Tag Archives: fingergrab

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

day 89: YAFG

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.

day 89: rice feeding

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.

day 89: swirls and curls

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.

the eric update – day 80: ROP surgery

day 80: rop surgery. I.

little odin is relaxing before his ROP surgery. he’s had an intravenous line inserted into his arm which will allow his caregivers to give him fluids and the drugs which will put him into a state known as “conscious sedation”.

day 80: rop surgery. II.

nurse maureen is applying the drops that will dilate his pupils. while he tolerates the first application of the drops quite well, he lets everyone know after the third round of drops that he’s had enough.

day 80: rop surgery. III.

it’s 4 p.m. eastern time u.s.a. which means that it’s time for him to get rolled down the hall to the surgical room.

day 80: rop surgery. IV.

they’re prepping him for surgery by simultaneously removing his clothes, attaching a blood pressure cuff and injecting him with ketamine and versed which are the drugs that will hopefully keep him calm during the procedure.

day 80: rop surgery. V.

while it’s nice that the ketamine and versed allow him to have the procedure without being “intubated” and put on a ventilator, he’ll be so relaxed that he’ll forget to breath, so they’re watching his vitals closely. they warn me that he’ll have a few “deep” apneas ( forgetting to breath ) and they’ll have to revive him via a “bag” ventilator.

day 80: rop surgery. VI.

in case you were wondering, they do in fact keep all the laser equipment in a craftsman toolbox.

day 80: rop surgery. VII.

the drugs are doing their thing and he’s falling fast, fast asleep. i can’t help but wonder how many micropreemies fall fast asleep and never wake up.

day 80: rop surgery. IX.

yes. when you’re waiting around for the opthamologist to finish a phone call, you might find yourself passing the time with the nurses by placing “laser goggles” on your son while he’s sedated.

hey – you find levity where you can, trust me.

soon after this picture was shot, they started the procedure and kicked me out. much to my surprise, the doctor called me back in before he was finished so i could watch the final “burns”.

he told me several times that he had never, ever invited anyone in to watch him work so i think it was quite a privilege. i didn’t get any pictures because i had to wear “laser goggles”, but it was fascinating to watch him work. years ago i used to do delicate surgical work on fruit fry larvae ( maggots!) under a microscope, so i have an appreciation for how tight the “tolerances” can be and i was grateful that dr. droste broke his personal rule and allowed me to watch him work.

day 80: rop surgery. X.

as well as anyone can tell, eric made it through the ROP surgery relatively well. he had a few deep, apneas which is a known side effect of the drugs given to him to induce conscious sedation. they warned us ahead of time, but you never get used to seeing your son turn a deep color blue as you dig your fingers into wall while they seconds tick by. i’d like to say that he’ll never have to have ROP surgery again and that he’ll forever escape any permanent damage, but we won’t have any good answers those questions for about a week.

i waited until two hours post-op to snap the picture because i think it might have been a bit too much to bear for people to see just how puffy his eyes were immediately after the procedure. he also had a severe bout of apnea at about an hour post-op so i wanted to give him plenty of time to recover after turning a deep blue color. in this picture, he’s bright red and quite flushed, which is a side effect of the ketamine.

the doctor had to make about 1,500 “burns” in each eye, but he admonished me to not focus ( no pun intended ) on the absolute number of burns, but rather to note the overall “take rate” which indicates how many of the burns were effective. he likes to have a take rate above 90% and unfortunately, he said that eric was more “challenging” than he had anticipated and thought that he had a take rate closer to 80%. the lower take rate was due to the fact that eric’s lenses are cloudy because of a normal developmental process that should resolve itself in a few weeks; the cloudiness makes it difficult for the laser to make effective burns. he was able to get the take rate that he got only after turning up the power of the laser, but he can only turn the power up so far before risking collateral retinal damage.

day 80: rop surgery. XI.

he noted that the disease had progressed since even yesterday and the plus disease ( the really dangerous part ) was a little more moderate that he liked to see and that there was still a 30% chance that he’d need additional surgery. but he didn’t think eric would have any problems recovering quickly and said the he could have the hernia surgery tommorrow for all he cared ( each time he talks with us, he changes his story about how long it’ll take to recover, so i’m guessing he’s doing his version of managing our expectations ). so it looks like we’ll be moving quickly on to learning all about hernia surgery and back on schedule for a release.

