Nova's Heart - 4 months of life, a lifetime of love

Tuesday, February 28, 2006

And these 2 are from after it was closed. He's a tiny bit more swollen, but nothing to really worry about so long as he keeps peeing. Note the difference in bandages... this one is TINY compared to that huge thing they had on him before! Actually, on his chest, it's just medical tape. The bandages on his belly are around his chest tubes and peritinaeal (PT) drain, which might just come out tomorrow! (the PT, not the chest tubes) They also removed the wires that were atached to his heart in case they needed to hook up pace maker, and he's off of a few more meds, or greatly reduced the dosage of them. If nothing changes for the worse, they'll start actual food through an NG (nasogastral) Tube tomorrow. Yup, he'll be eating through his nose. Don't ALL boys, at one point or another, do the milk-up-the-nose trick?

posted by Erin @ 3:23 PM 0 comments

We just talked to Candy (his nurse) and they've taken out the PT Tube, so apparently the kidneys are looking good! They told us yesterday that they were considering feeding him some today, so we'll see how that goes. Of course, it'll be that formula stuff. You all have NO idea how much I didn't want him to have to go on formula. Silly thing to be upset about under the circumstances, but I am anyway. Silly woman!

We decided to have a cup of coffee and relax for a minute this morning before we rush off. Some lame attempt at "taking care of ourselves" or some such thing. We're both sort of wiped out you know, and we know he's in good hands - I mean, we couldn't ask for better people than Candy or Sharon or Jane - and the doctors up there are so wonderful - but I doubt this will last long lol, we're ready to GO.

posted by Erin @ 1:20 PM 0 comments

This is this morning (Monday) before they closed his chest. Laura, I thought you'd like this one - how many other babies have you ever seen in a corset? haha!

posted by Erin @ 3:21 AM 0 comments

I'm uploading (as quickly as possible, one pic per post because blogger keeps freezing my pc) a bunch of pics from the last 2 or 3 days. You can really see the difference in him. This is the first we took after he "opened his eyes" see the sleepy lil slit there?

posted by Erin @ 3:15 AM 0 comments

Monday, February 27, 2006

This picture is from yesterday, but I couldn't upload any pics yesterday thanks to Blogger's infernal appetite and eventually a dead battery in the camera. Click for a bigger picture.

Oy. I know Spring means longer days, but sheesh! They woke me up at 6:30 am to tell me they were closing his chest, to get there ASAP. So we fly out of here (out the door at 7:01) to get there, and they started surgery at ONE THIRTY SEVEN, lol. I don't think I even brushed my hair before we left, and then we waited for HOURS, but that's ok, it just meant I got to spend my 15 minutes with him at 8, 10, and 12 before he went up/down/whichever damn direction surgery is.
The worst part about that was knowing that it was postponed because Dr. Watts was in surgery with another baby, and the change in time frame might be because of complications that baby had, so we were worried for some other set of parents and their baby.

So, he was in for 2 hours, came out like a champ, with (so far) very little in the way of complications due to this procedure. His O2 levels dropped a bit for a minute because closing the breastbone changes the pressure on the lungs, so they upped his ventilator pressure a little, and the pressure change also affects the kidneys so they gave him some more lasix to keep them going - but all in all he tolerated the whole thing really well. He still looks really good, and is reactive to touch and sound and everything. He hates it when we play with his feet or wash his face, lol.

And when we went up to see him in CVRU after surgery, the baby that Dr. Watts had been working on that postponed things for us was up there, right next to Nova, and looking really good. :)

Before he went up, they told us that his lymphatic system had apparently been damaged during the surgery (which will cause something called chylothorax) and that they'd be repairing that while they were in there. The lymphatic system is mostly a mystery to me, and I'll have to study up, but it has something to do with fat intake - so no more pumping for me, he'll be on a special no-fat formula when they start feeding him again. I'm really upset and disappointed by the fact that he won't be on breastmilk anymore. I know how good it is for babies, but the fat content in it is high, and he can't have it - so now it's bad for him, and I have to go through the pain (literally) of not pumping. I'm not thrilled by it at all, but whatever I have to do for him is what I'll do. Period.

I'm trying to get over the emotional reaction, and look at all the time I won't be spending locked in the bathroom with the moo machine. The scarey part is that this special formula (Portagen) is going to be EXPENSIVE. I mean, regular formula is outrageous, I just can't wait to see the price tag on this stuff. Hope work picks up for Scott real quick!

I'm still a little lost around the hospital, as far as what's on which floor. He's on the sixth, food is on the 3rd, I pump on the seventh, you can go outside on the third, or the first floor, and all the elevators seem to be on both sides of the hall, so you never know which way to turn when you get off! Or, maybe it's just me and my direction blindness! But I'm learning, and could probably get where I needed to go if I had to. Ocassionally, I even help other lost people, and MAN are there a lot of them.

posted by Erin @ 8:02 PM 0 comments

Whooo hoooooo!!!!

Sharon just called (woke me up by golly) and said that they're closing his chest this morning instead of tomorrow!

Apparently, Dr. Watts IS thrilled!

talk to you later! We're outta here.

posted by Erin @ 9:58 AM 0 comments

Sunday, February 26, 2006

Nova looks like a different child today. He lost a LITER of fluid in 24 hours. You know how much a liter is when you're talking about a 12 pound baby? He's awake, sort of - still stoned out of his gourd, but he will open his eye in sleepy little slits, and react to our voices or when we touch him. He can't make much noise because of the ventilator tube, but he was trying when we first got there this morning. We'll never know if he was cooing, or crying, but he was definitely trying to make noise. Later on the nurse tried to wash his little face because, well, because it was pretty gooky. I mean, they put eye drops in his eyes, and it was crusty in the corners, and his lips were sort of crusty too... Anyway, he has always hated to have his nose messed with, and she said when she cleaned his nose he tried to fight her and turn his head away.

