Thursday, January 15, 2009

Where to start?

Well I thought I'd start this blog to keep our family and friends informed on what is going on in our lives. We recently received some rather shocking information about our baby that is due in May and I thought I'd share my story as we go along on this unexpected journey.

I will start from our first daughter's birth- sweet Ainsley- She was born at 34 weeks due to a rare condition called Congenital Chylo-Thorax which caused Fetal Hydrops. The whole thing was dramatic- at 33 weeks I thought I was having some labor symptoms but the doctor measured me and I was measuring 40 weeks instead of 33 and my blood pressure was sky high. I was rushed down stairs to a specialist at Rex Hospital in Raleigh, NC only to be told to call my husband immediately because the baby and I were in great danger. It still brings me to tears just thinking how scared I was. Everything had gone perfectly up to this point- what could be wrong? Mike arrived and we rushed over to another specialist at UNC Women's Hospital in Chapel Hill and for 3 days they ran tests, did ultrasounds, had meetings over what to do with our baby. I will never forget when the Chaplin came to our room- all I could think was this was the end, he only comes when the end is near. He prayed for us, for our unborn daughter and for us to have peace. On December 20th, 2004 the doctors decided that they could help our little girl on the outside as she was not doing good inside of me. We were rushed down to the O.R. and Ainsley Elizabeth was born. They told me she probably would not be crying and that they would not be able to bring her over to me. They had a whole team working to resuscitate her. Ainsley was put on a ventilator and the first week of her life was touch and go. She was such a fighter and the doctors even called her a "miracle baby". To make a long story short she was in the NICU for 5 weeks and the problems didn't end once she got home-feeding issues, slow growth but for the most part she was healthy and is now a perfectly, healthy 4 year old. I guess I'm telling you this story because I thought that would be our biggest baby drama that God would allow, I mean how much more can parents handle is what I was thinking. No doubt God was there every step of the way and although we don't know why it happened, it doesn't matter, it all made us stronger. Here's a picture right after she was born. She was full of fluid because of the hole in her lymphatic system which made it impossible for her to regulate all of the amniotic fluid that circulates through out the womb. Eventually she got rid of the fluid just by peeing and lasix- no surgery or draining was required!




Fast forward to my second pregnancy. Mike and I were given a 1% chance that the same thing could happen again but the geneticist really felt like this was something that just happened and had nothing to do with us. Listening to all my friends and their wonderful birth stories and how naturally, their babies came home within 2 days, ate like champs, grew super fast, I was determined to have a normal pregnancy, a normal delivery and a normal experience with a newborn if I had anything to do with it. On May 2, 2007 our Harper Elise was born at 39 weeks via an elective c-section. I wanted everything planned and man was it perfect. No problems during the pregnancy, ultrasounds looked great, delivery went perfect and Harper ate like a champ! I remember leaving the hospital in the wheel chair with my little girl, so proud because I didn't get to do that with Ainsley- I had to leave Ainsley at the hospital- so this was the moment I was waiting for. Of course I sat there for quite a while because Mike did not have the car seat in correctly and the car seat guy had to show him how to "properly" install a car seat! You'd think we were first time parents:) Here's Harper on her birthday!




Well, after Harper I went back and forth about wanting another one. For a while I said two is enough, they are both healthy and I really don't enjoy pregnancy and Mike was happy with two. But then I changed, when Harper started crawling and then walking I thought is this really the last time we're going to experience these huge milestones? I just couldn't imagine this was it. So after several months of convincing Mike to have another, he gave in and we got pregnant very quickly. However, I remember mentioning to a friend of mine when I first found out that my worst fear would be that if this baby had something wrong with him/her and I was the one that wanted this, not Mike.

We moved for Mike's new job in November when I was 11 weeks (as many of you know, we always move when I'm pregnant) and everything was going great. In fact I thought this has been the easiest pregnancy, I mean I didn't even feel pregnant, it was great. We started to make friends and got adjusted pretty quickly.

