Tag Archives: ericiv

the eric update – day 9: the rollercoaster

day 9: glued to his vitals

eric was “throwing” more alarms than usual today. mostly apnea ( forgetting to breath ) and bradycardia ( slowing of the heart rate ). while completely normal, it can still get tiring to sit, staring at the monitor, with a hand ready to rub his back or the bottom of his foot to jumpstart his breathing, if the alarms start. last evening he had 6 apnea/bradycardia incidents alone and he had 8 more over the night. typically, he might have 3 or 4 in an entire day – so the rate has definately increased.

when micropreems are having trouble breathing it means, at best, that they are getting tired and at worst something else is going on, such a systemic infection ( in this particular case, it’s probably not a generalized infection, since they didn’t see an elevated white blood count in his latest labs ). in either case, you’ll often see a range of systems start to work less efficiently as things start to slow down. and when that happens, the nicu nurses have to do many unpleasant things to your baby while you watch. this is the sad part of their job and they are all the more heroic for doing it day in and day out.

the machine creates a quick succession of “bing! bing! bing!”, if his pulse/oxygen levels dip along with his heartrate creating a “low rate alarm”. this is not necessarily a concern, but rather a warning.

a different and more urgent sounding pattern of “bings!” emanates from the machine if the “low rate warning” progresses to full-blown apnea ( not breathing ). at that point nurses will start running to the bed, while you try to remain calm.

eventually, when they see that you’re not going to turn into a mass of useless flesh when the alarms start ringing they’ll teach you how to see that your son really isn’t breathing ( i.e. it’s not a false alarm ), and they’ll show you a variety of ways of getting him “jumpstarted”, ranging from rubbing his back in a specific spot to tapping his butt or the bottom of his foot.

today i got him breathing a handful of times over a few hours, which i guess constitutes a form of bonding. right when i snapped this picture he went into full-blown apnea and i had to drop the camera and rub his back, so i could only get a shot of the less urgent “low rate alarm”.

day 9: the abuses suffered

the nurses are going to put him back on CPAP full time, since the nasal cannula takes a little more work on his part and if they need to start “bagging him” ( ventilating him manually with a small bag like you might see on the tv program ‘ER’ ), then it’s possible that they might put him back on the oscillating vent. i don’t even think they’d call it a set back, but rather he’s just telling us that he’s tired and would like us to take over for awhile while he recoups.

another sign that he’s getting tired came when they suctioned the contents of his stomach and found 1.5 cc’s of undigested colestrum. they are giving him 0.5 cc of colestrum every 2 hours, so clearly his digestion has slowed. if the food sticks around for too long then a condition known as necrotizing enterocolitis (NEC) – which are a big couple of words for rotting bowels – can set in quickly, as the blood supply to his bowels is decreased or interrupted. under those conditions, hypoxia ( lack of oxygen in the tissue) can kill or damage the cells in the bowel wall, eventually leading to perforation and peritonitis ( infection of the abdominal cavity ). advanced NEC is something you don’t ever want to see, since it requires very difficult bowel surgery, so they’ll be watching him closely.

in this picture, eric is suffering through the least of his abuses as nurse peggy is pulling the undigested contents of stomach out through his endo-tracheal tube. he gets a half a cc at each feeding and she pulls out 1.5 cc’s, so he’s not digesting much.

right before nurse peggy sucked out the contents of his stomach, she aspirated his nasal passages to increase air flow. it sounds innocuous enough, but it involves threading about six inches of tubing through his nose, into his sinuses and down his throat, all the while rotating and thrusting the tube to suck out any last drops of mucus.

day 9: finally resting

after hours and hours of alarming and being probed and prodded and “jumpstarted” the alarms have settled down and he’s looking like he might be stabilizing.

he eyes us warily as nurse peggy tells me that he’s doing well, all things considered.

