Tag Archives: feeding

the eric update – day 52: still more postcards and gifts! and progress, micropreemie style.

day 52: hand on head with feeding tube. I.

today was another quiet day of making slow, steady progress. he’s increased his breastmilk feedings to 8 cc’s every two hours and appears to be continuing to tolerate them well. they will usually pull out up to 3 cc’s of undigested food before each feeding, but that amount doesn’t seem to be increasing as they up his total feedings, which is a good sign that his digestive system isn’t slowling down.

if he continues to tolerate the “bolus” feedings ( where they give him the breastmilk all at once, instead of a “continuous feed” where the milk is pumped in at a constant rate ), then they’ll keep adding a cc to the amount that they’re giving him every two hours. so tommorrow, i’d expect him to be on 9 cc’s every two hours. and given his wieght, he’d need to be getting about 20 cc’s every two hours to be on full feeds again ( meaning no additional parenteral nutrition from the IV ), which means he could have an intravenous line in for a ten days to perhaps two weeks. he’s having a little bit of trouble keeping a good IV and i think they might be running out of nice big veins; i suspect that sooner rather than later they might be forced to put the line in less attractive locations like his scalp.

day 52: hand on head with feeding tube. II.

we got some more postcards! and we’ve received lots and lots of gifts lately, from friends family and strangers, and i just haven’t had time to properly acknowledge them. i’m going to put pictures of everything up as soon as i get the free time, but in the mean time, please know that we’ve enjoyed everything we’ve received and are continually amazed at the new suprises that the mail seems to bring each day.

the eric update – day 51: saying goodbye to cpap. rumors of an isolette.

day 51: all nasal cannula, all the time

woohoo! he’s on all nasal cannula, all the time! and not alarming at all. o.k. he still has the occasional apnea or brady, but they’re all for reasons that don’t particularly concern the staff. he’s on 7 cc’s of breastmilk every two hours and tolerating it well – not great, but not bad either. Every so often they’ll pull a few cc’s of undigested milk out of his stomach before they introduce the new milk; if the amount that they pull out increases then they’ll slow down his feedings.

so, day 51 was a very, very good day. and there are whispers among the staff that, if he keeps up keeping up, then he’ll graduate to an isolette and ditch his radiant warming bed! amazing!

day 51: feet on palm

sometimes a simple shot can put into perspective just how small he still is.

day 51: hand grasping feeding tube

he often likes to grasp his feeding tube after milk has been introduced, which is sweet and sad at the same time.

the eric update – day 49: eric’s 7 week birthday!

day 49: 7 week birthday kangaroo care

let’s all give odin a little birthday cheer, as it’s his 7 week birthday today! he gained a few grams and is now solidly in the 3 pound category at 3 pounds and 3.5 ounces. he also added a half a centimeter and is 38.7 centimeters or 15.25 inches, which means he’s added 3.25 inches to his length in the past seven weeks! woohoo! he’s rapidly being weened from the cpap and is on 6 hours of nasal cannula and 4 hours of cpap. since he’s doing so well breathing on his own, i suspect that within the next few days they’ll see if eric can go 25 hours on the nasal cannula. despite having to do more breathing on his own than ever, he’s throwing very few alarms; he only seems to alarm when the nurses are doing their “meanies” or when he’s put his head in a position that’s not conducive to breathing. his breastmilk feeds stayed the same as yesterday, as they’re pulling up more undigested food than they’d like to see, so they’re going to back off a bit on increasing the amount of milk that he’s receiving. you might remember that anytime digestion slows and milk starts hanging around, there’s an increased risk for a gut infection, so they’re just going to take things slow.

day 49: ouch!

the nasal cannula needs to be taped on his face to reduce the chance that he’ll pull it out and the process of repeatedly removing the tape when he goes back on cpap has made his skin a little raw. tonight, he even has a tiny bit of flesh pull away, which he obviously didn’t care for at all; nurse peggy put little pieces of what’s known as comfeel on his face to prevent it from happening again because open, irritated sores are not a good thing when you’re enduring a prolonged stay in the nicu.

day 49: pacified. I.

