Tag Archives: odin

the eric update – day 94: waiting patiently. too much rice.

October 6, 2004 snowdeal Leave a comment

hey, today was pretty boring, in a good way. we just sat around waiting for tommorrow when we’ll hopefully have a much better idea as to when eric will get a the “o.k.” to go home. he didn’t have any alarms and seemed to continue to recover from his recent severe episodes of reflux.

i’m not sure we’ll get much sleep tonight as we ponder whether he’ll be coming home in a day or two or three or six or ten. and with not much by way of “excitement” ( in a good way ), i fill the time by taking macro shots of my son 🙂

kris has given him another bath and put cream in his hair and on his hair to help prevent a condition known as cradle cap. the cream makes it appear as if we’ve moussed his hair.

i guess it’s a good thing that the recent big news is that we’ve discovered that we’ve been adding too much rice to his feedings to control his reflux. yesterday we discovered that we were adding twice as much pulverized rice to his milk than he needed which is nice to know since the solid food in his diet is making him a little gassy. hopefully less rice will mean that he’ll have less gastrointestinal troubles.

for the record, if your adding pulverized rice to milk you only need 3/4 of teaspoon per 45 cc’s of milk. previously we were adding 1.5 teaspoons per 45 cc’s which is correct only if you’re using rice that isn’t pulverized.

you really do learn something new everyday in the nicu.

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the eric update – day 93: impending exit from the nicu?

October 5, 2004 snowdeal Leave a comment

we haven’t heard any concrete dates about when he might be ready to go home, but his neonatologist told us today that they are going to consult with surgeons and various specialists and come up with a plan on thursday morning! i don’t think he’ll be going home on thursday, but they said that we’ll have a much more concrete idea on thursday evening about what steps need to be taken in order for him to be discharged! if everything continues to improve, i think we’ll be busting out of the nicu, very, very soon. of course, we’re vigilent of falling victim to the the curse of the nicu and we’re careful to not ever mention that he might be coming home when we’re by his bedside. all the nurses are familiar with the curse and completely understand when we spell out h-o-m-e as we’re discussing the issue within earshot of odin .

it might have been a little bit of an overstatement to say that his reflux disappeared. every so often he lets us know that he’s still refluxing, even though he’s sending very little milk out his nose or mouth. despite the occasional desats, he’s still doing quite well – although his doctors admit that they don’t know exactly how to account for his speedy recovery when just last week it seemed that he was a good candidate for surgery.

the third green line from the top shows a running tally of his heartrate and on the left side of the screen you can see a substantial dip of over 60 beats per minute which occurs when milk has started go up into his esophagus stimulating nerves that slow his heartrate.

the blue line below the green line shows his blood oxygen saturation level and you can see that it also dipped ( known as a “desat” ) as a result of his slower heartrate. his blood oxygen saturation fell below slightly below 80% which is enough to make the alarm go off, but not enough to make him change skin color from pink to blue.

the desat alarm is not too bid a deal, but if his heartrate has continued to fall below 80 beats per minute then a different alarm would have sounded indicating that his heartrate had fallen dangerously low at which point he’d be having an episode known as bradycardia.

when pressed to give the odds, his doctors still think that he has a 30-40% chance of needing the nissen and g-tube surgeries, although obviously they’re getting confident enough to begin the discussions about when he might be able to come home. despite the fact that the odds are increasingly in favor of not performing the surgeries, the doctors indicated that they’ll probably send him home with his inguinal hernia unrepaired on the chance that he’ll eventually need the hiatal hernia, nissen and g-tube surgeries, thus diminishing the chance of needing to put him on the ventilator several different times ( in other words, they’ll hedge their bets and vent him once and perform whatever surgeries they need to perform all at one time ). also, despite being caffeine free, they said that they will probably send him home on a “home monitor”, since they’re not sure if his reflux will return after being sent home.

since it’s impossible to know if his heartrate is fluctuating and he’s desatting when he’s not showing obvious signs of refluxing, i have to admit that i feel a little more secure knowing that he might be coming home “wired”.

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the eric update – day 92: a third gregorian monthly birthday! reflux disappears!

October 4, 2004 snowdeal Leave a comment

it’s hard to believe that it’s not his first not his second but his third gregorian monthly birthday! we celebrated by spending a little quality time on my chest.

amazingly, he’s continuing to gain weight at a stupendous pace and is flying past the 5 pound mark and weighed in at 2,380 grams or about 5 pounds 4 ounces!

we didn’t have any cake on hand for his birthday, but we did have a little reglan which seems to be doing a good job of controlling his reflux. if fact, it’s doing such a great job that his doctor’s don’t think that he’s going to need surgery! that’s right, just four days ago it seemed inevitable that he’d need some sort of surgery, but today his doctors said that he’s doing so much better that he’ll likely not need any surgery afterall. oddly, they don’t even want to do another upper GI to see if the volume at which he starts to reflux has changed, since it seemed to be such an important number to everyone.

his progress has been truly remarkable, especially over the past couple of days. he’s pretty much completely stopped spitting up and blowing milk out his nose and, more importantly, his blood oxygen and heartrate levels have greatly stabilized. last week, even when he wasn’t spitting up, his heartrate would oscillate up and down, varying by as much as 40 beats per minute; the variations in his heartrate were caused by milk entering his esopagus and stimlulating his vagus nerve which helps to control how fast the heart is beating. in the past few days, these variations have greatly decreased and occasionally they’ll disappear entirely after an hour has passed after feeding.

so was it the reglan? the rice? the weight gains? the time taken to get acclimated to the new environment and recover the ROP surgery? who knows – maybe all the above. it’s hard to describe the feeling of having something like severe reflux just dispappear. poof. will it come back, if he gets stressed out after coming home? i guess we’ll find out soon, since there really aren’t too many reasons left for us to be in the nicu!

