snowdeal logo

archives archives

ex machina


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

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.

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.

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 significatly 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 :-) ).

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.

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.

we won't soon forget his nurses and i suspect they won't forget him either.

bookmark: del.icio.us ::digg it ::furl ::reddit ::yahoo ::
9/19/2004 11:44:00 PM 7 comments

7 Comments:

Happy 11 week birthday to Eric IV - and happy shower day to Mom and Pops! Like Candy, I wish I could have been there. I am saying prayers that the signs of ROP are indeed apparent but not real. I have been envisioning his eyes healing spontaneously in a surprise Odin event! If surgery is necessary, it sounds as the recovery may not be as long as the predicted 6 weeks. Everyone is praying so hard for him - so many positive thoughts - I know that he will do well.

A special thanks to Katra (I'm Eric III's Mom). Her descriptions of her experiences have made a huge difference - beyond words - in helping our family put the roller coaster ride of the past 2 and 1/2 months into perspective. Her words have given us hope each time the going got tough - soothing to the soul as we face another disappointment. And, she cheered on during his amazing progress. Knowing the long road that she has traveled with her micro-premie, lets us know just how lucky we are. I have a deep respect for her strength and courage to share such emotional times with us. I cried when I read her description of her saga with breast-feeding. When Eric III was born in 1972, I was not allowed to breast-feed him. It wasn't even considered an option. I was disappointed - perhaps more than I thought considering it was a very long time ago - but I knew I was the luckiest person alive. My baby was alive and thriving. And, I recovered from a massive amniotic embolism accompanied by DIC (disseminated intravascular coagulation). I was the first in the country to survive such an embolism at that time. Eric III was the happy ending then. And, one day sooner than you think - Eric IV will be home and in your arms - just the way you have been dreaming about. Eric III's life began with a miracle - so it will be for your son too. Love, Mom

By Anonymous Anonymous, at 11:14 AM  

Little Eric was on my mind all weekend, as well as in my prayers. I hope that the neonatologist is right, and that the diagnosis isnt as severe as they think.

Wow-77 days. Seems like just yesterday that Candy posted about Little Eric being born. It only took one look at your special little guy to make me and many, many people fall madly in love. :) There are SO many people pulling for Eric and for your family. He has made it through so much already, and I feel confident that this too will pass. Please know that you have one special little boy there, and like his father , he too will beat the odds.

Brenda

By Blogger Tbog, at 12:42 PM  

My lovely living boy,
My hope, my hap, my love, my life, my joy.

Guillaume de Salluste Du Bartas
Second Week, Fourth Day, Book ii.



good thoughts frm yr friend the hole in the ground.

By Anonymous Anonymous, at 2:59 PM  

Hi you guys,

As you might have noticed (probably not since you have other things on your mind at the moment!) I have been catching up with Eric's progress as I got married on 9/11 and just got back to work late last week.

I'm sorry to hear about the possible (potential?) ROP. I hope it is nothing. We managed to escape that particular complication, but we were familiar with lots of preemies in the NICU at the same time as us who were transferred to various facilities for laser surgery etc. I really hope that it turns out to be nothing.

About breastfeeding... When I had Ricky I pumped endlessly only to find out that because of his CF they wanted him to be on a special ($20/can!) formula called Pregestimil. It turned out to be the best thing for him, but I was terribly disappointed. I found out later that lots of CF babies actually do well on breast milk, but too late for Ricky. I did donate all of the milk to our local mother's milk bank so at least it did not go to waste.

I got some postcards on my honeymoon and want to send one or two -- would it still be okay to do this, and what address should I use?

I am thinking positive thoughts for you all, that E4 gets back on the track to going home ASAP! And for no ROP!

Becky

By Blogger Becky Sprecher, at 3:04 PM  

I have the same question. I've wanted to send a postcard for a while now, but have been a bit slow. Where may I send one?

Does Eric like animals? :)

By Blogger Amanda, at 4:14 PM  

There is a link at the top of all the posts (it is highlighted yellow) that will take you to the address.

By Blogger Robb, at 4:34 PM  

Hi from one of your friends at Nursing Mom.Net!
Our now seven month old twins in the NICU for a month after birth.
Hope that the transfer went ok. Are you guys planning on changing the address for the post cards?
Will he be returning to the origional NICU?
We were planning on sending in a post card but as one of the twins was having surgery it has been a bit crazy. The older three kids voted instead to send a gift off your Babies R Us list instead (although we are still going to senda post card for his book) Don't worry, it didn't show us your real address :)
Hope he likes it-
Ryan and Sarah G. in Southern California

By Anonymous Anonymous, at 10:17 PM  

Post a Comment


[ rhetoric ]

"it is hard to be brave," said piglet, sniffing slightly, "when you're only a Very Small Animal." rabbit, who had begun to write very busily, looked up and said: "it is because you are a very small animal that you will be Useful in the adventure before us."

the complete tales & poems of winnie the pooh

[ about ]

this site chronicles the continuing adventures of my son, odin, who was unexpectedly born on the fourth of july at 25 weeks gestation, weighing 1 pound 7 ounces.

he's quite a fighter and you can always send him a postcard to the most current address listed here if you're inspired by his adventures. see the postcard project/google maps mashup to see a map of the postcards.

if you're new, you can browse the archives to catch up. and don't forget to watch a few movies that i made while we were in the neonatal intensive care unit. or if you want the abridged version and you can find a copy, you can read about his adventures in the november 2005 issue of parents magazine.



[ search ]

[ outbound ]

daddytypes / blogging baby /

rebeldad / thingamababy / The Continuing Adventures of Super-Preemie / dooce /

[ schwag ]

look snazzy and support the site at the same time by buying some snowdeal schwag!

[ et cetera ]

valid xhtml 1.0?

This site designed by
Eric C. Snowdeal III .
© 2000-2005