Saturday, December 31, 2005
2 Minutes Later
congenital heart defect
posted by Erin @
4:38 PM
Not-so-happy Nova - but he's even cute when he's grumpy.
Hey Ang... anything look familiar in this picture?
LOL, I ADORE this outfit!
congenital heart defect
posted by Erin @
4:37 PM
A few pics from Christmas and beyond. . .
congenital heart defect
posted by Erin @
4:35 PM
Friday, December 30, 2005
Well, we went to the pediatrician yesterday about Nova's thrush - in the time between my post on the 28th and the appointment on the 29th, it spread to the inside of his top lip. By that time, there was no doubt that it was thrush, so I wasn't feeling so goofy about taking him in. Dr. Erckman wrote the prescription for the Nystatin, but wasn't completely convinced it was thrush.
Maybe I'm just an ass, but, um, HULLO!? A.) It IS thrush (as evidenced by the fact that it's clearing up already, after just 1 day on the Nystatin) and B.) If he doesn't think it's thrush, why would he write the Rx?
While I had Nova in the examining room, Ma had Terra in the waiting room - where she peed her pants twice. I think it was an early case of 'showing out' out of jealousy. She loves the little guy, but yeah, the jealousy that I knew was inevitable but hoped to avoid is showing its ugly little head.
After the pediatrician, we came home, ate lunch, and Scott came home to get us to the cardiologist appointment. Dr. Bensky is nice, and Nova really seems to like him. He took an o2 sat. reading on Nova, and it was a bit lower than it had been in the hospital, but Nova was taking a bottle at the time, which causes the number to be lower. He didn't seem concerned by the drop, and made another appointment for 2 weeks. He'll be seeing him every 2 weeks unless things seem to get worse. When we go back, they'll have consulted with all the various doctors and decided a bit more about exactly what they'll be doing for Nova and when, but Dr. Bensky says that he'll be going back for another heart cath in February to ensure that the collateral vessels haven't gotten any smaller. We had been led to believe that those vessels wouldn't get any smaller, that those vessels couldn't shrink or change, but that he could outgrow their ability to provide adequate oxygenation. It seems like every time we see one of his doctors, we get a different story than before, and to be honest, it's very frustrating. There just shouldn't be a time when I'm unsure of what's going on with Nova or his condition, period. When we go back, I'll have many questions, and I'll be very insistant that they be answered completely.
Aside from that, he seems to be doing very well, gaining weight rather nicely lol, he's up to 8lbs 8.4 ozs, and 21 1/2 inches. That's an inch and a half and nearly two pounds in a little less than a month! And yes, he's 4 weeks old today. A grand 28 days, and doing the things a 28 day old baby should do. You wouldn't think that there would be a lot of difference between a 2 week old and a 4 week old would you? But there is, and since we've only had him home for 2 weeks, it's hard to remember that he's actually a month old and doing things he's supposed to be doing, like spending several hours consecutively awake and alert, or making little baby noises.
It's all going so quickly, too damned quickly.
congenital heart defect
posted by Erin @
4:34 PM
Wednesday, December 28, 2005
I got a package from Ang today. My GOD there was so much stuff in that box! I probably won't have to buy a thing for him other than diapers for MONTHS! And she sent me this sling/front carrier thing that absolutely kicks ass! He loves it, all snuggled against my chest while I do my stuff - cooking, cleaning, whatever. I actually have TWO hands at all times, and thanks to Ang, might just manage to get something DONE around here lol. And the clothes that were in there, good lord, seriously, so MUCH stuff - and a lot of it was gowns! I love gowns, they're so much simpler for diaper changes! And lemme tell ya, this boy believes in making some dirty diapers, Mucho mierda! But there's another good thing about a breastfed baby - the poop doesn't stink like a formula fed baby :) :) (and spit up doesn't stain either!)
I think Nova has thrush, but I also think I might be a little overly paranoid about him... He isn't acting like he has thrush, but his tongue is all white - but his gums and lips aren't, and he eats just fine. . . Anyway, I made an appointment for the morning so I'll know for sure. I know I worry too much with him, and over-react where he is concerned, but better safe than sorry, and to be honest, with the heart condition, I don't know how well he'd tolerate a fungal infection, you know? So much of healing is about circulation and oxygenation - which he, as healthy as he is, has a diminished circulatory system which would effect his ability to recuperate. So it's to the pediatrician at 10:45am in the morning. Then at 2:15 we have to go see the cardiologist. Busy day tomorrow. I've seen more doctors in the last few months than I ever have before, and I figure that will continue to be the case for quite some time.
Today, Terra called Kassi an asshole. Twice. I don't even know where she heard it. I won't lie, we cuss, probably more than most, but asshole isn't one of our favorite words... I mean, if she said damn shit or hell, I wouldn't be all that surprised, but asshole isn't something we say a lot, so I don't know where that came from.
Speaking of Terra and asses... she caught a peek at Nova when I was changing his diaper yesterday. At 2, she has no idea what the physical difference between boys and girls is... so, seeing that he was so completely different than she is, decided that obviously something was wrong with him, and proclaimed that, "him's butt's fallin' out!" Apparently, the way she sees it, he has parts on the outside that are just supposed to be inside, Maybe she wanted a sister?