Now, I'm going to share some little tid bits of info. that I feel almost foreshadow what was to come. Before Thanksgiving I went to Barnes and Noble for reading time with the girls and my friend Renee and her daughter. There, I saw 2 little toddlers that had Down syndrome and I was amazed by them, they were participating and paying attention way more than the other kids and I even mentioned it to Renee. I'm not sure why they got my attention but I just thought wow- those children are amazing!

Fast forward to December 21, 2008, it's Sunday night and the next morning I had a regular 4 week appointment with my OB. I started thinking- I wonder why I haven't heard about my prenatal screening tests-it's been a week- I wonder if this practice calls or mails something or if they will just tell me everything looks normal tomorrow. Hmm, I thought, so I got on the internet (very bad place to go when you're worried about something by the way) but I went on the babycenter website, a place that I've gone to for years to find baby names or information about taking care of babies and such and I went straight to the board labeled Down syndrome Pregnancy. So I started lurking for a bit and then I thought- Adrienne-stop, you are fine!

The next morning Mike was off from work so he dropped me off and took the girls to run some errands, there was no need for us all to go- it was just a routine appointment. As soon as I got in an exam room I asked the nurse if they got my screening results back- she looked in my chart and said yes but they just needed to interpret them. I thought okay- so that's why they didn't call, they just got them in, no biggie. So I waited and waited, she came in and apologized and said it was just taking a while to interpret them but that it should be any time. Hmm, I thought, that's not good and I seriously started envisioning a little girl (I was convinced we were having a girl for some reason) all dressed up like Ainsley and Harper in some cute outfit but there was one thing wrong- she had Down syndrome. I couldn't get it out of my head. How could this be? Finally the doctor walked in and instead of saying everything looks great she made small talk, asked about my previous pregnancies and such, all the while I'm thinking get to it lady- tell me, what do my results say? She finally said "Now, I'd like to talk about your results" right then I knew it- my baby had Down syndrome. I could not believe it, I had this feeling all along, my worst fear has come true and now I have to tell Mike. Well, the results were not final, she explained it was just a screening but that they wanted me to go talk to a genetic counselor and have a level II ultrasound at the hospital. (Warning, these feelings I share next were real and honest and I realize they seem harsh, but until you are in this situation you don't know how you will feel) I then asked her what were my odds-(I was reading the night before about women who got results back that said 1 in 160 or 1 in 220) she said she really didn't like telling her patients because it is just a screening and it may be nothing but mine were 1 in 10 that this baby had Down syndrome. When I heard that, it was all over, 1 in 10?! And these women were worried about 1 in 160? Are you kidding me? I honestly did not want this baby and this is me just being honest- at that point I thought maybe I'll have a miscarriage and we won't have to deal with this. I left the office calm but as soon as I saw Mike I broke down. I felt that it was all my fault, I wanted to get pregnant, not him and now this baby is not perfect, or normal, this baby has Down syndrome.

The next day we went to do the level II ultrasound where they found a heart defect and shorter limbs for gestational age (both are markers for DS). Right then and there I said I wanted to know for sure- I wanted the amnio- no matter what the risk. The procedure went fine and on December 26th, 2008 I got the call- it was confirmed our baby had Down syndrome and that it was a boy. This was the day that my life changed forever. It would never be the same. Our perfect little life that we had was gone. Why was God letting this happen to us again? Ainsley's birth was traumatic enough but now this? Why God, why? I can't do this, I thought, I don't want to do this, quite honestly. Mike didn't either. Who does? So we cried that day, we were angry at God, I was angry at myself and then I was just numb. I still could not believe in a million years this would be happening to me but yet I somehow knew.

