Officially

So Blake officially has Alagille's syndrome. Well, they're 99% sure that he does, but that's pretty high odds. I decided to try to promote the awareness of it, so I've made a facebook group. There's no prevention, but there are a lot of people who have it and don't even know, since the symptoms are so mild. But if they have it, they have a 50/50 chance of passing it onto their kids, and it may not be so mild in them. The sooner they know it could be a possibility, the sooner things can start being treated and help out. Plus it'd just be nice for people to know what the disease is. And it'd also be nice for cashiers and other strangers to stop telling me that he looks jaundiced. "Thanks, it's the liver disease."

Anyway, his form of it doesn't seem too bad. He's jaundiced and he's got the congenital heart defect, but right now none of it seems too serious. We're very lucky for that, there are a lot of kids out there not so lucky. Oh, and he's 10 lbs 3.3 oz, completely naked. :D

This is him on the way back from Gainesville. He's such a sweetie. :)

So exciting!

Blake can now roll over BOTH ways! It's so cute. He finally officially did it yesterday. :) So last night he was rolling around his crib, belly, back, belly, back. :) I had his toys lined up neatly on one side. When I finished folding his clothes (that's why he was in there in the first place), his toys were thrown across the crib, everywhere. It was cute!

Today, when I got home from work, I went over to him (my mom was feeding him), and he started grinning and laughing and squealing! It was SO sweet! He's never laughed that much before, especially without me tickling him or anything. Just melted my heart! I love him so much. He is now (well, as of January 12th) 9 lbs 12.5 oz, 24 inches. He's getting so big!

Maybe a diagnosis?

Well not sure, but it's looking more and more like Alagille's syndrome. We went to the cardiologist the other day (9 lbs 6 oz btw!), and they determined the reason for his heart murmur to be peripheral pulmonary stenosis. Right now it's not really bothering him at all, but they're going to watch him very closely to make sure that it stays that way. So the possibility of heart surgery is still there for the future, but for now he's fine. And his liver problems have seemed to pretty much plateaued.The bilirubin has quite rising, and maybe even has dropped some. His liver enzymes however have continued to go up, so liver damage is still present. :/ But anyway, since he has that heart condition and the liver problems, the cardiologist said that it makes her very suspicious of Alagille's. I guess it's nice to POSSIBLY have a diagnosis, but I was hoping it wasn't this. If it is in fact that, I need to get tested to see if it's my gene that did this. I hope not. I hope to never put another kid through all of this.

Anyway, he is getting so big! I mean, no where near where a five month old usually is, but compared to where he started at, it's amazing. :) He's such a little sweetheart. And he's starting to interact with strangers more. Normally he wouldn't smile or anything around people outside of family. I'm sooo glad he's starting to.

I started him on solids. The first day he loved it, but after that, not so much. :( I've been trying every morning, but still not much enthusiasm. Maybe he's not really ready yet. Just all of his doctors have told me to start him, so I did. Ugh, and I still haven't went to get him vaccinated. I don't really want to do it. I just think it's weird that a lot of people that I know have had theirs vax'd, and have been sick. Blake isn't, and hasn't even had a cold. Stella isn't, and she hasn't been sick either. Coincidence? Maybe. But his doctors urged it, since he's got all these other problems, and his pediatrician isn't one to push vaccinations, so I'm guessing it's really important that I do it. Nothing about motherhood is going as I planned. But I'd never trade Blake in for the world.

He's almost sitting up on his own. :) SO close! OH, and yesterday Blake saw Stella and they were just smiling and smiling at each other, so so soooo precious. I wish I got a picture! Speaking of pictures, I did get him some 4 month/Christmas pictures done. :) Check them out!

Not much new

Still no idea what's up with his liver. But he has hit 7 lbs! My guess is that he's probably around 7 1/2 lbs right now. :D

I think I'm giving up on breastfeeding though. :( It makes me super sad, but I'm pretty much completely dry. Plus, on breast milk, he doesn't gain weight. Regardless, I still really want to, but like I said, I'm dry. I guess I'll be a little more experienced for my next kids though. Still kills me. :( And on top of all that, I freaking love my LC! I'm gunna miss her a ton. Trying to decide if I should continue to attend the LLL meetings. Sarah (leader) told me to please feel welcome to keep doing so, but I feel a little awkward, since they can all breastfeed their babies/toddlers. Even though I loved going to those too. I don't know, maybe after meeting with my LC tomorrow I'll become inspired to keep trying, who knows. I'm just losing faith that I'll be able to do it. He doesn't want to do it even, he's been spoiled by the bottle. And I've had thrush that I can't kick. So pumping is painful (as is hand expressing), and I don't even get anything. And he won't really even latch, with or without the shield. And then when he won't, I get so upset everytime that I end up crying. I have an SNS, but if he doesn't latch, then what good does it do me?

I've been using some gDiapers that Sabrina gave me (thanks!), and just have been sticking some fold up prefolds in them. Love them! I haven't dived in full force yet, since he's still a little small to really wear them, but he's getting there! I try to use them at home, either when he's wearing a shirt or a bigger onesie, since they're not as trim as disposable diapers and kinda stretch out his newborn onesies. :( Only thing I don't like about them. Other than that, fantastic! I'm just not ready to retire his newborn onesis yet. He's just started fitting perfectly in them not long ago! So not yet. Plus I'm pretty sure mom isn't ready for cloth. Not sure she ever will be. But yeah, I don't use them anywhere but home during the day so far, just b/c he's too small still and they tend to leak a little. Actually they've only leaked once, and he was laying on his side with me. So I guess his winky went with him haha. They look so cute on!





