Tag Archives: rop

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

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.

the eric update – day 76: the curse of the nicu.

day 76: the curse of the nicu

a micropreemie mom once told us to never let them know that they’ll be going home soon because they’ll always find a way to prove you wrong. “don’t tell them until they’re strapped into the car seat.” she said.

“it’s the curse of the nicu.”

just yesterday, standing next to eric’s bed, his neonatologist wanted to remind us just how remarkable eric was doing and said with a beaming glint in eye that he had never, not once in his 27 years of practicing neonatology, released a 24 or 25 weeker before their original due date.

“but eric definately won’t be here in two weeks.”

none of us could imagine just how true that statement could be and yet still be so wrong.

this morning, after weeks of passing his retinophathy of prematurity tests with flying colors we discovered that the disease has appeared and in progressing much more quickly that is normal. unfortunately, it’s progressing so quickly that he will need to be transferred to a specialized facility on monday ( originally they were going to transfer him on sunday, before i doth protest too much since that also happens to be, cruelly enough, the date of our baby shower ) to prepare for eye surgery. he’s back on the nasal cannula and supplemental oxygen because it can help slow the progression of the disease before surgery.

in a staggering bit of randomness, he initially passed his exam today and as the eye doctor was leaving he decided to put fresh batteries in the light he uses to shine in odin’s eyes. fresh batteries and a brighter light revealed the seriousness of the situation.

while i had expected him to develop some form of the disease since it’s so common in micropreemies, nobody had expected it to get this badly this quickly, considering the nicu’s otherwise stellar track record of ROP outcomes. you know it’s a shock when even the nurses start crying.

perhaps even more devastating than the news of the surgery itself – the eye surgeon told us to not expect him to come home for about 6 more weeks.

veteran nicu parents know that this is a classic example of one of the last exciting twisty turns on the micropreemie rollercoaster, but that doesn’t make it any easier when your right in the midst of the ride.

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 47: 3 pounds! no ROP ( yet )! the return of the nasal cannula!

day 47: 3 pounds! I.

wow! a mere 16 days after hitting 2 pounds, eric weighed in at 1370 grams tonight! or 3 pounds 0.3 ounces! it’s absolutely stupendously amazing that he’s gained a whole pound in such a short time, especially when he’s been so sick.

day 47: 3 pounds! II.

i guess he really does have the snowdeal genes, since putting on weight has never really been a problem for generations of snowdeal men. it’s amazing to see how quickly his appearance is changing on a day-to-day basis with the weight gains.

day 47: plumpy.  I.

eric is also getting 4 cc’s of breastmilk every 2 hours. he has a long way to go to be considered on “full feeds”, as he’d need to be getting about 19 cc’s of milk every two hours before they’ll discontinue his IV completely. still, he’s making great progress and seems to be tolerating the milk quite well.

day 47: plumpy.  II.

and he has a mere 2 days left on his antibiotic regime to treat the pneumonia and suspected sepsis. interestingly, after all the hullaballoo surrounding the sepsis it appears that the gram negative stuff they found in the yeast culture was likely a contaminant. i guess that’s the way it works sometimes.

day 47: back on the nasal cannula. I.

also, the eye doctor came by for his regular ROP checkup and didn’t detect any sign of abnormal blood vessel growth in his retinas. while this is great news, the doctor felt the need to warn us that not only was eric not out of the woods – he wasn’t even in the woods yet! now that’s some smooth bedside manner. he then stated matter of factly that eric’s most vulnerable stage will be between 33 and 39 weeks and that most 24 and 25 weekers will develop stage I or stage II of the condition. so, once again, while we’re extremely happy that his eyes are fairing well, his next few checkups will be the ones that will really give a better idea of if he’ll develop ROP.

day 47: back on the nasal cannula. II.

and just as we suspected, they’ve started testing eric out on the nasal cannula again, with 2 hours of nasal cannula, followed by 6 hours of cpap. and despite my many attempts to miminize the appearance of one of the side effects of the cpap mask, sometimes it’s impossible to hide the conehead that he can get from the tight cpap straps pushing against his very soft head.

he seems to be tolerating the nasal cannula very well and is continuing his streak of remaining alarm free! that’s right – he hasn’t had a single incidence of apnea or bradycardia. it really is hard to believe that he’s showing such great improvements in such a short period of time. i guess it’s hard to remember that things can get better just as quickly as they can turn for the nurse. such is the way of the nicu.

the eric update – day 34: no ROP (yet)! a kilo! wet dogs. and flowers.

