Tag Archives: winnie the pooh

the eric update – day 73: no nasal cannula! all bottle feeds! nursing! infant cpr. loads of postcards!

September 15, 2004 snowdeal Leave a comment

woohoo! in the morning, eric’s nurse decided to see how well he’d do without any supplemental oxygen, so she removed his nasal cannula. he did fantastic and spent the entire day without free of any breathing support.

he’s breathing on his own and apparently racing for the exit door to the nicu!

an added bonus of being free of the nasal cannula is that he also doesn’t have any tape on his face, which means we can got an unobstructed view of face all day long. it’s crazy to thing that this is the first time in 73 days that we’ve seen his entire face for the whole day.

he seemed to do even better off the nasal cannula than on and didn’t have a single alarm all day long. he’s still desatting and threatens a brady or two during feeding times, which is related to his ongoing reflux issues, but otherwise, he showed no signs of needing any oxygen thoughout the day, which is all the more impressive because he was working extra hard today.

in addition to breathing on his own, eric has been taking all of his feeds by bottle for the past 36 hours. yes, you read that right – no tube feeding! i’m not sure i can find the words to adequately describe just how remarkable it is that he didn’t need any supplemental oxygen while taking bottle feeding after botttle feeding, considering all the extra energy that is required to bottle feed versus feeding via a tube. and even better – he’s really starting to get the hang of “regular” nursing. i know, it might be too much to absorb all at once, but he’s also nursing at least two times a day!

it can sometimes be difficult to understand why micropreemies start on bottles and then transition to nursing, but there really are valid reasons why the staff insist that eric is able get his nutrition from a bottle before attempting to nurse. but even while working to ensure that eric is able to bottle feed, the staff have been working hard with kris and eric find ways to start nursing on a regular basis as he gets stronger. kris has begun to use a nipple shield to great effect. in a week, eric has gone from latching for very short periods of time, to nursing for 20-25 minutes before being given a “comp” bottle to ensure that he’s getting enough milk to keep him gaining weight. it’s not abnormal for micropreemies to not fully get the hang of nursing before they reach 40 weeks, so it’s great news that he’s already avidly nursing at 36 weeks. it still takes a lot of energy on his part to nurse, which is why he’s limited to doing it twice a day, but i don’t see any issues that would prevent him from quickly moving to nursing much more often in the very near future.

since eric is breathing on his own, taking all of his feedings by a bottle ( and nursing ) and maintaining his body temperature, he’s very close to meeting all the “exit criteria” for busting out of the nicu! that means we need to make sure we learn infant cpr, since it’s not uncommon for micropreemies to stop breathing after they get home.

there were several sets of parents taking the infant cpr class today and they brought a bunch of replacement faces for the infant cpr dolls so that we could remove the face and hand the doll to the next family after we practiced cpr.

i’m not sure why you couldn’t just reuse a face after wiping it with an antiseptic wipe, but what do i know.

and yes, the postcards are still coming in! we’re still trying to figure out a way to put all the postcards in eric’s nursery; we’re open to suggestions. maybe tack them all on a corkboard?.

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the eric update – day 71: another transfusion. reduced reflux. reglan questions.

September 13, 2004 snowdeal Leave a comment

pooh decided to put one of the yellow “live strong” wristbands to good use after eric finished getting his latest transfusion. as regular readers are quite aware, we’ve known for awhile that he’s needed a transfusion, so it was nothing surprising and it will go a long ways towards giving eric the energy he needs to bust out of the nicu.

interestingly, they did a special blood test to see specifically how many new red bloods cells he was making and it seemed like he wsa doing a great job creating new ones, but just not making them quite fast enough to keep his hemoglobin levels from slowly dropping.

otherwise, eric had a quiet day. he gained a little weight, but most of that was due to the transfusion and fluid retension. his reflux problems were greatly reduced, presumably due to his new meds, but i’ve been given some reasonable information that reglan can often some with some nasty side effects. i specifically asked about it today and the nurse, who is very normally very responsive, sort-of dismissed the question and said that it’s just part of the normal nicu course of treatment for reflux and they never see any problems. we’ll definately be following up a bit more rigorously tommorrow to see what the thinking is, considering that his reflux is fairly mild ( although, it must be stressed that reflux in a micropreemie is nothing to play around with as it can quickly spiral into a host of other issues ).

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the eric update – day 56: eric’s second lunar birthday!

August 29, 2004 snowdeal Leave a comment

thankfully, eric’s alarms stopped alarming and everyone feels quite confident that the whole hullaballoo was just eric’s way of saying that he needed a little more help breathing that we thought. without the constant alarms, we were able to enjoy a relatively quiet 8 week birthday. eric’s friends all gathered around to wish him a very happy birthday. after eric was finished socializing, i had the chance to give him his very first “spit bath”! it took me a little longer than kris takes when she gives him a bath, but we eventually made it through the process relatively unscathed.

kris will claim that she doesn’t know how to take nice photos, but i think this series proves that she’s fibbing.

there’s a diaper under his head to help prevent water from soaking his bed. the nurses never put a diaper under his head when kris gave him a bath, so i believe they’re really thinking that i don’t know what i’m doing 🙂

he’s trying to subtly let me know that i should hurry it up so he can get back to sleeping.

one simply must have a sqeaky clean forehead on one’s second lunar birthday.