so, in the end, today was quite demanding and typical of the rollercoaster that a 24 weeker can put you on; and when juxtaposed against what happened yesterday, today was a great reminder that one needs to focus on enjoying each moment for what it is.

the eric update – day 8: the perfect moment

day 8: getting prepped for being held by mama

what can i say? the kid enjoys defying the odds and exceeding expectations. last night he had his umbilical arterial (UA) line removed and they thought they might remove his umbilical venous (UV) line if he looked good over the night. they only remove these lines when he’s begun to stabilize enough that he doesn’t require extremely precise measurements of blood gasses, so it’s one more sign that he’s doing fantastic.

they thought perhaps they’d try to put what’s known as a pic intravenous line in a good spot in him, which they’d thread close to his heart. then they’d need to watch and wait and make sure that he faired well after the routine, but still difficult, procedures.

he did so well over the night with all the changes that we were very pleasantly surprised to find the nurse asking us if we’d like to hold him when we arrived at the nicu! they had been telling us that it could be weeks before we could hold him, so you can imagine the range of emotions we felt in an extremely short time period.

first things first. he needs needs lots of swaddling to prevent his temperature from dropping when he’s taken out from under the warming lamp above his bed.

day 8: the handoff commences

nurse peggy is deftly moving tubes and lines around so that kris can hold him.

at this point there’s a red light on top of his bed that’s started to spin and make noise and various beeps and flashes on a multitude of monitors are making quite a commotion.

nurse peggy is calm, so i stay calm. sort-of.

day 8: the landing

more commotion and final adjustments, but kris is finally holding eric!

he forgets to breath a few times, but nurse peggy is a pro and “jumpstarts” him by gently rubbing his back, as nurse jan brings some backup caffeine.

day 8: mama settles him down

after all commotion things settle down quickly as kris hums and talks to him.

he makes little funny noises back at her and opens his eyes eventually.

nurse peggy thought he might only be able to be held for a few minutes and kris clearly hogged the handling time by holding him for nearly 15 or 20 minutes.

day 8: pops gets in on the holding action

finally! i get my chance. kris did a great job of settling him down so he’s just being content and making cute noises.

day 8: gentle hands

nurse peggy lets me hold him unswaddled right before he goes back to his bed.

his skin is incredibly soft and smooth; he’s looking right at me, even though his vision is supposed to 20/600, as his eyes aren’t fully developed.

despite all the lights ( not least of which being the bright flash from the camera ) and the noise, he’s remarkably calm – just gazing up at me.

day 8: back to bed

then, back to bed! he has some new linens and a stylish white cloth cap, which along with the CPAP mask make him look like a sci-fi jet pilot from another planet.

day 8: struggling to keep his eyes open

he’s pretty tired after all the activity, but still managed to muster the energy to open his eyes as i hum to him.

i know this might be bordering on the cliche’, but it truly was one of the most sublime and inspiring events of our lives and the pictures don’t even come close to capturing the essence of the experience.

the eric update – day 7: ooooh. look at my cool nasal cannula!

day 7: ooooh.  look at my cool nasal cannula

late in the evening we got a call that he had been switched from his CPAP respiratory aid to what is known as a nasal canula. it’s similar to the oxygen tubes that you might see on an elderly relative with emphysema. in eric’s case, it means that they are even more confident that he can breath on his own, unassisted. it also means that you can see more of his face, since he doesn’t have his the CPAP face mask on. he still had occasional bouts of apnea today, so they’re only going to try it for 3-5 hours before switching him back to the cpap regime.

it’s hard to tell in the photograph, but they also took one of his umbilical lines out ( his umbilical arterial (UA) line ), which means he’s further on the road to stabilization. they only remove the line when they don’t feel they need to monitor his blood gasses as closely as they needed on prior days.

they might try to remove his umbilical venous (UV) line tonight. and put in a new IV line in his arm.

a few less tubes and a little more weight gain and we’ll be close to being able to pick him up and hold him!