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

October 3, 2004 snowdeal Leave a comment

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.

laaater:

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.

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.

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.

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.

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.

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

October 2, 2004 snowdeal Leave a comment

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

laaaater:

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

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.

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.”

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

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.

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.

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.

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.

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.

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

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the eric update – day 89: a little nissen clarity. goodbye gassy barley, hello rice.

October 1, 2004 snowdeal Leave a comment

tonight we finally received some clarity from a nurse as to why the neonatologists and surgeons are so seriously considering eric to be a candidate for g-tube and nissen surgery, despite the fact that he seems to have stabilized and isn’t showing any obvious signs of abnormal discomfort during feedings. his upper GI series showed that he he begins to reflux at around 10-15 cc’s ( which isn’t a lot when you consider that his entire feeding is 45 cc’s ) and babies that begin to reflux at such low volumes get immediately put on the short list for being candidates for the surgery, since it’s often their experience that babies who begin to reflux at such low volumes eventually need the surgery and procrastinating just leads to esophageal damage.

so, it looks like we may need to balance the doctor’s recommendations against the growing number of negative opinions we’ve received from parents who have had children that have had the surgery. indeed, our nurse tonight who clarified why he was a candidate told us that she had three (!) children who had the surgery done and she wouldn’t recommend it unless it was absolutely, positively necessary and all other options had been exhausted.

speaking of exhausing all options, while the barley we’ve been adding to eric’s feedings has been working well to control his reflux by thickening the food and helping to keep it in his stomach, it seems to be giving his “gas”. and when he grunts trying to relieve himself of the gassy feeling, he pushes the milk out of his stomach and through his nose, which is pretty much defeating the purpose. so we decided to replace the barley with pulverized rice on the hopes that it would be a little more gentle on his digestive system. apparently there was some debate amongst the nurses as to whether or not the pulverized rice would simply dissolve in the milk; some of the nurses thought that barley should only be used for breastmilk and rice for formula, but others thought that was nonsense. it’s funny to see how much debate there can be over relatively simple things, little less the much bigger issues. in the end, the rice seemed to stay suspended in the breastmilk just as easily as the barley.

i think i’ve mentioned this before, but against the recommendation of the “back to sleep” advocates, we like to put eric on his stomach to sleep because he seems to enjoy it so much. micropreemies are at greater risk for “sudden infant death syndrome” when sleeping on their stomachs but we break the rules as long as we know that someone is always nearby to watch him closely.

when he’s on his stomach, it’s much easier to just what a head of hair he’s developing. it’s a little tough to tell from the picture but he’s got quite a “swirls” coming and maybe a few curls.

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the eric update – day 88: colorful crib! weight gain (finally)! gut tube?@!

September 30, 2004 snowdeal 1 Comment

since it looks like we may or may not be having an extended stay at the new nicu, we decided to spruce up eric’s crib with artwork made by eric’s cousinds that we brought over from the old nicu. the artwork is color coordinated with his mobile, no?

other than sprucing up his crib, it was a relatively quiet day in a good way. after days of not gaining much weight, he weighed in a 4 pounds 14 ounces or 2215 grams, which means if he keeps the reflux under control he should hit the five pound mark quite soon. perhaps on his lucky 13 week birthday? also, he’s been displaying signs of being very hungry after his feedings, so after some advocacy on my part, they increased his feedings from 40 cc’s to 45, which amounts to about a whole extra bottle of milk over the course of a day. it’s a tough balance, i think his doctors are wary of giving him too much milk at once since he’s refluxes so quickly, but it’s also not fun to watch him suck on his fist and smack his lips after each meal. everyone will be watching him to see if the increase in volume, exacerbates the effects of the reflux. indeed, after two and a half days of no alarms, he had an apnic episode in the evening, although it’s impossible to know to what degree the increase in feeding volume contributed to the alarm, if at all.

it’s still not clear if eric’s neonatologists believe that the hiatal hernia and nissen surgeries are inevitable. one can learn a lot by learning to decipher eric’s neonatologists’ medical notes and amongst the scribblings we can see that they are discussing the results at a radiological conference, which i take to mean that they’re gathering opinions. if you look at the notes you’ll see that they specifically refer to a GT/nissen procedure where the GT refers to a “gut tube”. with a gut tube you feed your child by popping off a cap on their abdomen and pouring milk directly in their stomach. as with the nissen surgery, it’s been my understanding that GTs were done as a last resort on kids with very obvious esophogeal damage to give the damaged tissue time to heal, but eric doesn’t display any signs of obvious damage. one nurse commented that they the GT was actually necessary to help the esophagus heal from the nissen surgery itself and not preexisting damage from reflux.

if they do decide that he needs the procedere, i think we’ll be getting at least a second opinion, because it sure seems like quite an invasive procedure given that eric seems to be doing so well with the barley feeds. but then again, perhaps they’re seeing something ominous in the upper GI scans? if so, they’re not saying anything directly to us. i’ll wait a day, or two or three before starting to press them to clarify what’s going on behind the scenes.

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Tag Archives: odin

the eric update – day 94: waiting patiently. too much rice.

the eric update – day 93: impending exit from the nicu?

the eric update – day 92: a third gregorian monthly birthday! reflux disappears!

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

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

the eric update – day 89: a little nissen clarity. goodbye gassy barley, hello rice.

the eric update – day 88: colorful crib! weight gain (finally)! gut tube?@!

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