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Post by chasesmom on Jul 17, 2007 16:57:45 GMT -5
Hi there and welcome to unomas! I put this up here so everyone could see it because you posted on an old thread and I wanted to make sure everyone saw we have a brand new baby and her mommy here!!! ;D In case you don't know it, which you probably don't as you are brand new...we just LOVE babies So post up and tell us all about little Violette and your family please! I am Robin, mom of Chase, newly fifteen (eekk) with DS and Zach who is eight. the three of us live in Michigan with our very old yellow lab. Again, welcome!
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Post by violettesmom on Jul 17, 2007 18:28:22 GMT -5
Thank you for the nice welcome! I've been active on message boards for all three of my children (and actually my October 99 board is a proboard board, so this seems really familar to me!) I'm looking forward to a whole new set of cyberfriends here!
This is really long...bear with me!!!!
This is the story of how Violette came into our lives. We had been given 1 in 16 odds for a child with DS (based mostly on my age 40, a "slightly low blood reading on one part of the blood test and a slightly high but normal NT reading). We knew we'd love the baby no matter what, and accept her. I wasn't up for the amnio because of the risks to any baby, and felt comfortable if the level 2 showed everything was good, I'd be fine with what ever baby came into my life. I'm not much a worrier, so I knew I could really enjoy my pregnancy even with a big "if" surrounding it. The level 2 and echocardiogram came back perfect with no soft markers. So I just enjoyed my pregnancy which was exaclty like my other two!
Violette Hope came into the world on 6/26. She is beautiful, perfect, adorable, alert and she has Down Syndrome! I've said each of my children have surprised me - one is a lefty, one has curly hair, and now, I've had one very special surprise!
Monday afternoon I had a prenatal massage. My therapist, who is wonderful, asked me if I wanted her to "get things started" I said, sure! Well, it worked. She pushed on my ankles and a spot on my inner calf.
So, anyway, Monday night, like every other night for a while, I had a bunch of contractions. I said to Steve at about 8 p.m. that I thought I'd go upstairs and see if I could figure out how close they were. Well, at about 9:30 I still couldn't see any rhyme or reason, but thought I'd better pack my bag just in case. At 10 till 12, I said to Steve, let's call mom now - I'm not sure if this is it or not, but it will be easier to call her now. I was just going to go to the hospital to let them check me, but Steve insisted that in addition to that he should call my girlfriend who was going to deliver me. She talked to me and said, yes, I think you ought to get over there and I'll meet you there (she said she though "OH SH$T, I hope she gets there in time.) Mom came over, and I could hardly walk during contractions. Anyway, we headed to the hospital...got in and got to the desk. I had a ton of back labor. We got there around 12:20. They checked me in right away, and my friend showed up. Megan checked me and said "Well, I'd have to call this a good 8 cm. We better get you into the room. We got into the room, and they got cracking on the epidural. I started shaking, so I suspect that I had gotten into transistion.
Anyway, then I got the epi and felt a lot better. Megan, my doc and friend said she was going to go and catch a nap, that it would be an hour or two. She left, and the girls came about 5 minutes later and checked the machine. Sure enough, it didn't appear to be working and she couldn't find the baby. Well, she told her other nurse to check me, and sure enough, the baby was down in the birth canal. They told me to start pushing - I'm thinking WHAT? Anyway, I pushed two or 3 times (this was at about 2:10) and whoosh, out she came. Steve said "It's a GIRL!" And I said "I KNEW IT" Megan handed her to the nurses. And I immediatly said "Is she ok Megan?" And she said she is perfect and beautiful, and I'm very sure she has Down Syndrome. I said "Oh Shoot", and then started calling to Steve, who was busy enjoying the baby and told him. He was so confused at first, I think...I don't think he really prepared himself at all that this could be a real possibility.
She nursed surprisingly well...even compared to Lilianne.
I really was shocked, but what can you do other than be full of joy (and hope) when you see her beautiful little self. They got me sticthed up (a few more then with Lilianne, but FAR less than Vivianne), and wheeled us to our room.
Well, we had a good first day. The genetic Doctor from our Children's Hospital was great with us, and he had very very nice things to say about Violet and how she is and what things she was doing...but realistic about what she is going to be all about.
But then the Jaundice started coming in. We expected that, but it sure been dragged on. We were in the hospital from Monday at about 12:30 to Friday at noon - that's a LONG time!
