day two of our gardening and kite flying adventure at organic valley.
odin attempts to navigate the wheelbarrow without crushing too much of mister koppa’s garlic 🙂
Tag Archives: kris
the eric update – day 96: welcome home, odin!
psssst. i’ve updated the post – please scroll down.
he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home! he’s home!
( more later, lots to do )
time passes.
we’re home. after 96 days in the nicu i still can’t quite believe that we’re actually home. and despite my slight anxiety that i’d be paralyzed by fear at not having a nicu nurse at close hand, i think we’re doing pretty well. actually, little odin is making things quite easy for us. he’s mostly just been sleeping the day away in the arms of family members that have come to visit. his monitor has gone off a few times, but they’ve all been false alarms. and while there was some concern that moving home might wipe out his “reserve capacity” and bring on another round of refluxing and alarms, he has only spit up a very little bit of food since getting home. so he seems to be handling the transition very well!
regular readers might wonder how we were released so quickly without having any of the various surgeries that he may or may not need. in an amusing last minute twist the doctors changed the original plan that we discussed with them which involved eric coming home early next week after having surgery for his inguinal hernia. but it appears that scheduling for surgery is quite complicated and they couldn’t get a slot for him in a timely manner and they decided that they didn’t want to have him hanging out in the nicu waiting for surgery; they came back to us a couple of hours later and told us that we could bring him home today. as you can imagine we were, er, quite surprised. in a good way. mostly. so, due to the vagaries of surgical scheduling, we got to bring him home and wait for october 19th to arrive which is when he’ll have his inguinal hernia repaired. with each passing day that his reflux continues to remain under control they are increasingly confident that he won’t need any of the more invasive measure to stop the spitting ( woohoo! no gut tube! ).
a large number of people have asked if i’m going to continue the postings now that we’re out of the nicu. i think the short answer is that i probably won’t stop posting any time soon. so if you’ve been following along, keep following along.
as a taste of what’s to come, some of you may remember that we bought a house for the snowdeal show ® with our sister-in-law and her partner and they are expecting their second child very soon. diane’s due date was within days of little odin’s original due day, october 16th, so things should even more exciting than ever, all the more so because she’s having a home birth, which long time readers might remember is what we originally planned as well.
it’s odd to think that within the next couple of days, odin – who just celebrated his third gregorian monthly birthday – will meet a cousin who is the same age, but not. or something like that.
But now, we sleep at home together for the first time! the Beginning of Many More Adventures to Come.
here are a few sights from The Very Exciting Day ( some dupes from above but with more description ).
the whole discharge process took about 3 hours, which is two bottles in bottle time.
sweet ease is sugar water and it’s given to preemies in the nicu to calm them down. if a kid is screaming or uncomfortable, you’ll often hear a nurse say “just give ’em some ‘sweet ease'”. eric never fussed too much, so he never had much of the stuff ( some of the kids were sweet ease addicts ), which is nice because we never were too comfortable with training him to be comforted by sugar water.
but today it appears that they gave him some sweet ease while they were administering his vaccines, which needed to be done before he could leave.
you can’t go home without smelling fresh and clean now can you?
despite being caffeine free, eric is going to go home with a monitor, so we can make sure that he doesn’t react adversely to the change in environments by slowing his heartrate and respiration.
we had to go to a “class” to learn how it worked as part of the discharge process, which was a little silly because we’re pretty familiar with monitors after 3 months in the nicu.
he’s sleepy after the bath, a feeding an diaper change, but we decide to show off his very cute duds that he’s sporting for the ride home.
the sensors for the home monitor are held in place on his chest with a cloth “belt”, which a much nicer alternative to the “sticky” leads. they’re cutting the cloth belt down to a proper size as they transfer him from the nicu monitor to the home monitor.
he’s has his pulse oximeter sensor on almost continuously from the the very beginning, so it’s a little odd to be taking it off for the very last time. what will i do with my time if i can’t stare at his blood oxygen saturation levels for hours on end?
woohoo! normally they like to test kids out in the car seat, but we’re leaving on such short notice that we just cross our fingers that he’ll enjoy being in the seat.
