Tag Archives: hand

the eric update – day 94: waiting patiently. too much rice.

day 94: curled hand with creases

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.

day 94: a nose, an eye, a hand and an ear.

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 🙂

day 94: moussed hair

kris has given him another bath and put cream in his hair and on his hair to help prevent a condition known as cradle cap. the cream makes it appear as if we’ve moussed his hair.

day 94: measured

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.

the eric update – day 63: nine weeks! still no ROP ( yet ). postcards.

day 63:  nine weeks old!

yes, indeed, today was eric’s nine week birthday and by almost all measures it was a fairly quiet day. he’s slowed down on his weight gains and was only up 5 grams over his weight yesterday. the neonatologist has noticed he’s not adding weight as quickly and has therefore once again supplemented his breastmilk with fortifier, which adds 4 calories per ounce without adding any substantial volume. those 4 calories make a big difference, so we should probably see eric start to put on weight again in the coming days.

day 63:  hand on hairy head.

regular readers might remember that eric was due for another exam to determine if he is developing an eye condition known as retinopathy of prematurity. i’m happy to report that there is still no evidence of ROP, which is fastastic news! eric’s eye doctor said after his last test that not only was eric not out of the woods – he wasn’t even in the woods yet. i think now he can be said to be standing on the edge of the forest and he’ll still be at high risk for developing ROP over the next three to four weeks. it’s a great sign that he hasn’t shown any signs yet, but we still have a few more tests to go before we can confidently state that he won’t develop some manifestation of ROP.

we missed the eye doctor during the exam and had to decipher his handwritten notes after he left. somewhat disturbingly, he indicated that there was cloudiness in eric’s ocular fluid in both eyes, but none of the staff could say if this was something to be concerned about or if it was a normal developmental stage that would diminish over time. nobody seemed overly concerned with the note, so we’ll remain calm until we’ve had a chance to clarify the issue with the specialist.

and yes – we’re still getting postcards!

the eric update – day 46: many more postcards. no alarms (almost). and a little ‘roo time with pops.

day 46: where's the dimmer switch?

well, it looks like we’re back to having days where the biggest news came when we received 16 postcards all at once! i had joked with the staff yesterday that perhaps the mailroom got sick of running his cards up to the nicu and maybe there was a kernel of truth in the joke, since some of the postmarks were from 8 days ago. regardless, we finally did get them all and we’ll enjoy reading them to eric over the next few days. thanks again to everyone two has taken the time to send a card ( or two, or three! ). as always, it makes our day that much more special to be able to read eric postcards from all over the world.

in the above photo, as always, eric isn’t too subtle about letting you know that the lights might be too bright.

day 46: broken fingernail and glue

clinically, eric had a – thankfully – boring day. i forgot to mention that he didn’t have a single alarm yesterday and he would have kept the streak going today had it not been for a tantrum after his “eight o’ clock meanies”. at eight p.m. his nurses do the various things that nurses have to do and tonight he let us all know that he was none too happy with the situation. he got really mad and when he gets really mad he’ll decide that breathing isn’t too high on his priority list. the nurses have come to expect eric to be “naughty” ( a common nurse euphemism for when babies are being uncooperative ) at such times and don’t really count it against him on his permanent record.

eric is getting three cc’s of breastmilk every two hours and if he keeps tolerating the milk, i think it’s reasonable to expect that he’ll be back on “full feeds” ( meaning no intravenous fluids ) by the end of the weekend or early next week. obviously, with his gut shutting down last week, they are monitoring him very closely for signs of necrotizing enterocolitis. so far, all signs indicate that he’s tolerating the feeds quite well.

day 46: handus enormicus

eric’s hands and feet were looking a little puffy, which partly can be explained by water retention as a consequence of the intravenous drip. however, his hands looked very puffy and likely related to relatively minor issues with his IV line. due to a variety of reasons he’s been having troubles with the line being put in his hands so after trying a few different locations on his hand they decided to move the entry point to his foot. in the end, they found a spot that seemed to agree with him, but not after leaving a few battle scars on his hands.

day 46: testing my pulse?

in addition to 2 hours of kangaroo care with kris, i remembered to wear an appropriate shirt, so i was able to spend about an hour of quality time with eric, doing the ‘roo.