Now don't misunderstand, he isn't fully "awake" yet, he's weak and slow and still pretty damn sedated, and when I say he moves, it isn't much - but my god what an improvement from when we saw him yesterday!

let's put it this way, the nurse said Dr. Watts came in early this morning, and that he was thriled. Now, you'd have to know Dr. Watts, but he just doesn't do thrilled, and we'll probably never see him act thrilled but if the nurse saw him being that impressed with Nova's progress, then needless to say, we're obviously thrilled - and we DO do thrilled!

So they're pretty sure that they'll be closing his chest on Tuesday morning. They say that when they do that, he'll go through another rough spot where they'll really have to be "vigilant" with his pressures and rates, because closing the sternum changes the pressure on the lungs, heart, and pulmonary artery - so Tuesday will be another scarey day, but obviously, we'll be less concerned than for the actual surgery.

I'd love to show you some pictures, but the camera battery is dead, and I can't. I will, when I get the batteries recharged, and you will be amazed!

posted by Erin @ 7:24 PM 0 comments

You guys will be able to recognize Scott by his fingers alone soon - He's holding Nova's little hand in almost every picture I take.

Note that he's holding on to the bear... they had to move his IV from his arm to his foot because the vein blew and the fluids weren't going into his vein, they were just pooling up in his arm and causing (even more) swelling there - they've got his arm elevated and propped on his bears.

In this last picture you can really see the amount of swelling that's even in his head. I'll have to put it through paint shop pro and show you what I mean because it's just too hard to describe where it is lol.

posted by Erin @ 12:12 AM 0 comments

Saturday, February 25, 2006

So I've typed up this update ~~twice~~, ~~three times~~ FIVE times. Blogger ate it, again and again. Then, blogger wouldn't let me sign on at all. Asshole Blogger. I started this post the first time at 4pm, it is now 9:42!

So here's how today went:

We were supposed to be there at 8 to talk to the doctors, fully expecting (dreading) him to be on dialysis and trying to prepare for whatever that looked like and whatever complications may arise from it - which is why we wanted to talk to the doctors. You know, questions questions and more questions. They come around early, but we couldn't go up when we first got there, so we went to the cafeteria.

While we were down there, who do we see, but Nova's nurse Sharon (she's an absolute DOLL!) so she stops to talk to us and guess what?! He's peeing on is own (with some medicinal help) and hasn't had to go on dialysis after all. She was as convinced as we were that he would, so we were all really surprised. Apparently they started him on diuril in addition to the lasix, and they kicked things into gear. YAY! PEE! Yes, only a parent understands being happy about pee.

(See Doug, I TOLD you that diaper contents are wonderful diagnostic tools!)

OK, so it wsn't exactly diaper contents, since he's catheterized, but anyway. And we have a theory about that too, see, Nova has always been one of those kids that peed on you EVERY TIME you opened or removed a diaper. He has taught us to change a diaper at speeds heretofore unheard of, lest we get (golden) showered. It's become a running joke around here actually. Anyway, up until the middle of the night last night, he was in a diaper, but his swelling caused it to get too tight and leave marks on his legs - so they removed the diaper... Viola! He started peeing. Too bad we didn't take it off earlier eh? ;)

Anyway, no dialysis, more diuretic meds, but that's ok, because we know his kidneys haven't failed. He 's still on Dopamine, Viagra and Milrinone. They took him off of the amioderone, but had to go back up on his epinephrine. His rates and pressures were looking ok after they upped the epinephrine, but he was still very swollen, and though they'd reduced his fentanyl, he still hadn't been waking up any or moving at all.

So we went up a bit later and yes, he was still horribly swollen, maybe even worse, his IV has begun to leak into his arm and make it swell even more, so that looked even MORE swollen so they moved the IV to his foot and elevated his pudgy puffy little hand. But overall, he was OK, and peeing. Seriously, peeing was such good news that we were ok with there being no forward movement with anything else.

We went up the next few visits, and we left after the 2 o'clock visit because poor Ma had the rest of the animals, and we figure she needs a break. We got home about 3:30 and told everyone how he was doing, tried to update my blog, several times - it's now eaten this post THREE times, and then locked me out completely. At about 5, Kory is on the phone with a friend and he comes running through the house, yelling, "Mom Mom the hospital is on the other line and I don't know how to click over!"

So my heart drops because the hospital only calls with bad news, and things can go from great to shit in about 30 seconds with a baby. They hung up before I could get to the phone, and I'm so freaked out that I can't find the hospital number. I'm hunting all over the place in a total panic and after about 2 minutes of that, I realize, that, Um DUH, the number is ON THE CALLER ID! and call her back, completely terrified of what they're going to say.

Nova's nurse answered the phone and I get it out who I am, and she says, "Oh Ms LeClair (haha) I'm sorry to call you, I know it must scare you to get a call from us, but... I'm calling with good news - I just HAD to call you. I breathe for the first time in a good 5 minutes, and sit down for fear of falling over.

In the 3 hours since we'd seen him, he'd peed, A LOT, his swelling was down, his epinephrine was off, his rates and pressures were stable without the epinephrine, and he'd begun to open his eyes!

Now I hate that I wasn't there when he opened his eyes the first time, of course, but chances are I wouldn't have been there even if I'd have been at the hospital because I'm only able to be up there so little (15 minutes out of every 2 hours) and he's still so zooted on fentanyl and Midazolam that he probably has no idea who was or wasn't there, right?

*sigh*
This roller coaster is a bitch, lemme tell ya, but these highs are fucking awesome. I've never been so happy or relieved as I was. She said the doctor was amazed at the sudden major improvement, she was absolutely bubbling over with happiness, and me? Well, I was squealing like a little pig :) It was very nice.

So, yes, we're very very happy right now. We still, somewhere in the back of our minds, are trying to remember that (as illustrated here) things CAN change with mind blowing suddenness, for either good or bad, but right now, we're just soaking up this good news that I was begging for last night.

Pictures in a few minutes, as long as Blogger allows it :)

posted by Erin @ 7:10 PM 1 comments

Friday, February 24, 2006

Stuff I Forgot:

1. Nova is no longer paralyzed because they were giving him meds orally that weren't being properly absorbed because his muscles were paralyzed - including his stomach muscle (am I the only one who went, "Um, DUH!") but he's still so zooted on morphine that he isn't moving at all.