OK, well, I think that's all I can think of for now, and the moo machine calls (check me out, I managed to do two things at once and fed Nova while I typed! Yay me!) and after that, I really need to fold the 2 loads of laundry that are in my livingroom chair... I've been aiming myself in that direction for hours but haven't actually FOLDED them yet... can anyone say procrastination?
congenital heart defect
posted by Erin @
4:33 PM
Tuesday, December 27, 2005
The moon sat - Buddha,
fat and cross-legged, sagging
the horizon, contemplating
the world spread out below -
December pale, frosted
with the fine ash of incense
burnt on wasted prayers, and
somewhere in the distance
a bell chimed.
This is a partial poem that was composed in the truck on the way to the hospital the morning of Nova's heart cath, it was 5:30 in the morning and still dark, with a huge low-slung full moon. It took me all day just to find something to jot this bit down on - and the day was such a long tiring fiasco of a day that it never really got finished. Now, so much has changed, with Nova being home and all, that the emotion behind it has completely changed - leaving me with no idea where to go with it.
Someday I'll finish it, or rewrite it, or trash it... Whichever it tells me to do.
congenital heart defect
posted by Erin @
4:31 PM
Thursday, December 22, 2005
Miss V had such a good idea that I took it! I made this for our family Christmas card and sent it out. In case you weren't in my address book, this copy's for you! Click it for the full sized view.
congenital heart defect
posted by Erin @
4:30 PM
Wednesday, December 21, 2005
Can you believe that the year is nearly gone? It really scares me sometimes to realize just how fast time goes by.
5 days till Christmas.
11 days till 2006.
22 days till the 14 year anniversary of the day I met Scott. Fourteen years for fuck's sake.
57 days till he turns 34 (haha, you're getting old baby!)
It's all about perspective, you know? Three months will be gone before we know it. And I still can't quite grasp the idea of taking Nova back to the hospital for the surgery. I mean, March is what, tomorrow, right?
congenital heart defect
posted by Erin @
4:28 PM
Tuesday, December 20, 2005
A Yawn, 3 Sneezes and the HiccupsOK that
should be the movie. Apparently, it wasn't me at all, it was my host blocking the link. Probably a bandwidth thing or something.
congenital heart defect
posted by Erin @
4:27 PM
Sunday, December 18, 2005
congenital heart defect
posted by Erin @
4:24 PM
The nurses from Labor and Delivery at Union Regional (I can't quite remember to call it Carolina's Medical Center - Union yet) asked me to keep them all updated on Nova and how he's doing, so maybe I'll sneak him up to the second floor to say hello after the appointment. There aren't a lot of sik people in Labor and Delivery... unless you consider pregnancy a sickness (which sometimes I think it sort of qualifies lol)
Terra is adapting to being not the baby a lot better than I expected - so far at least. She's so totally infatuated with him that she hasn't thought to be jealous yet. Kassi wants to hold him all the time and can't quite figure out why I won't let her. It's hard, I think, for her to remember that there's anything wrong with him, or any reason for the answer to be no, since he's so completely normal/healthy looking so far. The boys, on the other hand, are basically oblivious to his existence. Typical male-child response I guess.
Mom wants to hold him all the time too, but she's a little afraid of him, and is completely convinced that crying would be detrimental to his health. She just can't stand it for him to cry, and says it scares her. It isn't a big deal for him to cry actually, I mean, it isn't like the nurses in the hospital dropped the other babies and went running everytime he whimpered. I have the distinct feeling that we're going to have him spoiled rotten in no time flat. I feel a little sorry for the nurses that have him after we take him back.
My sister came to see him yesterday. Of course, seeing as it was daytime, he slept the whole time. I mean slept. Out like a light, seriously snoozing. I guess I'll have to tell people to visit in the middle of the night if they want to see him awake.
I still have that headache from 2 days ago. I don't know what the problem is, but it's killing me. I'm not big on taking a lot of meds anyway, but breastfeeding limits what I can take. I know damn well a Goody's would kick this headache's ass, but aspirin is a no-no. :| So basically I'm waiting for it to either spontaneously stop hurting, or for my head to fall off or something.
Christmas is in a week - y'all ready? I'm not. I still have a few things I need to buy, damn it. I HATE last minute shopping! I fully intended to be DONE with all of it long before now. Unfortunately, one of the things I ordered never came so I had to cancel that order and get a refund, but that means I have to go out to get the replacement. And I still haven't gotten a thing for Mom. Why can't she dislike some stuff. That whole thing about "I like everything" just makes shopping for her impossible!
Anyway, I'm going to upload a few more photos, mostly of Nova, some of the ice that covered everything when we brought him home... and I'll see if I can figure out that movie thing too.
congenital heart defect
posted by Erin @
4:21 PM
Saturday, December 17, 2005
He has his days and nights mixed up... lol, I forgot what that was like. I haven't slept in 2 nights, I have to get him straightened out!
The nursing thing... well, it was great while it lasted, but for anyone with any experience, you understand what I mean when I say "bad latch" right? He had nipple confusion and didn't want to latch on at all, and when he did, it was bad, very very bad. He was torturing me, not to mention that he wasn't nursing effectively, and was therefore going hungry.
Bottle feeding it is, I can deal with that. Actually, I can deal with it much better than the pain, or knowing he isn't eating enough. Besides, now Dad can feed him too, which makes Dad happy :)
I have the world's worst headache right now. OK maybe not worst but I can't see or think straight, so that's all y'all get for now.
congenital heart defect
posted by Erin @
4:20 PM
Thursday, December 15, 2005
So he's home, and no, we never took a picture, lol. We were too immersed in the chaos of a house full of children pawing all over the new baby, mixed with 1000 loads of laundry and at least 1000 shitty diapers. It's been one hell of a grand day, despite the frigid temperatures, the ice coating on everything, the torrential freezing rain, and the faulty windshield wipers (don't ask!)