So a couple days went by and the genetic counselor called to check on me and then she said I had options- I could keep the baby, I could terminate or I could put the baby up for adoption. Well, no matter what my crazy emotions were when I was thinking maybe the baby won't make it and it would be for the better, I knew that I would not terminate. No way. This is the baby we created and we were going to keep it. I felt terrible for wanting something to happen and that I could not even feel excited that we were going to have a little boy. I hadn't talked to God in a couple of days because quite frankly I felt betrayed. How silly of me, I think now. I now know that God didn't make our baby have Down syndrome, he wasn't punishing us with all of this. Things like this just happen, they happen to good people and not so good people, to Christians, to non-Christians, things like this just happen. But just as with Ainsley, God has a plan and I just know if I let Him take over and stop trying so hard to be a control freak it's going to be okay. It was with Ainsley- as soon as I gave in because I couldn't do it anymore- I couldn't watch my little baby girl hooked up to all those machines not knowing if she would live- God stepped in. I just gave it all to Him. I remember that happened on New Year's Eve, 2004 and the next day Ainsley amazingly came off of the ventilator. So I think in a way Ainsley's birth has prepared me and hopefully Mike for what is to come. We are not in control- as much as I want to be, I'm not. I truly believe though if we just let go of that control God will show us the way.

So this is our story thus far. I know it's long but I felt I needed to start with Ainsley as she was really the beginning of our unexpected journey- parenthood, I guess, in a nutshell. And though I feel like our lives have changed forever with this diagnosis I just know in my heart it will be for the better, no matter what happens. I'll hope you'll check in from time to time to see how things are going! I promise, other posts won't be this long:)

43 comments:

  1. hey Adrienne, see if I can post a comment, here! Love the new blog and the story. Good job! Am glad to be on this unexpected journey with you! Love you bunches, Mom

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  2. Adrienne, I cried reading your blog. You are such a strong mother already and this baby is lucky to be blessed with parents who are as caring as you and Mike are. I will continue to pray for you and for your journey ahead.

    Shannon Tessier

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  3. Love the blog! I am looking forward to following your journey. Keith and I are always here when you need us...no matter how big or small.

    Ginger

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  4. Adrienne,
    The blog is wonderful. I am glad you are doing this because now I can follow along on the journey. I miss the girls so much. You and Mike are very strong and with all the research you do yiu will be ok. Give me a call any time.
    Diane

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  5. Adrienne -

    Thank you so much for sharing your blog with me. I've enjoyed getting to know you through our e-mails and it was wonderful to see pictures of your darling girls. I can't wait to read more about your journey to Bennett's birth.

    Big hugs to you - you are a strong and wonderful mom!

    -Libby

    www.blessingsandglory.wordpress.com

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  6. Thank you for sharing your feelings and experiences thus far with such honesty. My love and prayers are with you guys. I cannot read your words without crying and I admire your strength and faith. Love to you!

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  7. Wow Adrienne. Thanks for sharing your story. You are such a beautiful person inside and out. Hang in there and thanks for letting all of us be "right there" with you and your family.

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  8. I stumbled upon your blog by accident, but I am so glad that I did and I cannot stop crying. Yesterday, we received the results of our prenatal screening: 1:200 Trisomy 18 AND a extremely low (bottom 5%) PAPP-A. Like you, we plan to get the amnio, and I just pray that everything will be OK. But, unlike Downs, T18 is not compatible with life, so if that is the fate of our Little One, we are going to have to make some really tough decisions in the next couple of weeks. Anyway, I will pray for your family...God truly does work in mysterious ways. Blessings!

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  9. As I read, it brings tears to my eyes...because this could be my story. My middle child spent time in the NICU too. I felt many of the same emotions you did. They are perfectly normal! Your baby boy will be such a blessing! I'm glad you started this blog. Btw....I saw you were @ UNC when Ainsley was born. That's were we went for our Genetic counsling when we found out Mattie had ds. Looking forward to following your blog!

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  10. I had those same wierd feelings...researching about Down syndrome when I was pregnant, I kept thinking something was wrong and felt like the dr.'s were keeping a secret from me....I really think God was preparring me for Addie's diagnosis. I was actually the one that said she has Down syndrome as soon as she was born and I saw her, I knew...