eric’s getting much better at coordinating his sucking and breathing; a mere week ago, he’d alarm when a pacifier was in his mouth for more than 15 or 20 seconds, but now he can keep the pacifier in as long as he’d like. since he’s doing so well, nurse peggy said that it’s a good time to introduce a pacifier during his breastmilk feedings so he can begin to associate sucking with feeling of food in his stomach. this is but the first step in a long process of getting his used to having to coordinate the sucking, swallowing and breathing that must occur for real breastfeeding, so it’s a big step.

day 49: pacified. II.

sometimes he has trouble keeping the pacifier in his mouth with the tubes in the way, so peggy has “illegally modified” the paci by notching it so that the tubes can stay where they need to stay and he can more easily keep it in his mouth. nurse peggy is thoughtful like that.

day 49: longhair

eric’s hair is getting so long that it’s growing over his ears!

the eric update – day 48: gifts! last transfusion? no alarms (except pops induced)!

day 48: loose cannula

there’s no doubt about it. we’re back to the ho-hum days that are mostly filled with kangaroo care.

eric is being transitioned from the cpap to the nasal cannula much more quickly than previous attempts. today, they altered his schedule to alternate between 4 hours of cpap and 4 hours of the cannula. amazingly, he only had 2 brady’s (bradycardia, or slowing of his heart rate ), the entire day and both were while he was on my chest, which, of course led to endless jokes from kris and nurse jan. both brady’s were due to his head slowly getting into a position that made it difficult for eric to breath. of course, whenever eric’s on my chest he seems to enjoy putting his head in the position that will lead to a brady. i imagine that he thinks it’s a fun game to have me move his head in the correct position, only to move it slowly and imperceptibly back to the wrong one. over and over we play the game and sometimes he wins and has a brady.

eric also likes to tug on his nasal cannula, pulling the prongs out of his nose. if he weren’t doing so well breathing on his own, we’d know when the prongs were out of his nose, as his blood oxygen levels would start to decrease. but since he is breathing so well, we don’t see the “desat” and only later discover that his prongs have been out for as long as 10 or 15 minutes at a time, which is yet another sign that he’s getting stronger.

day 48: eric meets babo the ugly doll

some longtime friends, matt and erin, who we haven’t seen in awhile came into town this weekend bearing gifts! eric was happy to receive his new ugly doll, even if the nurses were all a little perplexed as to what an ugly doll was and why on earth anyone would want to buy one. but we don’t care what they think, since eric and the ugly doll got along quite famously and found themselves in long, heated discussion about which of them was taller.

day 48: eric and babo discuss who's longer

clearly, the ugly doll has no grounds for his assertion that he is, in fact taller than eric.

day 48: eric's new handcrafted knit cap

in addition to giving him the ugly doll, they also gave him a cap that erin knitted with her very own hands! the nurses were all very impressed that the cap was knit by a nicu rookie, since it can be tough to make the cap snug, but not too snug, and it should also be quite stretchy in all directions to accomodate the various forms that his very malleable head might take on from day to day. there’s a bit bucket of “discards” in the waiting room outside the nicu that have been knitted by volunteers but that haven’t passed the quality control inspection from the nicu staff, but eric’s cap won’t be in it, because it’s about as perfect as you could want it to be. thanks!

day 48: diaper change from pops. I.

there’s nothing special about the fact that i’m changing eric’s diaper, but i couldn’t remember ever providing photographic evidence to dispute any lingering suspicions that i might be trying to shirk diaper changing duties.

day 48: diaper change from pops. II.

it’s a bit more tricky to change his diaper these days, since it is seemingly impossible to not get the velcro on the diaper stuck on the shirt before you get all the cords and lines out of the way.

day 48: diaper change from pops. III.

as i change his diaper, it strikes me that as odd to think that some day we’ll actually change his diaper and not have to worry about pulling out IV or feeding lines or detaching sensors.

day 48: diaper change from pops. IV.

it occured to me that i’ve only casually mentioned his intravenous feeding and having discussed at greater length a very important element of how well eric is doing.

day 48: total parenteral nutrition.

so it’s time for a short course in parenteral nutrition, where parenteral refers to food that enters the body through a blood vessel. in what is known as total parenteral nutrition, all of the essentials ( carbohydrates, protein, fat, vitamins and minerals ) are delivered directly through an IV line in one of eric’s veins.

day 48: lipids

despite all the active research that has gone into parenteral nutrition and fact that it’s probably one of the greatest reasons that eric has been able to keep growing despite suffering from pneumonia, i can’t help but feel that the bag of fluids look suspiciously like gatorade and the the syringe surely must be filled with lard and not some state of the art blend of short chain lipids as they claim.