In the NICU and the NPCN (neonatal progressive care nursery) he was in one of those little plexiglas bassinette things, and filled it up completely - he looks SO tiny in that huge crib! He doesn't fuss unless he's hungry or stinky, which typically coincide, and he sleeps the sleep of a two week old - even when Terra-the-Terrible-Two-Year-Old is on a screaming rampage.
So we filled out page after page of paperwork for discharge, he already has doctor's appointments scheduled all the way through February... Yes, through February, because they're expecting him to be home for THREE MONTHS. How's THAT for a Christmas surprise!? We were told a few weeks... we were told, "until after Christmas... but THREE MONTHS!? Haha, I got all I could ask for this Christmas!
Of course, that depends on how well he does, and assumes that he has no complications and doesn't start becoming cyanotic or start having what they call "Tetralogy spells."
They tested his hearing, and his left ear failed. The nurses said that it was fairly normal for that to happen, and they scheduled a recheck in February. Her words actually were "It's nothing to stress about..." To be honest, I feel like there are bigger concerns than that right now. I don't want him to be partially deaf, but seriously, we have to be more concerned about his life. That's pretty much how we felt about his circumcision too - we were supposed to be there to et that paid for by 7am, and could have done it, but it just seems so unneccessary right now, just another procedure to make him endure. So, if he grows up to be uncut and deaf in one ear, I'll consider it a blessing.
Pictures will have to wait till tomorrow, and I'm still working on that video... I'm having some trouble getting it transferred to my PC from the camera, and having a hell of a time with my Road Runner - "grid problems" - wtf?
congenital heart defect
posted by Erin @
4:19 PM
If you're male, or if, for some other reason, the subject of breastfeeding makes you uncomfortable, be warned and stop here :)
Since Nova was pretty much snatched away at birth, I never had the chance to nurse him at all, and of course, once the got him to Charlotte, he was on a strictly monitored diet, so I couldn't nurse him there either, since you know, breasts don't come with cc measurement markings... So I pump faithfully like a good lil cow, every 3 hours for the last 12 days - now he's 12 days old, and finally they say his diet is unrestricted and that I can nurse him. He's 12 days old and has been bottle fed from the first feeding - like I have a chance in hell of getting him to nurse right?
I figured I'd give it a shot, but didn't hold out any hope for it actually working you know? I had resigned myself to being attached to that machine for something like a year, and that was OK, not great, but I could deal with it. I should have known the little guy would take right to it. He never even hesitated. It absolutely made my night! Of course, I'll have to go back to pumping when he goes back, but at least for the next couple of weeks, I'll get to do it the right way.
For those of you that are still with me who never breastfed, you just have no idea what a feeling it is to snuggle your child up to you and nurse. I'm inexplicably happy that he's going to do it!
I did the pump thing for Alexis, and I nursed Terra for 4 months until she refused to nurse because of nipple confusion (HA! Just lost any male readers that made it this far - I said nipple!) I remember when Terra decided she was done with breastfeeding. I cried like a fool, lol. Of course, with Nova, I won't be going back to work when he's 3 weeks old, so it will be different, I hope. Who knows, with him going back in the hospital for the surgery. He's liable to decide by that time that he prefers the bottle, but at least I/he/we got a few weeks of the real thing.
So anyway, we took his carseat to the hospital tonight, and bought him the most adorable little winter jumpsuit, and brought home a lot of his stuff so we won't have so much to carry tomorrow. . . I'm so damn excited, I doubt I'll sleep tonight, and boy do I need to sleep! Oh well, it isn't like new mothers expect or require sleep, right?
Yeah, I'm going to go try anyway. Expect pictures tomorrow for sure - of the whole family together by the Christmas tree!
congenital heart defect
posted by Erin @
4:19 PM
Wednesday, December 14, 2005
He comes home tomorrow!!! He comes home tomorrow!!! He comes home tomorrow!!! He comes home tomorrow!!!
Only for a couple of weeks, until they get him scheduled for surgery - but they didn't see any point in him having to stay there, so they called an hour or so ago to let me know that he'll be released tomorrow.
I'm all excited and completely terrified, and to make it even better, they're calling for a load of ice tnight! I have to go get him a little winter coat for his trip home. And he'll have to be sort of semi-quarantined, meaning we'll have to be very careful about doctor's apppointments and how much time he spends around other kids.
Anyway, I have to get to the hospital and fill out a book worth of consent forms for all sorts of things...
congenital heart defect
posted by Erin @
4:17 PM
Oy, sorry about the weird post last night, I was too damn tired at the time to think straight. We had gotten up at 4:30am so we could talk to the doctor by 6, before he started doing his catheterizations. Nova was the second one in, and was taken down at about 9 or so. We spent the morning with him, because he was off his feedings and miserable, so we kept him quiet for those few hours. The Cath is supposed to take a total of about an hour and a half to two hours, with prep and anesthesia, the actual procedure, and recovery time. So we figured he'd be done and awake by noon.
He didn't come back up until one o'clock - and was still knocked out, and on the ventilator (which was used as a routine part of the procedure.) At one thirty, the doctor came in to check on him and said he was surprised that he hadn't woken up yet.
Meanwhile, they're weaning him off the oxygen in the vent, in preparation for taking him off of it when he wakes up. 2 o'clock, 3 o'clock, 4 o'clock, he's still asleep, and we're a little freaked out. OK, maybe a lot freaked out, but the nurses don't seem overly concerned, his vitals are good, he's breathing above the vent - so we're just holding our breath, you know?
