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.

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