re: Genetic Disorders. [Support Thread.] [GDS]

Not mothers with beautiful kids, but mothers with perfectly healthy kids.
When I was staying at the Ronald McDonald house, we took a trip to Wal-Mart, my SO and I, that is.
A woman was in the parking lit loading her stuff into her car & her son was crying saying; "Mommy hold me!" With his arms spread out, and it wasn't that he wanted attention, he was scared, it was dark outside, and she kept yelling at him to shut up and behave.

I went back to our room, took a hot shower and cried.

I know I get irritated at my kids, but I am so grateful for them. Out of the things to happen, i've got one perfectly healthy intelligent daughter, and one with a fixable problem. I feel so lucky.

The babies care when she was 1 and a half months old was an "in and out" cath four times a day.

Depending on the day, any where from 2 - 4 types of medication to be given.

Now she is three months old, and had her second surgery before she was even two months old.

It was an emergency surgery, they fixed her so we wouldn't have to cath her any more, but we keep a box for just incase, I donate the rest of the caths to children with Spina Bifida that can not aquire health insurance.

When she is old enough they are taking her extra fingers off.
Opening her cervix, and attaching it to her.
Then if that works they are going to seperate her bladder and uterus.

Now her at home care is to put Bactracin on her incision, every diaper change.
Nystation on it twice a day.
Measure her one - two times a day.

Also to love her lots. =)

Quoting --Aly--:“ Not mothers with beautiful kids, but mothers with perfectly healthy kids. When I was staying at the ... [snip!] ... her incision, every diaper change. Nystation on it twice a day. Measure her one - two times a day. Also to love her lots. =)”

Oh my goodness, suddenly I don't feel so concerned about Dakota's issues. I give you mad props for dealing with and loving your daughter, and making sure she has the best care. I think childern with special needs or medical issues are only given to special mature people that can handle and care for them properly.

Quoting Courtney_Bly [HBC]:“ Oh my goodness, suddenly I don't feel so concerned about Dakota's issues. I give you mad props for dealing ... [snip!] ... with special needs or medical issues are only given to special mature people that can handle and care for them properly.”

Sorry my typing is slow, she's been "helping" me clean. Hehe.

Just remember one thing okay? While you're going through all of this.

He is perfect.

Quoting Tait's Mommy:“ He's not suffering at all. He is a perfectly happy and usually healthy baby. In fact, I wouldnt have ... [snip!] ... the least. And I just dont think about how short his life will be, just trying to make the most of what time he has with us”

Babies are so strong.

Hello, I think this is a great thread. Both myself and my middle daughter have a blood disorder called Thalessemia. I went my whole life not knowing I had it until I had her. Livie is doing great though. She is tiny but that is partly due to her being premature. She only weighs 22lbs and she turns 3 in October! She bruises easily and sometimes has a pale almost yellow skin tone. The doctor says that she will be on and off again anemic but it's something we can't cure. When she is older her husband will have to screened because she will have a 50% chance of passing on the worst form of Thalessemia to her child. Which results in either stillborn or a lifetime of blood transfusions.

Quoting --Aly--:“ Babies are so strong.”

His nose is running buckets and he's coughing like a maniac...but laughing and smiling and screaming at me and trying to crawl. Just like any average baby. It'a amazing. As I'm typing this he's in the the background, "blahmamadabadeedeedeedeedee" lol sometimes I dont believe he has a life-threatening disorder.

Quoting blessedwiththree:“ Hello, I think this is a great thread. Both myself and my middle daughter have a blood disorder called ... [snip!] ... passing on the worst form of Thalessemia to her child. Which results in either stillborn or a lifetime of blood transfusions.”

I just tried to Wikipedia that, but all I got out of my quick read was that it causes Anemia?
I know there has to be more. Lol.

Dumb it down for me.

