Thursday, January 28, 2010


I really need to get some stuff off of my chest.

Last night I was searching for groups for Alagille's syndrome, just so I could talk with other parents about it, compare things, and just have support in general. I couldn't find any. Seeing that there aren't any online for it just makes me feel alone in the struggle. I don't know anyone who has this disease. No one. The doctor Blake sees in Gainesville said that he has only seen about ten patients with Alagille's syndrome, and Shand's is supposed to be the main hospital for the whole southeast. And that's all he's seen? That's crazy. I didn't think it was quite so rare. Does that mean that ther eare only about ten people in the southeast that have this disease? Or are a lot going elsewhere? I know Philadelphia has a hospital for Alagille's syndrome.

I'm trying to be brave, especially for him, but a small part of me is scared. Make that a big part. I'm pretty sure he'll be okay, but still. There's a 10% mortality rate that goes with this. Mortality. That word just sounds so grim. That's higher than I'd like. Everything that has happened to him has been uncommon. The two vessel cord had a small percent of happening. His toes not developing all the way had a small chance of happening. Alagille's syndrome had a small chance of happening. His HIDA scan didn't work, there was a small chance of that happening. Blake is the king of making rare occurrences happen. So that lowish mortality rate doesn't exactly make me feel better or put me at ease. Everytime I read that part when I'm reading up about it, my stomach churns. I have problems seeing Blake as a toddler, but can anyone really see that? I just hope it's not a premonition about the future. I had problems seeing myself holding a baby girl when I was pregnant and didn't yet know the gender. I didn't really want to believe it, so I pushed it aside, but it came true. I hope this isn't that type of thing. I don't think I could function if I lost him; I would be lost. He is the absolute love of my life, and I would literally kill for him if I had to. He's made me into such a strong person, I think. Can you be strong and still be scared? People always tell me that it'll be okay and it'll be nothing. I don't think they realize that this won't go away, he'll have it his whole life. There is no cure. Blake will have a life full of doctors appointments and tests, and I'm so sorry for that. I know it could be worse, and I'm very thankful that it's not, but still I miss the early days when I didn't have to bother with at least three doses of medicines a day. I know it's not my fault that this happened, but it's really hard to not think in the very back of my head, "what can I do better next time around to prevent this?" The answer is nothing. If I don't carry the gene, then I most likely won't have another kid with this, unless my next partner has it. I hope not.

In my search for groups, I came across this group of moms whose babies were diagnosed in utero with fatal diseases and they decided to carry to term. It was so sad. I was crying while reading all of their stories. Most stories were of their babies clinging to life for an hour or so before "growing their wings." Some less, some more. This one woman had to have a c section, and she said that it was the hardest thing to do because not only was she choosing her daughter's birthday, but also the day she died. I can't even imagine. i remember that there was a time or two that I was scared that Blake wasn't gong to make it. We didn't know what to expect when he was born, would he be able to breathe, would he need immediate surgery, etc. It was a horrible, horrible feeling just thinking about him possibly not making it. But to know that your baby won't make it. To know that your angel wouldn't make it to the first year, the first week, even the first hour of life. It's so unfair. Then to decide to carry it to term or to decide to terminate it then. That would be so hard and I hope to never ever be in that situation. And then for next time, being terrified that it will happen again. Having to go through all of that grief again. I don't know if I could handle it. i think if given the choice, I would carry to term. As one mom put it, I would want to give the baby a chance to take a breath, open his or her eyes, before leaving. But I would never want to deliver. That would be the hardest part, the labor of such a delivery, knowing that you are slowly killing your baby. Again, I hope to never be in such a situation. I hope I die before any of my children.

Sometimes I do feel alone. I feel like I have to be strong for everyone. I am a calm person, and in general I handle it well. But I feel like I can never just break down for a while without people telling me it will be okay. I know it will be, but I just want to put my worries out there and get them off my chest. Just for some one to listen, I don't really need advices.

Also, if one more person tries to tell me that I'm too young to be a mom and that it's hard, I think I'm going to scream. Just because I'm young does NOT mean that I'm a bad mom. Age is just a number. I'm not even that young. I've been an adult for a while. I'm not even a teenager. I have a job, and the only thing the government pays for is his formula and his doctor visits, which I put into the system through taxes anyway. Do not try to tell me how hard being a parent is. I think I might know. Don't tell me that I don't really know. You have no idea what I've been through. I can promise you its more in his first six months of life and even prenatally than what their kids have been through (the ones who tell me this). And just because its hard doesn't mean that I would even thing about trading it for the world. I love being a mom, and I've always wanted to be a mom. I get that lecture way too often, and I'm just sick of it.

Anyway, on a much brighter note, Blake sat up for the first time today unsupported for a while!!! Yay! :D Growing up so fast. <3


Wednesday, January 27, 2010


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. :)


Wednesday, January 20, 2010

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!

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Friday, January 8, 2010

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!