At 4:15 he starts to wake up, and starts to fight the ventilator, meaning he's flailing all over and trying to pull it out. The fact that he doesn't like it is a good thing, the fact that he's flailing is bad. He manages, in the process, to pull open the single stitch in his groin/femoral artery, and starts bleeding - A LOT, and I mean a LOT. They had to apply direct pressure for 25 minutes to stop the bleeding. When we get it stopped, he's covered, and laying in a puddle - in addition to the diaper that was soaked with blood. The nurse estimated it to be an ounce of blood - I think that was probably conservative - but even at an ounce, a newborn baby only has about a cup of blood total, so he'd lost a good percentage of his total volume. Afterwards, they tried to take him off the ventilator, but he was too weak and worn out from the fight and from the blood loss that he wouldn't breath on his own, so they couldn't take him off of it.
By now, we've been there for about 12 hours, we're tired and worried and freaked out and exhausted, and basically, emotional wrecks wrapped in a calm exterior, because I think babies hear and understand stuff, and we didn't want him to hear us freaking out.
In the meantime, we've told Mom and the kids that we'd probably be home by mid-afternoon, so I figure they're freaking out too, and there's no phone at our house, so I can't even call and let them know what's going on - which according to the nurses seems to be nothing, because they're seemingly unconcerned and act like all of this is totally normal.
We sit there until shift change - leave to go eat a little something and waste that hour, and come back, convinced he'll have woken up and been taken off the vent. No such luck, at 7:30 we get back and he's still asleep, still on the respirator (which is a huge intimidating machine with horrifying alarms! lol)
At 8:00, we're assured that he's fine, his vitals are still well within normal ranges, that he's just tired and will be just fine - colors good, he reacts to touch and sound, blah blah blah, go home and rest, you both look exhausted...
We get home about 9pm - call back at 10pm and guess what? He's awake, off the vent, and has eaten! If I'd have known all we had to do was leave to get him to rouse, I'd have left HOURS ago! Anyway, he's great, sleeping normally (as opposed to out-like-a-light due to anesthesia) and all is well.
Huh, he's stubborn and sneaky I guess, just like his brothers and sisters lol.
Anyway - the cath results showed pretty much what we expected. He has several peripheral arteries coming off his aorta that aren't "normal" but are what his body uses to transport oxygenated blood. These are what they wanted to see with the cath, and it shows that they're all very close together, which doesn't change the severity of the situation, but does simplify the surgery considerably, so that's good. It also shows that his body is dependent only on them for the oxygenated blood - and they're not going to close or change, so he's stable, with no worries about any major changes in his condition. In other words, for now, he's excellent - good O2 sat levels, which will remain as they are until surgery.
Now for the real news, which is both huge news, and no news at all...
They don't intend to do the surgery until after Christmas, and in light of the catheterization results, the doc that did the cath sees no reason for him to be in the hospital in the meantime. It isn't up to him whether he gets to come home in the meantime, but he approached the neonatologist, who agreed with him, and now we're waiting for an answer from the doc who will perform the surgery. If he says it's ok, Nova might just get to spend the Holiday at home!
That's exciting as hell, and almost as scary. I'm trying to imagine what taking him back for the surgery will be like after having him home for a couple of weeks. But I'm also not getting my hopes up that it will happen, because we really don't know yet. It depends on Dr. Watts, who is out of town this week, and is also the one who follows protocol most closely - he's very cautious and does things "by the book" so we'll see.
congenital heart defect
posted by Erin @
4:17 PM
Tuesday, December 13, 2005
Long day today. 14 hours spent at CMC. He had his heart cath today - and that's a long story to tell, some complications, but everything's great now. More tomorrow, I've been up since 4:30 am and I'm friggin' wiped out.
Oh, we have video too, if I can figure out how to upload it, I'll share - tomorrow. Night night.
congenital heart defect
posted by Erin @
4:16 PM
Monday, December 12, 2005
Yesterday was a frustrating day - we got to Donovan's bed to find him in a dirty diaper with a puddle of spit up in his blanket and smeared into his hair and cheek. He's not been a spitter-upper at all so far so that was kind of weird, until I realized they'd been giving him formula. (ACK!) But the formula explained the puddle, I'd puke too if someone made me drink that crap - ever smelled it? Yuck. Anyway, they never even called to let me know he needed milk, which kind of pisses me off.
We forgot the camera last night, so there are no new pictures which pissed me off too - but he looks exactly like he did yesterday... only smaller. LOL. OK, not exactly smaller, but he lost an ounce. Presumably due to the removal of the IV - god knows it wasn't because he isn't eating!
We had a new nurse, who told us that the catheterization is scheduled for tomorrow. Another thing they didn't call and tell us, another thing that pissed me off. And we still haven't been able to find out what time they'll be doing it, despite several calls and messages. God help them when I get up there today. Anyway, that means we're finally going to know exactly what's going on inside that tiny little chest, which is a good thing - but it also means we'll soon be one step closer to the surgery, which quite frankly, scares the living hell out of me.
As much as I realize that the surgery is the only thing that will save his life, I'm also all too aware of the fact that it's the thing that may very well end it. All of a sudden, the false sense of security we've lulled ourselves into has come to a screeching halt and now I'm back to freak-out mode, backpeddaling, and resisting the urge to throw Nova in the diaper bag and run for the exit. It's difficult to reconcile the image of the perfectly healthy baby I've posted so many pictures of with the image I know of what post-surgery looks like.