We have a lot of optimisim for Violet. I think the part I'm most concerned about is the two other girls. I don't want Violet and her extra chromosome to prevent us from giving them the things that we want to give them...things like seeing the world are the things I worry about the most "giving up." I am trying really hard to focus on the here and now and not the future...
I told my oldest daughter the day after we came home. I was worried about it, but she didn't care all that much. In her eyes, as she said tonight "Violette is perfect" and "Violette is a little blessing." It makes me sad to think that the world doesn't agree with her (and me, and Steve), and that she will at some point in her life hear ignorant, stupid or rude comments about a person we all love. The good thing is I've told her that people always notice the differences in people (like that she is the biggest in her class) and that some people are afraid of people who are different, but that all in all the differences in people are good and are what make the world an interesting place.
Our local hospital is OUTSTANDING and has a fantastic DS program. The Genetic MD said that they will make everything EASY for us when it comes to managing her health. They will tell us when and what to check for. Everything looks fatastic with her (I swear she is going to be the earliest of my kids to roll over). She seems like she has good muscle tone, she is very cute (looks like a tiny elf, but she's still not all fluffed up yet.) From our prenatal screens we know that all the usual markers for DS aren't there for her, so we hope that physically she continues to be a normal child! That was the advice the doctor told us...all you have to do right now is treat her like you did your other baby's. That's pretty easy because she's acting just like they did in every way.
My brother and SIL (who have a child with Muscular Dystrophy) came to the hospital and said that they did tell their kids that the baby has DS, and that they are around a number of DS kids at school that they are friends with (our school district is OUTSTANDING when it comes to special needs...talk about a blessing) and that wasn't an issue at all for them. The two boys were far more irritated that the girls outnumbered the boys in the family now.
I'm acutally feeling like we are going to have a wild ride at the our household. I really feel like I've got two kids who are going to be at entirely different ends of the spectrum. Vivianne is so crazy smart in very odd ways that make her difficult, and Violet is going to have issues that will make her difficult in different ways. Lilianne is going to be the social flirt of the world.
I'm very proud of my husband. He's been so great. They took Violet to get blood (from her head!) to test her genetic make up. They wanted to give her sugar water in a pacifier, and he wouldn't let them...he didn't want to screw up our chances breastfeeing!!! I'm determined to give this one breastmilk as long as I can - the extra IQ points will be well worth it just like they have been for my others! Not to mention the good the sucking will do for her speech and her inner ear formation!
I want to do what my brother and SIL have done, and make sure that her diagnosis is only one element of who she is and what our family is...not the THE element that defines us.
All I can say is so far, parenting a child with special needs is about the easiest and most natural thing I've ever done! Honestly, if this is the worst thing that ever happens to a child of mine, I am totally ahead of the game. I think of the myriad of other real heartbreaks we all have the possibility of facing as parents with each and every child, and really, this is easy... I think you always on some level when you are pregnant or seen other parents with babies with "needs" and imagined yourself in that position - honestly, now that I'm in it, I'm finding it easier than I ever imagined. I look at her and everything - especially the love I feel for her, but everything else too - is easy.
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Post by Jodi on Jul 17, 2007 18:56:59 GMT -5
Welcome Violette's Mom!! I have to say that part of your post made me laugh in a very good way. I knew about Ryan before he was born, and man I was all over the Ds info highway like white on rice!!! I called regional center the day he was born Just like any kid, there will be highs and lows - and this board supports both!! Welcome to Unomas - and enjoy the ride Jodi
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Post by Debbie on Jul 17, 2007 19:10:28 GMT -5
Hi Violettesmom. Welcome to Uonomas!
I read your post. It must of be difficult for you and your husband but it sounds like you are doing well so far. What a great attitude you have!
As you can see my name is Debbie. I am not a parent but an adult who as Down syndrome. I have what is called Mosaic Down syndrome. I am forty six years old. I live with the motto as you can see below my Down syndrome is a part of me but is not my whole identity. It comes second although it does interweaves in my mental and emotional thinking sometimes. I live with my parents. I love to read and that means reading all the messages on here. I feel like I know everyone. I have a sister that is two years younger than me. Although I am the oldest I feel like the youngest when I am around her. I really admire her. She has five girls from the age of nineteen to ten.
Please post and let us know more about the girls! My Mother always wanted more but it didn't work out that way.
Welcome!
