ex machina
the eric update - 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.
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.
9/18/2004 11:47:00 PM
13 comments
13 Comments:
My prayers are with you.
Brittany from Florida
By 
, at
9:44 AM
My heart is breaking and my eyes filled with tears at this disappointing news. I am praying for little Eric’s protection and that he will recover from the surgery so quickly that even the doctors will be surprised at how soon he gets to come home.
Tina
By , at
9:56 AM
Oh no!!! My heart breaks for you and Kris. I don't even know what to say...
-Dawn
By , at
10:18 AM
Damn. Damn, damn, damn, damn.
Sorry. Laser Surgery?
Being a dad of a preemie with ROP, I know what you are going through. This is the time to ask extra questions. What level of ROP? Did they tell you?
It can be corrected, and for as screwed up as Andy's eyes were/are, little brains work around the problem surprisingly well.
Good luck, we will be thinking of you.
So sorry to hear the disappointing news, but glad they caught the ROP and are going to be acting on it quickly. I will be thinking of you guys. Wish I could be there today for the baby shower.
Hugs
C
By , at
11:49 AM
Oh no!!! I'm so sorry. My thoughts will be with you.
NordicMamma
By , at
1:39 PM
Little Eric gets prayers from me too.
Rebecca
By , at
6:41 PM
As upset as I am over the bad news. Don't count those rotten eggs before they hatch. In my history, 6 weeks for ROP recovery is extreme. I've seen kids get the procedure done and be home in 2 weeks.
In Kyle's case, he was doing GREAT after his surgery - and 2 weeks later, we were on our way home. However, complications from his hernia surgery (stress on the heart) kept us in the NICU for 2 more months.
ROP surgery is so common, and I've seen SO MANY babies bounce right back - as a matter of fact, I've seen babies do WAY better after than before - strange phenomenom?!?!!
Anyway, I'm assuming that he has stage 3+, zone 2 or greater - otherwise they wouldn't be rushing him out so quickly. Kyle progressed to Stage 3+ (+= plus disease which causes the rapid enlargement of the blood cells), in zone 2, and is now fully resolved! Currently, there are 2 blood vessels in the left eye that enlarged - both as a result of the surgery. The right eye is great - but vision in all is perfect for him right now.
We do expect that he may need glasses some day, but our drs have told us not to even worry about that for now. He is tracking and seeing wonderfully. Also, he had his eyes open the day after surgery - no swelling or puffiness! Not that surgery should EVER be considered a good thing, but we couldn't have been more pleased with Kyle's results :)
I am certain that as with most challenges eric has been faced with - he will again amaze us all with his awesome ability to overcome!
I'm so incredibly sorry. I'm thinking of E4, and you & your wife. you'll see the rainbow soon.
stacy
goodwillstacy.com
By , at
2:27 AM
Prayers and keeping everything crossed for a good outcome!
If anyone can pull thru w/ flying colours it's little Eric/Odin/E4!!!!
By , at
7:58 AM
i don't have time to comment at length, but thanks for all your prayers and words of encouragement! we read them all, even if we don't have time to comment. see yesterday's post ( just published this morning due to time constraints ) for more specific details on his ROP.
time to go to the nicu to get prepared for his transfer to the new hospital...
Eric and Kris, we're so disappointed for you! Praying for E4's quick recovery and skilled hands for the doctors.
the couple from yesterday
By , at
10:44 AM
first time here, first entry read. i know its late but i really hope everything is going wonderfully. not just well.
[ 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.
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