Tag Archives: ericiv

the eric update – day 33: the sounds of cpap

there’s not much to report today, as eric is slept soundly through much of his 33rd day and the nurses more or less sensitively told us and his other visitors that we shouldn’t disturb him too much – which, of course, means no lights and hence, no pictures. he had very few alarms, although his ‘oooohs’ from his cpap machine are still cranked up to 30-40%, as he still doesn’t seem to be able to cruise along on room air.

speaking of cpap ( continuous positive airway pressure, a type of respiratory aid – for the many of you who haven’t been following along from the beginning ), i thought i might try to capture what the experience is like from eric’s perspective. you might think that he’s bothered by bells and alarms and clanging all day long, but at least as long as he’s on cpap, i suspect that all he can hear is the very loud white noise produced by the air rushing through his mask. so i stuck the ibook mic near his head and recorded a minute of the sounds of cpap and overlayed it on one of the few shots that i was able to get today. if he looks like he’s wincing a little and trying to cover his hears, now you know why.

if you listen closely you can hear the muffled sounds of nurses talking while standing at the bed next to his, which is about 6 feet away. turn the volume up and put on some headphones to get the full effect, while trying to imagine enduring the sounds 24 hours a day.

the eric update – day 32: yet more alarms. bile. gifts!

day 32: another finger grab

yowza. even after getting a dose of lasix, which is a diuretic meant to help his get rid of the fluid that he was retaining after the transfusions, eric weighed in at 978 grams or 2 pounds 2.3 ounces, which would seem to indicate that his weight gain over the past few days was more “real” than not. yeah!

after a cluster of alarms in the morning, eric had a quiet afternoon and then started up with them again in the evening. though he “only” had eleven a’s and b’s by the time we left, they were disturbingly “deep” in the evening, requiring a lot of effort to get him “jumpstarted”, necessitating a big jump in ‘oooooohs’ ( supplemental oxygen – remember, anytime they increase his ‘ooooohs’ he’s at an increased risk for eye problems down the road. it’s all so very, very connected. ). at a certain point i was left wondering if it might be best to just put him back on the vent to give him a rest. and we noticed before we left late at night that he was starting to use his intercostal muscles, which are the muscles lying between ribs, during his breathing; it might seem like a minor point, but it means that he’s he’s getting quite tired, and trying to recruit more muscles to help him to breath, which only makes him more tired. his nurses were still holding out hope that he’d settle down over the night, so i guess we get to play another round of The Waiting Game.

day 32: bile on the side

at one point i was able to capture one of those special nicu moments that involves bile, poop and breathing. the syringe is filled with a mixture of undigested milk with a little bile, which is what gives it a green tint. the tube gets filled when he refluxes fluid back out of his stomach. there are a number of reasons why he might reflux , one of which being that he might be trying to poop, which is why kris is checking his diaper.

if he struggles to poop, he’ll put too much pressure on his abdomen and force the contents of his stomach up into the tube.

besides being slightly gross, the pressure will also affect his vagus nerve which will slow his heartrate and breathing, resulting in bradycardia or apnea – which is exactly what happened right after i took this picture.

day 32: his first collegiate t-shirt!

amongst the postcards we received today, we also were happy to find a toddler t-shirt from some of eric’s new friends who are attending penn. i doubt they have micropreem cloths at the penn giftstore so they sent him a 6 month shirt for a full term baby.

as you can see, it might be awhile before he’s able to wear it.

thank you very much melody ( and your roommate too! ). i can’t hardly wait until i can take a picture when it fits him properly. it’s astounding to think that complete strangers have gone through all the effort to send him such a gift and words really can’t describe how touching we find the gesture.

we also received a bunch more postcards today. it means a great deal to us to be able to walk into the nicu and read everyone’s supportive postcards. i need to get my act together and find a way to show everyone where all his cards are coming from. special thanks go out to adam and johanna who are friends from california who appear to be traipsing around california and sending postcards from los angeles to sonoma to san francisco. eric IV enjoys each and every one of them ( as do we, of course ). thanks!

day 32: his new favorite blanket

later in the evening we would get the chance to put him under a super soft blanket that some friends gave eric when he first arrived in the nicu. the nurses all commented on how comfortable he looked nestled in it. it’s big enough that i think he’ll be able to enjoy it for his entire stay. he seemed to like to rub his hand against the plush border of the blanket.

day 32: being held

after a tough day, eric enjoys being held by kris. it’s not quite as good as kangaroo care, but it’s good enough.

much, much later in the evening ( o.k. really, it was early, early, early the next morning ) we called the nicu and eric had finally settled down with his alarms, so it looks like we can sleep relatively easily.

the eric update – day 31: 2 pounds! a gregorian birthday. a vent?

day 31: two pounds!

