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the eric update - day 79: ROP, apparently very, very real.

due to the facts that the new nicu is a little cooler than the old one and eric doesn't have that much baby fat, little odin needs a lot of help keeping warm, so we decided to bring in a blanket that he received as a baby shower gift. it's quite big, but it does a great job of keeping his temperature at acceptable levels. but of course, how well he maintained his temperature was the least of our concerns today.

right before his ROP assessment, kris talked to him and explained what was about to happen.

it's hard to tell in the photo, but the opthamologist had called ahead and they've put drops in his eyes which dilate his pupils and make him very sensitive to light. defying expectations, he didn't seem too bothered by the drops.

soon after his quality time with mama - his opthamologist, dr. droste, examined his eyes by placing a magnifying glass over each eye and looking into them. although we held out a small amount of hope that his condition was apparent, but not real, the good doctor concluded after a few minutes that the disease was progressing quite quickly and he'd need surgery soon to prevent complications such as blindness. eric now has stage 3 ROP with plus disease in all "twelve hours" of zone 2 in both eyes. my understanding is that the severity of the "plus disease" is necessitating the fast action. plain vanilla stage 3 ROP doesn't always require immediate surgery, but when the blood vessels become engorged or abnormally dilatated it's best to act quickly to prevent permanent damage.

tommorrow, the doctor will put a laser on his head and tap a button on the floor which will ablate ( or in opthamologist lingo, "burn" ) over 1,200 overgrown and abnormally tortuous blood vessels in each of his retinas. amazingly, the whole process is expected to take about an hour. despite the advanced stage of the disease, the doctor thought that eric had a good chance of escaping any permanent damage.

in an oddly calming tone, he said that they needed to do the surgery soon because even in just a few days they'd be "playing catch up", which is certainly not something you want to be doing when the stakes are eyesight. it's interesting to note that stevie wonder was born premature and went blind from the same disease, but much progress has been made in how to treat the disease since stevie lost his sight.

the good news is that they caught the condition so quickly. although his opthamologist said he had seen similar cases where the disease progressed so quickly, he professed that, "it didn't happen very often." and the really good news is that there must have been a miscommunication the other day because he expects eric to recover quickly and the ROP surgery shouldn't significantly delay his release date! there's a good chance that he'll need additional surgeries, but he doesn't need to stay in the hospital for monitoring.

if everything goes as planned, after a few days of recovery from the eye surgery, they are going to take advantage of the fact that he's already where he needs to be and schedule surgery for his hernia. hernia surgery is relatively routine ( although i know one reader in particular who could speak at length at how things can get un-routine pretty quickly ) and it also is not expected to significantly delay his release. so, if we can make it though a surgery or two unscathed, we'll be back on track for an early release, if not quite as early as we originally planned.

if you're so inclined, think good thoughts or say a prayer for us around wednesday at 4 p.m. (eastern time, u.s.a.), as we hope that dr. droste hasn't decided to have one too many cups of coffee.

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9/21/2004 11:07:00 PM 28 comments

28 Comments:

Thoughts and prayers headed your way!

By Blogger Da Goddess, at 2:14 AM  

From all of us also.

By Blogger Kirsty, at 2:58 AM  

Good thoughts your way from us. Andy had 2400 laser "blasts" in his right eye, and 3800 in his left eye. The surgeon said that was the most he had ever had to do. He had one more procedure in his right eye, and two in his left. Andy has vision issues, but is far from blind (just ask our dog). Have faith.

By Blogger Robb, at 3:05 AM  

My prayers are with you. I wanted to update you about a message I left a couple of months back (I work with EII). My cousin has a baby that was born with heart problems, he was taken immediately to U of M where he remains today. On Monday night we were blessed with a donor heart, surgery was completed by 7am Tuesday morning and everything is going well. We set up a website so that they could keep us updated, www.devinaddington.com.