many, many thanks to everyone who showed their support in whatever way made sense to them. rop surgery is relatively routine as far as nicu surgeries go, but new intravenous lines, dilation drops, “conscious sedation” drugs and high-powered lasers all provide many opportunities for things to go wrong. certainly versed is nothing to fool around with and having used ketamine in the past to put rats under before i removed their hearts ( don’t ask ) i know how, er, challenging it can be to dose correctly. small changes in body fat and metabolism can radically alter how long it lasts and we’d often have rats waking up in the middle of the operation. in fact, the doctor implied how difficult it is to dose accurately by stating that he gets done when the kids starts to move. in any case, it means a lot for us to see so many people in his cheering section.

in the photo, it’s about 4 hours post-op and he’s just started to stir as the drugs wear off. of course, mama is close by, ready to console him.

the eric update – day 79: ROP, apparently very, very real.

day 79: nestled in his blanket

due to the facts that the new nicu is a little cooler than the old one and eric doesn’t have that much baby fat, little odin needs a lot of help keeping warm, so we decided to bring in a blanket that he received as a baby shower gift. it’s quite big, but it does a great job of keeping his temperature at acceptable levels. but of course, how well he maintained his temperature was the least of our concerns today.

day 79: ROP assessment.  I.

right before his ROP assessment, kris talked to him and explained what was about to happen.

it’s hard to tell in the photo, but the opthamologist had called ahead and they’ve put drops in his eyes which dilate his pupils and make him very sensitive to light. defying expectations, he didn’t seem too bothered by the drops.

day79: ROP assessment. II.

soon after his quality time with mama – his opthamologist, dr. droste, examined his eyes by placing a magnifying glass over each eye and looking into them. although we held out a small amount of hope that his condition was apparent, but not real, the good doctor concluded after a few minutes that the disease was progressing quite quickly and he’d need surgery soon to prevent complications such as blindness. eric now has stage 3 ROP with plus disease in all “twelve hours” of zone 2 in both eyes. my understanding is that the severity of the “plus disease” is necessitating the fast action. plain vanilla stage 3 ROP doesn’t always require immediate surgery, but when the blood vessels become engorged or abnormally dilated it’s best to act quickly to prevent permanent damage.

tomorrow, the doctor will put a laser on his head and tap a button on the floor which will ablate ( or in opthamologist lingo, “burn” ) over 1,200 overgrown and abnormally tortuous blood vessels in each of his retinas. amazingly, the whole process is expected to take about an hour. despite the advanced stage of the disease, the doctor thought that eric had a good chance of escaping any permanent damage.

day 79: ROP assessment. III.

perhaps due to the lingering effects of the drops that dilate his pupils, eric is convering his eyes and looking like he’s pondering his new predicament, as he musters the energy to cleanly clear his latest hurdle.

in an oddly calming tone, the opthamologist said that they needed to do the surgery soon because even in just a few days they’d be “playing catch up”, which is certainly not something you want to be doing when the stakes are eyesight. it’s interesting to note that stevie wonder was born premature and went blind from the same disease, but much progress has been made in how to treat the disease since stevie lost his sight.

the good news is that they caught the condition so quickly. although his opthamologist said he had seen similar cases where the disease progressed so quickly, he professed that, “it didn’t happen very often.” and the really good news is that there must have been a miscommunication the other day because he expects eric to recover quickly and the ROP surgery shouldn’t significantly delay his release date! there’s a good chance that he’ll need additional surgeries, but he doesn’t need to stay in the hospital for monitoring.

if everything goes as planned, after a few days of recovery from the eye surgery, they are going to take advantage of the fact that he’s already where he needs to be and schedule surgery for his hernia. hernia surgery is relatively routine ( although i know one reader in particular who could speak at length at how things can get un-routine pretty quickly ) and it also is not expected to significantly delay his release. so, if we can make it though a surgery or two unscathed, we’ll be back on track for an early release, if not quite as early as we originally planned.

if you’re so inclined, think good thoughts or say a prayer for us around wednesday at 4 p.m. (eastern time, u.s.a.), as we hope that dr. droste hasn’t decided to have one too many cups of coffee.

the eric update – day 69: footie jammies! live strong! pulmicort?

day 69: cuddle time. I.

today was the kind of day where the big news was that eric wore big boy clothes with footies! we got the outfit from a friend of kris’ ( hi beth! ) who gave us a bunch of preemie clothes that have come in mighty handy.

while he’s been able to wear open-footed street clothes for a few weeks, the staff wanted to wait until he was even more stable before we bundled him in footie wear. i thought maybe he wouldn’t like having his feet covered, but he didn’t seem to mind it at all.

