So, as I’m sure you’ve guessed, we’ve been busy. Fist things first, Rhys is doing VERY well. We’re so proud of him. Also quite thankful he’s had some smooth sailing because Heidi has been sick. We haven’t been able to visit for awhile now. Heidi for obvious reasons, and I haven’t because I’m paranoid that I might give him the cold even if I’m not sick. I did go visit him today, however, since I was away from Heidi all day long and she is feeling much better. Heidi will likely go to see him on Monday or shortly after.

Recent news finds Rhys extubated. They kept lowering his oxygen and it got to the point where the tube was more of a problem than a help. Kind of scary but we’re glad he’s doing fine off of it. They put him on the CPAP where they force air into his nose to keep his lungs open, which he doesn’t like (I don’t blame him). But recently they’ve started what they call sprints where they take him off of CPAP and put in regular nasal prongs with a gentle flow of oxygen. He likes this MUCH better, and is doing quite well. He started on 8 hour sprints and now is up to 12 hours. He’s getting vibration treatment (stop giggling!) again to help loosen the crud in his lungs and seems to like it. He’s still on a feeding tube and getting periodic feedings every 2 hours. They tried every three hours, but he didn’t take very well to that… Baby steps. :)

All in all tonight when I saw him he looked comfortable and seems like he’s surpassed a major milestone! Way to go kiddo!

In other news, Drewberry gave me a new rack for my computers! He’s cool like that. It’s an old beater of a rack, but it does the trick fine and has helped me contain my computer hardware addiction a bit. :) Now I need some rack mount cases and I can finally build that server! Yeeee haaaa! I’ve also wiped my gaming machine. I installed Gentoo on it and decided I can play my games in Linux. No need to contribute to the evil empire more than necessary. Now if I could just get Heidi to see the light, we’d be a Microsoft Free zone. :) One day I’ll convert her. :)

Rhys on the 27th (with CPAP)

Rhys today! (without CPAP)

So, I’ve taken a bit of a break from updating the site. Honestly there isn’t much news to share, which is a very good thing. Let’s see, how do I sum up the past few days? I’M FLIPPIN TIRED! How about that? I feel like I’ve been hit by a mac-truck, kicked in the chest by a horse, punched in the face, dragged through the mud, and finally dropped off a cliff… Wheee. I know I know, woe is me. Yeah, well, buckle up, it’s a pity party! ;) No, no, I’ll spare you.

Rhys has gained some weight since last update. He’s 3 lbs 8.6 ozs now. He was weighed today and didn’t gain any, but didn’t lose any either. He’s still on a continuous feed right now. The goal is to get him on periodic feeds rather than continuous, but he tolerates the continuous feeds better and it’s more important that he is keeping the food down. His vent rate is down to 20 bpm right now, and his resps are at about 40 – 50, so he’s taking half the breaths on his own. He’s scheduled to have the vent rate turned down to 18 tomorrow morning. He’s tolerating everything much better in general. He’s still desaturating from time to time, but he recovers quicker and he is doing it less and less.

Mom got to kangaroo him today for about 2 hours! That was great. She’s been kangarooing every chance she gets. Now he’s tolerating the sessions better. He has always been fine with it, just the moving from iso to mamma and vice versa would bother him usually. He’s off of his antibiotics now, and seems to be in the clear with regard to infection. Whew! He does have some swelling in the groin area. One nurse said it was pretty typical of preemies, and another nurse said it may be a hernia and we should keep an eye on it. So, time will tell on that one.

I got to hold him for the first time ever a couple days ago! It was great. The feeling was indescribable! I can’t wait for the next time!

All things considered life feels a slight measure better than a couple days ago. It still feels like a nightmare, and I still feel like a zombie after only 8 hours of being awake, but it’s nice to have something to live for. Something to give me meaning and purpose. :)

Rhys and I

Rhys in his bundle

Rhys says, ENOUGH PICTURES DADDY!

Things are still moving along pretty well here in our little family. Rhys is gaining weight, officially up to 3lbs 7.6ozs. He’s still doing all the things a little baby should do: pooping, peeing (once all over the nurse), sleeping and fussing. His cultures so far have all come back negative. They drew more cultures today from blood, aspirations, and urine (poor guy). Hopefully these also will come back negative. On the very positive side, his aspirations are no longer yellowish. They aren’t clear — they’re cloudy. They are testing the new cultures for fungal infections.