See what I mean??? Just the cutest thing. :)

I have some new pictures of him smiling, I'll have to upload them later though. Too lazy! :D Plus don't want to disturb my sleeping angel who's napping in my lap. I love my cuddlebug! <3

I'm horrible at this whole blog thing haha

Well now to play catch up!

Sacred Heart did tests and decided to send me to Shands Hospital in Gainsville. The other week we went back there and Blake had a liver biopsy done. He doesn't have biliary atresia, so yay! :D He does have some form of liver disease, but I don't know what kind yet...don't know that the doctors know either. I've also started taking Blake to an actual pediatrician, Dr. Tartarilla. Amazing doctor! :D

Going to Sacred Heart only worsened the breastfeeding problems though. :( I almost had him onto the breast, but then when we went there the told me to quit nursing so they could tell exactly how much he was getting. Since then my supply has been dropping lower and lower. Now I can hardly even get him onto the breast with the shield even. This is a problem, since I now have an SNS and I kind of need him on the breast for it to work. I need him at the breast so he can stimulate it. Now when I express I can only get about 10 mL combined. That's horrible! I can't even pump anymore b/c it's too painful. So I've just been hand expressing everything. I just don't want to give up, I want so badly to be another success story with breast feeding. I got him to nurse with the breast shield for about 15 minutes today, so that was awesome. But I haven't been able to get him back on after that. I've been seeing an LC out in Pensacola. Her name is Susan and she's just the sweetest thing ever! I went yesterday and Blake weighed 6 lbs 6.6 oz (666 anyone?). He's finally starting to gain weight at a normal pace. Good thing, I mean he's 11 weeks and that's all he weighs. But just two weeks ago he was only 5 lbs 9 oz. So it's improvement. :)

I'm really wanting to make the switch to cloth diapers. I have two gpants and liners, thanks to Sabrina. :) So I can officially try it out now. Well, kinda. He doesn't really fit yet I don't think, but I think I'm going to try anyway. :D And I have my moby wrap now, and i just LOVE it. And I've gone back to work. It's okay, I just miss Blake tons during it. :( And I want a bigger diaper bag, since it seems that mine keeps shrinking, haha. Idk, I seem to always be wanting something.

For some reason I really feel like cooking. Its weird! Like I'm just having this huge urge to be a house wife all of a sudden lol. And I'm in a catch 22. Like, I want to move out and have space for everything, but at the same time I don't want my mom to miss out on any of Blake's growing up. Enh, not like I can afford to move out anyway, but still. Oh well, guess I have plenty of time to do it lol.

not so great news...

well, me and blake are at sacred heart. he got admitted the day before yesterday. we're trying to find out why he's not gaining hardly any weight (even though he eats well and has good amounts of diapers) and why he's still jaundiced at 7 weeks. they've done a lot of tests and so far they've found that his liver shows irritation on one of the blood tests, so now they're doing a million other tests to try and see what's wrong with his liver. depending on what it is, it could be the answer to both mysteries. also depending on what's wrong, he may need surgery. god i hope not.

to be continued i suppose. :(

it's been a while, sorry!

So Blake is now six weeks old. Where has all the time gone??? He's getting so big. Well, kinda. He's still itty bitty, but he's bigger than he was six weeks ago lol. He can already roll over from his tummy to his back, starting around 3-4 weeks. He's so strong! And he's kinda starting to smile. :) Working on it anyway, he doesn't do it too much right now, but I'm hoping that maybe it's just because he was born three weeks early. I just really wanna see his beautiful smile more regularly. Regardless, I love him so much.

The doctors are worried that he's not gaining enough though. Last week he was up to 4 lbs 14.8 oz, but still that was at exactly six weeks. He should be gaining faster than that. Tomorrow I'm bringing him back for a weight check, so I'm hoping that he's over five pounds now. That'd be cool. :)

Breast feeding is getting easier. Kinda. He still won't latch without the shield, but he's getting more proficient at the whole sucking thing. I've eliminated bottles too, so he hasn't had any in I think four days. :) And no formula for three, almost four days. Woo! :D But now he pretty much nurses all day. For real. That's pretty much all he does. At least my supply seems good, but I need to start saving some up for when I go back to work. Really I think I only need to save enough for the first day, and then I can just use what I pumped at work for the next day I work. Luckily she's only starting me out on two-three days a week. I go back the first of October. Not looking forward to it. But Blake's expensive and I definitely need to make money. Anyway, I've started seeing a lactation consultant to help me and Blake out, and I've started going the the La Leche League meetings. I love them! They make me feel like I'm not alone in my struggles. :)

So I didn't plan on it, but I've kinda gotten into attachment parenting. I co-sleep with Blake, he doesn't like to sleep any other way, plus I can respond to him quicker. I hold him all the time and I'm going to get a wrap so that I can do so hands free (can't wait!). I was only planing to breast feed for the first year, but I might go longer, like maybe two, three years. I don't know, I'll see how I feel about it then. I'm kinda wanting to check into cloth diapering too. Well, I've already checked into it, but I can't try it until he's bigger unless I wanted to use prefolds, which i don't really, so I'm just gunna wait. Besides, it'll be nice to use up most of these disposable diapers that everyone got me.

Blake can almost fit into newborn clothes now. :) A lot of them are still pretty big on him, but his preemie sleepers are too small on him now (he's so long!), so it's kind of an awkward stage, clothing wise. His preemie onesies and pants still fit, and he's starting to fit better into his newborn onesies (well, only some of them). He's getting there though.

Finally, now it's picture time. :) These were from 3 weeks, and he's getting his one month pictures soon, I think next week sometime. Yay! I'm so excited, I hope he cooperates. ♥