2. They're considering closing the breastbone on Tuesday-ish, but that depends on whether they can get the swelling down by then, they won't do it if he's still so swollen.

posted by Erin @ 11:03 PM 0 comments

Well, his kidneys aren't doing their job, which is why they had the peritinaeal tube draining the fluids from his body. Unfortunately, they still aren't, and he's had no urinary output for 24+ hours, so they put him on lasiks (sp?) to try to kick his kidneys into gear. If that doesn't work soon, they'll put him on dialysis. They've had to increase the epinephrine again because he wasn't holding a steady/acceptable blood pressure without it. He's got a bed sore the size of a quarter on the back of his head that they're treating - they say it'll be a bad enough scar that his hair won't ever grow there, so now he'll have a bald spot. It looks nasty, but they've bandaged it and put some sort of cream on it and they're keeping the weight off of that area by using a gel pillow and keeping his head turned to the side. It formed because of all the swelling, which is even worse today than yesterday. He looks worse every time we see him.

Of course, appearances don't necessarily reflect the actual condition - and the lasiks may kick in in time to avoid dialysis - but they tell me not to be surprised if he's hooked up when we get there in the morning. I don't want him to need it, but if it helps him, I'm all for it, and fortunately, it will be a temporary thing, and as he begins to heal, his kidneys should start functioning again and make dialysis unnecessary. The bed sore will heal, and he'll bitch forever about the bald spot, and I can deal with that. (do they make tiny little toupees? Maybe baby-weaves? haha.)

I'm just ready for some good news. As of yesterday, there was no real forward movement, but we were ok with that because there hadn't been any setbacks. Now his heart rate is elevated, his pressures are back down - his epinephrine is up again, and he's looking at dialysis.

I just need some good damn news.

posted by Erin @ 10:34 PM 0 comments

This is the front entrance - a lighted fountain that is really beautiful and my photography skills do it no justice.

so much more swollen today - he's harder to look at today. I don't think you can possibly prepare yourself for how bad a baby can look. The nurses say it's pretty much par for the course, but it's scarey.

I had Scotty take this picture so you got a better idea of all the wires and meds and monitors. See the blue glowy screens on the right side of the picture? Those are medication dispensers - 4 meds in the top one (epinephrine, amiodorone, milidone or something like that, and one more that I KNOW the damn name of and can't think of it right now) and 3 in the bottom one, only I can't even begin to remember all the names of those - it's taken me this long to remember those top ones!) There's another set up just like this right behind my head that you can't see - 3 more meds in it, including the paralyzing agent. OK, above Nova's head is his bear, above the bear's head is ANOTHER medication dispenser. He also gets 2 more medications - viagra once every 4 hours, and one that is given orally.

Also above my head is another medication in a glass bottle, and behind that (you can barely see it) is one of his monitors- there's a total of 3. Plus to the right (out of the picture) is his ventilator, which is a huge machine with its own monitor and network of tubes and things.
And you can also see that there's a picture of Nova hanging up... All the nurses think he's adorable and fat and chunky and cute (they're used to thin sickly looking babies) and they wanted a picture of what he looks like on a normal basis.

posted by Erin @ 10:33 PM 0 comments

Thursday, February 23, 2006

We did the 12 hour dance, we did the 24 hour dance, now we've done the 48 hour dance. Each little bit is such a huge accomplishment - his little body is working so hard just to survive. (It's so frightening when you realize that you've begun to measure your child's life in 12 hour increments - he's lived 12 hours - YAY! 24 hours - whoopee! THIRTY SIX HOURS! YEAH!!!) So many tubes and wires just to keep him going. But he's doing pretty well, considering. They're weaning him off of the epinephrine, which helps stabilize his blood pressure, and he's holding steady as they take him off of it, so that's good news. His heart rate is still higher than normal, but looking good, and getting better bit by bit - a notch or two lower every time we visit.

His color is better today, but he's a lot more swollen. They say it's normal, but it's hard to see - he actually looks worse tonight, despite the fact that he is actually a smidgen better. It's such a slow process.

We spoke with Dr. Watts tonight. He's very cautious - it's just his nature, he doesn't exactly bubble over with positive energy - but he's honest, and that's more important to me right now. I was talking with Candy, Nova's day nurse, and her comment on Dr. Watts was, "you'll never meet a bigger pessimist, but he takes each case very personally, and he'll always tell you the truth. He just has to be very careful with what he says, especially this soon after surgery."

I have the utmost faith in his surgical abilities, and I knew he took these cases personally when Alexis died, and he had tears in his eyes. I also understand that he can't even begin yet to tell me that Nova is going to be ok, it's too early and he's still so sick. I just, I don't know, I guess the mother in me really WANTS him to say, "OK, Nova's gonna be great, you can stop holding your breath now." The truth is, no matter how well he's doing right now, 15 minutes from now everything could be totally different. And I need to keep that in mind, remember it, and not let myself slip back into that damn sense of false security.

It must be a hard job for him - he wants these kids all to be OK, he invests so much in them, and it has to be difficult not to give in to the obvious needs of parents who just want everything to be 'fine.'

Anyway, there are pictures from today - fair warning, he really does look worse - I don't know if that will really show in the pictures though. I'm going to upload some of them now.

Thank you again to all of you who are rooting for him. He's fighting, and improving by tiny bits.

posted by Erin @ 10:32 PM 0 comments

This is from this afternoon. I don't know if you can tell, but the swelling is slightly less, and his color is a tiny bit better.

What you can see more clearly is the 3 chest tubes (the red ones) and the peritonaeal drain tube (at the top of the screen, right hand cornerish, white thingy coming out of a white square bandage - the tube looks sort of green, there near those red/blue dots.) The blue tube at the top is his ventilator, which is in his mouth and down his throat. The other tube in his mouth is so that they can administer a drug directly into his stomach because it can't be given intravenously.

The black thing on his head monitors his temperature, the gold heart on his belly keeps track of his skin temp, and the bandage on his chest covers his incision. Earlier, it said "chest open" but now it's marked with the date and time it was last changed and the nurse's initials. Up top there is Dad's finger in Nova's hand - the red light is the monitor that keeps track of his oxygen levels - it's wrapped around his little finger.