2 pounds, 1.7 ounces! 956 grams! almost a kilo! on his first “real” gregorian monthly birthday, eric decided to surprise everyone and break the 2 pound mark! everyone was completely surprised, because after getting close two nights ago, he dropped back down to 1 pound 13 ounces last night, and a typical weight gain for him might be a half ounce. so he gained nearly 4 ounces in a single night, which is unprecendented. i guess he decided that we could use a present on his birthday. and yes, i’ve already decided that, instead of just celebrating ‘4 week’ milestones, we’ll also celebrate regular monthly “birthdays” since he probably deserves as much celebrating as he can get. hitting the two pound mark is A Big Deal, so we’re very, very happy.

day 31: transfusion. I.

it was nice to have such great news towards the end of the day, because most of the day was spent anxiously awaiting to see if they were going to put him back on the vent. yes. that’s right. the vent. on this rollercoaster, in the span of 48 hours, we can go from seeing if he’s strong enough to be on the nasal cannula for 24 hours, to being told by the neonatologist ( you know thing are getting serious when you find yourself having an unscheduled chat not with a nurse or nurse practitioner, but with he himself, the neonatologist. ) that he had so many alarms over the previous night that they are close to putting him back on the vent.

day 31:  transfusion. II.

but first, they were going to give him a few blood transfusions because his red blood count was dropping to levels where it was possible that his lack of “boxcars” was really the root cause of his respiration problems. low boxcars, means less oxygen, which means he has to work harder just to stay at the same level, which means he gets tired and starts alarming. or at least that’s the theory. they game him 8 cc’s of blood 4 hours apart ( 4:30 p.m. and 8:30 p.m. ). so it’s time for everyone’s favorite way to pass the time – The Waiting Game. they’ll run his bloodwork at 1 a.m., run the numbers and decide if he needs a third transfusion before tommorrow morning. which means we get to spend the night wondering if we’ll find him on the vent in the morning.

day 31: on his permanent record

all the red marks indicate when his heart rate dips and he stops breathing. if he gets too many marks on his record, then he goes back on the vent.

as a consolation prize for having to play the waiting game over the night, the nurses all made a point to express that they are fairly confident that his dropping red blood counts are what are causing the problems; they had made a clinical note just last night that he was looking particularly pallid and that he would likely need a transfusion soon. but he’s had 17 a’s and b’s through the day, so nobody can really say or sure if the transfusion will kick in before they decide to put him on the vent. or if the low red blood count really is the underlying issue.

day 31: torso

so be sure to tune in tomorrow for the next exciting episode of The Waiting Game.

the eric update – day 30: first bath from mama!

day 30: eric's first bath from mama. I.

when you’re in the nicu for you spend a lot of time wondering when you’ll get the chance to do the simple things that other parents take for granted. for 30 days we’ve pondered, contemplated and bet when eric would be stable enough for a bath from mama.

and woohoooo! late in the night we were pleasantly surprised to find that we could give eric his first bath! i think both of us felt a mix of complete elation along with a good dose of pensiveness that he might stop breathing or his heart rate would dip.

he’s been getting “spit baths” all along, but surely none of them were as fun as the one he got from mama. most of the hands you see belong to kris, but every so often nurse sue lends a helping hand. i, of course, am darting in and out, trying to capture the entire thing.

micropreems don’t usually like baths very much; from their perspective it’s just something that makes them very cold and all the touching can lead to overstimulation tantrums. but i guess eric isn’t like most micropreems, since he was quite content through most of the process

first things first – you must start by wiping the crud from his eyes.

day 30: eric's first bath from mama. II.

and a little more scrubbing. nurse sue is holding his head and kris provides the other two hands.

day 30: eric's first bath from mama. III.

more scrubbing.

day 30: eric's first bath from mama. IV.

the ears must be cleaned.

day 30: eric's first bath from mama. V.

scrubbing bubbles. kris applies soap to his very sensitive skin.

day 30: eric's first bath from mama. VI.

help!! eric is pleading for me to intervene.

day 30: eric's first bath from mama. VII.

kris is picking eric up in an attempt to get his head closer to the water.

day 30: eric's first bath from mama. VIII.

kris is gently applying some water to eric IV’s head right before she adds some shampoo.

