a little bit about T18

I love just staring at nugget. she really amazes me. just by looking at her you would never know anything was wrong with her or she was what society defines as "different". I have to admit, I made a gorgeous child. not to be cocky or anything, I literally get stopped multiple times a day while we are out walking. random strangers come up & tell me how beautiful she is. that makes me soooo proud!! I made her!! took 9 months to perfect her, & yes she is perfect. im sitting here writing this, watching The Office, listening to her just coo & "talk" to me, telling me her stories, laughing.

I think I need to break down just a little bit. Sloane has Trisomy 18, better known on the streets as Edwards Syndrome. at conception, the cells don't divide properly, resulting in having 3 sets of the chromosome 18 instead of the normal 2 sets. trisomy 18 is pretty rare, 1 out of every 2500 pregnancies & 1 out of every 6000 LIVE birth. 50% of babies carried to term are still born.

for not knowing about this condition, these odds are scary. its more common in girls than boys, but boys have a higher mortality rate. LESS than 10% survive the first 12 months.

I was told repeatedly that Sloane was "incompatible with life" and that she would not survive long once I brought her home. I have never been more pissed off in my life. as a new mom, that's the LAST thing I want to hear yet that's all the doctors kept telling me.

for as long as I can remember, when someone tells me no, that to me says yes. so after 4 long excruciating weeks in the NICU, I told the doctors I was taking my daughter home. I didn't want to hear anymore that my daughter would not survive. well if that was the truth than she was gunna be at home with me, not in some plastic box. I talked to lots of people at the hospital, nothing made sense but I brought her home.

talk about being terrified!!!! bringing home a new baby as a new mom with a condition I knew nothing about. as I think back, it was all a blur. I didn't sleep for almost two weeks. I drank so much coffee because I was terrified to go to sleep, I thought she would stop breathing at any second & it would be my fault, because I closed my eyes.

she came home at 4lbs 3 oz. a bitty 17". connected to oxygen & on about 5 meds. I love that I can say at 3 months, I was able to take her off the oxygen tank. hasn't even needed a little bit since. and now she is only on 3 medications. the biggest thing was taking her off her heart medication. she was born with an enlarged heart & small VSD, which closed on its own. as of today she is only on acid reflux meds & phenobarbital, she doesn't have seizures at all, it actually helps stabilize her moods.

I cant wait to get more into what T18 entails so everyone is better informed but Sloane is settling down which means I must take advantage. so goodnight & please stayed tuned & bear with me. I will get the hang of this blog thing.