The wires all go from different electrodes that monitor heart rate and blood pressures in different parts of his body - all attached to a load of monitors. The other tubes are all medicines that go into one or another of his IV's, it's a whole network of IV tubes going to 3 different sites, one in his right arm, one in his femoral artery (right groin area) and one in his femoral vein (left groin area) That pink doohicky is the part of his ventilator that allows them to drain any mucus from his lungs...

Any questions? ;) Lots of stuff... And I didn't even get a picture of all the contraptions that are pumping the meds into him, or any of the monitors (there's lots of them too) and I figured we could all pass on the various collection units for chest drainage, urine output, peritonaeal drainage etc...

Congenital Heart Defect

posted by Erin @ 12:08 AM 1 comments

Wednesday, February 22, 2006

And this is the first look we had at him after the surgery - ok, 2nd look, this is from our 6pm visit yesterday evening, just a little less than 4 hours pre-op. His bassinet was so full of tubes and wires and things that it looked like a bowl of spaghetti, which has earned Nova a new nickname: Meatball.

Congenital Heart Defect

posted by Erin @ 11:11 PM 0 comments

And this is 10pm 2/21, after they added the stomach drain and straightened out his tubes and wires a bit. He's still on about a dozen medications (one of which is Viagra for goodness sakes!)

Pardon the bluriness, to be honest, my hands haven't been very steady the last couple of days (lol, THAT'S an understatement) and it didn't help that at that point, I'd been up for 38 hours straight.

Congenital Heart Defect

posted by Erin @ 10:52 PM 0 comments

Here's Nova with his bear, right after the anesthetist came in, before they took him to surgery. They actually wouldn't take the bear into surgery with him though. I spent the day rubbing him bald like a good luck charm. Everyone I passed in the hospital halls looked at me like I was insane with my little bear, but the little guy did his job and Nova came through.

(for those of you who don't understand, this bear was sent to us by Ang, he's been the guardian angel over a couple of other kids who've had medical troubles, and she sent him to us to look over Nova.)

Congenital Heart Defect

posted by Erin @ 10:30 PM 0 comments

This is in pre-op, about 15 minutes before the anesthesiologist came in to take him. The only baby sized gowns they had were peach, and like a size 3, so he's sporting his pretty-in-pink-pre-op ensemble here.

Congenital Heart Defect

posted by Erin @ 10:25 PM 0 comments

This is right before we left for the hospital. He'd had his last bottle at 1am and couldn't have any more before we left, so I packed him into his snowsuit and put him to sleep in the carseat so we souldn't have to wake him up again when we left at 4.

Have you ever seen those infaltable sumo wrester suit things that people wear as Halloween costumes? That's what this snowsuit reminds me of - and that's what we call it, his sumo suit. It's super thick and warm, and he sleeps like a cham while he's in it, for hours if you don't fiddle with him.

Yes, I put him in THAT suit BECAUSE it makes him sleep :) I just couldn't face him getting woken up hours before surgery and screaming for a bottle for an extended period of time. I was a basket case as it was, if he cried, I was going to lose it lol.

Pardon the other baby stuff and Terra's stroller (the pink thing to the right there) I had set him to the side of the room so I wouldn't have to trip over him in the dark as I packed diaper bags and stuff, which means basically, he was pretty much in Terra's toy box/play area.

Congenital Heart Defect

posted by Erin @ 10:01 PM 0 comments

Wow, what a couple of days. I won't make you read a whole post to find out that Nova is, so far, doing as well as can be expected. He's made it through the first 24 hours, which is the first milestone. He's far from out of the woods but we're allowing for serious amounts of cautious optimism.

OK, here's how things have gone since Tuesday morning. We left about 4, got to the hospital just before 5am. We signed some papers and the anesthesiologists came in to talk to us - they left with him at about 6:15ish. They started surgery around 8am. For what seemed like ages and ages we sat waiting and worried for them to get done and let us know how he was doing. In all actuality, it was only 6 1/2 - 7 hours, which is about half the time we expected it to take. He came off the heart-lung machine very well, his heart started back up and they put him on the ventilator, and he was in recovery by 3pmish. We got to see him for just a minute or 2 at 5:15 in CVRU, and again at 6pm. He was bloated, swollen, blue, and his bassinet was more tubes and wires than baby, but he was "stable" at that point.

We're only allowed to be with him for 15 minutes out of every 2 hour period, on even hours. So we went back up at 8pm and then again at 10, but at 10 they wouldn't let us in. CVRU means Cardiovascular Recovery Unit - it's a ward with something like 20+ people in it. If any of those patients are having "issues" no one can go in, but I just had a feeling that something had happened with Nova, and I was right. His body was retaining fluids which caused too much pressure, which caused his heart to stop, and he had been resuscitated. He came back quickly and his pressures were leveled out. They put a drain tube in his stomach to help drain the excess fluids, and he stabilized again. They just wanted us to be aware of the new tube and what had happened before we saw him.

OK, so we got to see him then, and then they gave us a room (a waiting room with 2 recliners actually) and we went to lay down awhile. They didn't have to call us all night, because he continued to improve overnight. His blood pressures are doing a roller coaster imitation, and they haven't balanced out yet between his systemic pressures and his arterial pressures, but they're well within the "norm" for his condition.

So, he's doing ok, "So far so good" is as good as we can get the doctors and nurses to say because they can't ethically tell you much more than that without taking the chance of you getting heart broken if something happens, because realistically, anything can happen, especially in those first few days to a week.

Sidenote:
CVRU is where Alexis was when she passed away - we pass the waiting room where we were told that her heart had stopped. The dayshift nurse is the same nurse who took me by the hand and told me to touch/hold her hand before she died. Weird situation to say the least - but to be honest, I haven't had the time to obsess about that stuff, and when we know that Nova is really going to be ok, I'll be too happy about him to worry about the memories of that night. Just thought it was, well, a little weird - especially getting the same nurse, who is an absolute doll by the way. She says to me, "You 2 look kind of familiar to me, you know it?" and so I told her that she'd had Alexis... And she totally freaked out and apologized a million times. I felt bad for her, it must be awkward for her eh?