and finally, kris gave eric a brief bath today without his cpap mask ( meaning he didn’t have any respiratory aid ). he didn’t throw a single alarm and his blood oxygen looked great, which prompted his nurse to make a clinical note that they might want to think about putting him back on the nasal cannula ( the nasal cannula requires more work on eric’s part than cpap and is considered to be the last phase of “assisted” respiration ) sooner than they originally planned. woohoo!

the eric update – day 36: stabilizing. gagging. and just a bit of jealousy.

day 36: bearer of the ring. II.

eric spent the day stabilizing. as quickly as things started falling apart, they appear to be coming back together, thanks to the fast response of his care team. he’s still on the vent, but amazingly, he’s doing so well that they they’re just letting him cruise to give him a rest while he fully recovers from the infection. his differential blood counts are all returning to normal and there’s still no sign of bowel perforation. we’ll never know what caused his skin to start to slough off. nurse debbie said it might not have even been an infection at all, but rather a circulatory issue. micropreemie skin is so delicate that small changes in circulation can cause the skin to deteriorate.

day 36: gagging

there’s certainly no doubt that eric’s gag reflex is developing quite well, as he spent much of his waking time choking on his endotracheal and od tube which releases air from his stomach. although he was relatively comfortable, it was still quite difficult to sit by his bedside and watch him gag on his tubes over and over again. they could have taken him off his vent today because he doesn’t appear to need its help for breathing, but they want to let him get a little more rest while he’s recovering from his infection. from where we’re sitting it’s hard to see how he’s able to rest while he’s gagging, but i guess that’s the way it goes.

day 36: yet another transfusion

he got another 10 cc’s of blood. they are taking a lot out of him since they are running a bunch of bloodwork to monitor his infection. whatever they take out, they have to put back in.

day 36: blood pressure

whenever they give him a transfusion, they monitor his blood pressure closely. the white cuff on his right leg is pressurized, which is making his foot red. eric doesn’t like this one bit. if you look close you can see that he’s squeezing his fist and pushing it against his thigh, while sucking a bunch of air in his belly and kicking up his left leg.

no, he’s not happy at all. soon it’s all over.

day 36: get this blood pressure cuff off me!

he’s wriggling his foot as if he’s trying to kick off his cuff.

day 36: cuffed leg and hand

so, other than a little gagging and a transfusion or two, it was a fairly quiet day. i suspect in the next day or two, eric will be back on the cpap and start feeding again. maybe we’ll even get to start kangaroo care.

day 36: transfusion stopcock. I.

today, we also had to deal with an issue that any nicu parent faces – comparing your child to those around you. it’s one of those things that you know you can’t do, but which is basically impossible not to do. in our case, one of the new admits across the way happens to be a 27 weeker who came in at 1 pound 9 ounces.

day 36: pampers (tm). III.

he’s aready on nasal cannula full time and graduated from a radiant warming bed to an “isolette”, which means that the don’t think that he’ll require as much intensive care as eric still requires.

day 36: pampers (tm). II.

while we’re tremendously happy for the 27 weeker parents, it’s hard not to feel jealous at how much difference two weeks can make, as we watch eric gag on his ET tube.

the eric update – day 35: i want off this ride.

day 35: resting on the vent

three hours. that’s how quickly things can go to hell in a handbasket. we left at 11 p.m. last night, as confident as ever that we had escaped any problems which seemed to be lurking in the background all week long; by 2 a.m. several of eric’s systems were failing all at once and by 4 a.m. there was serious concern that he might have a perforated bowel and they were getting ready to transport him to the other nicu in town for emergency surgery. at the time, apparently the only thing that kept eric from being transported was the fact that the surgeons said that they wouldn’t do the surgery on him because he was too small to survive.