the eric update – day 7: what a week.

a boy and his dog

wow. has it really has been a week? i guess it has. and he just keeps getting stronger and stronger with each day.

i know every nicu parent probably thinks it, but i know he’s really grabbed the hearts of many of the nurses. they go far above the call of duty for him, stopping by his station on their off hours or when he’s technically not on their watch, snapping polaroids of him doing cute stuff when we’re not around ( today we found a polaroid that one of his nurses took last night. it’s really blurry, but the nurse had set his stuffed dog next to him and wrapped his little arms around it and cuddled with it for a long time. ) and even shooting great little movies of him ( you’ll see those in good time ). he’s a devilish little charmer and some of the nurses even think he’s quite a rascal. i’m not sure what that means, but they seem to think it’s a good thing.

day 7: the first finger squeeze

today has been fairly quiet, which is exactly what we want. without all the hullaballoo, you can pick up subtle differences between the days, such as he’s getting much more responsive to my voice; today, when i first came up to the bed and started to peel back the plastic wrap, i said, “heellloooooooo! eric.” and he immediately thrust his little arm up and out the enclosure through the narrow slit in the wrap, catching me by surprise. sadly, i don’t have my camera with me every single instant of the time that i’m there, so i missed that shot.

later he decided he wanted to squeeze my finger, which was fine by me. technically, this is not his first finger squeeze. auntie diane has been claiming that he’s been squeezing her finger for days. but today i guess he decided that i was a good substitute.

the eric update – day 6: finding a routine and a first feeding

medical record II

today was the first day that we had a chance to begin even thinking about establishing some sort of visitation routine. in many ways, we’re profoundly lucky, in terms of how easy it is to go see eric. some of you know, but most don’t, that the house that we bought for the snowdeal show ® is a mere 4 blocks from the nicu. we really couldn’t have planned it any better. when we were looking for properties with our co-purchasers ( sister-in-law and her partner ) we discovered that one of us ( sister-in-law ) was actually only interested in looking at houses in a very specific 8 block area in the historic district ( where, of course, we eventually found a house ), but the rest of us were leaning towards getting some land outside the city. many long and heated discussions were had where we tried to get gina to be reasonable and move up to an hour away . she wouldn’t have any of it. we were on the verge of dropping the entire plan when we found the house we bought before it even went on the market. so we literally can take a brisk walk and see eric in 10 minutes, ultimately because gina was stubborn and uncompromising about where she wanted to live. strange, but true.

today, felt like the first day where we could sit back and try to relax in the nicu. however, relaxing involves trying to find strategies to cope the fact that on this particular day as you walk up to his bed, his nicu nurse is calmly, but with firm expedience, shutting off a beeping monitor and, if you look close, you’ll notice that she’s simultaneously getting him to remember to breath.

hitting the books

“hi!” she says, with an oddly cheerful tone given the circumstances. “he’s a great night. a few bouts of apnea and bradycardia this morning, so we’ll let him calm down for a bit after he starts remembering to breath again. all very normal, of course. amazing how well, he’ll slid into 26 weeks.”

right. it’s all very normal. so i decide that i’ll catch-up on some light nicu reading while my son remembers to breath, hoping that his brain stem continues to develop at a good clip over the next few weeks so he doesn’t have a to deal with forgetting for long. i find myself having to remember to not casually flip around the nicu “doorstop”. the first thing the nurse will tell you when you get the book is that you really shouldn’t just flip around to random pages and to just stick to what’s relevant to your current situation, as “you’ll just worry yourselves needlessly.”

day 6: first feeding II

after things settle down, eric’s nurse tells us excitedly that she thinks he’s ready to get his first feeding. and a few moments later, she’s attaching a syringe filled with colostrum to his endo-tracheal tube.

day 6: first feeding III

he quickly starts to wrap his hand around his air mask and feeding tube, looking quite content and breaking your heart at the same time.

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