even though everyone is watching eric closely for signs of an infection, it looks like things are returning to normal and with a little luck, he’ll be back to his old self, just in time for his hernia surgery. we’ve been told that he’ll definitely be having the surgery this week, but we won’t know on which day he’ll being having the surgery until the schedule is prepared on the prior day. in a way, i’m glad that we’ve had the chance to get a quick peek into how he recovers from surgery; while the hernia surgery is generally considered to be routine and relatively painless on the wee ones, it’s usually more disruptive than rop surgery, as he’ll be getting intubated and during the surgery, doctors will need to make two small incisions, which probably won’t feel too good after he wakes up.

day 84: supersized paci and goopy eyes

eric enjoys the supersized paci while he attempts to open his eyes which are “goopy” from an antibiotic ointment which is applied every 12 hours to prevent infection after his ROP surgery.

day 84: the nine o'clock "meanies"

it’s nine o’ clock which means that it’s time for the nurse to give him his meds, take some measurements and listen to his stomach and lungs with a stethascope. it’s a moment that captures just how closely they still monitor him and there’s a lot to be noticed in the pictre. the tape measure was used to measure his head circumference, length and belly width ( a bigger belly can be a sign that he’s getting a gut infection ). the red syringes in the upper left corner contain his meds to help control his reflux. the nurse is listening to his stomach to make sure it sounds like he’s digesting his food well. the sensors on his body are monitoring his heartrate, respiration and blood oxygen levels. and kris is keeping the pacifier in his mouth, which not only helps to keep him calm, but also prevents him from refluxing his food.

if you look closely you can see him eyeing his nurse warily.

day 84: eric's 12 week or third lunar birthday

with all the excitement, it’s almost easy to forget that it’s eric’s 12 week or third lunar birthday! it’s hard to believe how much has happened in the past 28 days and with any luck, we won’t have to celebrate too many more of these weekly birthdays in the nicu.

the eric update – day 78: saying goodbye. and hello. postcards?

since i have absolutely no free time, i’m going to try something new and only put a placeholder entry here. perhaps i’ll get a chance to put a more detailed account here later. or perhaps not. but for now, i’m just going to give the bullet points there are more important things to attend to.

i apologize to everyone who called yesterday who didn’t get a call back. obviously, cell phone time is short and i’m basically in “triage” mode and only returning emergency calls. after a whole bunch of voicemails it became apparent that there was some confusion about eric’s eye surgery. he was being transferred today ( monday ) and will have an assessment on tuesday. if he moves from being “prethreshold” to “threshold” then he’ll need surgery within 72 hours. the quick move was made because the expectation is that he’ll move quickly into threshold land and everyone wants to be prepared for that event. we don’t know exactly when he’ll have the surgery in the event that it’s required and i won’t have that answer until later tommorrow.

day 78: little feat

as eric gets close to transfer, the nurses get the proper paperwork in order. amidst the release forms i discovered an identification form that has his footprints that were inked on his first night in the nicu.

they sure were small. about as small as nickel.

day 78: leaving bed four

eric made great leaps and bounds while staying in “bed 4” in the nicu, which seemed like a perfect number since he’s eric “the fourth” born on the fourth of july.

we would later discover that he would be sitting in bed 4 at the new nicu, which makes us think that “4” just might be his lucky number.

day 78: reading the numbers

according to the rules that one must follow when tranferring a baby from one nicu to another, the nurses must corroborate that he is, in fact, who they think he is and read match the identification number on his nicu ID bracelet with the number on the transfer papers.

i’m foiling their best efforts to match the ID numbers by telling jokes and they’re laughing heartily.

day 78: saying goodbye to nurse nancy.

nurse nancy is superfantastic and she spent much of the day trying, unsuccessfully i might add, not to cry. eventually i was able to capture her with her “happy face” on.

nurse nancy was eric’s nurse for many of his “big steps” including being transferred to the isolette and the open, unheated bed and his first bottle feeding, so she’s very, very attached to eric.

day 78: saying goodbye to he, himself.

this is charles, “charlie” winslow – eric’s neonatologist. he’s the reason why eric is alive and words can’t really describe how highly we think of him.

he’s a nice guy, a great communicator and rides a bike to work.

day 78: nicu transport. I.

after the transport team arrives from the new nicu they quickly put eric in the transport “crash cart”. the whole process only takes a few minutes.

his “saint mary’s” nurses are standing around looking sad and i wish there was more time to say goodbye.

day 78: nicu transport. II.

little odin is resting comfortably in the crash cart, oblivious to the fact that he’s, ever so briefly, about to see the outside world for the first time.

day 78: nicu transport. III.

part of the transport team from the new nicu is talking with kris and nurse cathy b. the man on the left is the ambulance driver. the woman standing next to him is a neonatal nurse practitioner who is chatting with kris and nurse cathy b.

day 78: nicu transport. IV.

more people from the transport team. the man on the left is a respiratory specialist and the woman on the right is a registered nurse.

they’re amiable and do a great job making us feel relaxed. somehow, during the quick process of getting odin prepped for tranfer i find myself talking with the respiratory specialist about digital cameras. go figure.

day 78: nicu transport. V.

and they’re off!