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Post by Renee' on Jul 17, 2007 21:34:26 GMT -5
Welcome!! We are glad you are here I am mom to Lauren (and my other two peanuts ). She is on her way to being 9 years old. I can remember the day she was born as if it was yesterday. Enjoy the wonderful treasure it is...it sounds like you have the right attitude. We are all here for you. Congrats to you and your family on the newest addition!! Renee'
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Post by CC on Jul 17, 2007 21:45:55 GMT -5
Christie and Christopher in New Jersey
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Post by Chris too on Jul 17, 2007 21:46:38 GMT -5
Welcome, Violettesmom!! That was a wonderful story and quite thorough, but I can't wait to hear more. Keep up the posting, I love to read about the progress of the babies!
Chris, too
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Post by lorraine on Jul 18, 2007 4:11:53 GMT -5
Welcome to uno mas Congratulations on your new baby girl!! I'm quite new here too as my son William is only seven months old, but I've found it a really friendly and helpful place, hope you do too Lorraine
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Post by Chester on Jul 18, 2007 7:21:43 GMT -5
Welcome!
Thanks for sharing your family with us, I'm looking forward to watching them grow!
You'll soon find out that having a child with Down Syndrome doesn't close any doors for you, you can still have your family see the whole world, some of the doors you use to use may change some.....some doors will open a bit slower and you may need to try some brand new doors,but the outcome is still seeing the world.
Enjoy your new baby!
Dawn
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Post by momofrussell on Jul 18, 2007 7:55:50 GMT -5
WELCOME TO UNOMAS!!!!! Glad you are here with us!!!!
;D
a.
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Post by ALLISA on Jul 18, 2007 8:11:39 GMT -5
Welcome. you certainly found us nice and early !! My daughter is 7 and I found Uno mas when she was just a couple of months old. I came here first because she needed heart surgery and I was terrified of that and wanted information from moms who had been through it. I got what I wanted and a whole lot more. Erin has 2 siblings and i worried, too about them...but if anything....they are BETTER off with Erin....she teaches them empathy, patience, tolerance.....I can say that my boys are nicer children because of our unique circumstances. Welcome to Uno.....and ps....I love all your girl's name....very pretty !
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Post by Jackie on Jul 18, 2007 8:37:56 GMT -5
Welcome to UNO. I am Jackie mom to Emily who is 27 now and has chosen to live with her older sister and her family about 500 miles away from us.
Em is the youngest of 4 but very close to her sibs. You are just beginning your marvelous adventure and I wish you all the best on your journey.
Emily has had a terrific life so far and many wonderful things still waiting in the wings for her.
I think you will love the people you meet here and from reading your post...you will be a terrific addition to our community.
Jackie
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Post by alisonzmom on Jul 18, 2007 9:20:22 GMT -5
Welcome to Unomas and congratulations on your new little girl!!!
I'm Barb, mom to Alison who is 4 and has DS and her two sisters. Like you, I've got three gals who definitely run the spectrum in the smarts department, we've got Alison at one end and her 10 yr old sister at the other end!!! And then there's my soon to be 17 yr old who is actually the most challenging in this area because she has the ability but just can't seem to get it together to apply herself!!!
Sounds like you and your family are ready for the journey ahead with Violette. Like any road you'll find some bumps and unexpected detours but man, what a ride!!!
Barb
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Post by chasesmom on Jul 18, 2007 20:39:24 GMT -5
I know I started this thread but I just read your post and it touched me. You are doing so well with all of this new stuff that has been thrown at you and I am so happy about that. I am glad your husband and girls are doing well too. I didnt do quite so well, actually I did horrible because never for one second did it ever occur to me that I would ever give birth to a baby that had a disability....imagine my ignorance and shock. It took me a long long time to come to grips with it. I loved my son fiercely but I denied that DS for a long long time, I hated it. Now, ...I embrace DS and I cant imagine what my life would be like not having people with disabilities in my life. They have become what life is about. They have taught me love, patience, compassion, understanding, perseverance and most of all...to never give up. My son Chase...he is my rock, my sun, my moon and my shining star, all in one. Welcome to my world Violettesmom, you have come to a beautiful new world. hugs, Robin
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Post by joydiane on Jul 18, 2007 22:00:58 GMT -5
Welcome to Uno Mas - I've learned so much here as I'm sure you will. I have 2 1/2 year old boy with DS, name Ibby. His older sister is 5 1/2 and they are wonderful together.
Violette's siblings will be fine and will be blessed many times for having her in their life. I also have an adult sister with autism and MR, I would not be the person I am today if I had not had her in my life. All of my siblings feel this way...it changed things in our life, but the positives far outweigh anything we had to give up.
Congratulations on your little one.
Joy
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