day 48: another feeding

day 48: eric's 16th transfusion

eric received three more transfusions today which brings him to a grand total of 17 thus far. he needed the transfusions because he still has a hard time making new blood as quickly as he breaks it down and they’re talking a lot of samples out to keep close track his immune blood counts while he has pneumonia. we were told today by nurse jan that, if things went as they expected, today’s transfusions would be the last he’s likely to receive during his stay in the nicu!

day 48: checking his lungs

eric’s lungs are sounding so good that it’s not really clear whether they’d still would say that he has pneumonia. in other words, he might just be fully recovered!

day 48: pooh borrows the cap

it’s interesting to note that while we were free to explore giving “directed donations” ( where we give the blood that eric would receive ), we didn’t because it apparently takes so long to process and screen the donations that they often get the donations back after they are no longer needed. also, the screening criteria for neonatal donations is so rigorous ( i.e. can’t have any antibodies for many common ailments ) that it’s often difficult for the parents to pass the screening test. so while the staff would never prevent us from giving blood, they’ve always strongly hinted that it’s easier, safer and faster to just get transfusion from their trusted pool of special neonatal donors.

day 48: ending the day with a little 'roo

because they have to monitor his blood pressure and other vitals closely during the transfusion, there’s no kangaroo care to be had during the process. of course, kris wasn’t going to let let three transfusions get in the way of lots of kangaroo care, so she simply had to time the sessions differently than normal. speaking of timing, while you might think that we can just waltz into the nicu and do the ‘roo, in addition to having to work around the transfusions, we also have to be aware of the nurses rounds which occur every two hours. and it’s also nice to get the kangaroo care in while he’s on the nasal cannula as the cpap mask can have a hard maintaining a good fit while he’s doing the ‘roo. so there’s quite a few “knowns” that we have to deal with in addition to the usual array of “unknowns”, such as getting kicked out abruptly in the evening, just after kris had settled in with eric, to prepare for two new admits.

the eric update – day 43: readin’, feedin’ and nicu noise.

day 43: creased palm

another day of quiet recovery, which is a good thing these days. slightly frustratingly, we still haven’t heard the results from the echocardiogram which will tell us if his patent ductus artierosis has closed, but his blood gasses are so good that i think everyone is assuming that it’s closed. also, they are apparently having trouble determining what the bug was that showed up in one of his blood samples and haven’t been able to find any more of it, so it’s likely that we’ll never know for now if it was contamination or is simply lurking in the background at undetectable levels while he’s on the antiobiotic regime. or maybe it’s gone for good.

day 43: feeding again!

they started eric’s breastmilk feedings again, which means that they are getting more confident that he’s recovering from his recent “troubles”.

technically, they aren’t really feedings as they are giving him such a small amount – only 1 cc every 3 hours, but it’s a start. rather than sending the food directly to his intestines via an “o.j.” ( oral to jejunum ) tube, they’ve decided to see if he’s can tolerate sending the milk directly to his stomach via his “o.g.” ( oral to gut ) tube. this is another small sign that they believe he’s getting stronger, despite his pneumonia.

day 43: ear clasp

the nicu is packed these days and when it gets packed it gets noisy. it’s a small nicu with only 15 beds, but it’s a small space and can get quite crowded when all the beds are filled, if all the babies have visitors. there’s and ebb and flow to visitors and during peak hours it the constant din of conversation and bells ringing can make it sound like a surreal cocktail party.

if you’re paying attention when it’s noisy, you’ll notice eric sending little signs that things are getting too loud, such as grasping his ear tightly in an attempt to block out the sound. subtle signal, no?

day 43: jonathan livingston seagull. I.

kris finished reading eric jonathan livingston seagull. he liked it a lot.

“poor fletch. don’t believe what your eyes are telling you. all they show is limitation. look with your understanding, find out what you already know, and you’ll see the way to fly.”

day 43: jonathan livingston seagull. II.

the eric update – day 20: full feeder!

day 20: full feeder!

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

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

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

day 20: snug as a bug

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

day 20: beating the wrap

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

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

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

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

medical record II

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

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

hitting the books

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

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

day 6: first feeding II

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

day 6: first feeding III

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