I KNOW I'm forgetting stuff, these 2 days have been a whirlwind of stuff, but I'll remember and post anything important, and I've got some pics that I'll post soon too.

Congenital Heart Defect

posted by Erin @ 9:06 PM 0 comments

Tuesday, February 21, 2006

Sleep is out of the question - I'd have to get up in 3 hours anyway. Not much point, even if I could sleep.

I'm so afraid. Afraid he won't make it, afraid of what he'll go through if he does.

Several people have left comments about how 'strong' I am. I'm not strong, I'm afraid. Afraid to let myself go, afraid that it would be like dumping a bag full of feathers in a wind storm - I'd never get them all back, you know?

So anyway, I've got things to do, gotta find something to do. Keep him in your thoughts and prayers and wishes and, well, whatever it is you do.

Congenital Heart Defect

posted by Erin @ 3:05 AM 1 comments

Monday, February 20, 2006

12 hours and counting, and I'm driving myself insane with the countdown.

Here's the deal, we leave here at 4am and we'll be at the hospital non-stop until sometime Wednesday afternoon. Don't freak out about there being no news tomorrow, we won't even know anything until something like 5-ish (at least) tomorrow evening, when he comes out of surgery - and even then, everything is so touch and go for the first 48 hours that I won't be able to tell you anything even if I do find a pc with internet up there. If I told you anything at all, it would be likely to change before I had the chance to even hit "post." The only way I'll be able to give any concrete info imediately is if things go wrong. So no news is good news, ok?

I'll try to keep this thing updated as much as I can - I think there might be a computer in the 'family library' on the 7th floor (children's hospital), but I don't know if there's internet or not. If there isn't, you'll have to wait till I get home, and I don't even know when I'll be back here - definitely not tomorrow.

Heh, my landlord stopped by. He's such a son of a bitch. When we moved in here, he asked us to leave the utilities in his name (everything is on one bill except the electricity) so that he wouldn't have to pay a deposit and have it all turned back on if/when we ever moved out. It was cool with us at the time because it meant we didn't have to pay a deposit, or wait for anything to be connected.

Well the bill came in last week and today the landlord stops by and tells me that if we don't have it paid by Friday, he's evicting us. We aren't behind on the rent, hell, we've been ahead actually...

Just what I need - more shit to worry about right now, since under the circumstances, I can't guarantee him that I'll be paying it this week. He's such a son of a bitch.

Congenital Heart Defect

posted by Erin @ 8:40 PM 0 comments

Just 19 hours before we leave for the hospital...

Because I don't know what to do with that. I do know that I can't spend a lot of time with myself right now. The dialogue inside my head degrades too quickly. Those ten minute bathroom visits are just enough time alone to set me on the verge. I end up playing mental movies of all the possible outcomes and complications. There's one thing I've learned from this experience already though. I used to consider myself an optimist, but I've realized that I'm not an overly hopeful person. Call me a realist? I don't know, all I know is that with Alexis' surgery we didn't have time to really understand that her life was on the line, and it honestly never sank in that she might not make it through. This time around, I have to face the realities - and as much as I can hope, I can't seem to believe. It just feels like setting myself up you know? Feels like denial. So somewhere in my subconscious I guess I've decided to "hope for the best and expect the worst" as if that's really going to make it easier or prevent the heartbreak.

And there are so many damn thoughts that go along with it. It isn't all about the obvious emotional stuff. I mean, it's stuff like OK, April (my niece) is pregnant, will I be ready when she delivers (in September) to let her have the crib? Or will I want to keep it forever? Or should I sell it to help pay for the funeral. Christ, the funeral, how am I going to pay for a funeral? and things like How will Terra be if Nova doesn't make it? Will she understand? Of course she won't, so how do I explain it, what words do I use?

And I bounce back and forth between thoughts like that, and the ones that I think are going to help me cope with what he'll go through during recovery. I don't know why, and it probably makes no sense, but the thing I dread seeing the most is the chest tubes to drain the fluid off his chest. That, and wondering how much pain he'll be in once he's awake. I don't want to see him suffering. And chest tubes. . . well, long story, but I know that they hurt, that they're very painful.
And the ventilator. . . he can't cry with a ventilator (actually, he can cry, he just can't make any noise) and I have visions of him being awake and crying and wanting/needing something and not being able to be heard to let anyone know it.

And you know what? I have no idea why I'm going over it all here, so enough. I'm not helping anything at all by obsessing like this, and in public no less.

posted by Erin @ 11:50 AM 0 comments

Sunday, February 19, 2006

The morning's first thoughts:

Tommy, Kory, Kassi, Brendon, Terra, Nova. . . There's only 2 days left, how many names will I recite on Wednesday morning?

And I'm trying to mentally plan on a long recovery, 4 weeks of running back and forth to the hospital - worrying about who will have the kids. . . Who will pick this one up from that, who will take so-and-so there. Worrying about how long he'll be on the ventilator, will he have any trouble coming off of it, when will he be eating again, how long will we have an NG tube, how much will he be eating when he goes back on the bottle. . .

But sometimes other thoughts slip in, like
should we have the same funeral home that handled Alexis' funeral handle his funeral
and it makes me literally sick to my stomach when I realize that's what I was just thinking.

congenital heart defect birth defects

posted by Erin @ 6:42 PM 1 comments

Two more days before his surgery. It's unreal how fast these 2 1/2 months have flown by. We've known since before he was born that this was coming, but it seems so sudden. I suppose it's one of those pros & cons things - we've loved every second of our time with him so far, but it's made it easy to slip into a false sense of security and convince ourselves that he's perfectly healthy. Now it's time to face it, and it feels like a surprise.

congenital heart defect birth defects

posted by Erin @ 2:55 PM 1 comments

Saturday, February 18, 2006

Sublime Denial

Denial
is the weakest form of self-defense;
I've known it for years - and yet
I reject the sublime,

for I have rested too long
in the pre-dawn shadows
dabbing at beads of knowledge
as they form on my brow
as if wiping them away
would make them cease to exist.