There's a fine line between the rational mind of a woman with this experience under her belt once already, and the completely irrational mind of a mother who's already lost a child to this exact process. There's also no margin whatsoever between the calm disposition of a visiting parent who comes in every day to love her son, and the woman who resides behind that mask, who's actually an hysterical screaming mess, begging God and the doctors and whatever powers that be to let her child be well and go home and grow up.
I'm like a pressure cooker right now. Knowing that this isn't the time for the tears or hysteria, I hold them back, but it's becoming harder and harder to control it - and the prospect of the explosion is a little frightening. Not so much explosion as implosion, melt down... He'll be taken off his feedings this evening for the cath tomorrow, which means that he'll be crying and miserable when we're with him tonight. I remember what that was like with Alexis - damn hard to know your child is hungry, crying to be fed and not be able to feed them. I hope that isn't the thing that sets me off, but even the idea of it has me fighting the tears.
He is 10 days old today, and the first ten days were the time for enjoying him, making the most of what we had - after that, tonight I suppose, comes the time for the reality check. Tomorrow is a new day with a different view. God help us, let there be something worthwhile on the other side of this mountain, rather than a Christmas season funeral.
congenital heart defect
posted by Erin @
4:15 PM
Sunday, December 11, 2005
congenital heart defect
posted by Erin @
4:14 PM
Saturday, December 10, 2005
He's up to 7lbs 3.8ozs. He's a hoss, eating like crazy, and gaining like crazy. I read through his chart last night, his lowest weight was 6lbs 10ozs when he was 3 days old - so he's gained over 1/2 pound in 5 days, and didn't even eat for one of those days!
He's now up to 60ccs every 3 hours - that's 2 ounces for those of you that aren't Erin or Ang, who work with CCs on a daily basis lol. He's totally off his supplemental IV. His rash is clearing up, which is amazing, because they tend not to heal well because of the oxygen shortage - but then, his O2 sats are at normal levels right now. Last night his alarm went off because it was too high, how's that for weird? I mean, why is there an alarm for oxygen levels of 98%? Yeah I know, it's for babies that are actually on oxygen...
He's awake more and more, and seriously alert when he's awake. He loves Scott's voice and will watch him when he walks around or moves around when he's talking. Scott whispers secrets in his ear... I have no idea what he tells him, but it's adorable to watch Nova react to it. I think he might be promising him a steak or a cheeseburger or something.
He hates diaper changes, blood pressure checks, and having his temperature taken. He liked his nurse tonight, but really doesn't care much for the male nurse when he gets him. He kept scratching his face so I cut his nails tonight. This is my 7th kid, why does that still make me nervous? I kept having visions of cutting the tips of his finger off. He may be the biggest baby in the NICU, but those are still tiny tiny little fingernails.
Anyway, it's 1am and I wanted to do a quick update before I go pass out for a couple of hours. Night all, more pics tomorrow. . .
congenital heart defect
posted by Erin @
4:13 PM
After another 12 hours or so without an internet connection...
I wonder if I get a freakin discount? Hah!
Well, our camera batteries died upon entering the hospital last night, so there are no new pictures, sorry, but he slept the whole time we were there anyway lol. He's still off all meds, down to very little of the vitamin supplement IV stuff. He's got a little diaper rash, which with heart babies is all but inevitable because of the poor circulation and lower oxygenation levels. We've been slathering him in desitin and changing him constantly in hopes of hkeeping it to a minimum, but that'll be a miracle - it's just one of those things heart babies deal with eventally. To have put it off a week was pretty lucky.
His feedings are up to 47ccs, and increase by 4 ccs every 6 hours. His weight, my god he's gaining! He's up to 7lbs 2ozs (yes my math was off when I thought he was over 8lbs, actually, my memory was off...)
They have said they'll do the heart cath next week. I don't know if they mean next-week-monday, or next-week-friday, or somewhere in between. And of course, once that's done they'll be able to schedule the operation, though I have no idea if it will be imediately, or another week or 2 in the future.
I asked him what he wants for Christmas last night, he didn't answer me though. All my kids were 5 or 6 months old by Christmas, he'll be 23 days. What the heck do you buy a 23 day old baby!? So, he has a stocking, but it's empty. Blankets and binkies I guess lol.
I need to go do some stuff around here. I'm trying to keep some small semblnce of order and normalcy around the house, but it isn't working out too well. God knows my mind is scrambled, my schedule is fried, and I hardly know what the hell I'm doing at any given point. Pffffft.
Oh I forgot - Nicholas is off his ventilator! Yay Nicholas!
congenital heart defect
posted by Erin @
4:02 PM
Friday, December 09, 2005
nova
(noun)
1. nova
a star that ejects some of its material and become more luminous in the process
OK so I never thought about how appropriate this definition of his nickname is.
congenital heart defect
posted by Erin @
4:01 PM
congenital heart defect
posted by Erin @
4:00 PM
Thursday, December 08, 2005
He is so healthy now, so vibrant and strong, and it's difficult to in a way to see that. Only, I suppose, because I know how he'll look post-surgery - bloated, purple, comatose, and gravely ill, unnaturally still, and silent. And I fooled myself about the respirator you know, he'll be on it after the surgery, because they'll keep him alive artificially for 10 hours while they repair his heart, they'll work his lungs and circulate his blood and only thanks to him will he be in that state of undead and only thanks to them will he be alive at all.
One minute I will see him looking so perfect. Then I will hand him over to some masked nurse whose eyes will be sadly smiling, and the next time I see him, he'll be held together with a few stitches and prayers - fighting for his life. That's when you tell him you love him, and say goodbye, just in case. And if he makes it through the first 24 hours, we'll start that count again. And if he makes it through the first 48, we can hope again.