day 35: raised fist

the following twelve hours were filled with as many, if not more, emotional ups-and-downs than the night eric was born. as the complications were delineated it became apparent that he had not one, not two but three calamitous events occurring, two of which were characterized as rare. the most acutely dangerous event was known as a strangulated hernia ( ironically, the determination that he did, in fact, have a hernia was considered so uneventful that i decided not to post such boring news right away ), which happens when fecal matter gets pushed into the herniated bowel and can quickly lead to a perforation. and the last thing you want with a micropreemie is a hole in the intestine, leaking fecal matter and air throughout the abdomen. it’s quite uncommon to see a strangled hernia in a micropreemie; only one of the nurses could remember an occurrence, 7 years ago, and couldn’t remember having seen any prior incidences. somehow the neonatologist was able to unstrangulate his hernia by holding him upside down and pushing and poking at the hernia. in a very understated way, the neonatologist would later allude to just how lucky we were that her improvised unstrangulation technique worked, as i’m not sure what would have been done since it was already determined that they weren’t going to perform surgery on him on account of him smallness.

day 35: pigs in a blanket. II.

why was fecal matter being so forcefully pushed through his hernia? because it didn’t have any place to go as his bowels were shutting down and everything was stopped from moving along normally. in addition to creating a strangulated hernia, his backed up bowels quickly began pushing on his lungs, which stopped his breathing and necessitated eric being put back on the vent. and why were his bowels shutting down? a quick blood panel indicated that he was quickly getting an infection ( as evidenced by an increase in immature neutrophil cells or bands ), and his body began shunting blood away from his bowels and towards other areas in preparation for a battle royal. routing blood away from the intestines is likely a good strategy most of the time, as who has time for eating when you’ve got a bad infection, right? unfortunately when you’ve got 7 cc’s an hour of breastmilk coming in and blood moving out, you’re actually creating the best possible conditions for necrotizing enterocolitis.

day 35: arms crossed.

as if a strangulated hernia, backed up bowels and a worsening general infection weren’t enough to make for an exciting night, the nurses discovered that while they were trying to unstrangulate his hernia, his skin was sloughing off. yes, you read that word right, his skin was falling away. disintergrating. and creating a festering mess. for a little thought experiment, try to imagine having to absorb the word sloughing at 4 in the morning. at the time the disintegrating skin was perhaps the scariest news, because nobody had seen anything like it. nobody. in the morning nurse jan confessed that she hadn’t seen it in 22 years of working in the nicu. even the infectious disease specialist hadn’t seen anything like it.

oh, how we were wishing for good old days, when the worst we had to worry about was whether or not he’d be put back on the vent.

day 35: by the light of observation lamp. I.

so the day was spent trying to come to grips with how quickly and how completely everything had fallen apart, as we tried to stay focused on how his clinical pictures was changing from moment to moment. an antibiotic regime was started to help fight the general infection and they decided to treat the mystery topical infection with pretty much everything they had as they were lacking any any definitive specific lab results ( no trace of yeast in the infection and no bugs are caught growing; the lack of any yeast was described and bizarre, since you’d expect to see some and as we learned in the past, it’s not that surprising to not catch the bugs ), they decide to treat it as if could be anything, which i guess is just about the only thing you can do. as the day wore on, his blood counts began to slowly return to normal and by the evening almost all evidence of the skin sloughing had disappeared.

day 35: by the light of the observation lamp. II.

it’s hard to describe the feeling that you’re left with as you realize that the wreckers of such rare havoc are going to fade away without you ever knowing their names.

day 35: lots of x-rays.

it took quite some time for the neonatologist to rule out a bowel performation, as the regular x-rays kept showing large amounts of air in his bowels and it was difficult to know if the air was inside or outside the intestine; a specialized x-ray machine was hauled in which could more easily allow them to determine if the air was moving as he changed positions, which would mean that it was floating around his abdominal cavity.

day 35: hand lines

as luck would have it while the film was being processed, there were two more admits to the nicu, which meant that we had to sit around, wondering when they’d get a free second to review the results and release us from the purgatory of not knowing if he had a perforation. eventually, the neonatologist rushed in and exclaimed that everything looked great and that we were out of immediate danger for now.

day 35: content despite it all.

it’s funny how quickly you can reset your personal expectations as to what constitutes good news. before we left for the night we watched eric resting comfortably on the vent, feeling a sense of relief to see him so peaceful while pondering the irony that today’s good news would have been yesterday’s catastrophe.