day 30: eric's first bath from mama. IX.

you can’t have a bath without being dried off.

day 30: eric's first bath from mama. X.

i think that might be the beginnings of a smile.

the eric update – day 30: an alarming night. a chest x-ray. and maybe a hernia.

day 30: a chest x-ray

even though they put eric back on the cpap, he continued to have an “alarming” night last night, throwing an unusally high 16 “a’s and “b’s” through the night. we feared that he might need to go back on the vent, but nurse jan said it can sometimes take 24 hours for a baby to stabilize their respiration after they get pooped, barring any other complications. the strange lung sounds have stopped, which i guess is a good thing as long as they stay gone. they took a chest x-ray this morning to rule out any lung abnormalities and everything checked out just fine, which is a big relief. his blood work doesn’t show any indications of an infection, so we’re hopeful that all his alarming is just a sign that he’s telling us that he’s tired and would like a little help breathing and not something more nefarious.

they are also monitoring eric closely to determine if he what is known as an inguinal hernia. it’s your basic “bulge in the groin” hernia that a man might get if he’s lifted something too heavy and pushed a loop of intestine through a weakened muscle or an opening inside his body. in eric’s case, there’s a hole high in his groin created by the inguinal canal. it’s open and holding his testicles which aren’t even scheduled to descend until 32 weeks gestation ( which means we have about 3 more weeks to go in micropreemie time ). the hole left by the open inguinal canal can allow part of his intestine to push through the gap, which appears to be what is happening to eric. at the moment, they aren’t sure if he even has a hernia ( although it’s likely he does ), but if he does, they will hope that it remains “reducible” ( i.e. can be pushed easily back through the opening ); if it does not remain reducible, then he will need to be transported to the other nicu in town, which we wouldn’t like since we’ve become such big fans the st. mary’s nicu staff and their care. but for now it’s a waiting game, while they try to make a definitive diagnosis.

from the too-much-information department. micropreems will often get hernias because they start pooping before their inguinal canal closes, which is not something that mother nature intended, as a baby is not normally pooping in utero before the canal would typically close. the effort associated with pooping can push the intestine through the gap. such are the trials and tribulations for a micropreem.

later in the night, eric decided to finally settle in and his alarms went back to a “normal” level, which means that just might have been a little tired from all the time on the nasal cannula.

day 30: the undigested bits I.

eric has a tube that is threaded to his stomach that allows air and undigested food to be pulled back out of his stomach. we don’t want to waste any of the precious breastmilk that he’s receiving, so he gets the undigested milk put back in his stomach via a syringe hanging above his bed. it sounds gross, but i really don’t think he minds too much.

day 30: the undigested bits II.

he doesn’t need the plastic wrap above his bed to help him to regulate his body temperature anymore, but they like to put it there anyway to help him shield his eyes. at one point, while he’s getting the undigested milk, he decides to thrust his hand up and move the wrap back a bit. i imagine that he’s trying to get a better look at me as i’m taking pictures; he is briefly opening his eyes and looking at me, but i’m not fast enough with the trigger finger to capture them when they are open.

the eric update: so. who’s picking up the tab?

with a little help from friends

as soon as you set foot into the emergency room, the meter starts running. well, actually, if you take an ambulance, the meter starts running before you step into the emergency room, which is why we drove to the ER, since i didn’t want to have to pay a $700 ambulance bill that the insurance company would deem unnecessary ( at the time, we obviously didn’t realize just how necessary it could have been ). amusingly, when we first arrived at the the first hospital we realized that, cleverly, we had both left our insurance cards at home. and throughout the first couple of hours, i would wonder if there some sort of obscure loophole with our insurer that would allow them to deny coverage because we hadn’t given them the card immediately.

throughout the first few days, we would find ourselves thinking ( or more correctly, trying not to think ) about how stupendously expensive the whole process was going to be , whether or not st. mary’s was in our “network” since we transferred from an “in network” hospital and didn’t know a thing about our new hospital, or even whether or not any of our doctors were “covered”. most importantly, we also didn’t know if we had an “out of pocket maximum” with our current insurance plan. about the only thing we did know for sure was that kris has enrolled in a special maternity plan that changed our coverage from 75% to 90%, but only for care provided by “in network” doctors at covered facilities. at one point, right before kris was getting wheeled into the operating room, i remember her exclaiming “you better check and see if our insurance is going to pay for this!”