day 69: cuddle time. II.

you may have noticed that kris is wearing a yellow “live strong” band from the lance armestrong foundation.

our friends, adam and johanna ( yes, the same adam and johanna who seem to be travelling around the country and sending odin postcards. thanks! ), sent us almost too many bands to count because they thought the “live strong” motto was perfect for little odin. we think so too. we got the bands the other day and i was holding off taking a picture until i could properly “set up” a shot with all the bands surrounding eric, but kris foiled my evil plan.

at the end of the day, eric’s neonatal nurse practitioner told us that they were thinking of giving eric pulmicort to help give him a boost off his oxygen. we haven’t had any time to research the risks and benefits of pulmicort, so if anybody has any opinions, i’d like to hear them.

the eric update – day 68: getting taken to bottle feeding school.

day 68: it's the long lost fingergrab

well, it’s more of the same today – feeding and sleeping, sleeping and feeding, sleeping, sleeping and feeding. i think we’re going to find him off tube feeding entirely quite soon, as he’s now able to take four or more bottle feeds a day, depending on the nurses discretion as to how tired he’s getting. i think he’s also getting strong enough that soon kris will move from non-nutritive suckling to honest-to-goodness breastfeeding.

day 68: getting taken to bottle feeding school. I.

for his past couple of feedings, eric had started to increasingly behave in a way that i interpreted to mean that he was getting tired of having a bottle – closing his mouth, pursing his lips, blocking the bottle with his toungue etc. usually when this happens, the nurses are quick to “gavage” him ( feed him via a tube ), with the explanation that it’s best to get his feeding done quick so he has enough time to digest his food.

tonight, when i was feeding him and he hadn’t taken a sip in ten minutes, i started to signal to his nurse that maybe it was time gavage him. i had noticed that nurse marlene had been watching me closely while i was feeding; she walked over and gingerly picked up eric but to my surprise, instead of putting in a tube, she started to whisper to him that she had a lot of faith that he knew exactly what he needed to do to eat. and much to my astonishment, in about five seconds, eric was guzzling away.

nurse marlene is the archetypal nurse caregiver. if you close your eyes and imagine the most grandmotherly of grandmotherly nurses and you’ll likely being envisioning nurse marlene. her white, couffed hair, bifocals and ageing hands betray the fact that she’s been nursing for quite some time and all that experience translates into the thousand little things that she’s doing which result in an easy bottlefeeding.

she very sensitively explained to me all the things i was doing wrong. most obviously, she sits him up, while tilting his head back. i often lay him along my forearm, while holding his head with my hand, which tends to tilt his head foreward making it more difficult for the milk to go down.

she also showed me a great technique for getting the bottle nipple past his tongue. he likes to put his tongue on the roof of his mouth and pretend that he’s sucking, but in reality he’s just playing with the bottle. nurse marlene showed me how put the bottle in his mouth so that the nipple touches the inside of his cheek and then she swoops it past his tongue.

as if that weren’t enough, i’m also being far too timid about putting the nipple all the way in his mouth. apparently, my fears of gagging him are vastly overblown.

day 68: getting taken to bottle feeding school. II.

nurse marlene continued here tutelage with a lesson on the proper way to burp. his head must be tilted up, not down as i had been doing. and she carefully but very firmly grasps him while keeping his airway open. she swings his head and torso in a full 360 degree circle to show me just how firmly she’s holding him, as his head doesn’t change it’s upward tilt during the arc.

i’m admonished to not rap on his back either, and she rolls her eyes when i tell her that’s what the other nurses do. she’s gently massaging his back and right on cue, eric lets out a little burp.

she clarifies that a properly burbed child never needs their back rapped and i suspect that she might be making a comment about the burping skills of some of the other nurses.

the eric update – day 62: a second gregorian birthday bath, bottle and balloon.

day 62: second gregorian birthday bath. I.

odin celebrated his second gregorian birthday today! even though you’ll likely be reading this a day after the fact, you can feel free to hum him a few bars of the birthday song, since tomorrow will be his nine week birthday. we like to find any ol’ reason to celebrate. we weighed in at 3 pounds 9.7 ounces or about 1636 grams. it’s fun to look back at his first gregorian birthday and see that he’s gained almost exactly a pound and a half.

day 62: second gregorian birthday bath. II.