congenital heart defect, poetry, birth defects

posted by Erin @ 6:41 PM 0 comments

Friday, February 17, 2006

I love you thiiiiiiiiiis much!

congenital heart defect, birth defects

posted by Erin @ 6:40 PM 0 comments

Obligatory nekkybutt picture ;) Note the way the socks compliment the lack of diaper so perfectly, and the way the shadows play so gracefully across his fat-wrinkles. Behold the beauty of the naked form... OK, yeah - this is the one I'll show his girlfriends just to embarrass him when he's older.

congenital heart defect, birth defects

posted by Erin @ 6:39 PM 0 comments

Thursday, February 16, 2006

Now ya wanna hear how my day went? Ha.
We had to be at Dr Watts' office at 10am. At 9, we walk out the door and head for the gas station - the new van is a gas hog - slide the bank card in the pump, (the only money we have, $16.32) and the pump pre-authorizes the sale, which freezes the $16, and the gas station has it set to refuse to pump unless there's $50 on the card. "please see attendant" it says. OK, we do - and she wants to swipe the card inside. Well, now the damn card is frozen because it's pre-authorized at the pump. Yup, they managed to freeze the card, and refuse us service. So we have to go back home and borrow $10 from Mom for gas.

Back to the gas station we go, buy $10 in gas, and realize that now we have about 20 minutes to make a 45 minute trip. Yup, we were late. Luckily, so was Dr Watts, so it was no biggie really.

We arrived at The Sanger Clinic at 10:30 and basically sit and wait for the doctor arrive, at which time, we were sent to their X-ray lab for the first round of X-rays. Then we talked to Dr. Watts about the surgery. He suggests that since it's such a drive there, maybe we'd prefer to do the pre-op stuff while we were there, rather than come back Monday, then come back again Tuesday. "Excellent idea!" think we - and at 12:30 we finish up there and are told to come back at 2.

OK, no money, no extra gas, no way to buy lunch, one bottle left, no pump, and an hour and a half to kill. Ugh, what now?

So we go back to the van and on the way, my dumb ass, not watching what I'm doing, manage to twist/sprain/strain/something-or-other my ankle. Ouch - but who has time for pain? We scrape together enough to get a couple of those gas station 2-for-a-dollar hot dog deals and waste about 30 minutes in the parking lot, eating in silence, both sort of "pre-occupied" with our thoughts.

Back across the street and into the hospital parking lot to wait. It was a pretty day, Nova was sleeping, so we were cool. It gets to be time to go back in... did I mention that the new van is a conversion van and doesn't fit in any of the parking decks? Yeah, so we walk (me on a fucked up ankle) from one end of the damn hospital complex to the other. Go back to the Sanger Clinic to pick up his paper work, and then walk another thousand miles to the front lobby of the hospital.

They told us to go to the front desk, we do - front-desk-lady sends us across the lobby to pre-op registration, who tell us, "He's already pre-registered, go back to the front desk." Um, ok. Front desk lady says, "go back to pre-op registration" and we do. Pre-op registration lady says (with a WTF?! look on her face) "no... go back to the front desk." so we do. Front desk lady, obviously clueless and frustrated, says "OK, well go 'over there' (with a vague directional swish of the wrist) and when someone comes to relieve me, I'll escort you up. So, we go "over there" and sit to wait. and wait. and wait. 45 minutes later, front desk lady comes over and says, "aren't you the LeClairs?" Well, DUH! And she proceeds basically to bless us out for not being in some waiting room where we were supposed to be because the escort person had been looking for us. Never did the woman say "go sit in the waiting room." So she's trying to blame it on us that we've now waited for EVER. Fuck her, thank you very much.

Finally, we get on the way upstairs. Have I mentioned that CMC is farkin huge? It is.

Up the elevator, round the corner down the hall, another corner, down this hall, across here and over there... and we get to the pre-op care station. Here, we are weighed, measured, pee in a stick-on bag (that was amusing by the way) have an EKG, talk to the nurse, deal with the anesthesiologist, and get sent to have blood drawn. Blood drawing is NOT good, so says Nova, at the top of his lungs.

Then off to X-ray again. The x-ray waiting room is approximately 10,000 miles from where we were and the actual x-ray room, or at least, the way we go TO the room is really long. Back into the piggy-o-stat thing (screaming, omg was he screaming) oops, wait... these are the wrong clear-plastic parts, take him out and we'll switch them out. Switch them, then get him back in. 2 minutes and the x-rays are done, and the guy walks me back to the waiting room, which is right around the corner - apparently he took the scenic route TO the room, and the shortcut back. Stupid ass.

It is now 4:15 in the afternoon, my ankle hurts, my son is worn out, my emotions are all over the place, and all I can think at the moment of departure is, "Happy fucking birthday Scotty!" I've spent the day trying not to cry, I've also spent the day watching my cleavage grow deeper and deeper (and sorer and sorer) - my boobs hurt, my ankles hurt and I'm an emotional disaster, but we're on our way home (after another hike across the complex of course.)

We get loaded into the van and I'm obsessing about the possibilities - I'm on emotional overload, which in turn sparks a physical shut down, and I fall asleep in the car like 2 minutes after we get in. I woke up just before we got to the house, feeling emotionally better but my ankle is farkin KILLING me.

It's now swollen and turning colors, I can bear weight on it, but I don't want to because it hurts. I've fallen in love with my pump (lol ok, do you understand the meaning of the word relief? Oy!) and I'll never get to sleep tonight.

Ha! How's that for a marathon post for a marathon day?!

congenital heart defect, birth defects

posted by Erin @ 6:38 PM 0 comments

So sue me for a day. They aren't doing the surgery on Monday, they're doing it on Tuesday. We have to be there at 5:00 am. He'll be in surgery by 6:30 and it will take somewhere between 10 and 14 hours to do. Afterward, he'll be sedated for at least 4 days, on a ventilator and IV fluids, plus a myriad of medicines. He'll be on the ventilator for something like a week, depending on his ability to breathe on his own. He'll be in the hospital for something like 3 - 4 weeks. We spent the entire day today at the hospital - going over the surgery, doing pre-op bloodwork and testing.
Ever seen an infant get chest X-rays?