little odin gets wheeled out of the nicu on his way to the elevator and the waiting ambulance.

day 78: at the new nicu. I.

we weren’t able to ride in the ambulance with odin, so we arrived shortly after he was put in his new bed.

he seems to be welcoming us with a hand wave as if to introduce us to his new surrounds.

day 78: at the new nicu. II.

of course it’s not long before he’s resting comfortably on mama’s chest.

day 78: at the new nicu. III.

in one of the many differences between the two nicus, eric gets weighed before and after nursing in an effort to more accurately determine how much milk he’s ingested. in theory, the practice should help us to make sure that he’s received enough nutrition, but the scale claims that eric has lost two grams after breastfeeding. so much for accuracy.

oh. i guess i should note that eric is gaining weight so fast that it’s almost starting to freak me out. he tipped the scales at at 4 pounds 9 ounces or about 2075 grams. that’s right – he gained 2 ounces over the last 24 hours and over 5 ounces in the past 48. while everyone is suitably impressed, it’s not good to put that much weight on that quickly, so my guess is that they might reduce the amount of fortifier in his breastmilk soon.

day 78: at the new nicu. IV.

eric’ new bed is stainless steel and the temperature of nicu is a lot cooler than we’re used to which help to add to a sterile, antiseptic feeling.
the new nicu is quite different from the old in many, many ways. while “saints” was small, at 15 beds, little odin’s new home is enormous, with over 100 beds. it also gets a lot of sick babies that are transferred from many different places so it has a much different feel. it’s odd to be thrust into the new environment, trying to adjust quickly to the new rules, while walking around and seeing so many babies with shaved heads and drainage bags, presumably alleviating pressure after brain surgery. the nicu is cooler, literally and figuratively and is much more antiseptically clinical. in a weird way, it also feels like we’ve transferred from the ‘jewel in the rough’, small, personal liberal arts school to the large, top tier, big 10 school. the veneer looks more impressive, but it also seems like it could be quite easy to get lost in the shuffle. time will tell.

uh. so, it looks like i’m incapable of writing a ‘placeholder’ entry.

day 78: at the new nicu. V.

despite all the changes, eric continues to chug his botttle feedings while continuing to look very relaxed.

because the new nicu is kept at a cooler temperature, it’s more important to keep a knit cap on his head and cover him in blankets.

many people have asked me about where they can send postcards. it seems that little odin’s quick transfer has revealed all the procrastinators in the crowd 🙂 for now, if you’ve sent a card that’s already in the mail, i’m sure the staff at saint mary’s will keep it until i can find time to come and pick it up ( in fact, i think they were happy to hear that i’d be back to pick up postcards which would give them an opportunity to hear about eric’s progress ). i don’t know the new nicu’s policy , so i can’t say whether or not people will be able to send stuff there ( i’ll find out more today or tommorrow ). i’m not ready to post my home address on the internet ( i’m not really sure why, since it’s quite easy to sleuth it on the the internet. ), but i’ll probably come up with a solution sooner rather than later. as always, thanks so much to everyone who has sent us or plans to send us a card ( or more! ).

the endless kindness of strangers ( and friends and family, of course ) never ceases to amaze me.

the eric update – day 75: no clarity on the plummeting platelets. expensive babysitters. hearing good!

day 75:  post feeding paci

there’s not too much new to report today on the plummeting platelet and elevated bilirubin issues. his direct bilirubin dropped quickly back to its previous mildly elevated levels which is being interpreted to mean that the spike was due to the blood transfusion. so that’s good news. however, his platelet count dropped another 10K and his hanging around 60K. the good news is that it’s not dropping anymore. the bad news is that it’s not increasing and there’s no clear evidence yet as to what might have caused the drop. if you squint at the graph of his platelet counts over the past couple of weeks, you can maybe see a decline that’s tough to discern through the noise which finally becomes apparent when it drops quickly below 100K. a gradual decline would fit into the theory that posits that the bone marrow was gradually shifting production away from platelets and towards red blood cells before his transfusion to help satisfy the demand for RBCs. thankfully, he’s not presenting with any other signs of a viral infection, which you might remember could also be causing the abnormal lab results.

day 75: hands crossed while sleeping on stomach

eric really likes sleeping on his stomach and the nurses like to put him there, which might come as a shock to those who are familiar with the “back to sleep” campaign which discourages placing kids on their stomachs in an effort to reduce the chance of sudden infant death syndrome.

while he needs to be watched extra closely while lying on his stomach ( all the more so because micropreemies have an increased chance of SIDS ), the nurses all think it’s silliness to take things to an extreme and never put a baby on their stomach to sleep. amongst other things, sleeping on the stomach helps to strengthen important neck muscles that don’t get stronger if a baby is left on his back or sides all the time. but that is easy for them to say when they have the advantage of being notified by alarm when he stops breathing. unlike most parents.

kris and i actually spent very little time in the nicu ( and by very little, i mean less than 5 hours 🙂 ), which felt quite strange. the nurses have become much more assertive with their recommendations that we take advantage of the world’s most expensive babysitters while we still can and finish up all the unfinished business that needs to get done before little odin comes home.

oh. i almost keep forgetting to mention that odin passed his hearing test with flying colors!