Quoting --Aly--:“ Sorry my typing is slow, she's been "helping" me clean. Hehe. Just remember one thing okay? While you're going through all of this. He is perfect. ”

I was given that advice at one point as well. The best advice I've ever gotten. Everytime someone says "is he overweight?" "no hes perfect" "he looks sickly" "hes perfect"

No matter what anyone says, you have to know your baby is the most perfect, beautiful, wonderful thing in your life, and that will ever be in your life.

edited for horrible spelling lol

Quoting Tait's Mommy:“ His nose is running buckets and he's coughing like a maniac...but laughing and smiling and screaming ... [snip!] ... this he's in the the background, "blahmamadabadeedeedeedeedee" lol sometimes I dont believe he has a life-threatening disorder.”

It's crazy, isn't it?

How strong these tiny things really are.

I always call my daughter Kaylasaraus, [Like a dino] Because when she screams, ahe means it, and because she's a strong gir who is going to make an impression on this world with just her foot steps, people are going to be digging up info on her 100 million years from now!
Lol.

She's gonna make an impression!

And she always smiles and stomps her feet when I say it.

Quoting --Aly--:“ Sorry my typing is slow, she's been "helping" me clean. Hehe. Just remember one thing okay? While you're going through all of this. He is perfect. ”

I know I got the cutest picture of his profile when I had my u/s on Tues. Oh I love him so much and I haven't even met him. Well I think they will be fixing his lip before he even comes home for the first time, which will help a lot. But I will do anything for him even if I had to take him hours away to see specialists. I just feel bad for being resentful of other mothers especially ones that arent worthy of having children, but I love my son all the same, they dont deserve him!

Quoting Courtney_Bly [HBC]:“ I know I got the cutest picture of his profile when I had my u/s on Tues. Oh I love him so much and I ... [snip!] ... of other mothers especially ones that arent worthy of having children, but I love my son all the same, they dont deserve him!”

Don't feel bad. I felt the same way.
I kept asking myself what I did that was so wrong that my kid is messed up.

When I had my daughter they let me see her twice, while I was still in the opertating room, then I got to hold her for 10 mins 12 hours later before they took her by helicopter 3 hours away, and I wasn't allowed to go! I was still on bed rest.

That night my OB/GYN came to the hospital to see me. I had the TV on, but I was laying there in the dark, staring at the wall, hugging her baby book. He actually crawled into bed with me and cuddled me! Lol!

He asked if they called about the baby yet, I said no, then he said; "She is at the best hospital, period. If they haven't called yet, there is nothing to worry about."

Then he gave me his pen so I could write in her baby book. Said if I wanted to leave in the morning, he'd let me.

Then the other hospital called and told me what they were going to do, and that nothing I did during my pregnancy caused this.

Turns out they were right, its genetic.

Don't feel guilty.

Just love him, he is perfect.

Quoting Tait's Mommy:“ I was given that advice at one point as well. The best advice I've ever gotten. Everytime someone ... [snip!] ... most perfect, beautiful, wonderful thing in your life, and that will ever be in your life. edited for horrible spelling lol”

I HATE when people do that!

GRRR!

My daughter's only visible defect is her two extra fingers, and people act like she is a freak!
If a stranger notices them, they point it out to all thier friends.

I'm to the point of telling them its not a big deal, and to shut up.

And i'm not putting mitts on her to hide them

DAMMIT MY KID IS PERFECT!

Lol.

you guys are so way stronger then i am i still have wat 9-12 weeks to go and i am so scard when my lil guys is born i know that he will have his probs and everything will be ok but wow you guys are strong its just for me to even deal with my probs right now then have to deal with his

Quoting --Aly--:“ I HATE when people do that! GRRR! My daughter's only visible defect is her two extra fingers, and ... [snip!] ... them its not a big deal, and to shut up. And i'm not putting mitts on her to hide them DAMMIT MY KID IS PERFECT! Lol.”

my mom never hid ours

Quoting --Aly--:“ Don't feel bad. I felt the same way. I kept asking myself what I did that was so wrong that my kid ... [snip!] ... during my pregnancy caused this. Turns out they were right, its genetic. Don't feel guilty. Just love him, he is perfect.”

Thanks, I know it took me a few weeks to get over the intial shock. But I love him all the same. Your daughter sounds amazing Im sure she is going to do great things with her life!