indeed, he liked it a lot and didn’t make a peep during the entire process.
that’s right! he’s in the car! he hasn’t melted in the rain!
auntie gina greets odin when we arrive at the house. mauja hangs back for a bit and then decides that he really, really wants to get a closer look. it’s hard to tell, but if gina hadn’t stopped him, he would have had his front legs on the table and would likely have commenced with licking, which is probably not a good idea.
mauja loves babies and i think he’s going to have a hard time understanding why he can’t plant a wet sloppy tongue on odin whenever he pleases.
gradma and grandpa snowdeal came along to help us with the transition from the nicu to home. they held eric for a long time which was nice because we had lots to get done. odin slept comfortably the entire day.
cousin ruby lives in the house that we bought for the the snowdeal show ®, so she’s sort-of like a big sister. she’s been anxiously waiting to meet odin for 3 months. ruby was very thoughtful and brought a balloon along for a gift.
ruby is having a grand time talking to baby odin.
we won’t be going anywhere without the home monitor and i’ve found that it’s a little tough to remember to not just pick him up and walk away without grabbing the monitor.
the antiseptic hand wash is going to be a very important fact of life for quite some time. anyone who touches eric must wash their hands before picking him up.
we have to fill out the apnea journal anytime the alarm goes off to give the doctors contextual information such as whether or not he changed colors and what we were doing at the time – e.g. feeding. so far, we’ve only have “loose lead” alarms which aren’t very important.
hey, it’s a sneek peak at his nursery! it’s sort-of a green-silver-blue with artwork theme. more pictures later.
eric gets his nightly meds for reflux.
auntie gina also lives with us in the house we bought for the the snowdeal show ®, so you might be seeing many more pictures of her, if she doesn’t mind.
they were watching the presidential debate which obviously wasn’t doing much to help keep ruby awake.
it’s time for sleepy time in the arms reach Co-Sleeper®. the only problem is that he’s not so sleepy.
auntie diane is super duper pregnant and her due date is within days off odin’s original due date, so she’ll be having the baby very, very, very soon.
auntie diane was on the short list of visitors at the old nicu so odin is quite familiar with her belly. whenever auntie diane holds odin, her baby starts to stir, so maybe there’s some sort of baby-to-baby communication going on.
the eric update – day 95: cliffhanger
hmmmm. what news could have prompted an impromptu celebratory hand game with lots of singing and smiling? could it possibly be that we learned when he might be able to come home?
perhaps 🙂
i am going to try to respect the curse of the nicu and not say exactly when they told us he could go home, but you might not want to take a vacation from visiting the site over the next couple of days! hee. hee.
update: i finally got around to getting caught up on adding postcards that have been forwarded to us from the old nicu ( as always, thanks! ). i suspect that more than a few people might want to send us a postcard sometime in the next week ( hint! ), so i’ll remind everyone that you should use the new address if you’re going to send a card. the old nicu has been pretty good about forwarding us postcards, but i don’t think they’re under any obligation to continue to do so and i don’t want to abuse their kindness.
later: don’t send us a postcard here, we’ll never get it. thanks for everyone who did at the time! 🙂
eric c. snowdeal iv
p.o. box 1514
grand rapids, mi 49501-1514
the eric update – day 91: 13 week birthday! cafffeine free! visit from grandparents.
while flickr has been having issues, i’ve been getting behind on posting updates. so for now, i’ll just post the super abridged version and maybe i’ll get around to posting the longer version when time permits. you can see annotated photos from the day here.
- you didn’t forget that it’s eric lucky 13 week birthday did you? of course not. 5 pounds and 13 weeks old! what’s next? of course, his 3rd gregorian monthly birthday, tommorrow.
- his docs took him off caffeine today, which was helping him to remember to breathe, which means that they think he’s at risk for having anymore “apneas of prematurity” ( he could still have feeding related apnic episodes, however ). he didn’t have any alarms during the day which means that he probably won’t go home with a monitor that measures his heartrate and respiration. in other words, he’ll go home without any wires!