Well, I didn't take the camera or I'd have taken pictures of it, but here's a picture from the website of the maker of this contraption that resembles a mideivel torture device. (It's called a Pigg-o-Stat... really silly ass name isn't it?) Nova was not amused with being forcefully held in this postiion - not once, but twice, today. No, not amused at all. Not that he was thrilled with the EKG or the needle in his little pudgy hand either. He didn't give a damn about his little pee-bag though, actually, I think he enjoyed the prolonged state of nekkidness.

Fortunately, the helluvaday he had today means that being home, sans needles and testing apparatus, is a welcome change rather than the boring norm, at least for tonight, and he's pretty damned content, which is always a good thing. So, we decided to take a few pictures. There will most likely be many taken over the next few days. We obviously have to document the last few days before the surgery -

I'll probably take a shitload of him shirtless. You know, before the scar. The problem with that is that he's so damned content right now, and been poked and prodded so much today that I don't have it in me to mess with him to get him naked. Let the boy be, you know?

congenital heart defect, birth defects

posted by Erin @ 6:37 PM 0 comments

Wednesday, February 15, 2006

Tomorrow is Scotty's birthday.

At 10 am we meet with the cardiac surgeon so he can discuss what they'll be doing, and when. I keep trying to convince myself that tomorrow is the day we find out when he'll be saving our son's life. It just doesn't feel that way, and I'm fucking terrified. I'd rather die a fiery death than do this.

They prefer to do these major surgeries early in the week, so that during the first few days afterward, they'll actually be in the hospital, as opposed to being on call over a weekend - you know, just in case. So I'm betting that they'll want to do it on Monday, 2/20. Whenever they do it - there's a long row to hoe afterwards.

congenital heart defect, birth defects

posted by Erin @ 6:36 PM 0 comments

Nova was definitely not in the mood to go out for Valentine's Day dinner last night. That thing on his head is a sticker - a kissy sticker to be exact.

As a matter of fact, he's still sleeping it off as we speak! Actually he slept longer last night after we got home than he ever has before - a grand total of 7 hours straight! Woo Hoo! I may get to start sleeping again soon after all!

Terra, when told that we were going out to eat, had this reaction. I think she might be afraid of Golden Corral. I can't otherwise explain this face! If you look closely and see that strange pale lump there beside her... yes, that's her pig. She's had it since she was about 3 months old - she would die without it. It's all worn out (she chewed its tail right off and has his ass looking pretty damn threadbare now) and we bought her another in an attempt to be rid of said pig. Now, we have 2 pigs, one big and nappy, one small and new - and both of them must be tucked in with her when she goes to bed every night. So much for that plan eh?

I got two notable pieces of mail yesterday. One was a "Valen-Swine" card from Erin - absolutely adorable, and of course, with the aforementioned pig-thing we have going on around here, well worth mentioning!

The other, (no picture sorry lol) a letter from the Child Support Enforcement Agency. Apparently my ex-husband has applied for and been approved for Social Security Disability. (I keep wondering if someone finally realized that he's mentally deficient...) Anyway, this disability is apparently the reason that he hasn't paid a damn penny in child support since December '04 - and now that he gets a government check, my oldest 2 kids will now also receive a monthly SS check. No idea how much yet, or if there will be a lump sum due from the time of his application, nor is there any news as to whether they'll be getting any part of the money that he's in arrears for (approx. $16K) What I do know is that they'll be getting more now than what he was paying, and I won't go a year at a time without getting anything.

congenital heart defect, birth defects

posted by Erin @ 6:34 PM 0 comments

Tuesday, February 14, 2006

Valentine's Day: Hearts pierced by arrows, chubby cheeked angels. Ugh. It really is all about perspective isn't it? All about how you look at it.

So here he is - he giggles now, like it just bubbles up out of him. He's talking too, I mean, coo-ing or whatever you want to call it. It was so funny when he first started because he didn't quite have control over what came out, so he'd go to 'talk'

and he'd let out this scream/cry noise and scare himself, then he'd really start crying. It was so funny. But he's got it under control now, and tells all sorts of stories. He's so adorable. He's started sleeping a good 5 - 6 hours a night So it isn't through the night, but it's close enough.

He slept till 9 this morning. So did Terra. Nova adores Terra, and it's a mutual feeling. She reads him stories, and talks to him. Luckily clothes are optional for story time around here. Sometimes she reads near-on naked, sometimes she reads fully dressed. FULLY dressed, winter hat and all.
Actually, this is a picture from our snow day - all 3 hours that it was on the ground.

Hell, it melted so fast she barely had time to be out in it. We had a pediatrician's appointment that day, and Scott let her play in the grass outside the doctor's office while I was in getting Nova's shots. Five shots - why can't they combine them or spread them out or something?

This picture is of Nova and Grandma's arm. Grandma is even more camera shy than I am, and this is more of her than anyone has been able to capture on film for decades.

Don't even think about telling her that I got this one... She'd have an absolute FIT! Not only do I have a picture of her (ok - a picture of the back of her head, but still...) but now I'm posting it on the internet! Yeah, MY mother - on the internet!

congenital heart defect, birth defects

posted by Erin @ 6:32 PM 0 comments

Monday, February 13, 2006

I plugged "Nova" into the sloganizer - these are what came up as I hit "sloganize"

Nova is forever
Nova never die
The future is Nova
Nova is my world
Nova is Forever
Inspired by Nova
Nova - once you have it, you love it.
Nova is my passion

Sloganizer.net

congenital heart defect

posted by Erin @ 6:30 PM 0 comments

Wednesday, February 08, 2006

We went to the cardiologist today. Nova is now a half ounce short of 12 pounds. Amazing how fast he's growing. His numbers fell slightly, but so slightly that it was of no concern, 2-3 points. Dr. Bensky says he thinks Dr. Watts will want to go ahead with the surgery because Nova has reached the optimal age/size range. We don't know anything for sure yet though. There's a weekly conference tomorrow, where they'll discuss their various cases, including ours, and then he'll let us know. Then there will be a pre-op appointment where we can ask any questions we have, voice any concerns we're feeling, and he'll explain in more detail what exactly they'll be doing.

