taken three days after odin was born almost 11 years ago. i still remember clearly thinking it was so thoughtful of the nightshift nicu nurse to take the photo and yet so heartbreaking.
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 )
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.
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?
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
hey, today was pretty boring, in a good way. we just sat around waiting for tommorrow when we’ll hopefully have a much better idea as to when eric will get a the “o.k.” to go home. he didn’t have any alarms and seemed to continue to recover from his recent severe episodes of reflux.
i’m not sure we’ll get much sleep tonight as we ponder whether he’ll be coming home in a day or two or three or six or ten. and with not much by way of “excitement” ( in a good way ), i fill the time by taking macro shots of my son 🙂
i guess it’s a good thing that the recent big news is that we’ve discovered that we’ve been adding too much rice to his feedings to control his reflux. yesterday we discovered that we were adding twice as much pulverized rice to his milk than he needed which is nice to know since the solid food in his diet is making him a little gassy. hopefully less rice will mean that he’ll have less gastrointestinal troubles.
for the record, if your adding pulverized rice to milk you only need 3/4 of teaspoon per 45 cc’s of milk. previously we were adding 1.5 teaspoons per 45 cc’s which is correct only if you’re using rice that isn’t pulverized.
you really do learn something new everyday in the nicu.
we haven’t heard any concrete dates about when he might be ready to go home, but his neonatologist told us today that they are going to consult with surgeons and various specialists and come up with a plan on thursday morning! i don’t think he’ll be going home on thursday, but they said that we’ll have a much more concrete idea on thursday evening about what steps need to be taken in order for him to be discharged! if everything continues to improve, i think we’ll be busting out of the nicu, very, very soon. of course, we’re vigilent of falling victim to the the curse of the nicu and we’re careful to not ever mention that he might be coming home when we’re by his bedside. all the nurses are familiar with the curse and completely understand when we spell out h-o-m-e as we’re discussing the issue within earshot of odin .
it might have been a little bit of an overstatement to say that his reflux disappeared. every so often he lets us know that he’s still refluxing, even though he’s sending very little milk out his nose or mouth. despite the occasional desats, he’s still doing quite well – although his doctors admit that they don’t know exactly how to account for his speedy recovery when just last week it seemed that he was a good candidate for surgery.
the third green line from the top shows a running tally of his heartrate and on the left side of the screen you can see a substantial dip of over 60 beats per minute which occurs when milk has started go up into his esophagus stimulating nerves that slow his heartrate.
the blue line below the green line shows his blood oxygen saturation level and you can see that it also dipped ( known as a “desat” ) as a result of his slower heartrate. his blood oxygen saturation fell below slightly below 80% which is enough to make the alarm go off, but not enough to make him change skin color from pink to blue.
the desat alarm is not too bid a deal, but if his heartrate has continued to fall below 80 beats per minute then a different alarm would have sounded indicating that his heartrate had fallen dangerously low at which point he’d be having an episode known as bradycardia.
when pressed to give the odds, his doctors still think that he has a 30-40% chance of needing the nissen and g-tube surgeries, although obviously they’re getting confident enough to begin the discussions about when he might be able to come home. despite the fact that the odds are increasingly in favor of not performing the surgeries, the doctors indicated that they’ll probably send him home with his inguinal hernia unrepaired on the chance that he’ll eventually need the hiatal hernia, nissen and g-tube surgeries, thus diminishing the chance of needing to put him on the ventilator several different times ( in other words, they’ll hedge their bets and vent him once and perform whatever surgeries they need to perform all at one time ). also, despite being caffeine free, they said that they will probably send him home on a “home monitor”, since they’re not sure if his reflux will return after being sent home.
since it’s impossible to know if his heartrate is fluctuating and he’s desatting when he’s not showing obvious signs of refluxing, i have to admit that i feel a little more secure knowing that he might be coming home “wired”.
amazingly, he’s continuing to gain weight at a stupendous pace and is flying past the 5 pound mark and weighed in at 2,380 grams or about 5 pounds 4 ounces!
we didn’t have any cake on hand for his birthday, but we did have a little reglan which seems to be doing a good job of controlling his reflux. if fact, it’s doing such a great job that his doctor’s don’t think that he’s going to need surgery! that’s right, just four days ago it seemed inevitable that he’d need some sort of surgery, but today his doctors said that he’s doing so much better that he’ll likely not need any surgery afterall. oddly, they don’t even want to do another upper GI to see if the volume at which he starts to reflux has changed, since it seemed to be such an important number to everyone.
his progress has been truly remarkable, especially over the past couple of days. he’s pretty much completely stopped spitting up and blowing milk out his nose and, more importantly, his blood oxygen and heartrate levels have greatly stabilized. last week, even when he wasn’t spitting up, his heartrate would oscillate up and down, varying by as much as 40 beats per minute; the variations in his heartrate were caused by milk entering his esopagus and stimlulating his vagus nerve which helps to control how fast the heart is beating. in the past few days, these variations have greatly decreased and occasionally they’ll disappear entirely after an hour has passed after feeding.
so was it the reglan? the rice? the weight gains? the time taken to get acclimated to the new environment and recover the ROP surgery? who knows – maybe all the above. it’s hard to describe the feeling of having something like severe reflux just dispappear. poof. will it come back, if he gets stressed out after coming home? i guess we’ll find out soon, since there really aren’t too many reasons left for us to be in the nicu!
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.
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.