Thank you for all of your well wishes and please know that we are all pulling for EIV!!!

Prayers and Gods Blessing
Angela

By Anonymous Anonymous, at 7:09 AM  

Just now reading this - did I get my days mixed up? It is already Wednesday so I assume Odin has had his surgery by now. I hope it all went well. My only experience with laser eye surgery was watching Jonathan (my husband) have it done. It is amazing that with a few blasts from a lazer and under an hour start to finish, a person can go from severely nearsighted to better than 20/20. So, I would guess that this is the best and least invasive technique for a preemie.

Interesting fact about Stevie Wonder. I have heard people say that he was born blind, so now I can correct them :) Odin is in my thoughts today as he recovers from his surgery.
Hugs
C

By Anonymous Anonymous, at 8:06 AM  

I'll be sending all the positive thoughts and energy that I can today. Well...I do every day but I will send some "extra" today. I am hopeful that the surgery will go very well, Eric IV will amaze us once again with his quick recovery time, and that he will still be home soon. I echo what Candy said the other day, I really wish I was there with you all too. All my love. Monica

By Anonymous Anonymous, at 8:18 AM  

I hope it all went well. My best wishes to you,

NordicMamma

By Anonymous Anonymous, at 8:44 AM  

d'oh! no, you didn't get the days mixed up - i just forgot what day it was when i was typing. i edited the post to accurately reflect that fact that he's having the surgery today, wednesday, at 4 p.m.

i also included more specific information on the severity of the disease for any ROP veterans that are reading. he has stage 3 ROP with "plus disease" in all 12 hours of zone 2 in both eyes.

By Blogger e3, at 9:53 AM  

More thoughts and prayer heading your way ...

~ laura

By Anonymous Anonymous, at 10:11 AM  

angela - thanks for the update, i'm so happy to hear that they found a heart www.devinaddington.com! that's such great news. thanks for the link, i'll definately be following along. i can imagine the type of rollercoaster ride you all have been on and my thoughts are with you.

By Blogger e3, at 10:17 AM  

jeez louise. i also forgot to mention great news that there must have been a miscommunication a few days ago and the ROP surgery isn't expected to significantly delay his release! so, after the eye surgery, they're going to schedule his hernia surgery (you haven't forgotten that he has a hernia, have you?) and in about 2 weeks, sans complications (knocking on wood), we should be back on track for breaking out of the nicu.

By Blogger e3, at 10:20 AM  

er. somehow i pasted the link back to the devin's site where i meant to put the word "donor". /scratches head/

By Blogger e3, at 10:29 AM  

Eric, Kris, and E4 (Odin),
good thoughts and prayers sent your way.
I placed a photo at work so the whole company could join in with good thoughts and prayers.
Rudy

By Blogger Rudy, at 10:35 AM  

Today at 4PM, I will be at the dentist catching up on some much needed dental work left over from spending 5 years in the Caribbean third world. I will close my eyes and think of Eric IV, healthy eyes and no more hernia - his last battles before going home. The picture of Kris explaining to him what is about to happen is so sweet. His eyes seem to appreciate the heart to heart talk - and it's obvious that he knows that Mom and Dad are making sure he gets the very best of care - physically and emotionally. He knows absolutely how much he is loved. I am grateful that the ROP was caught before damage insued. And, I have worried that the hernia could cause problems in the future. Glad to hear that these issues will be resolved making way for normal babyhood! Know that Nana, Kirk and I will all say special prayers today. Love, Mom

By Anonymous Anonymous, at 10:37 AM  

Grandson,
I took my sight for granted,
Then I met you;

I took each breath for granted,
Then I met you;

I took each heartbeat for granted,
Then I met you;

For all of the miracles we call life,
I thank you for making me realize just how precious they are.

Grandpa's best thoughts are always with you, but you can be sure that I will be on my knees in prayer at 4:00 today.

