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

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.

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.

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.

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.

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7/26/2004 11:17:00 PM 20 comments

20 Comments:

Here's to Piglet, footsies, and "ho-hum" days.

By Blogger Da Goddess, at 12:21 AM  

i second that! i hope to drive away all the visitors with excruciatingly boring, "ho-hum" posts, day after day. one can only hope....

By Blogger e3, at 12:40 AM  

Hi E3 and E4,

I have been following E4's birth from the very beginning. I was born 6 weeks early, at just over 4 pounds, and my roommate, who was a twin, was born at 25 weeks weighing just over a pound. My roommate had surgery when she was 2 to correct her retinas, but has had no other long-lasting effects. We are now both students at Penn in Philadelphia and will be cheering for E4's recovery. We will also send you a postcard from Philly, in the hopes that one day you will be an Eagles fan (that was for E4).

Melody

By Anonymous Anonymous, at 3:31 AM  

Hi E3 and E4,

I have been following E4's birth from the very beginning. I was born 6 weeks early, at just over 4 pounds, and my roommate, who was a twin, was born at 25 weeks weighing just over a pound. My roommate had surgery when she was 2 to correct her retinas, but has had no other long-lasting effects. We are now both students at Penn in Philadelphia and will be cheering for E4's recovery. We will also send you a postcard from Philly, in the hopes that one day you will be an Eagles fan (that was for E4).

Melody

By Anonymous Anonymous, at 3:39 AM  

Hello, I have been following your log since about day 14. I work with E2 and have had you in my prayers since the moment I heard what was happening. I felt blessed when Eric offered to send me the links to your weblog, little did I know I would soon be experiencing NICU first hand. My cousin, who is really closer like a sister, gave birth to a son, Devin James, on Thursday, July 22. There is a long involved story here but the cliff notes version is that the doctors initially suspected a pulmonary problem, a chest x-ray showed that he has an enlarged heart. Within hours of his birth a helicopter transfer team brought him to U of M, where they determined that little Devin has cardiomyopathy. I told my cousin about your site and sent her the links. I believe that you are doing a fantastic job of documenting your experiences in the NICU. Even when you think you are posting a boring day, you always have so much information and I am frequently left with the feeling of reading a really great book and being interrupted by the end of your journal. Of particular importance is being able to see the experience from the male point of view. My whole point is to let you know that all of your hard work put into keep your journal updated is not only helpful to your family miles a way, but very helpful and insightful for people, you don't even know, that are trying to understand the experience that you are facing.

Thank you and God Bless,
Angela

By Anonymous Anonymous, at 8:06 AM  

I think E4 is playing Pedel-pedal...an old family game played by children on a rain day. Aunt Candy and Uncle Keith know that game.

By Anonymous Anonymous, at 8:42 AM  

heya melody ( and your roommate ) -

are you in some sort of preemie dorm at penn :-)

once again, it's great to hear people's stories. i'm happy that you both are doing great ( glad to hear about your roomate's successful ROP treatment ) with no long-lasting effects.

having grown up in maine and michigan, i'm predisposed to splitting my fan votes on the new england patriots and the detroit lions. but if you sent eric a postcard from philly, i'll promise to not make fun of the eagles too much :-)

By Blogger e3, at 9:24 AM  

hi angela. my thoughts go out to you, your cousin and her son. i obviously can imagine what your cousin is going through and i hope she has a great support network ( if you're any indication, it would seem that she does ).

did she get transported to U of M or are they at separate hospitals? i know when eric was facing the prospects of heart surgery in the first week, words can't really convey just how traumatizing it was to kris ( well, both of us really, but especially for kris since she couldn't just get up and go see him ) to think about being in different facilities. it also places additional burdens on the support team as they are forced to decide who to spend time with - the mom or the baby. and with post partum feelings setting in, mom can have a range of conflicting emotions about who is visiting whom. it's a tough, tough time - made exponentially tougher if they are at different facilities.

best wishes and keep me updated on how devon and his mom are doing either through comments here, or by sending me an email. or just tell my dad and i'm sure he'll keep me current :-)

By Blogger e3, at 9:42 AM  

Heya Folks! I'm Emily and I just wanted to add another 'I've been following your story from the get go'. Little Eric is AMAZING! You continue to be in my prayers. E4 is included in my little 2 year old bedtime prayers as well.