And maybe that's why I find myself looking at the other babies and feeling for their parents. Because in a week or two or maybe even three, my son will be in far worse shape.
congenital heart defect
posted by Erin @
3:59 PM
Ache
The moon is but a sliver, a cradle
for stars glowing against absolute darkness
and my feet crave the sand of long pale beaches
with waves to lull me to slumber there.
But the nightbirds' song is no seduction,
holds no promise I care to see kept;
I have wept the sea while windswept shores
cleansed my cheeks of empty oaths.
And my chest aches, full
with the weight of midnight.
congenital heart defect
posted by Erin @
3:58 PM
congenital heart defect
posted by Erin @
3:57 PM
They've taken him out of the heated bed, and moved him into the healthy-baby plexiglass box. You know, the ones that 'normal' newborns go in. His IV vitamin/supplement stuff is down to half what they were two days ago. He's, as you can see, eating and awake and aware.
His feedings went up to 25ccs at midnight, which means the IV stuff will be dropped even more. If things go well, and continue the way they are now (which we fully expect) he'll be off the IV totally in 2 more days. That means that by the weekend, he'll be untethered except by the O2 probe. At this point, holding him is an adventure of sorts, since he's attached by 4 wires and an IV, all of different lengths, that you have to keep untangled, uncrimped, and connected, lest the alarms go off and bring nurses running to repoke, reprod, and reconnect.
They also have him in some of the clothes we bought him, and he's fucking A-DORABLE in them, of course. Unfortunately, the camera was forgotten in the truck and wasn't retrieved until after he was through with all of his vital checks and I didn't have the heart to unwrap him again for the sake of a picture because he gets fussy when he isn't all wrapped up. Maybe tomorrow we won't leave the camera in the truck and I'll be able to get that pic while he's unwrapped for his check-up.
I DO have one more picture, but blogger is being a twit and won't let me upload it, and of course, it's the best of the pics we took tonight. We're still playing with the settings on the new camera, and this one daggum picture is the one that came out perfect, or, ok, maybe not
perfect but a sight better than the rest.
Oh, Nicholas was much quieter tonight, not so aggitated. Mom and Dad came in and seemed to have made huge strides in coping, she was smiling and talking to him, and Dad wasn't friggin yelling, thank god! They had their camera out too, and the flash was like a strobe light. That didn't seem prudent with a child prone to seizures, but the nurses didn't say anything, so what the hell do I know? I was just glad to see that the mother was able to spend some "quality" time with Nicholas and not be so terrified of him. I had decided on the way to the hospital tonight that I was going to talk to her, so in my mind, for most of the ride I was trying to decide just what to say. And, even though I never figured out just how I was going to put it, I had decided that the best thing that I could tell her was that she'd never get these days back, regardless of what the future held, these first few days are irretrievable - I wanted to tell her to enjoy her son as best she could, to relish the weight of his tiny body in her arms, the tickle of his hair against her cheek, his fingers around hers, his warmth against her lips... I guess she figured that out on her own though, and again, none of my business, but I was thankful that she had.
The baby girl across the way was still being transfused and the doctor told the mother that this was mile 2 or 3 of their marathon, that there was a long road ahead of them. I still wonder what's wrong with the baby, who happens to be beautiful by the way.
And the cute little guy to Nova's right - the one who stopped breathing twice last night - not a single alarm went off from him tonight, so aparently he's doing better and maybe he'll get to go home on Monday like they told the mother on Sunday.
Nova's nurse tonight (he seems to have a different one every time we're there, which seems strategic, so they don't get too attached maybe?) was a doll. Once she took all his vitals and handed me his bottle, she pretty well left us alone. That guy last night crawled our asses the whole time and made it hard to "be" with Nova. He was funny, and capable, but a little, well... clingy?
OK, one more try at that other picture and I'm off to bed!
congenital heart defect
posted by Erin @
3:55 PM
Wednesday, December 07, 2005
Waiting.
Unless you've been in a situation where someone you love's life is on the line, and all you can do is wait, you can't understand how hard the waiting is.
I know, rationally, that they're putting things off to give him a better chance during the surgery - to give him a better chance than Alexis had when she went through this same surgery. Older and stronger they say. I know that Alexis' death is coloring the choices they make, and that isn't a bad thing, but they waited 12 days with Alexis. Older and stronger they said...
She's so strong and Look how pink! they said. And it's like an instant replay and I feel the fear welling up, and we wait, not knowing. And I don't even know if I really want to know. I've always believed that one shouldn't ask a question unless one is ready to hear all the possible answers, and I'm not.
And so I ask too much of him, expect him to overcome challenges no infant should ever have to face. And I barter with him about never picking up his own underwear or making his own bed if only he'll come home to have those things. And I walk the fine line between hope and reality and call it cautious optimism. Heel to toe, heel to toe, like a drunk, I teeter. There is a battle being fought between fear and maternal instinct that keeps knocking me down on one side or the other. And I pray for serenity as I do this one day, one minute, at a time. Baby steps you know, and then I wonder if there will be any of those.
Hope is a scary thing, don't let anyone tell you any different.
And there is an air of finality here anyway. I will have my tubes tied in mid-January, and I know I will never face any of this again, and that is a relief, and yet, an end of sorts, isn't it? All I've ever done is have children and be a mother and I'll never do it again, and I don't regret that exactly, but it makes me sad and a little lost, and it makes Nova my last chance and I don't want to fail, again.