on the second day at the nicu, our new family counselor gave us a form and told us that we were lucky to live in a state with a loophole in the state medicaid law that allows anyone, regardless of income, to qualify for medicaid reimbursement for “some” of the bills ( note the use of the suspiciously vague word, “some” ), if patient is in intensive care for more than 30 days ( i believe that the loophole is the result of AARP lobbying muscle and was initially intended to cover elderly patients, and micropreemies get to take advantage of poor legislative language ). “trust me,” she said. “his bill for 3 months in the nicu will likely be over $200,000, and you don’t want that bill, so be sure to fill out this form and get it submitted.” kris and i exchanged glances and blurted out, “two hundred thousand dollars!”, as we simultaneously did the mental math about how much we’d owe after insurance paid their piece and if medicaid paid nothing.

in addition to the medicaid loophole, we would also discovered that there is a separate program which used to be called, very politically incorrectly – the crippled children’s program – but which is now supposed to be referred to as “childrens’s special health care services” (CHSCS). they must have changed the name recently because nobody calls it CHSCS, as it’s simply called “crippled children’s”, as in “don’t forget to fill out your paperwork for crippled children’s”. in any case, CHSCS is a form of supplemental insurance for the specialist care that eric may or may not need after he gets home ( i.e. speech therapy, physical therapy etc. etc ). the first year is free and then i believe we would need to pay a premium if we decide we want to stay enrolled.

so that’s the context we had over the first few weeks we knew we had a good chance of getting something paid by someone, but still didn’t know any specifics of how much our insurer was going to cover because we weren’t at a covered hospital and i imagined that the insurance companies probably had complicated rules associated with payments for referral services. but kris and i did what we do best on occasion and procrastinated on getting any specifics because; a. there wasn’t anything we could do to change the situation and b. hearing that we weren’t covered and medicaid would only pick up half the bill was not something we could conceptually handle at that particular time. in other words, we were engaging in some good, old fashioned, denial and avoidance behaviors.

a few days after we learned about CHSCS but before we leaned any specifics about our insurance coverage, i was chatting with a nurse about The Bill and insurance and how it was nice to at least have the prospect of getting money from a few sources to help defray costs. “oh yeah.” she said. “because his bill will run, hmmmmm, let me see. i’d guess that he’ll probably have a bill of $1 Million Dollars. maybe more.” if i hadn’t been sitting down, i probably would have fallen over as i heard “One MILLION DOLLARS!” bouncing around my head in what sounded like a dr. evil’s voice.

so, it would seem that the family counselor had already done the math, knowing that we had insurance, coverage and was telling us the number that most people could get saddled with after insurance pays their cut ( and note that this number doesn’t include kris’ care). no wonder she kept pestering us to get the medicaid paperwork submitted as quickly as possible. suddenly, getting specifics seemed a whole lot more important because i was fairly certain that i wasn’t going to be sleeping any better, if i had to think about paying a two hundred thousand dollar nicu bill.

it took a frustratingly long time to get the answers, but it turns out that we will may not have to pay one red cent for his care. our insurer will pay 90% of his nicu bills ( it turns out that st. mary’s is “in network” after all ) and 75% of the cost of his neonatologist bills ( weirdly, his visits by the neonatologist are not considered part of his nicu care ( even though the visits are done in the nicu) and he’s not an “in network” doctor ( even though he’s at st. mary’s with is an “in network” facility. easy to follow, huh. ), so we get the “out of network” coverage rate, which turns out to be 75%. of course, the number left over is still a hefty one, but the fine people that answer questions about my healthcare plan have told us verbally that we have a $2,500 “out of pocket maximum” and that’s not going to change. and we can submit the $2,500 to medicaid and the person who does hospital billing said that they would likely pay every last bit of it. in fact, according to the hospital billing department, medicaid will pay nearly all of the difference between our “out of pocket maximum” and the percentage paid for by our healthcare plan. what medicaid doesn’t pay, she casually explained, they write off. so, even if i were to lose my healthcare coverage, it sounds as if medicaid will pay the bill.

having heard the horror stories of the bills that families have when they leave the nicu, we feel a little guilty that we will probably not have to worry about it. we know we’re tremendously lucky to have a great healthcare plan ( incidentally, my fantastic insurance is provided motorola who owns the plan but contracts it out to humana. motorola has always been, and continues to be, the kind of company that encourages healthy, happy employees – they even encourage breastfeeding by making it very clear that they will subsidize a breastpump! go moto! ) and live in a state that will foot the bill, even if we didn’t have such fantastic healthcare. ironically, in this sense, we’re “fortunate” that he was a micropreem and will be guaranteed to stay in the nicu for much longer than 30 days.

