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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.

the eric update: 48 hours!

day 2: pigs in a blanket

time is something that i don’t have a lot of, so i’d like to thank everyone who has commented and sent an email. i won’t be able to respond, but please know that it really, really means a great deal. kris didn’t progress much today and spent much of the day sliding in the wrong direction. she’s out of life threatening danger, but everyone is hoping that things start to look better tommorrow. of course, she’s not able to see eric, which is the hardest part for her to bear.

eric took an expected turn for the worse in the morning, but gained some ground over the remainder of the day. his liver is not working as well as it should so he’s susceptible to jaundice. he was a little “jaundice yellow” this morning, but got more pinkish over time.

more significantly, eric has a “normal” condition known as patent ductus arteriosus (pda) , which is essentially a hole in the heart that needs to be closed. over the next few days, the doctors are trying to close the hole with medicines, but if it fails then he will need to get heart surgery. if they don’t close the hole quickly, he has a much higher risk of brain hemmoraging, so we’re obviously waiting anxiously to see if the medicine works.

since kris can’t see eric yet, i’m taking pictures everyday and tranferring them to her ibook, so she can constantly see how he’s doing and what he looks like. i’ve uploaded some of them to my flickr account so that friends and family [ and any others ] can stay abreast of his development. i hope to revamp parallax to keep a daily running journal of eric’s development. i assume that this will mostly be of interest to close family and friends who are scattered around the world, but even if you don’t know us, feel free to cheer along. every little bit of support helps.

kris enjoys flowers so please send them to:

kris salmi-snowdeal
c/o. st. mary’s hospital
200 jefferson ave s.e.
rm #923
grand rapids, mi 49503

we’ve recieved flowers from “eastern floral and gift shop” ( 616.949.22000 ) so i know that they know how to get flowers to the hospital, but i’m sure other florists in the area can get a bouquet to her. even if you don’t “know” kris, i’d be mighty obliged if you sent her flowers. she could really use the uplift. i can’t stress this enough. if you have the slightest inclincation as to what kris is going through, please, please send her flowers. she can use any little but of support she can get. thanks.

day 2: jaundice

day 2: jaundice II

day 2: jaundice III

day 2: fingers.

day 2: resting

day 2: toes

day 2: foot

day 2: pointing

day 2: the arm bend