AML,
Grandpa E

By Anonymous Anonymous, at 12:56 PM  

Okay...Grandpa E's comments made me cry. So very beautiful.

How could little Odin help but pull through all of this with flying colors when he has so many people who obviously love him so very much?

Sending extra good thoughts to "the fourth" at 4 p.m. today.

Kelli

By Anonymous Anonymous, at 1:56 PM  

I am sorry to hear the news but I am glad they are on top of it. I will be thinking of you all (but especially Odin/E4) at 1:00 my time (I'm on the left coast).

Best wishes,
Becky

By Blogger Becky Sprecher, at 1:58 PM  

Aww-- Grandpa E- your post made me tear up. I will be praying for little E also today. I hope its ok that I started a prayer chain for him as well, so there are a ton of people cheering him on right now. Good luck little man. Eric and Kris, you will be in my thoughts as your little one goes through surgery today.

Brenda

By Blogger Tbog, at 2:08 PM  

Behold, I am the Lord, the God of all Flesh. Is there anything to hard for me? Jeremiah 32:27 Nothing is to hard for God.

In the day of trouble I will call upon You, For you will answer me. Psalm 86:6-7 God answer all prayers.

Thank you all so very much for these special prayers for Eric & Kris and Eric the 4th. May God Bless each of you as he has blessed our family with the love of family, friends and strangers.

By Anonymous Anonymous, at 3:02 PM  

Aha...it's today at 4 pm. In that case, in about 40 minutes time (10 pm local time), I will be thinking of E4 and sending waves of positive thoughts across the Atlantic. Good luck, Odin!

NordicMamma

By Anonymous Anonymous, at 3:22 PM  

I can't get to the end of the comments without tears. Best thoughts.

By Blogger pabilio, at 3:27 PM  

I hope its ok that I started a prayer chain for him as well, so there are a ton of people cheering him on right now. |

while kris and i don't officially advocate any form of support we accept all expressions equally, whether it's thinking shiny, happy thoughts, saying a prayer, doing a ceremonial dance, having a moment of silence or whatever. it's all good.

you all can feel free to keep those happy thoughts and prayers past 4 p.m. :-) they've started an IV, but they haven't put the drops in his eyes that need to be put in 30 minutes before the procedure, so the actual time surgery might slip a bit off schedule.

many, many thanks to everyone who has commented or sent an email today.

By Blogger e3, at 3:31 PM  

o.k. the surgery started on time and they started the prep at 4 sharp. he's under "conscious sedation" via combination of ketamine and a drug that begins with a "V" that i keep forgetting. verden? valden? essentially it induces and amnesia-like state. unfortunately the combination of drugs, perhaps not surprisingly, will make eric forget to breath more often than usualy. so while we don't get some of the risks of being intubated on the vent, they will have to "bag" him several times during the procedure.

By Blogger e3, at 4:44 PM  

Been there, done that. (sorry, I just feel that everything will be cool with E4) He will be looking for a bottle soon after coming to. You will be very surprised as to how quickly he will be back to normal. I am lost as to why this and a hernia would keep him in the NICU any longer than 2 weeks, though.

By Blogger Robb, at 5:10 PM  

My prayers are always with you 3!

Brittany from Florida

By Anonymous Anonymous, at 6:41 PM  

To e4

"somehow you'll escape
all that waiting and staying.
You'll find bright places
where the Boom Bands are playing."

mfromohio

By Anonymous Anonymous, at 8:58 PM  

We are hoping all is well here on the other side of the state.

Chris in Ann Arbor

By Anonymous Anonymous, at 9:03 PM  

>under "conscious sedation" via combination of ketamine
>and a drug that begins with a "V" that i keep
>forgetting. verden? valden? essentially it induces and
>amnesia-like state.

Not that it matters terribly much at this point, but that would be versed. Very useful medication ,especially in surgery and procedures on infants and children.

By Blogger Becky Sprecher, at 5:17 PM  

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"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."

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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.



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