eric got cleaned-up with a a birthday bath. while he’s tolerated his other baths quite well, for whatever reason, he decided that he was not impressed at all with this one and he squirmed and kicked and generally gave kris and nurse jan a run for their money.

day 62: second gregorian birthday bath. III.

but rather than posting a dozen pictures of him kicking and grimacing, i’ll commemorate the event with the one picture of him looking relatively calm.

day 62: second gregorian birthday bottle. I.

you might notice in the bath pictures that he doesn’t even have his nasal cannula in his nose! the plastic tube is gently blowing oxygen in his face to help him breath, but i don’t think he really needed to it, since it was often pointed away from his face at odd angles. nurse jan commented at one point that perhaps he didn’t need to be on supplemental oxygen at all, so maybe sooner rather than later he’ll be rid of the nasal cannula completely.

day 62: second gregorian birthday bottle. II.

eric proved that taking the bottle yesterday wasn’t a fluke; after the bath he finished off his second bottle in short order.

he drank the first 16 cc’s quite quickly ( i.e. in under 10 minutes ). he then drank about 4 more cc’s over 10 minutes before deciding that he didn’t want the last couple of cc’s as he was getting very, very sleepy.

day 62: second gregorian birthday balloon

after the bath and the feeding, eric barely has any energy left to celebrate and he falls fast asleep on kris’ chest while clutching his balloon.

the eric update – day 53: supersized paci. yet another spit bath. first laundry load!

day 53: supersized paci

tonight, eric was upgraded to a really, really big paci, which is yet another sign that he’s getting to be a Big Boy. the pacifier is a special preemie, orthodontically-correct paci which the nurses claimed would be difficult to find outside the nicu. it doesn’t seem too difficult if you know where to look, but maybe there’s a difference that makes a difference that i’m not seeing. i’m sure someone can help me clear up the confusion. in any case, the supersized paci is a big step on the way to getting prepared for breastfeeding. it’s neat to see him start to suck on everything in sight when it gets close to feeding time, even though his feedings are coming through the feeding tube.

day 53: bearer of the ring

maybe someday, i’ll stop documenting every bath that he gets, but today was not that day. kris looked at me with a raised eyebrow when i told her that i was going to photograph yet another spit bath, but i just couldn’t quite bring myself to not take the pictures. hopefully you’ll still enjoy the fruits of my obsessiveness.

day 53: yet another spit bath. I.

no, this isn’t a mere product placement for johnson & johnson shampoo; it’s time for another “spit” bath! eric can’t have a full tub bath because his IV is in his arm, which makes it more difficult to keep water from infiltrating the line.

day 53: yet another spit bath. II.

first, the eyes must be scrubbed.

day 53: yet another spit bath. III.

and then the inside of the ear.

day 53: yet another spit bath. IV.

don’t forget the back of the ears. you don’t want any yeasty growths accumulating behind the ears.

day 53: yet another spit bath. V.

scrub his head!

day 53: yet another spit bath. VI.

rinse his head!

day 53: yet another spit bath. VII.

aahhhh. a brief respite from the rigors of the spit bath.

day 53: yet another spit bath. VIII.

a bath can be pretty tiring and one must yawn at least once during the process.

day 53: yet another spit bath. IX.

scrubbing bubbles.

day 53: yet another spit bath. X.

during the bath, eric decides that maybe the new, supersized paci would be a good way to help make the best of the situation.

day 53: yet another spit bath. XI.

it’s always nice to end a bath with a little fingergrab.

day 53: tucked in for the night.

tucked in for the night. well, not really, because the nurses will still be doing their nursing duties every couple of hours, but we like to imagine that he’s really settled in for a long night of restful sleep.

i think the muscle shirt with cars suits him well.

day 53: decreased nasal cannula flow

in one of the most subtle changes of late, eric’s nasal cannula air flow was decreased from 2 liters to 1.5 liters, which is a huge step forward in the process of getting weaned from the respiratory aid. the nurses thought he’d need to have his supplemental oxygen turned up to help offset the decreased airflow, but he didn’t, which they said was quite impressive.

the floating ball indicates the flow rate. when it gets to zero, he’ll be able to get rid of the nasal cannula altogether and be free of tubes up his nose!

day 53: his first load of laundry!

they also told us that, as soon as he gets the IV taken off of his hand, we can start bringing in his own personal clothes! the clothes he’s wearing now are special tops with velcro that make it really easy to get on and off in the event of an emergency, but soon he’ll be able to wear regular street cloths.

so, late in the night we did his very first load of laundry.