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the eric update – day 7: ooooh. look at my cool nasal cannula!

day 7: ooooh.  look at my cool nasal cannula

late in the evening we got a call that he had been switched from his CPAP respiratory aid to what is known as a nasal canula. it’s similar to the oxygen tubes that you might see on an elderly relative with emphysema. in eric’s case, it means that they are even more confident that he can breath on his own, unassisted. it also means that you can see more of his face, since he doesn’t have his the CPAP face mask on. he still had occasional bouts of apnea today, so they’re only going to try it for 3-5 hours before switching him back to the cpap regime.

it’s hard to tell in the photograph, but they also took one of his umbilical lines out ( his umbilical arterial (UA) line ), which means he’s further on the road to stabilization. they only remove the line when they don’t feel they need to monitor his blood gasses as closely as they needed on prior days.

they might try to remove his umbilical venous (UV) line tonight. and put in a new IV line in his arm.

a few less tubes and a little more weight gain and we’ll be close to being able to pick him up and hold him!

the eric update – day 7: what a week.

a boy and his dog

wow. has it really has been a week? i guess it has. and he just keeps getting stronger and stronger with each day.

i know every nicu parent probably thinks it, but i know he’s really grabbed the hearts of many of the nurses. they go far above the call of duty for him, stopping by his station on their off hours or when he’s technically not on their watch, snapping polaroids of him doing cute stuff when we’re not around ( today we found a polaroid that one of his nurses took last night. it’s really blurry, but the nurse had set his stuffed dog next to him and wrapped his little arms around it and cuddled with it for a long time. ) and even shooting great little movies of him ( you’ll see those in good time ). he’s a devilish little charmer and some of the nurses even think he’s quite a rascal. i’m not sure what that means, but they seem to think it’s a good thing.

day 7: the first finger squeeze

today has been fairly quiet, which is exactly what we want. without all the hullaballoo, you can pick up subtle differences between the days, such as he’s getting much more responsive to my voice; today, when i first came up to the bed and started to peel back the plastic wrap, i said, “heellloooooooo! eric.” and he immediately thrust his little arm up and out the enclosure through the narrow slit in the wrap, catching me by surprise. sadly, i don’t have my camera with me every single instant of the time that i’m there, so i missed that shot.

later he decided he wanted to squeeze my finger, which was fine by me. technically, this is not his first finger squeeze. auntie diane has been claiming that he’s been squeezing her finger for days. but today i guess he decided that i was a good substitute.

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.

the eric update – day 5: the discharge blues

day 5: kris gets her discharge papers.

everyone tells you it’s going to happen. you’re running on vapor and adrenaline for days on end, as a stupendously wonderful support team of family, friends and specialists forms around you. you can’t believe that something so fragile can possibly be making so much progress in so little time. time passes. news that you can’t almost stand to bear keeps getting better and better. and almost without warning, you’re staring at them.

disharge papers.

and after weathering so many challenges, the best you can muster is guilt.

you’re going home and he isn’t.

day 5: some new pals

sure. he’s got some cozy accomodations and best support that anyone can ask for. but still. after you leave, he’s still here. getting poked and prodded. rubbing his eyes and looking around. thrusting his legs and arms, still likely confused as to where his boundaries went, until maybe nurse jan comes by and tucks him in or holds his legs and arms against his chest to fool him into thinking that he just might possibly still be in the womb.

day 5: look ma!  no tubes.

but despite no tubes and a whole lot of great progress, you’re still sad because you’re not there. and that’s when you realize a whole new kind of hard is only just beginning.

day 5: chilling in a chook

the eric update: the best day. evah!

day 4: first look

nothing but good news today. early in the morning, the doctors decided to take kris off her magnesium sulphate and discontinue her IV completely. so no more tangled mess of cords coming out of her. and her labs all look more positive, so i think it’s safe to say that she’s starting the “normalization” process. she’s eating regular solid foods and even has real pajammas on, so that all makes her happy. and in the evening she finally got the go-ahead to take a shower. i guess the novelty of a sponge bath wears off pretty quickly.

day 4: first touch

day 4: getting acquainted

even better – kris got word that she could see eric! despite all the pictures, her initial reaction was to gasp at how small and fragile he appeared to be amidst all the equipment. we stayed for about an hour and watched as they prepared to put him on a new ventilator. we talked, and touched and even saw him open his eyes!