day 34: a hand hold with piglet

eric seems to be stabilizing quickly. he only had 6 alarms today, which is a lot better than the 36 he had just a few days ago – and many of those alarms were induced the nurses “meanie” sessions where they due all manner of not fun things to him. and he’s continuing to pack on the weight; tonight he weighed in at 1020 grams which is 2 pounds 4 ounces and means that he’s finally, officially hit the kilo mark! hooray! his breathing also seems to be getting more regular and stronger, which means that they’ll probably try to put him back on the nasal cannula soon.

we were also surprised to find that his eye specialist came by for eric’s initial visit to assess whether or not he any signs of retinopathy of prematurity (ROP). we were surprised because we weren’t expecting to see the eye doctor for another week or two. i guess they like to check micropreemies early and often. the absolutely fantastic news is that the doc says that his eyes are “perfect” right now! that said, the doctor cautioned us that it’s nearly a certainty to see some manifestation of ROP in a micropreemie, so they are going to keep a close eye on him ( ahem! it’s an eye specialist joke! ) in the coming weeks.

other than that, all was quiet on the nicu front. we still haven’t been able to resume the kangaroo care, but hopefully that will change over the next day or so.

a day at the dog park. II.

and i have photographic proof that kris and i are trying our best to regain some semblance of our normal schedule. today, we had a little free time and we went to the dog park. our city isn’t very dog friendly, in terms of official dog parks, so we had to become members of a private dog park; prior to eric’s birth we were dog park “regulars”, but haven’t been able to find time recently for all the obvious reasons, much to the dismay of our two dogs. so, today, we were finally able to enjoy a little time away from the nicu with the dogs.

a day at the dog park. I.

a day at the dog park. III.

a day at the dog park. IV.

bees do it

and we even stopped to smell the flowers. even if they weren’t roses.

a small, red flower made quite large

the eric update – day 22: a day of the (extra)ordinaries

day 22: lounge act

here’s to hoping that i can continue with weeks and weeks of posts that are as boring as this one. nothing much extraordinary happened. well, nothing much beyond a relaxing day filled with five hours of kangaroo care with kris, a diaper change from yours truly ( the second one! kris is not exactly quick draw mcgraw with the camera so we don’t get to see any pictures of me changing him. sniff. ), a bit of eye contact now and then and some quality reading time. of course, he still likes throwing out the occasional “a’s” and “b’s” ( nicu lingo for apneas and bradycardias ), but none of them were long enough to make him turn gray or blue, so that’s progress.

i don’t know how he does it, but he seems to spend a lot time trying to impress upon you just how comfortable he is despite it all. trust me. you know when he’s not comfortable. like when he gets done with kangaroo care. then he turns into a writhing mass of clenched fists and thrusting feet while emitting little squeaks.

day 22: watcher

i like how he tends to open his eyes when i come to his beside to visit. his eyesight is probably no better than 20/600 so it’s best to stand 6-10 inches away. he’s getting better at staying focused on the center of your face when you talk, but he also tends to let his eyes wander around the periphery of your face, which is fairly “normal”. i think in about 3 weeks he’s going to have a set of tests from an eye specialist who is going to be looking for signs of a common problem in micropreemies known as retinopathy of prematurity, which is caused by abnormal blood vessels in the eyes. as with most conditions, there are many different stages and manifestations and variable degrees of success from a cadre of treatment options.

it’s my understanding that he’s at a decreased risk for ROP because his “oooohs” ( nicu lingo for the percentage of oxygen that is added to the air going through his CPAP mask ) have always remained remarkably low. in other words, the staff doesn’t have to add much oxygen for him to have and adequate supply in his blood. while oxygen is obviously important, too much of a good thing can cause abnormal blood vessel growth.

but one must always remember that decreased risk does not mean no risk; for now, it’s impossible to know if he has any manifestation of ROP, so it’s strange to look at his beautiful eyes and wonder if there are problems lurking ahead. it’s just one more thing that you try to prepare yourself for, while still attempting to enjoy the moments you do get to look into his eyes.

day 22: call of the wild

in addition to some reading about pooh, eric very much enjoys being read “call of the wild”. for some reason he identifies with buck, a courageous dog, who is ripped from his cushy surroundings and forced into a life-and-death struggle in the alaskan wilderness where he must learn how to use his wits to survive.

day 22: footsie

after all the heaviness inherent in buck and his amazing adventures, eric finds the time to enjoy a light game of ‘footsie’. well. o.k. it’s not really footsie, but it’s the best we can muster at the moment.

notice that piglet really, really wants to play along too.