day 35: fingers

many, many thanks to all of eric’s wonderful caregivers whose attentive observations and quick, accurate actions helped to avert what surely could have been a disaster. i’ve said it many times already, but i have no idea how you do what you do.

day 35: earscape

the eric update – day 25: a tantrum and a little perspective.

day 25: the tantrum I.

with eric IV looking quite content much of the time ( except, of course, when his care routine requires that not-so-fun things are done to him ), i found myself wondering when he was having those tantrums that preemies are famous for. sure, he can get worked up sometimes, clenching his fists and thrusting his feet and making little squeaks. but i we’ve never seen a full-blown, let-out-all-the-stops tantrum. not that you want to see a tantrum, but still. and so, with perfect timing, soon after i arrived this evening, eric decided that something was not right ( of course, it couldn’t have been my voice. no, certainly it wasn’t that ) and started trying to launch himself right out of the bed. and the screaming. if there was any doubt, him pipes are developing well. this went on for about a minute and no amount of consolation from me or kris was helping one iota.

day 25: the tantrum II.

that’s when nurse jan decided it was time to bring in the passifier, because if he has a tantrum for too long then he’ll stop breathing and that’s no good.

day 25:  big hand.  little hand.

the only problem is that he doesn’t really know how to suck on the passifier and breath at the same time, so it’s a delicate balance. eventually, he figures it out and i rest my hand on him, which helps a little too, i guess.

day 25:  postcards

the postcards have started coming in! i’m not sure the nurses believed me when i told them that he was going to start getting cards from all over the world. we’ve just received a few so far, but is suspect they’ll be trickling in for awhile. we were very touched by the kind story from a nice person we don’t know who hails from santa clarita, california. it’s going to be hard to maintain my cynical side if people keep up with such random acts of kindness.

day 25: more 'roo

kris is continuing with her record setting ‘roo sessions. she might do two sessions a day at about 2 or 3 hours apiece ( i bet she’d go longer, but that’s the longest she can go before she has to “pump” ). as i said yesterday, there are many factors involved in how well eric is doing, but i really think all the kangaroo care is big factor. we’re fantastically fortunate that kris can spend so much time in the nicu. she teaches at the local college and has the summer off, so she can spend as much time as she likes with eric. and of course, she likes to spend a lot of time with him ( not that i don’t, silly. you know what i mean. ).

day 25: bearer of the ring

ahhhhhh. it’s the ol’, “put your wedding ring on his diaper to give a sense of perspective” trick. with all the close-ups, it’s easy to forget just how small he still remains ( although he has grown 3.5 inches centimeters ( arrgggh. there’s a big difference between inches in centimeters. i think 3.5 cm is a little over an inch. ) since birth. yeah!).

the eric update – day 13: a mostly lazy day

day 13: holding hands

today was a very boring day with not a single, solitary alarm; well maybe this is not quite true actually, as the nurses will typically induce apnea during some of their procedures, but nobody counts those. except maybe for eric.

he’s still on the vent, but they are continuing to gradually reduce the settings and suspect that perhaps over the next few days he might be able to go back to the less abusive CPAP regime. this is surprisingly good news, because the staff has been suggesting for the past few days that he could possibly be on the vent for a couple of weeks.

and his infection seems to be getting better. there’s still no definitive results to indicate what sort of infection he might have, but all of his differential blood counts are looking more positive and his blood sugar is normalizing.

during a quiet moment, i catch kris holding eric’s hand/arm. he just had a few procedures done that he didn’t care for and she’s using a technique that the nicu staff taught us to calm him down – i.e. he feels more secure when you firmly hold his arms and legs against his body. it gives him a sense of boundary that he got used to in the womb.

day 13: wrinkled II

so, with a lack of white-knuckle events to pass the time, we found ourselves enjoying just sitting around his bed, reading more from winnie-the-pooh, talking with the always informative and mostly cheery nicu staff and just generally having what passes for a lazy saturday these days.

it’s amazing how much his skin changes from day to day, depending on whether or not he’s received a transfusion or how much fluid he’s retaining.

today he seems particularly wrinkled.

every so often he’d open his eyes and watch me taking pictures, but he didn’t seem to want to keep them open for long.