day 4: eyes open

that’s right, his eyes were fused shut and nobody was expecting him to open them for another week or two, but i guess he’s enjoying proving everyone wrong. he’d struggle to keep them open and slowly start closing them, until i’d say his name and then he’d try to open them again.

day 4: first family  portrait

the new ventilator is a big step for him. he’s been on what is known as a high frequency oscillator which rapidly causes his chest to rise and fall as it helps him take 300 to 400 “breaths” a minute. this is absolutely necessary when he first arrived, but he shouldn’t be on it for too long as it can affect his long term lung capacity. so, it’s a really good sign that he’s on a new vent called a “baby log” which is in “continuous positive airway pressure” or CPAP mode. so no more oscillating and he’ll essentially be doing most of the breathing while it’s in CPAP mode. this is another big stabilization step, so it’s fantastic news. he will probably be on his new ventilator for awhile. or not, i guess, considering how much he enjoys beating the odds.

the new ventilator arrives

[ update: he’s been on the new vent for a few hours and he doesn’t like it so much as his blood gasses started looking bad – mainly due to him forgetting to breathe. so they’ve taken him out of cpap mode and put him in ‘pressure support ventilation’ (PSV) mode with a volume guarantee (VG) of 3 cc’s and a backup rate of 44 breaths a minute. so essentially if he forgets to breath, the machine ensures that the makes 44 breaths a minute and it also makes sure that he’s getting 3cc’s of air, which is about the capacity of his super small lungs. ]

and, proving that he really does have snowdeal genes, they started giving him caffeine today which he seemed to enjoy. i always said that you can’t start drinking caffeine too early or too often. no, they aren’t trying to create a coffee addict, but rather the caffeine somehow helps him to remember to breath. micro-preems apparently have a bad habit of forgetting that they aren’t in the womb and simply forget to take breaths. it’s not unusual for babies to be released and still be on a caffeine schedule as they are still forgetting to inhale.

day 4: adjusting his shades

he’s been under the “jaundice light” again today and he’s looking a little yellow, but that’s completely normal and the least of anyone’s concerns.

day 4: finger and foot

thanks so much too everyone who has sent flowers. they kept coming yesterday and today and we’re starting to look like a regular florist shop. the room is really fragrant and nurses and been poking their heads in because they can smell the flowers all the way down the hall. word has spread around the floor and everyone is so surprised at the amount of support she’s getting. in just the hour that we were in the nicu seeing eric, she received six arrangements, and was obviously very happy. again many, many thanks to everyone for sending the flowers. considering how much she’s improved in the past 24 hours, i’d say the plan worked perfectly.

flower power

in fact, you all can stop sending flowers because there’s a small chance that she might not be here to get them. amazingly, she’s making such rapid progress, that they are hinting that she might be released tommorrow evening. if not tommorrow, then almost certainly on saturday. her recovery is simply amazing as it’s not uncommon for the preeclampsia “10 percenters” to take weeks normalize.

lots and lots of people all over the world have let us know that they’re sending us good thoughts in whatever way seems appropriate for them and i must say that while i’m typically a skeptic’s skeptic, it certainly doesn’t seem to be hurting; we’ve had nothing but good news and both eric and kris are making surprising recoveries.

but while kris is clearly out of the danger zone, eric still has a tough road ahead. amongst many other impending issues, everyone is going to be very vigilent about infections. one bout of pneumonia can wipe out all this wonderful progress.

the eric update: he’s no wimpy white boy

eric's home address

on a day that statistics will tell you will probably be a bad day, we received some great news! at noon, we found out that the hole caused by the patent ductus arteriosus (pda) had closed in response to the medicine they gave him over the previous 24 hours. so, at least for now, there doesn’t appear to be any reason for him to get transferred to a different facility for surgery. he also has a greatly reduced risk for a class IV “bleeder” ( our neonatologist’s term for a brain hemmorage ). one of the side-effects of pda is that it sends five times more blood to the brain than is actually necessary, which in turn stresses the brain vessels. he’s still at risk for a bleeder, but much less so.