Of course I realize, again - rationally, that there isn't anything I could have done to prevent this, to change it. There is no magic mommy sin to cause what's wrong with Donovan, no magic mommy fix for what's wrong with Donovan, but you can't help but feel responsible when a child comes out of you with a heart so desperately flawed.
And I'm exhausted already, and there are weeks and months to go, we've barely even begun this journey, and as tired as I am, I hope it's a long long trip.
congenital heart defect
posted by Erin @
3:53 PM
Yup, more pics. You can pretty much expect them daily, even when the pics all come out shitty :) And yeah Eve, there's my face, impressive eh? :P I look like I'm sucking on a dill pickle! And yellow isn't exactly my color lol, I wonder if I can request a pastel pink gown? :P
Man the lighting really sucks for photos in a nursery!
These are a few from yesterday and tonight, not great photography, but cute pics anyway. So he's eating again, 20ccs now, and then wants more an hour later. A good appetite is a good sign, and he definitely has that! His O2 Sats are better now than they were on the prostaglandin, and they've removed his umbilical blood pressure monitor and taken him out of minimal stimulation. Basically, they're not doing a thing for him medically other than monitoring his vitals, and he's on an IV o stuff that
looks just like milk, which is a supplement of vitamins and stuff because of the erratic feeding pattern they've had him on. It seems to be working... They do his weight in metric measurements, at birth he was 2.78 kg, or 6.13 lbs and tonight he weighed 3.67 kg, which if I'm not mistaken, is over 8lbs. That seems like a huge weight gain in 4 days, especially when he didn't eat for a full day! I'm thinking my math is off to be honest!
His color is beautifully pink, and he's much more awake and alert now that he's off the meds. He had his eyes open a LOT tonight, which hasn't been the norm. He thought his nurse (who went by "Cobra" which is his last name) was insane and kept looking at him like he had 2 heads - it was pretty funny actually. I bought him some socks and a matching hat. They're red with white snowflakes. Tiny tiny little socks, and Nova has BIG feet (it was one of the first things the doctor said when he was born, "Boy he's got big feet!") but the socks are still too big - and the hat!? Good lord, Nova looks like he's doing a great impression of the Pope when he's wearing it - it's HUGE on him.
We were only with him a couple of hours tonight, from 8:30 - 11pm. Scotty had to go back to work this morning after being out since last Friday morning - which limits the available hours to spend up there, then we had to go to the hospital here in Monroe and fill out the paperwork for his birth certificate because we left so quick after he was born that it wasn't ready when we checked out Saturday. Plus, being unmarried means we have to sign affidavits, swearing that Scott is the father. It's ridiculous. Anyway, that means we didn't get home until midnight, and Scott will be up again to work in the morning. I don't know how he does it. I'm very thankful that I don't have a job right now. Nova's situation is already more than I can handle.
There are so many babies in the NICU. So many that are so sick or so tiny, and you can't help but look at them and wonder just what's wrong with them, or how long they've been there, or whether they'll go home or not. The baby on the right of Nova stopped breathing twice while we were there tonight and had to be revived. The baby across from him spent the entire 2 hours getting a blood transfusion, and the baby to his left has constant seizures. That baby's name is Nicholas, and the father seems like a real asshole (sorry, but I overheard him on the phone last night, and if Scott said those things about my child, he wouldn't live long enough to hear the word "divorce"), and the mother saw him for the first time tonight. Their baby is on a respirator, with wires and tubes and IVs everywhere, and she saw him and just fell apart. I can't imagine what a shock it is to see your child for the first time, and it be like that. I just ached for her. They spent about an hour there, behind a privacy screen - and all you could hear was her sobbing. The husband, meanwhile, was oblivious to the wife and just kept saying (in an extremely loud obnoxious voice, just like he did last night) "Hi Nicholas, Hi baby boy!" over and over and over. It even wore on the nurses' nerves. You'd have to have been there to get the picture, trust me, but I just wanted to shake him. The yelling couldn't have been good for the baby, and HAD to have grated on the mother's already raw edges. I pray that Nicholas is OK, that he can go home and be well, but I also pray, for the mother's sake, that the father can find a more gentle compassionate way to deal with his wife and child.
And all in all, it's none of my business, but I swear I just wanted to step into their little area and hug her. To give her
something to hold on to. But what would I say? "Everything will be fine" ? I don't even know what's wrong with her son, let alone what's going to happen in the future. I hope she makes use of the Thursday night group therapy/support sessions.
Anyway, I should probably mind my own business and worry about my own mental health and therapeutic needs! Right now, I have a date with a couple of suction cups and then I'm off to bed :) (TMI? Sorry)
congenital heart defect
posted by Erin @
3:52 PM
Tuesday, December 06, 2005
Argh! Between my connection being on the fritz and Blogger being down, I haven't been able to update for a day or so, sorry!
They planned to do the heart cath yesterday or today, so at 5am yesterday, with the cath in mind, they stopped feeding him. It turned out that they didn't do the cath, but they did take him off the prostaglandin yesterday at noon! That means that A.) We don't have to be concerned about him going on the respirator. B.) The doctors felt that his oxygenation was being supplied by the peripheral vessels and not the shunt. C.) He's feeling better because the prostaglandin causes the body temperature to rise and causes irritability and generally makes you feel shitty. He's been exceptionally content anyway, but you can just look at him and see that he feels better, just by the facial expression. And D.) Erin and Scotty are overjoyed at the removal from said meds because it negates a lot of worries about breathing and eating complications.
