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the eric update – day 96: welcome home, odin!

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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.

day 96: in the car seat!

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!

day 96: odin unexpectedly meets mauja!

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! ).

day 96: auntie gina, ruby and odin

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 ).

day 96: next to the last nicu bottle

the whole discharge process took about 3 hours, which is two bottles in bottle time.

day 96: sweet ease

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.

day 96: last nicu bath

you can’t go home without smelling fresh and clean now can you?

day 96: new home monitor

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.

day 96: going home duds

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.

day 96: attaching the home monitor

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.

day 96: removing the pulse ox sensor

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?

day 96: in the car seat!

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.

day 96: in the car!

that’s right! he’s in the car! he hasn’t melted in the rain!

day 96: odin unexpectedly meets mauja!

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.

day 96: lounging with grandma snowdeal

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.

day 96: odin meets cousin ruby

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.

day 96: odin, ruby and grandma snowdeal

ruby is having a grand time talking to baby odin.

day 96: wired in a bouncy chair

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.

day 96: antiseptic hand wash and apnea journal

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.

day 96: changing table

hey, it’s a sneek peak at his nursery! it’s sort-of a green-silver-blue with artwork theme. more pictures later.

day 96: first meds at home

eric gets his nightly meds for reflux.

day 96: auntie gina, ruby and odin

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.

day 96: sleepy time in the co-sleeper. sort of.

it’s time for sleepy time in the arms reach Co-Sleeper®. the only problem is that he’s not so sleepy.

day 97: auntie diane, ruby and odin. I.

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.

day 97: auntie diane, ruby and odin. II.

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.

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the eric update – day 77: a baby shower. rop, apparent but not real? a metric milestone. 11 weeks!

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day 77: baby shower. I.

today, 77 days or 11 weeks after little odin was born, we had our baby shower. thanks to the hard work of kris’ sister, gina, and her partner, diane, many people came and had lots of good food to eat. we had a great time and received many, many great gifts, but of course, given the circumstances we had a tough time not dwelling in his eric’s impending transfer to the new nicu for eye surgery.

day 77: baby shower. II.

many people came to the baby shower – this is one shot of a few of the friends and family that came to the event hanging out in our living room.

day 77: baby shower. III.

i’m intently reading a card while ruby, our niece, hands us gifts.

day 77: baby shower. IV.

kris unfolds a blanket for odin, while i look on. dig those crazy dark circles under my eyes. i don’t always look like that. honest.

day 77: baby shower. V.

on the left you can see diane, who – despite being very, very pregnant, organized our baby shower and for that we are very, very thankful.

day 77: baby shower. VI.

a shot of kris’ brother, his wife and one of their children – jagger.

day 77: baby shower. VII.

i didn’t take this very cute picture of our nieces, ruby and ella. they like playing together.

day 77: baby shower. VIII.

another shot, not taken by myself, of ruby – looking very cute.

day 77: baby shower. IX.

kris’ brother with his son, our nephew.

day 77: the explanation.

i might have some of the details incorrect because i haven’t had a chance to talk at length with eric’s opthamologist, but my understanding is that eric is “pre-threshold” and “8 hours” into ROP which is technically stage 3+ and primarily developing in zone 2. if you think of the eye as a dartboard, the optic nerve is the bullseye and is zone 1 and there’s a ring around the the optic nerve which is known as zone 2. there are 4 stages of the disease and stages 3+ and 4 can lead to the formation of scar tissue on the retina, vitreous hemorrhage, and retinal detachment. by saying that eric is “8 hours” into stage 3+ disease, his opthamologist is not telling us that he’s been at that stage for a third of a day, but rather if he’s giving us an indication of hos quickly the disease had progressed. if you were divide the retina into 12 hours, he’s telling us that 8 “continuous” hours show signs of being in stage 3+ of the disease. he only needs to show signs of disease in “3 hours” to be considered “prethreshold” in zone 2 ( as the disease progresses, you move from being “prethreshold” to “threshold” which means you need surgery within 72 hours ), so it doesn’t appear that they are making a marginal call and transferring him unecessarily.

day 77: more hair than yesterday.

or does it.

after spending much of the day trying to come to grips with how his disease could have progressed so quickly, eric’s neonatologist paid us a special visit late in the evening ( on his time off, no less ). we’ve come to expect the going to get weird whenever we see him at odd hours ( he’s a great guy, but as you can imagine he’s A Very Busy Man ) and this visit was no expection.

after stating the appropriate amount of caveats , we found ourself listening to him explain that they could never not do what they were doing because they can’t ignore the results of his latest eye exam – but that fact didn’t stop him from holding out hope that eric’s ROP was not nearly as bad as the evidence would lead his opthamologist to believe. sounding much like a zen master he stated plainly, “you see, it’s apparent, but it might not be real.” in medicine in general and neonatology specifically, sometimes a test will show something to be very apparent, but all one’s instincts tell one that it’s really not real, and in this case, his instincts are telling him that eric’s ROP might not be real.

normally, ROP progresses relatively slowly and it’s fairly unusual to have severe disease appear so quickly when they were monitoring it so closely. in fact, it’s so uncommon that he’s only seen it a handful of times in his many years of practicing neonatology. and every single time it’s happened, the diagnosis was preceeded by a recent blood transfusion, which is exactly what eric received just six days ago. but in his experience, micropreemies that present the disease as eric is presenting who have also received a recent blood transfusion often have the disease disappear or at least significantly regress. his theory is that for whatever reason the blood tranfusion engorges the eye’s blood vessels in a way that makes the ROP apparent, but not real. he stated quite frankly that eric’s opthamologist would not agree with his theory and that it didn’t change the fact that they needed to treat eric as if he were going to need surgery soon, so the discussion has an academic flavor to it. but it’s a bit of hope and i guess in a week we’ll have the benefit of hindsight to know whether or not his theory is true or if it’s just a kooky prognostication by a neonatologist who likes to second guess the opthamologists ( i mean that in the best possible way, if he’s reading this 🙂 ).

day 78: saying goodbye to nurse cathy b.

we said teary goodbyes to some of the night nurses, as they won’t see his again after the transfer tommorrow early in the day. unlike some nicus, eric has had many of the same nurses for his 77 day stay at “saints” and they gave up not getting attached to him a long time ago.

when we came back from lunch today we found eric’s nurse, cathy b, cuddling with eric because she knew it was one of the chances she’d get before he got transferred to the nicu. it was a sweet, touching moment. cathy b’s own son is named eric and she never tried very hard to disguise how much she truly enjoyed caring for our eric.

she sat with us for a long time today and shared stories about her life. we’ll miss her very much and she’s a great example of why saint mary’s nicu is unique.

she doesn’t have to cuddle with our son while we’re away for lunch, but she does because she’s a great nurse and a fantastic person.

day 77: saying goodbye to theresa

theresa was his nurse tonight and, ironically, she was also his nurse on his first night.

she’s sad to see him go the the new nicu for surgery and holds him for one of the last times before he gets transferred in the morning. we’re sad too, because we like theresa a lot.

she asks us if we’d like to give him a bath so he’s fresh and clean before the big move and we decide that we’d like her to have the honor. we can tell from the look in her eye that it means a lot to her and, really, it’s the least we can do to repay her for all her hard work at helping to keep him alive.

we won’t soon forget his nurses and i suspect they won’t forget him either.

day 77: a metric milestone

amidst everything else, eric continued to do what he’s been doing so well on his 11 week birthday – eating and gaining weight. he’s still guzzling bottles at breakneck speed and he tipped the scales tonight at exactly 2 kilos or about 4 pounds 6.5 ounces.