ex machina
the eric update - day 58: weight gain. positive negatives and milestones. postcards!
after staying not gaining weight for almost a week after coming off the vent, eric seems to have started adding on a modest amount of weight each day, which is great. tonight's weight-in put him at 1535 grams or 3 pounds 6.1 ounces and he's on 14 cc's of breastmilk every hours. last night they started to double his daily increases in breastmilk from 1 cc to two cc's, by adding a cc in the morning and, if he tolerates the increase, they'll add a second cc in the evening. so, late this evening, he'll get another increase to 15 cc's. since he only needs to be on about 20 cc's every two hours to be considered to be on "full feeds", i think it shouldn't be too long before he's off the intravenous drip entirely, which is great news since the IV line is a great entry point for all manner of infectious agents that we'd like to keep far, far away from eric.
and there's good news regarding eric's direct hyperbillirubemia; the sonogram of eric's liver came back negative for any serious structural defects or major blockages and the first round of liver function tests also came back negative. this means that most of the really bad things that could be causing the condition can be safely ruled out ( well, really only about as ruled out as you can rule out something with a negative result on a micropreemie. remember, the small sample sizes can sometimes give you false negatives. ). given the lack of positive results ( in this case, positive is actually a negative ), the prevailing educated guess is that the condition is "merely" due to changes that occur when you switch back and forth between intravenous feeds and breastmilk, and it should resolve itself after eric goes back on full feeds, which will hopefully be very soon.
today, our neighbor who has 2-year-old triplets who were born preterm, gave us a "preemie calendar" which has a sheet of stickers that you're supposed to put on the days on which certain milestones are reached.
kris and i laughed at some of the ones that we're still anxously awaiting, such as "Moves to Isolette!", "Saw Your Face Without Tape on It!" and "Off Oxygen!" ( you'll probably have to view the large sized image to actually be able to read the stickers ). i'm not sure how i would have reacted two and half months ago had anyone told me that i'd be patiently awaiting for the day i'd see my son's face without a single bit of tape. but, i guess you've got to celebrate the milestone's you have, not the ones you thought you were going to have. or something like that.
in case you were wondering, the postcards are still coming in! i know i'm probably redundantly repeating myself, but i really, truly am appreciate of every single postcard and i can't wait until eric is old enough to understand what it all means.
8/31/2004 11:55:00 PM
8 comments
8 Comments:
Love the stickers. Wish we would have had them. Let us know who/what/where about them if you can. There are a number of things that have happened to e4 that have happened to Andy, and in my cynical mode, I wonder about the healthcare system and certain "problems". That's just me, though. ;)
i'll ask our neighbor where she got the calendar today, but the calendar is entitled, "special beginnings: the nicu and beyond" and the back page indicates taht it was produced by "the loyola regional parents association", which means i'd bet that katra knows how to get a bunch of them. i'll still look for an address though, just in case she's got her hands full.
I remember longing for the day when Ricky had no wires. And then when we got to bring him home he still had an apnea/bradycardia monitor! Doh! Still, soon he didn't have that either and it was heaven. That premie calendar sounds great, I wish we had had one of those!
thanks for the links to the preemie calendar. somehow i knew you'd come through with not one but two useful resources :-) i'll still look for info on "the loyola regional parents association" because sometimes it's nice to support a parents association directly ( for that matter, you'd think the march of dimes would make the calendars ).
oh - and he is getting to be such a big boy! busting out of his bedding and everything. the need for a new transfusion might delay his IV removal a few days ( or maybe i guess they could take his IV line out and then put another one in just for adding the new blood, not sure which is more likely to attract infectious agents to the point of entry ), but it won't be too long before he'll be IV free!
i've been playing guessing game with eric's nurses about when they think that eric will get moved to an isolette, but none of them have relented yet. they just smile and say "hmmm. i don't know. soon." maybe you're right, perhaps they're just getting him ready to straight to the bed :-)
I should have mentioned... The Loyola Regional Parents Association has disbanded. Unfortunatly, growing constraints by the hospital, a few run-ins with hippa, lack of involvement in "Support Groups", and consist leadership saw to the end.
While we where there, we tried desperatly to start up the group again. And were associating with numerous families in the NICU that were also interested in a "NICU Parents Club" - for both support and friendship. We got stone-walled all the way up to the Vice Presidents office. At the time, they were more concerned with their pending Joint Council to focus any attention on it. I was told that after July, they would consider it... Numerous phone calls since, have gone unanswered.
I have instead opted to work with our local March of Dimes, who is establishing programs in hospitals, and independently.
It was a real shame :(
I will add however, that a mother from that group started a private child care program for special needs children (from physical to mechanical needs - ie. oxygen to cp). They operate out of Naperville, a neighboring town to us... In addition to day care, they provide overnight care, and specialty sitting.
DH and I hope to have a Date Night before too long :) I just need to confirm with the service that they offer in home (it's currently only clear that they offer in facility).
sorry to hear about the demise of the loyola support group. your story reminds me to follow-up with our nicu on why their support group dissolved.
i wonder if you need special licensing or the private child care program for special needs children. it's an interesting idea. i'm not sure we have anything like that in out area ( he says, scratching his chin and saying, "hmmmmmm." ).
I would imagine that it's dictated by state law. In IL, care facilities have to be certified - and I believe those providing care to special care children are required to have trained staff on site.
Here is a link to the program: (Coach House)
http://www.coachcarecenter.org/
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