speaking of brain hemmoraging, when our neonatologist was explaining the effects of pda, he took the opportunity to launch into a discussion of bleeders. it turns out there are four classes of them, with ‘class one’ being not visible with the naked eye and not typically associated with negative outcomes and ‘class four’ being visible through the scalp and often fatal. in what was one of the many conversations we’ve had over the past few days that can be quite disorienting, we found ourselves listening to him calmly tell us that he probably wouldn’t even bother telling us about class one or two bleeders, as he’d end up driving us insane with that much detail.

the machinery

there are many other physiological consequences of the ductus arteriosis closing , the most notable being that they can reduce the percentage of oxygen that he’s getting via the ventilator. we normally breath air that has 20 percent or so of oxygen. for the past few days, eric has been getting anywhere from 30-60% oxygen. after the duct closed, they were able to move towards a schedule of letting him breathe ambient air with occasional enrichments of oxygen. also, they have been actively managing his blood pressure with dopamine and his blood sugar with insulin and they’ve stopped both of those treatments. later in the day, they also told me that they stopped giving him antibiotics to reduce the risk of infection. these are all stupendously wonderful signs that he’s stabilizing and setting himself up for the long haul. of course, he’ll still have bad days and downturns, but things are looking positive.

as donna, eric’s nurse today, was giving me an update about the pda and how good things were looking she stopped and laughed, “you know – he’s not a wimpy white boy!” she went on to explain that, when compared to other races, white male micro-preemies ( a technical designation for preemies that are born less than 26 weeks in gestational age and weigh less than 1 pound 11 ounces ) typically get more sick, have more bad days and have longer hospital stays. “i’ve been doing this for over 20 years and i don’t think i’ve ever seen an explanation for it. but lil’ eric ain’t no wimpy white boy. and that should make you very happy.”

day 3: and yet, he moves.

indeed.

unfortunately, kris is still not progressing as quickly as she’d like and she’s three days post delivery, which means perfectly natural post-partum emotions are beginning. a bad morning was made worse when the nurses told her they didn’t want to even try to see if she could make it down to see eric, given her current condition. she’s still at an increased risk for a seizure if she has too much sensory stimulation, so they want her to have another day of quiet rest.

her blood pressure is still dangerously elevated even after starting an additional blood pressure management medicine; her platelets has also been down throughout the day, while her liver function is elevated, all of which are trends in the wrong direction. it’s nerve-wracking to anticipate each new lab result and continually discover that she’s not only not stabilizing, but technically getting worse ( although thankfully she’s not in any pain ); however, the doctor reassured us that she’s not atypical for cases of severe preeclampsia such as she developed. he expects her to have another day or two of trending in the wrong direction, followed by a gradual normalization process. first her kidneys will start working more efficiently, followed by better liver function and finally her platelets will go back up. he said her kidneys are looking better, so we’ll patiently wait for the others to follow.

her doctor also gave us a little more information about the specifics of her case. about 10 percent of preeclampsia cases have similar etiologies and, as we discovered, if the baby isn’t delivered immediately it will die and the mom will quite likely die. to highlight the point, as a consequence of the disease process, kris’ placenta had become 30% calcified over a very short time ( possibly 24 hours ). had we waited even a short period of time to go to the ER, the placenta would have become completely calcified and eric would almost definately have died from a lack of oxygen. it’s also more likely than not that an undiagnosed underlying condition will be found that is known to amplify the effects of the preeclampsia ( essentially “causing” the severe “10 percenter” cases ); so, after everything settles down, they will start testing her to see if they can find the root cause.

day 3: kris gets solid food!

amidst all the disappointing lab results, kris is feeling better and making other important signs of progress. she’s started to regularly produce milk with a breast pump, which is getting stored down in the nicu ( neonatal intensive care unit ) for when eric is stable enough to start feeding. she also had her first solid food today, after days of nothing but an IV and the occasional juice. she happily enjoyed what would have otherwise been a bland cheese sandwich. and she also had her catheter removed! if you’ve ever had a catheter, you’ll understand why this made her very happy.

update: later in the evening kris finally got her first set of postive lab results and her blood pressure, while still high, seems to be gradually trending downward. her results are promising enough that they aren’t going to pester her every few hours over the night to draw blood and it looks like she might have a realistic chance of seeing eric some time tommorrow.