Today, Lola (that’s what you call a filipino grandma) got to touch him for the first time. He didn’t seem to mind her company at all and I hope Lola enjoyed it too. :)

We’re both quite tired, and nurses are beginning to verbally nudge us to get out and go home. It’s much easier said than done, but we are trying. It’s just so hard to push it all out of your mind… Well, I’m off to bed and tomorrow is another day.

Rhys and Lola

So, at the end of the day tonight we found ourselves pretty much back to the same ol thing that we’ve been used to regarding Rhys. That’s not the best of news… He was re-intubated today because his breathing was very labored. Once he was tubed they discovered he had lots of secretions in his lungs. This was very likely the reason he was having so much trouble off the tube. With the tube in they can easily suction his lungs, and without it he has to cough it out himself. The bad news here is not so much that he’s back on the tube but the secretions appear to be pneumonia related… So, off to do cultures it went. We’ll find out tomorrow.

The nurses and docs say this is fairly typical and no real worries considering he is still in the ICU. If there is an infection the positives are we caught it early, and he is already on antibiotics to fight it. He looks much more comfortable on the tube again and his color is much better, so infection aside I think he’s better off. He also gained weight (but, this could just be the weight of the tube). He’s at 3 pounds 4 ounces! Yay!

Now for the comic relief part. Boy, is this one a doozy… The nurse informed me when I was there that they are now giving him vibration treatments for his lungs. Basically they vibrate his chest to loosen up any gunk and yuckies then suction it out. So, when the respiratory therapist came in the nurse asked him, “Do you have the vibrator?”

Of course being male and thus having my mind in the gutter for the better part of the day I think to myself, “Huh huh… You said vibrator…”

Lo, what happens next? The respiratory therapist pulls out a big ol vibrator! Yep, you guessed it. Your standard issue sex toy. I’m reminded of those Sesame Street skits where they put a bunch of things on the screen and sing “Which One of These Things Doesn’t Belong Here”. Now, it wasn’t the detailed kind that actually resembled “man’s best friend”. It was the more modern issue stainless steel type. It looked like it would be…. uh…. cold. :) Anyway, I suppose it’s quite appropriate for the job at hand (boy, there’s a pun in there somewhere). Just something about a big black man smacking his gum and reaching into your son’s iso with a vibrator that is wrong on SO many levels… I need a drink….

So, today at 2am my son decided he’s had enough of the flippin tube down his throat. He yanked it out himself! Been breathing on his own since then. They’ve got him on CPAP now which is a constant flow of pressure through his nose to keep his lungs inflated. I don’t know that he likes it any better. He desatted down to the 50’s when I was there tonight. Was very scary. He still may be intubated again, but as before it’s not a step backwards if he is. All other things are about the same tonight. I’m not in top form tonight so will cut this short. My mental capacity feels very full and tapped… Time to relax… Errr, try to relax that is…. Ahh who am I kidding? No relaxing for the next 18 years!! hahaha

Rhys with his CPAP

Another day of work, and I survive. It wasn’t the most busy of days, but I sure feel like it was. I’m not quite up to 100% I think, and things are tiring me out mentally still quite quickly. I had some folks come up to me today and ask how Rhys was. It was after the third person that I realized people may be mispronouncing his name. :) So, I thought I’d give a phonetic spelling to clear all that up. It’s pronounced Reese, like the candy. :) Not Rice like my favorite food. :) No harm no foul, but I just realized what doom we are sending our child into… I mean, I have to put up with it with Allen and our last name. All my life spell everything out… Ugh… So, what do we do? We name our son Rhys Allen! lol Oh well. I still love the name.

He’s doin as well as he was last night. Heidi kangarooed today again, and it seems this will become the norm and not the exception. I will kangaroo on Wednesday and hold my son for the very first time. I am so looking forward to that. He lost some weight today, but that’s ok. It wasn’t much at all. He was at 3 pounds 0.1 ounces yesterday! We were so happy to see him over 3 pounds. Today he slipped down about 20 grams. You do the math.

We had some desaturation episodes which are the most terrifying thing on earth. But, that’s pretty normal for him. Though tonight I got to watch him dip down into the 60s! Boy that was fun. Kinda like poking a lion in the eye is fun… But, as we left tonight he was resting and his sats were very nice. Time for parents to have some “us” time. You know what that means! ::wink wink::. That’s right! We’re gonna stay up and watch Nick at Night and pig out on stuffed salmon! :) heh

Rhys getting weighed

Baby boy resting