as i’m trying to give him a bath, he grabs my finger very tightly and won’t let me pull it away as he looks right at me as if to say, “enough, already!”

he keeps looking right at me as i clean the folds in his neck, as i think about how amazing that he actually has folds of skin on his neck, given how skinny he was just a few weeks ago.

you don’t want to leave any soap on a micropreemie’s head, so it’s mighty important to give him a good rinse.

it’s that easy to scrub his back with the intravenous lines and nasal cannula, but we make the best of the situation.

his head is drying under the towel as i’m scrubbing his legs and feet.

i’m picking him up as kris is changing his bedding and simultanously trying to take a picture. he’s a little bigger than the last time i held him like this on day 8 ( she took that picture too ).

kris and i have switched roles and now i’ve got the camera. he’s looking up at her as she’s telling him what a super job he did enduring my bath, which was twice as long as the those that she gives him.

she’s getting ready to put a “big boy” top on him to help keep him warm after the bath.

all done! baths are quite tiring, he almost immediately falls asleep and enjoys a lunar birthday nap.

clinically speaking, eric is doing very, very well, which is amusing to say considering all the alarms just yesterday. he’s tolerating his feeds as well as anyone could expect and the amount of undigested material that they are pulling out of his stomach between feeds is gradually diminishing. i think that it might be possible for him to be back on full feeds by the end of the week. he’s looking a little pallid due to a gradually decreasing number of red blood cells. so, despite the hope that he might have recently had his last transfusion, it looks like he might get one ot two more.

i haven’t been giving any updates on his weight because he hasn’t been adding on any weight. i discovered that being on the vent is a great way to add weight to a micropreemie, since it’s doing all the work and they can convert the extra energy towards gaining weight. since eric’s not on the vent, it’s not unusual for him to stop adding weight as quickly as he had been; however, i think they’ll look at adjusting his diet a bit in the coming days, since it’s not a good thing to not put on any weight for five whole days.

we always know that odin’s lunar birthday is approaching because it coincides with the full moon. well, technically, it’s a day after the full moon, but it looks full enough to me. i realized tonight that i hadn’t bothered to capture a photograph of the moon 4 weeks ago, and i couldn’t let it happen again.

it’s seemed like a big, bright birthday candle in sky as we took the dogs for their nightly walk.

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the eric update – day 54: his first “onesie”! and non-nutritive suckling!

August 27, 2004 snowdeal Leave a comment

eric’s intravenous line was moved to his foot, so we were able to dress him in his very own cloths today!

pooh and piglet came over to check out his new duds and compliment his on being healthy enough to ditch the hospital outfits. pooh is particularly amazed at how big eric is getting, while piglet is confused as to why the bears on eric’s shirt don’t look like pooh bears.

we received the shirt from beth, a friend of kris’ who also recently had a preemie in the nicu ( thanks! ). i believe the shirt can be found at target and is one of the few preemie specific outfits that they carry in the store. it’s a little hard to tell from the picture, but he still has plenty of room to grow in clothes, which is funny because they look so tiny compared to full-term baby outfits.

today, we reached a milestone that nicu veterans probably suspected was fast approaching when they saw the supersized paci. that’s right, the sometimes long and complicated process of getting a micropreemie to breastfeed has officially begun with what’s known as non-nutritive suckling. essentially, after kris has pumped ( charming phrase, no? ), she puts everything in place while eric gets a feeding through a tube. it’s the first step towards getting eric to realize that food doesn’t always come from a syringe; despite the fact that no feeding takes place, it has innumerable good side effect, from aiding in mama and baby bonding to helping kris to sustain her milk production. it’s not unusual after 6 or 8 weeks of pumping for milk production to begin to fall off if real breastfeeding hasn’t begun, so it’s time to start trying tactics to keep production up, since even if everything does optimally well, it could be weeks before eric is able to coordinate the complicated series of events that need to occur for proper breastfeeding.

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

July 23, 2004 snowdeal Leave a comment

it might be a little difficult to tell from the photo, but eric is a bright shape of red today. all those new red blood cells from the two transfusions yesterday are working their way through his system and doing their magic.

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.

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

July 18, 2004 snowdeal Leave a comment

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.

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the eric update – day 11: The Call on A Very Small Animal

July 15, 2004 snowdeal Leave a comment

the phone is ringing.

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

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

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

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

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

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

“o.k. he’s back on the vent?”

“you had to ‘bag’ him twice in the night?”

“his bloodwork indicates that he might have an infection?”

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

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

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

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

you watch in one particularly unsettling episode as your child turns gray as your wife and the nurse attempt to get him breathing again.

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

later. with no kangaroo care to be had and him spending much of the day sleeping on the vent, you find yourself studying your son’s head for quite some time and decide that today is a good day to begin teaching him about pooh.

you might not be able to touch him, but you can certainly still read him his first book.

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

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Tag Archives: winnie the pooh

the eric update – day 73: no nasal cannula! all bottle feeds! nursing! infant cpr. loads of postcards!

the eric update – day 71: another transfusion. reduced reflux. reglan questions.

the eric update – day 56: eric’s second lunar birthday!

the eric update – day 54: his first “onesie”! and non-nutritive suckling!

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

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

the eric update – day 11: The Call on A Very Small Animal

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