So overall yesterday was a good day.
They decided that he's strong and healthy enough that they're putting off the heart cath as far as possibly next week. This is good news for Nova, that he's that strong, but frustrating for us, because it's more waiting without knowing exactly what the "geography" is in there. The surgery can't even really be planned until after the cath, so it also extends how long he'll be hospitalized. We're looking at 6 weeks or so as best I can tell so far. Christmas is going to be difficult, because all of me will want to be in 2 places at once. That isn't exactly new news, but it sort of sank in at some point last night.
They stopped feeding him for the cath that never happened, but continued to not feed him so that they can evaluate how he does without the prostaglandin. The purpose of which is to keep open a particular vessel that normally closes shortly after birth in a new baby. In other words, they were afraid that if it closed, he wouldn't be getting oxygenated blood to his body and that his o2 levels would drop. Eating causes changes in the breathing patterns that can also cause lowered o2 levels, so if his oxygen levels drop, they wanted to know for sure what caused it, hence, no feedings. So far his levels are high and they were going to start feeding him again at something like 5am. I haven't been able to call and talk to anyone yet today, and we won't be able to go until this evening, so we don't know anything for today, but that's the news as of last night.
There are new pictures to post, but they're on Scotty's PC not mine yet so I'll do that later too.
congenital heart defect
posted by Erin @
3:51 PM
Monday, December 05, 2005
I'm trying to blow some time entertaining myself with silly stuff till 1:30, thought I'd share.
Donovan
Origin: Irish, Gaelic
Meaning: Dark; brown-haired chieftain.
Zane
Origin: English
Meaning: the Lord is gracious, Zain (Hindu) means godly light.
LeClair
Origin: French
Meaning: The light
Zodiac Sign:
Sagittarius
11/22 - 12/21
Chinese Sign:
Rooster
posted by Erin @
3:49 PM
Sunday, December 04, 2005
More pictures from today! He's still doing really well, no changes except that he had some blood pressure issues, every time there were loud noises or anything that upset him, his bp went up, so they put him on "minimal stimulation" which means they keep the lights low in his area most of the time and keep him quiet as much as possible. That 3rd picture is evidence of the offensive binky... I hate the damned things, but he loves his, pink and all, and who am I to deprive him?
congenital heart defect
posted by Erin @
3:47 PM
A recent picture of me - for the laugh :) 
congenital heart defect
posted by Erin @
3:45 PM
Saturday, December 03, 2005
OK so most of this has already been said, but here we go again: This is Donovan Zane LeClair, our newest little addition to the family. He was born at 12:18pm on December 2, 2005. He weighed 6 lbs 13 ozs and was 20" long. I know most of you already know what medical problems he's facing, so I won't go over them again in this post, I'll just let you enjoy his gorgeous little self :)
Thought I'd share some pictures, in case you doubt the objectivity of a new mother who says her son is gorgeous ;) We actually took about 200 more, but these are the ones I've cropped and resized and that aren't too awful dark.
They're finally feeding him, (he didn't eat for the first 24 hours) and he's only getting 10ccs at a time but he eats it like he means it. They gave him formula, and a binky, which they weren't supposed to do, but I wasn't there to feed him so they didn't have a lot of choice. I'd rather they fed him formula and gave him a pacifier than to let him go hungry and cry all weekend, which was pretty much the original plan - so his belly was empty for the heart cath.
Anyway, he's still doing really well. As you can see, he still isn't on the respirator, which makes my little heart happy. It can be hard for them to adjust to coming off of it when they've been on it a while, plus, being on the respirator means they have to be fed through a tube, which makes the hospitalization even longer because they have to re-learn how to suck and swallow before they can come home. . . so we're really hoping he doesn't have to be intibated!
So welcome to the world Nova! We love you!
congenital heart defect
posted by Erin @
3:39 PM
Well Scotty told you the biggest part of what we know so far, except he forgot to tell you that he's gorgeous, at least, I think so - I only saw him for a second before they ran off with him. They released me this morning so I can go see him in Charlotte, and he's doing very well so far, which is normal for the first 36 - 48 hours. We're hoping he continues to do this well after that. He'll have his heart cath on Mon or Tues, then they'll decide when to do the surgery. They originally said within the first 10 days, but now they're saying that they may wait several weeks till he's bigger and stronger.
He's on prostiglandin (sp?) for now, to keep his heart working the way it is. That sometimes create breathing prblems, and then they have to put them on a respirator - so far Donovan hasn't had any of those problems, and isn't on the respirator, which is excellent.
We won't really know anything more until after his cath, and I will be there as much as possible. I'll take the laptop and hunt for wireless web to tap into , but I can't guarantee anything, so I'll let you guys in on what's going on whenever I can.
Me? I'm good, too busy to hurt, or to freak out, know what I mean?
One note on labor and delivery: "Epidural" is my new favorite word! Good lord I wish I'd have had one with all the kids!
I'm of to see Nova now! Love yas
*hug*
posted by Erin @
3:36 PM
Friday, December 02, 2005
Sorry if this is s a short post but I'm in the middle of 100 things and Erin wanted me to post this. Erin had the baby @ 12:18 he weighed 6lbs 13oz. Erin is still in the local hospital, while the baby was transported to Carolina's Medical Center where they will be taking care of him. Erin will be discharged tomorrow morning and off to see the baby and care for him while he goes through all types of tests. I'm going to bring Erin the laptop and hopefully she'll be able to find a wireless connection and post more in detail.
congenital heart defect
posted by Erin @
3:18 PM
Name: