But where to start?

Mkay, Ethan’s red blood cell count has started to drop a bit. When all babies are born the hormone in their bodies that triggers the production of red blood cells stops being produced for a time. It helps to prevent jaundice getting worse (since jaundice is caused by high levels of bilirubin – which is produced when red blood cells break down – still with me?). Eventually the baby’s red blood count will drop to a point that their body signals it needs that hormone again and starts up production (for life). Because Ethan is premature his body isn’t kicking in with that hormone yet – so they’re giving it to him sythetically. As long as his levels don’t drop further then we’re ok, and his body will eventually start producing this hormone itself. If they drop further he’ll have to have a transfusion. We’re not worried about this at all and it explains why his blood O2 levels have been a little wonky the past few days – since his blood is less able to transport that O2 around his body with the lower red blood cell count. Aha! They also started him on caffeine yesterday, instead of the other stuff to boost his central respiratory function (what’s in charge of his breathing/circulation and is immature so it’s causing the Apnea/Bradycardia episodes). We asked if it was a dark or medium roast, and if it’s hazelnut or french vanilla flavoured. The caffeine works just like it does for us – as a stimulant – to keep him from falling into the *too* deep sleeps (where he forgets to breath and his heart starts to lag). Also, Dr. Chris was still there and during our talk mentioned that he had the final report on Ethan’s cranial ultrasound from last week and that he also saw the ultrasound images and says the images are more promising than the report indicates, even, but that things are continuing to “evolve” well and he saw no PVL (yet). They’re measuring Ethan’s head every week, now, and they’d notice should anything awry happen. We’re pretty happy about this, too. They also upped his feedings from 24ml/3hr to 25ml yesterday.

Last night went well up to about midnight. Apparently he was A&B’ing about once an hour after that point. I’m not sure – and we’ll be confirming from his chart when we get in today – but it sounded like they had him on his back for some reason. They flipped him over and raised his bed up because they also found aspirate in his tummy (undigested food) and figured the A&B’s were being caused by reflux (very common preemie thing). The caffeine can cause reflux, or make it worse, but it’s necessary right now. They’re going to start him on zantac for the reflux. Last week Ethan’s sodium levels were a little low so they were giving him more. This week his levels are now high. Yeesh – little trouble maker! They’re, obviously, stopping the extra sodium. Dr. Chris (who called to tell me all this this morning) also saw his chest x-ray and there was a bit of fluid built up around his lungs. Dr. Chris said this could be because of the excess sodium and/or from scar tissue forming from the PIE. They’re going to give him some lasix today to help with that. I expect it’ll help with the Apnea too since there won’t be that pressure on his lungs and it’ll be easier to breathe – that’s just my instinct though.

So all in all things are going well. Some new changes but very treatable and nothing to be alarmed about. We weighed him yesterday and he’d gained 50gm from his last weighing (Sat night) – so he now weighs 1260gm (2lbs 12oz). This is good because Ken and I did some calculating and to keep him on his growth curve (which, granted, is the 3% one) he needs to gain 25 gm/day. The dr’s tend to stick to a “10%” rule (10% of his body weight/week – which would be 1210gm*10%=121gm/wk=17gm/day). We’d like him to move up to the 25% curve so we’re cheering on the weight gain.

Last night, while doing his weighing, Linda wanted to change out his bedding (as the norm) and it was my turn to hold Ethan. The difference was that instead of wrapping him in his blanket and handing him over, she just handed him over. He’d been fussy and angry (as usual when we mess with him) and the exact moment Linda put him in my arms he stopped. Just stopped. Stopped fussing, stopping being cranky, he just lay there quietly. I could have died a happy woman at that moment. I was (and am) amazed at what happened. He’s at the point now where he knows when it’s Ken or I touching him and we can calm him down faster than anyone. It really helps because now I feel like I’m contributing to his care/well-being. Feedback is wonderful, isn’t it?

He was doing so well on the NC that they upped his times to 6hrs on/off (“off” being back to the CPAP). He did well enough on that that they wanted to up him to 9 on/3 off. He disagreed with that idea and made his thoughts known by spontaneously de-satting (his blood O2 level would drop for no reason, enough to set off the alarm – not a huge worry – then go back up on it’s own after a few alarm screams) and by having frequent A’s & B’s (Apnea and Bradycardia episodes). A’s & B’s are quite normal for premies, but raise the anxiety level of the parents significantly – even when we know they’re normal. All that, mixed with that his temp was running a bit lower yesterday morning (though not too low, and pretty stable – no spikes up or down like before which is a very good thing actually) and Ken and I concluded that he’d picked up an infection. It’s an ICU; infections are unfortunately common. It wouldn’t seem he has though. They’ve been playing it safe and keeping him on the CPAP for now, they ran blood gasses last night which were all normal (his acidity level would go wonky if he had an infection) and they sent blood work down to the lab to check everything else – we’ve not heard anything concerning that and we would if it’d shown something.

And so Mr. Cranky Pants is getting a day of rest today. They left him on the CPAP all night last night and tried the NC again this morning but his nurse (who was busy when I called) relayed to us that he was “alarming” again and she was going to put him back on the CPAP for a while. He’s very much insisting on having his rest, little head-butter. He’s not making a very good impression of himself on the unit the past few days. Yesterday, after Ken and I changed him and left for lunch (30 mins), Denise went to check something and upon opening his hatch immediately smelled poop (he hadn’t gone for us – for once). Not only did he poop, but he had magical flying poop which made it all over his bedding, his diaper (several), Denise (who went through 3 pair of gloves in the process) and himself. Little stinker indeed! We apologised profusely when we returned, laughed about it, and scolded our little man for not behaving.

On the good side, yesterday while we had him on his back for a change, he rolled his head from one side all the way over to the other side (moved his chin from one shoulder to the other)! I’m sure this seems like a small and insignificant thing to most people, but given how premature he was, how sick he was (and still is), and how tiny he is – it’s a very good step! He’s been trying awefully hard to do it while on his stomach lately, so I’m hoping within a few days he’ll manage to do so. Most babies do that within their first month, and it’s the first developmental milestone that they track between “normal” and “abnormal” (CP) for for proper development. One step at a time though. We know what to watch for; we know the time frames. We’re going to be realistic, but hopeful.

I’m afraid I don’t have any pictures today. Last night, when we left, we were so stressed and anxious about him that it completely slipped our minds. He wasn’t weighed or measured (Sunday night is “head measurement” night) because he was running a little cool again and Linda didn’t want him out of the isolette (weight/measurements can wait a day). His change-over was as quick as we could make it, too. So instead, I give you others from Saturday that you didn’t get to see. First we have a HUUUUUGE yawn and (one of my favourite poses) our own little SUPERDUDE!! (he does this cute thing where he’ll stretch both legs and both arms straight up/down as far as he can).

Up! Up! and AWAY!!

With good pictures, but we’ll get to those later.

Tonight he pooped on Mommy many times (both diaper changes, at least once during each (twice on the first change, then peed on the second). During his change-over at 5pm he was all fighting spirit and pulled his cannula off no less than 5 times, and his feeding tube out once. It got to the point where Denise and I and Ken were just laughing at his antics. During his 8pm change-over he was less ansy and more angry at us, but we were able to calm him down pretty quickly once it was over. He likes Mommy and Daddy’s touch. His bradycardia was a bit more prevalent today, but that’s going to happen as we make him breath more on his own. He should grow out of it. He gained weight today. 2lbs 11oz!

He’s getting more facial expressions, mostly angry or pouty ones. Some stretching his arms and legs up/down and looking remarkably like Superman. He tends to have moments, after his angry fighting from his change-overs and after the subsequent nap since he tuckers himself out, where he’s got the “quiet alert” stage they told us about in the beginning. He does lots of looking around at us and at anything nearby (fingers, tubes, bedding). We like it because of the way we know he’s thinking about and learning things about his surroundings. Hopefully nothing happens to interfere with his development right now (PVL). He’s also getting better at moving his head around. He spends most of his time on his belly, and he’s almost at the stage where he can lift his head up and turn to put the other cheek on the blanket and look in the opposite direction. He lifts up and his face gets in the way of his turning his head. It’s very encouraging.

Mkay, picture time…
Here he’s just looking adorable, of course. No pig nose, no velcro, no hat, all beautiful.
A closer shot of that cute little button nose (that I think looks like mine, but it could just look like “baby nose”).
Here we have Ethan and Daddy looking very small next to a big Daddy with Daddy’s big hand on his tiny head and bundled in a rather large blanket.
Last but not least is my favourite. I’m sure you can tell why.

We had a great night tonight! Ethan didn’t gain any weight, he isn’t eating anymore than he was, we didn’t get any great or bad news.

Tonight we had some fantastic interaction though. He’s getting much better at controlling his eyes – both in direction and he’s starting to focus on things – and he’s not freaking out so much (over-stimulation) when we touch him, so we were able to get *lots* of eye contact and *lots* of touch time in. We talked, he looked, we changed diapers, he looked, we touched, he looked. It was wonderful, and we’re both completely in love all over again. I got to stroke his face quite a bit, and his lips (I want to give him positive mouth stimulation to off-set the negative stimulation he gets in the NICU). He wanted to suck, at one point, so I gave him my fingertip. He did, then realized that the anteseptic stuff on my hands tastes icky and pushed my finger away with his tongue. I hadn’t thought about the residue until that point, it really *does* taste icky. Later on I gave him his sucky dipped in some milk to suck on. It was kinda funny watching his tongue move all around the sucky tasting it. I think he likes it.

Tonight’s picture is a pretty good one. It’s him on the scale (where/when we take most pics since we get to snuggle briefly before he’s back in the isolette) showing his beefiness at 2lbs 10 1/4oz. He hasn’t gained weight since yesterday, but considering the 3/4oz jump yesterday I’m not surprised. His Majesty, King Cranky is making his special “I’m happy” face.
Ken also took this movie (it’s 7mb, so it’ll take a bit to download) of him while he was lying in the isolette staring around at things. The focus isn’t the best, since we have to take most pictures through the plexiglass, and the shiney thing on his forehead is a reflection, not some piece of tape. I love it because it shows the progress he’s making in consciously controlling his eyes. That, and it showcases his great sucking powar!

M’kay. Ever since Brianna asked, I’ve been thinking about lists to post should anyone want to buy us anything before/for Ethan’s discharge. They aren’t considering discharge yet, and won’t tell us until a week or less, but we’re hazarding a guess around 4 wks. 2 wks until he’s able to stabilize his own body temperature and until they start him trying to feed from a bottle, 2 wks from that until he’s successfully feeding from the bottle (and hopefully breastfeeding as well). We’re going to wait and see though, but until then…

We’ve already bought most everything basic that we need for now, but here’s a few ‘food for thought’ items (note: nothing has to be bought from that specific store, shop around – especially for the clothes).
Baby Center Registry: (top 4 items on the list, most, and the 2nd page items – sleepers and bibs).
Babies’R'Us Wishlist: (‘Toy’ items at the bottom of the list, most, then equally anything on it).
Beyond that, what we’ll most need is cloth diapers when the time comes to bring him home, but we’re not sure yet which brand to buy (there’s so many!).

Today was a good day (except for Kim’s part of it, but more on that later).

He’s off the bili-lights again, and is at least until Tuesday when they re-check his level. It was 4.3 yesterday, when they took him off the lights, so hopefully it’ll stay down. Without his goggles on his eyes were open and looking all around quite a lot.

They upped the nasal cannula to 6hrs on/off. He was on it the whole time we were there, save for right before we left, and his O2 sats remained good the *whole* time. He only had a few bradycardia episodes, which is good. We’re hoping they’ll switch him over to the cannula full time, soon. This is where Kim comes in. She’s tonight’s respiratory therapist (usually we have Ann – who’s wonderful and *very* friendly/nice) and when she was switching him back to the CPAP she was quite rough with him. Vanessa was covering for Maggie (who had to go out on a transport) and was quite busy and Kim was “helping” by flipping Ethan and “settling” him in, as well as doing her resp. thing. After she was done I fixed the things she’d done wrong (settled him in poorly) and tried to sooth my and Ken’s feelings on how rough she was with our son. If we could request not having her, we would. She’s worse than Patricia, and she’s not even a nurse. We’re hoping he can finish needing the resp. therapists soon so that we aren’t faced with her “caring” for (read: touching) Ethan again.

The best news tonight was that in the past day he’s gained .75oz!! He’s surpassed his birthweight now and is sitting at 2lbs 10.5oz (2lbs 10.25oz at birth)! We’re really happy about that! Yay Ethan!

He had his ultrasound today but Dr. Chris wasn’t there as the technician was reading it, so he couldn’t tell us how it looked. We’ll likely know tomorrow though. I asked him if there’s a window for us to watch for with the PVL (and when we can stop worrying about it); there isn’t. He said some babies can show signs of it having developed months after discharge. I’m going to try not to worry about it. As Dad is always saying to me: Worry about the things you can change, not the things you can’t.

I’ve been told to let Janis know that yes, it was a bald eagle you and Wayne saw. Ken saw it one the way to the house this afternoon in the same part of the park as you two saw it. Very cool!

Our pictures tonight were taken one in the isolette where he’s looking very cute and comfortable with his cannula set-up, and one in Daddy’s arms and showing you just how tiny he is. We’re growing though… we’re growing.

We took yesterday off, so our Ethan updates were by phone. He’s doing well; everything is stable.

Ken and I took the opportunity to pick up some remaining things from our “Get before Ethan comes home” list. Mainly blankets and bibs and a few clothes that’ll fit his tiny self. We washed everything (even *our* clothes!), brought up the dresser from downstairs (we won’t have time to strip/repaint it until next summer or until the house is built), packed his clothes away, and had food cooked at home (a very rarity for us lately) for dinner. For a “night off” it was a kinda busy night, so I think I’ll try to take things more easy next wednesday.

Otherwise things are back to the normal weekday schedule. I’m excited to see him today. A bit concerned (read: worried) to see how today’s ultrasound went, but I’d rather know than not know.

I’m updating tonight because I’m hoping to make the most of tomorrow (which means more morning sleep to facilitate afternoon doings-of-stuff). We’re taking wednesday’s off now, so tomorrow Ken’s going to work til 5. I’ll be doing laundry (including all the baby clothes/linens that have been piling up waiting to be washed with baby detergent) most of the day.

Tonight went really well. He’s still under the bili-lights but his levels are *slowly* going down (we hope this means they’ll stay down this time). His chest x-ray came back this morning and he no longer shows any signs of the PIE (Pulmonary Interstitial Emphysema) – that means no more damage is being done, and the already damaged stuff can be joined by healthy new tissue. Remember, too, that he’ll be developing new lung tissue until he’s 8yrs old. They started doing 3hrs stints of using the nasal cannula (the little tubes that go across the underside of your nose with the little prongs pointing up your nose, directing O2 inside) between 9hrs on the CPAP. If he continues to do well with the NC they’ll put him on that next (he’s getting “room air” with the NC, but it supplies much smaller amounts of pressure). He’s “tolerating” feedings much more, and though tonight he spit up a bit when he had his sucky in, we (Ken, Caroline – night nurse whom we’ve had before and like – and myself) figure he was triggering his gag reflex. It wasn’t much, so unless it continues it’s not a worry.

He continued his reputation as a little stinker today by peeing all over himself when Daddy changed him, and then filling 2 diapers while Mommy changed him (as well as pooping while I wiped his little hiney). His poops, for those who’re keeping track, have changed into the “standard” breastmilk-fed poops of a combination of seeds and liquid. His weight went up by a quarter ounce tonight to a total of 2lbs 9.25 oz. That’s very good weight gain, and just where we want to see it. They’re adding a fortifier to his breastmilk which adds 4g of calories (and likely other stuff, though Brenda (day nurse) didn’t know quite what) to the already 20g in the milk. Small amounts that add up. Ken’s not crazy about the fortifier, but I knew they’d be adding it and made my peace with it a few weeks ago. It’s what his body needs right now, so it’s what he gets.

It was lucky me, tonight, to get to hold him between the scale and redoing his bed with a fresh blanket. I was pretty depressed earlier, and thought it was Ken’s turn I think he took pity on me. So our pictures include me. The first one has Mr. Cranky (he gets very upset when we move him around) in my arms with his little pig nose (tape they put on the end of his nose to protect it from chaffing from the CPAP – called a “pig nose”), velcro strip over his top lip to hold the CPAP in place, velcro patches on his temples/cheeks to hold his goggles in place, and feeding tube. He’s not really green it’s just wonky lighting because we don’t like to use the flash on him (for obvious reason). The second picture is my favourite. Not quite as cranky, looking into my eyes, and absolutely adorable.

I can’t believe he’s almost 3 wks old. It seems like yesterday that I was still pregnant, yet his delivery seems ages away. I think about 19 days going past and I can’t fathom it.

This morning he’s doing well. He’s aspirating less and less (Brenda said trace to 2ml amounts) which is a very good thing. His temperature continues to be a bit high, but better high than low (low would indicate he’s got an infection). He had a chest x-ray this morning but we don’t have the results back yet. He’s got another head ultrasound scheduled for thursday to see how things are going there. Ken got to talk to Dr. Chris yesterday and fine-tune our information about how his brain IVH is doing. Dr. Chris says that things are “evolving”; which means that the clot(s) from the IVH are starting to liquify. This is a good thing, though a bit scary because those clots can do one of two things; reabsorb or remain and damage the white matter of his brain (Periventricular Leukomalacia, aka PVL). That would be… less good. The impression we got from Dr. Chris was that our best chances are that the fluid reabsorbes on it’s own.

Yesterday’s picture is chosen because of the context. Ethan had been given a larger/normal-nipple sized sucky (and it’s less girly coloured!) and was doing better with it than the smaller/premie sized one. He’d pulled it out though (pulled, not dropped) and had his arm wrapped around it. Ken went to fetch it and put it back in his mouth and he pulled back and clutched it harder. Envision a little kid desperately clinging/hugging his favourite toy to his chest – the more you reach for it, the further away he pulls and the tighter he holds it. That’s *exactly* what he was doing. It was hilarious! So here he is, in all his photo-light glory! (You can also see his surgery wound, which has healed really quickly – all stitches are out now!)

Huh… weekend was lovely-long, but is over quickly. How’s *that* work?

We got an early start yesterday and headed out to the store to pick up a bunch of things. Fluffy new pillows (which tested wonderfully last night), test strips, ziplock bags, photo prints (fast, cheap, and great quality from the digital camera – cool!), baby laundry detergent (finally!) and pop tarts later and we’ve lost an hour in that damned store. All the same, we get to the hospital around the same time we normally do on weekends/days off, so it’s alright.

Ethan’s been a good boy. He’s still aspirating food (not digesting it) but he’s gaining weight so *shrug* who knows. He’s getting some of it, and yesterday he was getting more than the day before. My theory is that he digests better with Mom and Dad around. We had Rachel yesterday, which was nice, and she was with him saturday too I think. She’s got a few days off, but we’ll see her later in the week. His sodium level is a little low and I joked with her that I should eat more salt. She said yes (though I thought she was kidding at first) and suggested a small bag of chips each day. I’m not much of a chip eater, but I can find other ways to increase my sodium. The cafeteria at the hospital sells V-8, and *that*’s loaded with sodium.

Ethan’s losing another roommate. Lydia’s graduating today. Her stay was brief, but she’s terribly cute and was fairly quiet. Nathan disappeared sometime last week too, though we don’t know if he was moved to the intermediate nursery or if he graduated properly. He was “a good, healthy screamer”.

We ended up leaving a bit late last night because we wanted to be there for his weighing (2.4lbs – lost a bit but that’s alright) – I got to hold him this time (it was very much needed) – and then Jillian got caught up with her other babies and I couldn’t ask for the bottles I needed until almost 9. We’re tired, but good.

We snapped a few pics, of course, before leaving. One from the end of his condo, and a Special Photo for his Nana. She said it’d happen, we knew it’d happen, and we were lucky enough to have the camera close by.

That’s what we took today, which is why there’s been no update (yesterday we got in late and there wasn’t time – sorry). I’ll start with yesterday though…

Sharon and Gram arrived, we ate a hurried lunch and were on our way to see Ethan. When we arrived they were part way through a trial on the nasal cannula (the typical, small nose tubes you see on people with O2 therapy – provides O2 with a *tiny* bit of pressure – not much though). They had it on for 3 hours to see how he did. The O2 went up to 40% (but he was breathing it along with room air so the percentage going to his lungs would be much less) but the important part was that he was keeping his own lungs pressurized. He did well, but we found out later that the stress/work required to do it meant he didn’t digest any of his previous meal. They decided to wait a day or two before trying again, since the calories from his eating are more important. He’s been a little stinker for the nurses lately and twice, thursday night, he pulled out his feeding tube. He really likes to grab onto things, like his CPAP auxillary tube. It’s terribly cute. He’s also got his sucky in, in that picture. You can see that he’s got a little more meat on his bones, too. So he’s back on the CPAP and they’ve been upping his feedings every 12 hrs. This morning he was up to 24ml every three hours (*very* decent amounts for his size/weight) and was only not digesting 4-5ml (which they then gave back to him and subtracted from his next feeding). They’ve been weighing him in the evenings, this week, and on wednesday he’d gained .5 oz, thursday he’d gained 2.25oz! Last night he weighed 2lbs 8.6oz – just a small amount less than his birth weight! We’re very proud of that. He’s transitioned fully to “seedy poops” now, and is continuing to confound us by pooping in his fresh diaper the instant we put it on (and making us change it again). It’s possible it’s a conspiracy on his part to get more touch time with us, but we’re not sure. His little umbilical bump (it wasn’t a stump because they cut it short in order to put the UA (umbilicus artery iv) in) had *just about* fallen off. We got to help with weighing him and Ken got to hold him for a few seconds! (I tried to get vid of it but the camera didn’t take it for some reason.)

Today Ken and I decided to stay home. We desperately needed a day of rest where we weren’t travelling anywhere and could catch up on sleep and just relax. It’s proven worth it because we both feel very much refreshed and ready to put a newly energized step forward. We also figured that today he was having a good day, so we knew it’d be a good day for Ethan to rest as well (without us waking him up or disturbing him too much). It’s been hard, though, and I miss him. I’m looking forward to tomorrow. We’re hoping to get an early start because we need to pick up some things from the store first and we’d like to spend as much time with him as possible.

Dad’s been moved out of ICU and is talking, albeit roughly and gets tired easily doing so. They’re slowly starting physical therapy with him. They put him on a table that tilts up (to help him get used to putting weight on his legs and spine again) and they’ve been putting him up to 30% for 10 mins every other day. It’ll be slow going because he’s been on his back for so long, but it’s progress nonetheless. He’s been having problems with his right side and they’re going to be taking him for an MRI to see what the cause is. They believe it’s possibly something in his spine that’s being pinched because he can still feel and wiggle fingers and toes but he can’t lift his arm any. He’s also having problems with his right eye in that he can see out of it (very good) but can’t control where it goes (though Lea thinks it’s getting slightly more controlled). We’re going to be making copies of those two “clean face” pictures from yesterday and sending them up to him. Lea said he asks about Ethan every time he sees her. He’s pretty bored, since he can’t watch TV or read (can’t see well enough) and he’s in a private room so he can’t talk to anyone unless they’re visiting (which isn’t often, in Lea’s eyes). I wish I could see him, but by the time we can travel he’ll hopefully be out of the hospital (Christmas time).

We received a letter from our immigration lawyer the other day stating I needed to renew my work visa and could I please sign here and here and send him a cheque for $275. Now, money’s a little tight for us at the moment (understandably) so we asked him (email) if, once I have my permanent residence, I’ll need the work visa. Nope, I’ll be allowed to work because of my green card. We asked how long the green card application would take (since it’s been 12 months now) and he said 12-15 months so we ought to renew my work visa since it’d likely expire by the time the green card came through. I informed him of our new baby and that I wasn’t expecting to start working until April. He congratulated me and we decided to forgo the work visa renewal (yay, money we don’t have to spend!). We also received a few things from our health insurance people indicating they had added Ethan to our policy for us (aren’t they proactive!) and would we please pay them the deductible (since he’s already used up more than enough of that). It’s money we’re glad to pay, considering we got the statements for my one night in the hospital for his delivery – it was around $3000. Ethan’s 1hr stay in *that* hospital was also around $3000. I’m amazed it cost so much, and desperately thankful that we have the 100% coverage policy (excluding the deductible).

So that’s about that, for now. We’ll be seeing our little miracle tomorrow, and expect another good day. He’s such a fighter. *proud Momma smile*

It’s been a crazy busy couple days, that’s for certain! First, we got his birth certificate today! YAY! He’s recognized by the state!

Yesterday Ethan was transferred from the vent machine to a CPAP (Continuous Positive Air Pressure), which got a huge surprised W00t! from us! He’s breathing “room air” (they’re still controlling the O2, but it’s at “room air” percentages) and he’s breathing all on his own! The CPAP (little tubes that go up his nose) just make sure there’s enough air pressure to keep his lungs from collapsing. Next step is to get that pressure down (while still maintaining his ability to breath) until it’s no longer necessary and he’s breathing without *any* support at all. They had a little hat on his head to pin the CPAP tubes to, so we can’t see his hair or forehead anymore, and with his goggles on too we can’t see much of his face, but it’s all good steps! The only thing in his mouth now is the feeding tube, which is quite small. He sucks on it sometimes, and has started putting his fingers in his mouth (comfort measure). We tried a pacifier (I was against them at first but it helps to encourage his suck/swallow/breathe reflex – which we need to do – and it’s important to make premies as comfortable as possible – which it does) and though he had no interest in it the other day when his vent tube was in, the instant it was in his mouth yesterday he was suck suck sucking away. He’s not strong enough yet to hold it in his mouth (it falls out) so we prop it against a pillow to hold it in place for him. They’ve been upping his feeds by 3ml/12 hrs and he’s up to 18ml tonight. He’s digesting better on his tummy (with only 2-3ml of undigested food left in his tummy before the next meal time – good numbers because it’s likely the CPAP that’s interfering that small amount). As Dr. Chris said today to tonight’s NP during briefing “I like to throw that away – I prefer to give him fresh stuff – and it doesn’t feel wasteful because Mom’s got lots of breastmilk”. I wasn’t sure how to take that – kinda weird to have a man other than Ken talk about anything to do with my boobs, but give how much we like Dr. Chris I’ll let it slide. Ethan’s also making noises now. Not often, but he lets out little cries when he’s especially mad at something we’re doing (like blood gases).

I spent most of today at the hospital. Janis and Wayne wanted one last visit before heading home so we drove up this morning. Ethan started pooping last night, and when I changed him this morning he was kind enough to “fill” the diaper, wait until the next was under him (but not done up), poop in it, wait til I’d wiped him clean and the next was under, and promptly poop again! Sneaky little devil! It was more funny than anything though, and I’m glad his digestive system is working from stem to stern now. Later this evening he had little pellet-y things in his poop, and Rachel (today’s nurse, yay!) explained that it’s him transitioning between soft and seedy poops. I’m not sure yet what seedy is, but it sounds like the right thing for him to be doing. Today’s biggest excitement happened after Janis and Wayne left when we got an upgrade in accomodations. Ethan’s in an incubator now! His little isolette is now decorated with ducks (though that’ll change with his sheet changes) as well as his good luck clown (it was my Mother’s good luck clown and he started really improving the day we hung it on his bed last weekend) and his little “name-tag” picture (the nurses make one for each baby). Sometime next week, I’d imagine, we’ll start putting black and white pictures and geometrical designs in his isolette for him to look at (babies like those). He’s still under the bili lights today, but hopefully by tomorrow he’ll be off the iv fluids (they’ve been weaning them back slowly as his feedings increase), off the lipids (which go along with the fluids), he’s off the morphine now, and will just be on electrolytes (baby gatorade) and the caffeine stuff for his bradycardia (expected, working well). Things are going very well right now. Phew!

As for the bad news. We aren’t sure yet how to approach telling people right now, which is a big part of why we’ve been putting it off. We hadn’t yet decided how much information to share, or to whome either. However, it would seem the information is already circulating so we want to explain things as they’ve been explained to us by Dr. Chris.

The news has to do with the IVH (Intra-ventricular Hemorrhaging – bleeding in his brain). IVH falls into 4 stages; 1 being the most mild, 4 being the most severe. When Ethan was admitted it was at a stage 2. Last week it had progressed to a stage 4. We wanted to wait a week to see if things would get worse (he’d develop Hydraceaphalus or other problems) or if they’d remain the same or get better. They do the ultrasounds of his head once a week. This week’s ultrasound (though not confirmed by the technician’s report because they’re having computer/printer problems) was looking better (Dr. Chris was there and said it looked better from his pov). We don’t know exactly what stage it’s at right now, but that part isn’t important. It’s getting better. However the problem doesn’t end there. Because the bleeding was as severe as it was, it means he has a high chance of developing Cerebral Palsy. We won’t know whether he will, or to what extent (“mild” or “severe” aka disabiling) until he’s at least 18 months old (corrected age – so that’d be April 2006). The last thing we want is anyone watching him closely and misinterpreting his development or reading into the way he develops and coming to conclusions that may or may not be true. We don’t want anyone treating him any differently than a normal child. Even though people may not intend to do so, chances are pretty high that they will. We weren’t going to tell anyone but our parents and siblings in order to avoid this happening. We figured if it did, we’d cross that bridge (telling everyone else) when we came to it. If it didn’t happen, no one was the worse for wear; no one had any extra worrying or concern to give; he’d just be a normal little boy. I don’t know, now, whether that will happen. I do know that it’s important to me that everyone understand that a) babies develop at different stages – premies and full-term babies alike – each is different and does things at their own pace, b) you won’t be able to tell anything. Even if you think you see something, it’s unfair to him to be diagnosed. We’re going to have a lot of help from specialists and interventionists and therapists to watch his development and encourage the best in him. They are the ones who’ll tell us how well he’s doing, and how normal or challenged he is. c) even if he does develop challenges, and we’ll work around them as best we can, he still deserves “normal” treatment. He’s just a little boy, life is hard, please try to remember that. We’ll be living each day to the fullest and not be thinking too hard on the future since we don’t know yet what it’s going to give us. Try to do the same (in all aspects of your life – I think it’s too easy to forget this sometimes, y’know?).

I’ll talk more about CP later – things we know about it, statistics, etc.

And now, it’s photo time!!

Our little scuba diver.
It’s ALIVE! (this is an mpg so it’ll take a bit to download – do it like you did before).
Our curled up little angel (and my hand).
The little dude’s new condo (complete with little dude!)
And the piece de resistance… (you’re gonna die, seriously)….

Ethan without anything on! And a slightly fuzzy one (but with both open). Can you guess who’s child he is? If he didn’t have my nose I’d think Ken was having an affair on me. We are now comPLETEly in love with him. I’m sure you can now see why since he’s absolutely beautiful! I’m terribly proud, aren’t I?

I believe (and I could be wrong) that I just may be going on a full night’s sleep today. I’ll never catch up the past few weeks, of course, and this is a rarity in itself, but it feels damned good! Ken drove into work today (co-worker, Mike, is doing siding on his house) so after he left I crawled right back into bed. He called to wake me up at 8 (our alarm doesn’t like to be reset) so I could pump and call the hospital and have breakfast then I crawled right back into bed again and slept another hour or so. I woke up on my own this time, so I figure I’m pretty well rested up. W00t!

Our little man is doing well. Yesterday we had Rose again, but she had more time and was more able to talk to us and joke around somewhat. I think the problem before was a difference in communication styles. She’s very to the point about things and I took that the wrong way. She had more time yesterday to talk about them and about her views on his developmental goals right now and how to achieve them best, and I’ve decided that I like her. She was also more open to us participating, so perhaps she just needed a day, as well, to get used to and learn about us and about how much we know/are capable of contributing. They’ve upped his feeding intake from 3ml/3hr to 6ml/3hr. They’ll keep going up by 3ml every 12hr until, presumably, he stops digesting it all or it won’t fit in. He’s also on full-strength Mommy milk, which makes us all happy. His bilirubin levels went up again (they said this might happen and he’d be on and off the lights for a week or so until things level out) so we lost face-time half-way through our visit. That’s alright, we’ll get it back. The new vent settings seem to be doing well, as he didn’t have *nearly* as many bradycardia moments (when his pulse takes a temporary dive). He’s also taking deeper breaths on his own too. His O2 was at 23% last night, and breaths were at 45 (though he was breathing between 55 and 70 most all the time). Dr. Chris was around a bit later than usual and swung by to tell us that Ethan’s chest x-rays were better than the day before’s (yay!) and that the bleeding in his brain (he also had the ultrasound yesterday, though we didn’t expect the results until today) looked better – like it’s starting to reabsorb and shrink back some (huge yay).

My milk production seems to have dropped, somewhat. I don’t know if that’s stress related and will right itself sometime today or tomorrow or if it’s starting to decline. I’m not too worried because I knew this was a possibility, but I’m hoping it rights itself all the same. Ken made up a chart to show my production, his intake, and our storage supplies this morning and it shows we’ll be fine for the next 3 wks or so. Hopefully by then he’ll be able to breastfeed somewhat (pumps don’t stimulate properly for long-term milk production). It may be that I’ll be eating a lot more oatmeal in the next few weeks.

Gramps and Nana are coming down for a visit today. Wayne and Janis will be meeting up with Ken at Altec, then they’ll all drive up here to grab me and we’re off to the hospital. I desperately need to clean the house up. It’s not dirty (well, it’s dusty, but I hate dusting!) but it *is* a mess. When you’re not “living” in your house, just staying there, you don’t tend to bother much with tidying things up. I won’t kill myself, but I’m hoping I can make things more presentable. I can’t really make them worse, at this point.

And now the apology. Last night Ken and I left a bit early because we both had headaches and things to do at home (groceries and phone calls). In the confusion of when to leave (and to get out of there so they could start the evening briefing) I completely forgot to take an Ethan picture. I’m sorry. To make up for it I have another from the day before yesterday that you didn’t see. He doesn’t look much different than this, if at all. I can’t believe he’s two-weeks old today! I’m so proud of how much he’s grown and how much he’s been through! Retrospective: 1 day old and 12 days old (I’ll have a “14 days old” later tonight or tomorrow).

That’s about the mentality I’m in right now. I’m pretty sure of the date (since I write it on labels every few hours) and I tend to count back to figure Ethan’s age pretty often (13 days!!) but day of the week tends to slip by me. Ken said I should do something for myself today. I instantly thought “sleep!” And not just a cat-nap, I’m talking hours.

So today’s schedule is roughly:
now – compooter stuff
next – get laundry started
8 – pump
8:15 – call hospital to see how night went, call Ken with update, fall into coma
11 – wake up, pump
11:15 – tired? sleep! not tired? clean? knit? laundry? yeah… likely laundry
12 – lunch, make Ken’s lunch
1:15 – leave house
2 – pick up Ken
3:45 – arrive at currently favourite destination (hospital)

I think it sounds fantastic!

So yesterday we had Rose as a nurse. She’s very much a veteran, and needs better parental-relations skills. One of the first things she said, basically, was “don’t touch!”. 1) like we don’t already know the “rules”, 2) he’s our baby, damnit. It did not get me in a good mood. Then I had to pump (another “good mood getter” for me) and came out to find I’d missed diapering/temp time. It was Ken’s turn, but I like at least being there during “baby care” moments, y’know? When it was time for the shift change (during which we have to vamoose for half an hour) we went outside and talked and I emoted my little heart out. At the time I speculated that I’m going through some post-partum depression, but now that I think about it it’s not like any depression episodes I’ve had previously. Those were all, pretty much, unrealistic emotions. Thinking back (and thinking now) I’m pretty sure all my feelings are pretty realistic and understandable. I’ll work through it, though. Night’s like last night help, as when we got back to the unit we met Linda (who’s also tonight’s nurse) who’s fantastic! She’s right up there with Rachel. She chatted with us, explained a few things (without talking down to us), and encouraged us to participate in his care (I got to hold the feeding syringe – something small but I’d wanted to do it).

Ethan’s doing stable. I’d say “well” but he’s not there yet. They dropped the pressure on his ventilator (good news because now he’s encouraged to take deeper breaths and it’s not as harsh on his lung tissue), his heart rate wasn’t freaking out as much (and we’re getting more used to the idea that it’s ok if it does this – as long as it doesn’t drop below a certain point), his bilirubin levels were low enough that the lights were gone (YAY!!!), he’s off the ampicillin (for the sepsis), he’s holding his body temp stable (very good news – if he should develop an infection his temp would go wonky and start dropping), he’s being weaned off the morphine (very slowly, of course), and he’s being fed diluted colostrum/breast milk 3ml/3hr and doing well (he even had a tiny smidge of poop in his diapers last night – digestion is a good thing). The goal right now is to help him wean off the respirator and help him “gain and grow”.

Because the bili-lights are gone, they’ve removed his goggles and we got to stare at his little eyes the whole time. They wiggle all over the place (he doesn’t have the muscle yet to control where they go) but he *can* see things that they’re pointed at (like us – when they’re pointed at us – or rather, he can see our nose – the rest is still fuzzy for him). They’re very dark (it’ll take a few months for his baby pigment to come in) but beautiful. He has the sweetest, tiny little blonde eyelashes! He’s started putting his hand up to his mouth and he sucks on his vent tube sometimes (both good things as they’re comfort measures and encourage his “suck/swallow/breathe” development). He’s still a little unsure about us touching him too much (over-stimulation) but he likes his head held and he likes the bottoms of his feet rubbed. Linda explained that some babies, by the time they’re discharged, don’t like their feet touched because of all the negative touching they receive in the NICU (they have iv’s and a *lot* of blood tests done in their feet). I’m going to try and give him some positive foot stimulation every day, to counter that. If it works, great, if not then that’s alright too. It’ll fade, eventually.

Today’s picture is a little dark. We had the lights all off (even the “exam light”) because he’s so used to the goggles and darkness that they bother his eyes and over-stimulate him. The camera did pretty well though, considering. Only his colour is a bit off (it’s better than the pic indicates). You can see (if you look) the extra skin around his joints left-over from the edema. We’ll be plumpin that up soon, I hope. On the left are Linda’s hands (it was just after a “work-up”, and on the right is Ken. Ethan grabbed Daddy’s finger and refused to let go almost the entire time. It was so cute!

This morning’s gases looked good, so says Rose (new nurse). He’s been stable all night.

Ken and I can’t shake the feeling, though, that something’s wrong. Even amidst reassurances that his pulse dropping is “normal for infants his age” because the part of his brain that regulates breathing and heart rate isn’t fully formed yet, we’re still very uncomfortable with it happening. It wasn’t happening until yesterday, why would it start all of a sudden?

I’m also exhausted. I’ve been falling asleep here for over two hours, catching up and waiting to call the hospital and waiting to pump and now waiting to play with the bread dough that’s rising in the oven. I’m hoping to squeeze in an hour nap during the 2nd rise. I’ll be able to get up in time for the bread to be baked and to pump. *eyes rolling* I’ve decided that pumping sucks. It’s a very mechanical, sterile process. Not bad, I’m sure, when it’s occasional, but when it’s all I’ve got… *sigh* I don’t feel like a cow, as most people joke, I feel like a machine. It’s supposed to be emotional and loving and tender time to spend with my baby…

I need sleep.