- eric had another visit from his grandparents, which he enjoyed quite a bit.
laaater:
another visit from grandma snowdeal! strange – her eyes aren’t red anymore 🙂 she demonstrates a superb ability to keep eric from refluxing so she’ll definitely be getting lots of holding time in the future.
and whenever you find grandma snowdeal, grandpa usually isn’t far behind. i’d use the old, eric watching eric watching eric line, but i used that one.
on the day before his three month birthday, they decide to take him off his daily dose of caffeine, which is supposed to help him to remember to breath ( i never really understood why caffeine does what it does, but someday maybe i’ll look it up ). he didn’t have a single alarm after the sudden withdrawal ( i might have an alarm or two if somebody decided to suddenly take away my caffeine )! since he’s not having any alarms that are due to what’s know as “apnea of prematurity” ( as opposed to feeding-related apnic episodes ), they will probably decide to send him home without a monitor, which means he’ll go home without any wires!
the device in the picture is the home monitor that he would have gone home with. he’s been hooked up to it since he arrived, in addition to his other monitors, just to make sure it works well. it makes the most ear bursting sounds if he has an apnic episode, since it’s designed to alert you even if your on the other side of the house. when you’re sitting right next to it, you’d swear that your ears might start bleeding if it goes off for an extended period of time.
i never get tired of seeing how good he’s getting at keeping the supersized paci in his mouth all by himself.
he’s nearing his three month birthday old (actual age, technically, he’s still not supposed to be out the womb for two weeks), so i guess it makes sense that his motor skills and coordination are really beginning to take off.
eric is clasping his hands, content after a bottle, while kris is resting her hand on his chest. you can see the ever present supersized paci in the background.
the eric update – day 90: five pounds! infant massage. another bath.
while flickr has been having issues, i’ve been getting behind on posting updates. so for now, i’ll just post the super abridged version and maybe i’ll get around to posting the longer version when time permits. you can see annotated photos from the day here.
- 5 pounds (2280 grams)! woohoo! he’s as heavy as a bag of sugar! weight gain despite reflux is a good thing.
- infant massage. we’ve been giving him more massages lately to help keep the gas moving along. infant massage has also been shown to have all sorts of other benefits, so it’s a good thing to do regardless ( indeed, the nurses at the old nicu gave eric regular massages, but they don’t seem to think it’s as important at the new nicu ).
- yet another bath. you can’t have too many bath pictures can you? no, you can’t, especially when you’re giving a bath to a baby swaddled in cloth diapers. it’s cute. honest
laaaater:
5 pounds (2280 grams)! woohoo! he’s as heavy as a bag of sugar! weight gain despite reflux is a good thing.
hmmmm. can you tell he’s hungry? putting a web cloth diaper on him worked so well, that we decided to go all out and swaddle him completely, only unwrapping the parts that we needed to wash when we needed to. bath times go a lot smoother now.
yeah, he’s hungry, but he’s pacified temporarily by the supersized paci. i imagine that he’s looking at me thinking, “i’m going to remember this when i’m 16.”
time to be dried off by pops. my hands still look purty large next to his head.
we’ve been giving him more massages lately to help keep the gas moving along. infant massage has also been shown to have all sorts of other benefits, so it’s a good thing to do regardless ( indeed, the nurses at the old nicu gave eric regular massages, but they don’t seem to think it’s as important at the new nicu ).
we’re following the techniques described in Infant Massage: A Handbook for Loving Parents. i’m not an infant massage expert, but it seems like a good book.
little odin loves to have his feet massaged. being in the nicu is tough work and after a long day, he thinks it’s just grand it you spend a little extra time on his feet.
don’t forget to massage the arm and hand! he’s strong and likes to flex his muscles in an effort to impress the nurses.
this move is called “paddling the waves” or something like that. but really it should be called “letting out the gas”. the rice makes him less gassy than the barley, but since he’s still not supposed to even be born for two more weeks, any solid stuff is rough on his gastrointestinal tract. so we spend extra time getting the gas out.
after the bath and massage, he’s more eager than ever to show us that he doesn’t need any help keeping the supersized paci in his mouth.
the final step of a good massage, of course, is getting to sleep in your most comfortable ‘jammies.
the eric update – day 87: waiting. a fistful of paci. barley feeds. mobile.