Interestingly, my baby brother, also Eric, was born 25 years ago at 31 weeks. Not a micro-preemie, but a neat coincidence, no?

Keep it up Baby Boy! You're a cutie!

Emily in Nova Scotia

By Anonymous Anonymous, at 9:45 AM  

hi emily -

with a neat coincidence like that, i think you're duty bound to send eric a postcard from lovely nova scotia :-)

thanks for following along.

By Blogger e3, at 10:12 AM  

re:pedal-pedal. that's it! it wasn't footsie after all. you'd think i'd know what game i was playing with my son. sigh.

By Blogger e3, at 10:13 AM  

I've been following E4's progress since the link was posted on breastfeeding.com. I agree with previous comments that you should consider a book (in your spare time :)). You do an incredible job of conveying life in the nicu to outsiders like me. I also wanted to let you know a former nicu dad Jeff Stimpson posts weekly essays about his micropreemie son (and other topics, including growing up in Maine) on his website and has converted them into a book due out this September (http://members.tripod.com/jeffslife/HOME.HTM). Jeff's son Alex is five now and has some lasting problems from his preemie days, but he had a much rougher road in the nicu than E4 has had so far. So I give you the link with the same caveat the nurses gave about the nicu book--you may not want to look right now. Good luck to you and yours--I really enjoy your updates and am pulling for E4/Odin to continue his remarkable progress. It's truly amazing that someone so small can be so strong! Cindy

By Anonymous Anonymous, at 10:29 AM  

Hmmm, I think you may be right on the 'duty bound thingy' :). It would be remiss of me not to! :D

Emily in Nova Scotia

By Anonymous Anonymous, at 1:48 PM  

Unfortunately, you have created something others will expect you to continue, at least until you take the Norse god home. I know, as the two days I didn’t write in Andy’s preemie blog (he had gastrointestinal surgery) I was flooded with e-mails, and my mother received at least 30 phone calls from concerned friends (at its peak, Andy’s blog was getting 400 visitors a day – we have a big family). I started numerically ranking the days, as it was easier to judge one day versus another, without going into huge detail in the blog. As for the ROP, remember this ride is a rollercoaster. Andy was in room air (21% oxygen) pretty much from day one, and he still had ROP, and 6 surgeries as a result. I hate to be a wet blanket, and I PRAY I am wrong, but nothing is ever certain. You expected the bambino to go 9 months, didn’t you?

By Blogger Robb, at 2:38 PM  

heya robb -

i can can imagine how, as the months go on, this could turn into a chore. having maintained multiple blogs for for years, i have a little glimpse into the expectations people can develop, even then the content focuses on much more mundane topics. i can't imagine keeping up the current level of content generation over the entire time and could see myself moving towards "a picture is worth a thousand words" posts with perhaps a numerical indicator or two. then again, knowing me, i probably wouldn't be too surprised to see something like trixietracker get implemented in the coming weeks ( and for those who are wondering i was aware of the trixie update when i started calling these posts "the eric update". i guess you could call it an homage. and at the time, in all the craziness, i literally could not think of a better way to title the posts. anyway, check out the trixie update because if you think my writing is passable , you'll be amazed at how good it is over there. ).

and don't ever feel like you're being a wet blanket. i know much more clearly than i might let on that it *will* be a rollercoaster. and if it's not ROP, there quite likely will be something else. in some ways, it's good for everyone to hear some of the stories to help them mentally prepare for some of the hurdles that are approaching. and it's useful for me, specifically, to know that your son was in room air for the entire time and still developed a case of ROP severe enough to warrant 6 surgeries.

what stage of ROP did your son have?

did the doctors determine what might have caused the ROP to develop so severely ( i.e. are there other known factors, such as 'ooooh' levels that i'm not aware of? the amount of time spent on the high frequency oscillating vent (regardless of 'oooh' levels, is another risk factor that i've heard discussed )?

what was the outcome of the surgeries?

