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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

the eric update: the best day. evah!

day 4: first look

nothing but good news today. early in the morning, the doctors decided to take kris off her magnesium sulphate and discontinue her IV completely. so no more tangled mess of cords coming out of her. and her labs all look more positive, so i think it’s safe to say that she’s starting the “normalization” process. she’s eating regular solid foods and even has real pajammas on, so that all makes her happy. and in the evening she finally got the go-ahead to take a shower. i guess the novelty of a sponge bath wears off pretty quickly.

day 4: first touch

day 4: getting acquainted

even better – kris got word that she could see eric! despite all the pictures, her initial reaction was to gasp at how small and fragile he appeared to be amidst all the equipment. we stayed for about an hour and watched as they prepared to put him on a new ventilator. we talked, and touched and even saw him open his eyes!

day 4: eyes open

that’s right, his eyes were fused shut and nobody was expecting him to open them for another week or two, but i guess he’s enjoying proving everyone wrong. he’d struggle to keep them open and slowly start closing them, until i’d say his name and then he’d try to open them again.

day 4: first family  portrait

the new ventilator is a big step for him. he’s been on what is known as a high frequency oscillator which rapidly causes his chest to rise and fall as it helps him take 300 to 400 “breaths” a minute. this is absolutely necessary when he first arrived, but he shouldn’t be on it for too long as it can affect his long term lung capacity. so, it’s a really good sign that he’s on a new vent called a “baby log” which is in “continuous positive airway pressure” or CPAP mode. so no more oscillating and he’ll essentially be doing most of the breathing while it’s in CPAP mode. this is another big stabilization step, so it’s fantastic news. he will probably be on his new ventilator for awhile. or not, i guess, considering how much he enjoys beating the odds.

the new ventilator arrives

[ update: he’s been on the new vent for a few hours and he doesn’t like it so much as his blood gasses started looking bad – mainly due to him forgetting to breathe. so they’ve taken him out of cpap mode and put him in ‘pressure support ventilation’ (PSV) mode with a volume guarantee (VG) of 3 cc’s and a backup rate of 44 breaths a minute. so essentially if he forgets to breath, the machine ensures that the makes 44 breaths a minute and it also makes sure that he’s getting 3cc’s of air, which is about the capacity of his super small lungs. ]

and, proving that he really does have snowdeal genes, they started giving him caffeine today which he seemed to enjoy. i always said that you can’t start drinking caffeine too early or too often. no, they aren’t trying to create a coffee addict, but rather the caffeine somehow helps him to remember to breath. micro-preems apparently have a bad habit of forgetting that they aren’t in the womb and simply forget to take breaths. it’s not unusual for babies to be released and still be on a caffeine schedule as they are still forgetting to inhale.

day 4: adjusting his shades

he’s been under the “jaundice light” again today and he’s looking a little yellow, but that’s completely normal and the least of anyone’s concerns.

day 4: finger and foot

thanks so much too everyone who has sent flowers. they kept coming yesterday and today and we’re starting to look like a regular florist shop. the room is really fragrant and nurses and been poking their heads in because they can smell the flowers all the way down the hall. word has spread around the floor and everyone is so surprised at the amount of support she’s getting. in just the hour that we were in the nicu seeing eric, she received six arrangements, and was obviously very happy. again many, many thanks to everyone for sending the flowers. considering how much she’s improved in the past 24 hours, i’d say the plan worked perfectly.

flower power

in fact, you all can stop sending flowers because there’s a small chance that she might not be here to get them. amazingly, she’s making such rapid progress, that they are hinting that she might be released tommorrow evening. if not tommorrow, then almost certainly on saturday. her recovery is simply amazing as it’s not uncommon for the preeclampsia “10 percenters” to take weeks normalize.

lots and lots of people all over the world have let us know that they’re sending us good thoughts in whatever way seems appropriate for them and i must say that while i’m typically a skeptic’s skeptic, it certainly doesn’t seem to be hurting; we’ve had nothing but good news and both eric and kris are making surprising recoveries.

but while kris is clearly out of the danger zone, eric still has a tough road ahead. amongst many other impending issues, everyone is going to be very vigilent about infections. one bout of pneumonia can wipe out all this wonderful progress.