after eric’s neonatologist’s consulted with pediatric surgeons this morning about his hiatal hernia and possible nissen surgeries, they’ve decided to hold off making any decisions to see if non-surgical management will help improve the reflux. while that’s great news, they’ve also decided to delay his inguinal hernia surgery so they can do it when and if they decide non-surgical methods are no lnoger working to control the reflux at which point they’ll do everything at once. since his neonatologist last night said that they had already had a hunch that he’d need the surgeries eventually, but that the pediatric surgeons didn’t like to do them before a baby weights 2,500 grams, i’m guessing that from their perspective we’re playing a waiting game – they wait for him to hit 2,500 grams, while letting us try less invasive treatments in hopes that something might work.
to that end, they finally gave orders to start supplementing his feedings with barley which helps to thicken them and will hopefully help to keep the food in his stomach where it belongs. remarkably, after we added the barley, he almost completely stopped spitting up his food! even more importantly his blood oxygen levels remained stable after eating, which means there’s less reflux in his esophagus stimulating the nerves that initiate the cascade of events that lead to an apnea. he’s still showing signs of reflux, such as pursing his lips and making chewing motions with his mouth, but he responded quite well to the barley and appears to be much more stable; in fact, he hasn’t had any alarms in over 24 hours! whooohoo!
sometimes after adding barley to the milk, micropreemies have a more difficult time drinking their bottle, but eric doesn’t seem to mind at all and drinks it as quickly as ever.
do the remarkable results of adding a little barley to his feedings mean that he won’t need surgery? it might and it might not, depending on the results of additional upper GI series ( we don’t have any sceduled yet ). it’s possible that the barley is helping to make eric more stable, while masking esophageal damage that will gradually result in feeding problems, which we certainly would like to avoid. but the barley might, just possibly might, help to stabilize eric enough to allow us to bring him home while he gains weight and we to see if he really does need surgery or if things will gradually get better as eric matures. eric’s neonatologist said that he would let him come home with an unrepaired inguinal hernia, as long as everything else was under control. i’m guessing that if we see two or three days of no alarms and no significant “desats” after feeding, we might be talking about going home sooner rather than later – not that we’ll ever tell him that, mind you.
so, while we wait, wondering if little odin will be coming home in one week or six, life in the nicu hums along; today, eric actively grasped and held his paci for the first time ( motor coordination! ); we gave him a bath and got a great tip from a nurse about how draping eric in a wet cloth diaper will give him a “bundled” feeling, making baths a lot less stressful. micropreemies often will get agitated when they lack the boundaries that were familiar when they were in the womb. he loved it. if we removed the diaper he’d start to fuss, but as soon as draped him in the diaper, he calmed down quickly.
he’s hungry, so he decides to suck on the web diaper that we’ve draped over him
and we brought in a mobile that will supposedly encourage his development and vision. i don’t know if the claims are about stimulating development are true, but it seems like a good idea to have something familiar around when we finally get to go home.
the eric update – day 86: photo op! unexpected rop exam. upper GI. more surgery? longer stay?
one of eric’s neonatologists from his old nicu stopped by today. she does research at the new nicu and after talking for a bit about how he was doing, she asked us if we’d allow her to have some pictures taken for a publication that they are putting together about the ROP research that she’s doing with eric’s opthamologist, dr. droste. of course, we were happy to have them take some pictures of little odin, on the condition that i could take a picture of them taking a picture of him.
the man in the photos is dr. droste, who performed eric’s rop surgery and the woman in the lab coat is dr. poortenga. we like her a lot, since her quick actions helped to unstrangulate his strangulated hernia on day 35. had she not been successful eric would have been transferred to the new nicu much sooner for emergency surgery. she’s very nice and is one one of the many people that we were not able to get a picture with before leaving the old nicu, due to the quickness of the transfer – so it’s nice turn of events to finally get the picture afterall.