It looks like it's going to be in the next week or so now, although like I said, we don't really know anything for sure yet. Hell, we haven't really known anything for sure all along, so that's not really anything new. But it really feels sudden, and too soon. I just don't know how I'm going to do this, the trip to the hospital to have the surgery will be the hardest trip I've ever made in my life. Harder even than the trip to the funeral home after Alexis died, harder than the trip to the graveside, harder than I can even put into words. Hell, even for me, it surges up in these horrible snippets of mental imagery that I have to shove back down before I 'see' them. If I allow myself to see them, I'll fall apart. I'm back to fighting the tears. Contrary to popular belief, I am not this strong. I just keep reminding myself that this isn't about me or what I can handle, it's about him, and all he'll endure. Thank god that he has no idea what he's facing - ignorance is bliss.

congenital heart defect

posted by Erin @ 6:28 PM 0 comments

Monday, February 06, 2006

Vernus Abortivus

She slipped into bed naked,
nestled under a birdsong blanket,
and propped herself on a pillow
stitched from easterly breezes
and spider silk.

Calla lilies lulled her and she slept
where music ripens on the vine
and sweetens the lips of spring,
the way grape juice
stains a child's smile.

Butterfly wings painted arias
inside her eyelids and hung them
askew in chittering squirrel holes,
but it was the art of suicide.

This exhibit of buds was born too early -
miscarried into a flurry of February,
and all that was left on the drifted canvas
was a strawberry birthmark .

congenital heart defect

posted by Erin @ 6:27 PM 0 comments

Sunday, February 05, 2006

Faithless

The night sky snakes by,
scratching its underbelly
against the leaf litter of
fallen clouds in the tree tops.

Halos hover above foggy porch lamps -
false prophets that anoint midnight
with greasy puddles of holy light.

But God has bedded down
with a lonely housewife
and faith is lost
in the whispered wind.

All that is left is magic
and I hold it,
bloody and screaming
to my craven breast.

congenital heart defect

posted by Erin @ 6:27 PM 0 comments

Friday, February 03, 2006

Garden Still Life

I have to get back to the garden
where there is still life -

where, despite being twisted
and misshapen by the weather
the rosemary thrives

where the sparse rose bush
has grown leggy and wooden
but holds shy leaves

and where the crocus
quietly voices a promise
and struggles skyward.

congenital heart defect

posted by Erin @ 6:26 PM 0 comments

Wednesday, February 01, 2006

We haven't had a phone in the house for years. Seriously. I mean we had the cell, but no hardwire phone. And the cell phone actually belonged to the company Scott worked for, the same one he just took over. Well - apparently, the ex-owner/ex-boss is moving to Wilmington to be closer to his new job, and since the phone belonged to him, he decided that he's taking it with him. He stopped by today to pick it up.

Now I understand that it's his phone, but what exactly does he want Scott to do about all the customers that have that number as the contact number for the company? So now we have to get a home phone. I don't mind that, but it's going to take 2 weeks to get it installed. Digital phone service arrives in my livingroom on Feb 17th - but what in hell are the customers supposed to do between now and then?

And we can't get a cell phone, I mean, we could get like a Trac Phone, but not a REAL cell phone, because we can't at this point afford the deposit that they want in order to give us one.

I hate being broke, it complicates life so much. Money may not be able to buy happiness, but I truly think it does offer a bit of peace (or at least 'simplicity' sometimes.

So if you want to contact Scott to have your yard done - email him... yeah, like customers are lining up through my blog. Not.

Speaking of money, I did some math on all of Nova's bills thus far. One of them was nearly $65,000, and that only covered the first 2 weeks of life... anyway, we're already at a running total of (and this is incomplete at this point because we haven't gotten the bill from Sanger for the 2nd heart cath) nearly $100,000. The heart surgery alone will more than double that, plus NICU recovery time at something like $3,000 a day.

Looks like I laid the doctors a golden egg huh?

congenital heart defect

posted by Erin @ 6:21 PM 0 comments

Nova had his cardiologist appointment again on Monday. It's been a weekly trip since he had his second heart cath on the 13th. Every time we go, I spend the hour ride up there chanting inside my head, "Let the numbers be high, the same at least - let the surgery be put off just another week, just one more week." And the whole trip back, I think about the surgery, the inevitability of it. It's like a slide show in my mind - a slide show of all the images of Alexis after the surgery, her funeral, plus the ones I make up in my head about what recovery will be like. I suppose that means I'm hopeful that we'll make it to the recovery process - but trust me, they're unpleasant images at best. A mother just shouldn't have to imagine her child's chest cut open, or drainage tubes or bloody bandages, or ventilators or NG tubes.

Anyway - when we went on Monday, his numbers were virtually unchanged since last week, and Dr Bensky is going to put us on a 2 week schedule. That means that there will only be 2 more visits with him before Nova is 3 months old, and the surgery is imminent. So, good that Nova is doing well enough that the doctor feels comfortable only seeing him bi-weekly again, bad that I've become psychotic enough to see his life in 2 week pre-op increments.

And here's just to show how shallow I am. Every bath time, every outfit change, every time that Nova is shirtless, I find myself looking at his bare little chest and regretting the fact that soon, that perfection will be marred with a scar the entire length of his chest. I wonder what it will look like, if it will be something kids tease him about, something that will turn women off when he's an adult. We're not talking about a little scar here, it'll be huge - I mean, I've seen scars from open heart surgery before, and they're ugly, horribly frighteningly ugly.

And don't give me any shit - I don't want to hear about how after the surgery we'll look at that scar as a reminder to be thankful he made it through or whatever other crap optimism you're brewing inside your head ok? Of course I'll be happy and thankful when he makes it through the surgery, but I won't see that big ugly scar as a good thing, ok? Ever.

OK, enough out of me for now, I'm feeling too pissy today to post anything that won't come off as being just piss and vinegar.

congenital heart defect

posted by Erin @ 6:20 PM 0 comments