By Blogger e3, at 4:06 PM  

I think all information like this is helpful, even if it's hard to read about potential problems... "prepare for the worst, but hope for the best" - I have no idea who said that, but I don't think I made it up.
- C

By Anonymous Anonymous, at 5:01 PM  

http://www.copperstar.com/andy_pic.jpg

What we remember (I had to call my wife - documenting everything comes in handy when your husband is ADD) is that Andy had severe ROP in his left eye, and pretty sever in his right. If the grades are correct, he had 3 out of 4 in both eyes, although his left could be a 4. I get the grading mixed up, as Andy had two grade three IVH (brain bleeds), which might have had an effect on his eyes, who knows. I have given you a link to a picture of Andy. You wouldn't know he can't see well (at least, that is what we are told). 4 of the surgeries were in the left eye, including glaucoma surgery as a result of the damage to his eye from previous surgeries, and he is on watch in that eye for a cataract. All we can tell at this point is there is cosmetic issues, and he needs glasses (they had us try contact lenses – I won’t even tell you the evil that was).

By Blogger Robb, at 5:08 PM  

thanks again robb. what a cute picture!

your post stimulated a long conversation with the nicu nurses today ( it's always a challenge to know when to elevate a discussion to the neonatologist directy ). for everyone who might not be familiar with ROP, it is relatively common in babies born before 28 weeks. officially, the professionals give a baby that early a 10-30% chance of developing some sort of manifestation of ROP. as robb has indicated, the treatments can be trying on the everyone involved. also, it's one of the conditions that the nicu "doorstop" [ the thick nicu manual that's always unpleasant to browse through ] doesn't pull any punches with - as it basically says to prepare for the worst.

that said, as a 26 weeker with no indications of ROP, i'm living proof that it's not inevitable. our nicu nurse, jan, was also very proud of the fact that historically our unit has a stupendously great track record as far as ROP is concerned [ she was particularly proud that they have a much better rate of ROP than the other nicu in town ].

but, as my sister said, it's best to prepare for the worst and hope for the best. all will be revealed in 3 weeks.

By Blogger e3, at 11:04 PM  

Regarding ROP. My 24wkr had surgery at 41 weeks (1 wk corrected age) for Stage 3+ ROP. We thought we would miss this all together, then all of the sudden at week 38, he developed Plus disease, which escalates the problem. Up until then, he was Stage 1 & stage 2 (different eyes) - both in Zone 2.

The surgery went VERY well, he was extubated the following morning. And his eyes didn't even swell. He just wasn't fond of opening them for a couple of days.

After the surgery, the disease doesn't "instantly" go away, it takes a little healing time. About a month ago, he was marked as "Fully Regressed" - which is a total recovery. In hindsight, I'm kind of glad he got the surgery. My friends twins reached Stage 2, but it regressed down to Stage 1 on it's own. Now they both have vision problems and will need glasses for awhile until they are old enough for a different surgery. I asked Kyle's retinologist about this, and he said the condition can be headed off by the ROP surgery (near-sightedness I believe). So, it was kind of a two-for-one for us.

A great book, if you haven't already picked it up is, Preemies: the Essential Guide for Parents of Premature Babies. It really helped us in grasping and becoming an advocate for Kyle while he was in the NICU.

By Anonymous Anonymous, at 5:43 PM  

heya katra -

it really helps to have people describe in detail what they went through, regarding ROP and its treaments. it's fantastic that kyle had such a successful recovery.

and thank you for the book recommendation. if i'm not mistaken, we have it sitting around here somewhere, but i just haven't had a chance to take a close look at it.

By Blogger e3, at 9:08 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."

the complete tales & poems of winnie the pooh

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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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