during the photo-op, dr. droste took a moment to perform a follow up exam for his recent rop surgery. the good doctor still thinks eric looks “good”, but believes he has a 50% chance of needing further surgeries ( which is a higher estimate that he provided immediately after the surgery). he also clarified that kids with disease similar to eric have a 20% chance of developing more severe ROP, an 80% chance of ending up with 20/100 vision or better and a 60% chance of having 20/50 eyesight or better. so, there’s a good chance that he’ll need some sort of eyeglasses in the future, but that was probably going to happen anyway, since nearsightedness runs in the family.
after the photo-op, we went on what eric’s nurse called a “field trip” for his upper GI exam. and what a field trip is was! i think i might have left the mistaken impression that we were overly concerned about the radioactivity of the barium during the exam. i guess it was poor wording on my part, since kris and i have both had upper GIs and know that while it’s not a risky exam, we know that it’s not exactly a walk in the park either and all things being equal we’d have preferred to not have to have him wheeled to a far corner of a hospital, strapped to a board and rotated around while drinking a barium milkshake. but that’s just us being worry wart parents, because eric simply couldn’t have cared less. he took it all in stride and, amazingly, didn’t cry once. he just looked around and calmly took it all in. i guess in the world of a micropreemie, it’s just another day in the nicu.
the exam room is small, but it’s filled with lots of equipment, including a large x-ray machine.
little odin is quickly place on a board that will allow the technical staff to rotate him 180 degrees to get a variety of views of the radioactive barium flowing through his digestive tract during the upper GI test.
eric is strapped to the board to prevent him from falling off during the procedure.
kris conforts eric right before the upper GI exam begins.
during the exam, they carefully rotate him while feeding him radioactive barium to get front and side views of his gastrointestinal tract while he’s feeding.
two techs, jeff and jeff, look at the x-ray movie as the food moves down his esophagus, into his stomach and enters his small intestine.
kris comforts eric after we believe the procedure is finished.
eric’s hungry, since they skipped his 12 a.m. feeding before the procedure, so kris gives him a bottle which he gulps down.
d’oh! right after kris gave eric his bottle we discover that they want to get a few more images to help them clarify an abnormality that they found in the initial test.
jeff looks on as he completes a second set of scans. he’s looking at the narrowing in eric’s esophagus, which – if you look carefully – you can see on the monitor. eventually he determines that the narrowing is simply a “tertiary contraction” which happens when his esophagus contracts in an uncoordinated manner that’s not uncommon in micropreemies and not – thankfully – a physical obstruction caused by abnormal vasculature.
eric’s nurse gave him a “rubber ducky” for doing so well doing the procedure. after we return to the nicu, the duck looks on while eric sleeps since he’s very, very tired from such an exciting adventure.
unfortunately, they discovered that eric is refluxing almost as soon the milk hits his stomach, which is not good. the preliminary assessment is that he has an undiagnosed hiatal hernia, which happens when the stomach prolapses through the diaphragm. although it’s a relatively small hernia, it could still be the cause of why eric is refluxing so quickly. we don’t know much at this point and will have to wait until tommorrow when the pediatric surgeons get a chance to review the results of the upper GI. why would the pediatric surgeons be reviewing the upper GI? because the neonatologist’s hunch is that eric should have the hiatal hernia repaired and is also a candidate for a surgical procedure known as “nissen fundoplication” which strengthens the stomach valve. it’s hard to imagine that a little over a week ago, we were close to going home with eric and now it appears that we’ll need to make some quick decisions about an ever expanding list of surgical options.
while it seems reasonable to contemplate repairing the hiatal hernia, we were a bit surprised to hear that they also thought he might benefit from the nissen procedure, since my understanding is that it’s done as a last resort. perhaps they’d just like to do it if they already have to have him in the operating room. in any case, we’ll know more tomorrow after talking with the surgeons.
unfortunately, if he does need surgery, unlike the inguinal hernia surgery, they don’t often perform it on babies that weigh less than 2,500 grams, which means – under optimal conditions, we could be faced with another 10-20 days in the nicu, just waiting for him to gain enough weight for the surgery. and if he starts having problems gaining weight due to the reflux, then it could even longer.
temporarily abandoning the rollercoaster cliche’ in favor of the marathon metaphor – while things might look quite a bit different tomorrow after we talk with the pediatric surgeons, it’s hard not to feel like the finish line keeps moving farther and farther away.