in some strange, conflicted way, it’s hard to not feel sad for the parents of the preemie “multiples” who are relatively healthy and stay for under a month, as they will leave with a hefty chunk of a bill, even if they have fabulous insurance ( obviously they don’t give two or three for one offers in the nicu). if i had to guess, i’d bet that they often end up with bills between a hundred and two hundred thousand dollars, which would be frightening to contemplate paying as you’re trying to think about how to how to feed and cloths two or three new babies.

hopefully nobody will comment about how i’ve missed a small detail and will actually owe One MILLION DOLLARS!.

meta: obviously this post is quite a bit longer than the others. of course, i’ve been working on it for awhile and didn’t write it all today. i do have other things to do 🙂

the eric update – day 29: more postcards! and blue moon birthdays?

day 29: more postcards!

i like the fact that the most exciting thing to report today was that we got a bunch more postcards in the mail! woohooo! and my family should be ashamed for allowing complete strangers from all over the world to get eric’s postcard in the mail before they did ( actually my sister candy did get her postcard in the mail fast, but not faster than somebody in santa clarita, california ). thanks again ( and i’m just kidding about the family comments. maybe. 🙂 ) – perhaps the next two and a half months can simply be daily shots of his new postcards. perhaps i can find a way to help you all visualize where they are coming from, with a webified map of the world and a link to a scan of the postcard. see, isn’t that much more interesting than knowing that eric is doing so great that they’re going to experiment with putting him on the nasal cannula all day today? i don’t suspect that he’ll be off the cpap forever, but he does enjoy proving everyone wrong, so who knows.

it occured to me today that some of you might consider august 4th to be his one month “birthday”, at which point i thought it was funny that kris and i both consider yesterday to be his one month birthday, since it was 4 weeks after all and with micropreems gestational milestones are often measured in weeks ( 32 weeks for a suckling reflex, etc ), so it’s just easier to keep a record of weeks, rather than gregorian months; and that’s why we’re going to make it difficult on everyone and keep following a lunar calendar month instead of a “regular” calendar month.

curously, as we were talking about moons, lunar calendars and marking off gestational ages ( of course, you all know that the menstrual cycle is a 28 day cycle too), both of us remembered that it was a full moon yesterday. or something quite close to a full moon. which means it was a full moon on the fourth of july! and, of course, it’ll be a full moon in 28 more days on his second month birthday. neat. i wonder if there’s a link between preeclampsia and full moons joking. mostly. sort-of.. you’d think that he’d also have a full moon on his first “real” birthday, but that doesn’t seem to be the case, if the lunar calendar i linked to is to be trusted.

conspiracy theorists might think we planned this all out ahead of time, given that the full moon features so prominantly in the norse creation myths ( i’d guess that the full moon probably is a common thing to talk about in all creation myths ) and that we decided to call him odin. but remember, i’m an adherent to littleton’s law and the power of a good story. most of the time.

in any case, eric’s monthly “birthdays” will henceforth be officially observed every 28 days until further notice ( at least until we stop paying such close attention to weeks and “age adjusted” milestones ), so double check and make sure we’re celebrating on the same day!

update: some good news and some not-so-good-news-that-isn’t-horrible. first, eric is packing on the weight. he gained more than two ounces today and weighed in at 1 pound 15.3 ounces! amazing! he will most assuredly hit the two pound milestone in the next day or so. w00t!

also, he did have to go back on cpap this evening and the nurses noticed that one of his lungs sounded like it was not expanding and contracting as it should be; they weren’t overly concerned about it, but they are going to give him a chest x-ray tommorrow to make sure there isn’t anything bad happening. there are innumerable, innocent reasons for why his lung might not be acting as it should, and a couple of bad reasons that they want to rule out. so we’ll be hoping for the best over the next 24 hours.

there’s also a small chance that he might be developing a hernia. or maybe his testicle is descending ( i’m not kidding, they really can’t tell it’s a hernia or a descending testicle). a hernia would be not-so-good since he would need surgery which would necessitate him getting transferred to a different facility in town. and we really like his current nicu, so hopefully it’s not a hernia.

aaaaaaaand. on our nightly dog walk, we were telling the “full moon” story to a neighbor and they commented that they thought that the recent full moon was a “blue moon”! however, upon futher investigation, it looks like eric’s “lunar birthday” is just shy of the full moon, blue moon or otherwise. so conspiracy theorists can rest easy.