    Praying the rest of your pregnancy goes smoothly!

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  11. {{{Hugs}}} We, too, had someone feathering our nest prior to Stella's Dx (post-natal). In separate incidents while I was in my third trimester, my husband and I both had little toddler girls with Ds cross our paths. They were SO CUTE! I do believe that these events occur to open our eyes to the possibilities as to where our lives may go. And we saw them at such NORMAL places - the mall and the studio where our eldest takes dance classes. It was like, "hey, see, these kids are out there - enjoying life, doing what all other kids do - it's okay!'

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  12. Congratulations Adrienne & family! I understand the news of having a baby with Down syndrome can be quite a shocker. But, your baby will bring you so much joy and love you never knew :).

    I have a wonderful 4 year old brother with Down syndrome. Our life has changed for the better since he was born. I can't imagine life without him!

    Qadoshyah
    Sister to 10 siblings, including boy(DS)/girl twins - Feb. '05
    Book - Down Syndrome: What You CAN Do
    www.gotdownsyndrome.net/Book/whatyoucandobook.html

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  13. Wow!!! Your story could be my story. Literally almost to the letter. I got the AFP test back and it said 1 in 12 chance that my baby would have Ds. Then we had a level II US that showed a few markers and then did the amnio which came back positive. I too had many events occur before I found out that led me to realize that my baby would have Ds before we got any results. My daughter, Ella was born 3/29/08 and is the most amazing baby. I look forward to following your journey and would love to share my daughter's story with you. I don't have a blog yet (lazy) but you can email me @ adjvollmer@aol.com

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  14. Adrienne and Mike--
    You would be amazed at how many pregnant 'mom's' have the premonition that the baby they are carrying will have Down syndrome. When I was pregnant with the middle of my 3 girls, (Kendall--who is now 22--with Down syndrome) I just KNEW. I had seen babies, children and young adults with Downs--from my first pregnancy (and I didn't have that premontion with that first daughter) on. The moment I found out I was pregnant with Kendall--I knew. I just knew.
    I didn't have the pre-natal diagnosis then, but when they handed her to me on the delivery table, I saw the Downs. The nurses asked me if I worked with children with special needs, because 99% of new moms would not have seen it. I said 'no'--but that I had already known in my heart before I saw her.
    Maybe this is God's way of preparing us??
    I don't know that answer--but do know that your feelings of wishing the pregnancy would terminate naturally is not uncommon--and normal. I thought terrible things about that sweet baby girl we brought home 22 years ago. It dawned on me when she was around 6 months old--how truly blessed I was to have her.
    Has it been hard? Um...originally--yes. But surprisingly, out of my 3 girls, she has always been the easiest to have around. Her love and compassion is beyond compare.
    YOU will adore this child. His siblings will adore him. He will bring amazing miracles and happiness (and life lessons) into your home that you never thought possible.
    My two other girls (25 and 18) are out of the home, and it's just Kendall with us. But, she is preparing to move out herself, and I find myself so sad. I don't want this journey to end...it's been an amazing path to travel down. I wish you love and the best with your sweet baby boy.
    Peggy Giacalone--Redwood City(CA)

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  15. Wow, it is amazing that I found your blog by accident. Congratulations on your upcoming bundle of joy! I am pregnant with a due date of May 5th and also expecting a baby boy with D.S. I did not do a triple screen but waited until my 20 week u/s at which they found markers for a chromosomal abnormality. We had an amniocentesis and the FISH results came back positive for Trisomy 21 a few days before Christmas. You and I were probably in a similar mental state at about the same time. I have a bunch of weird things happened to me prior to diagnosis that gave me strong feelings that our baby would have D.S. It seemed like everywhere I went I would encounter someone with D.S. After we found out, my husband told me that when he saw the 14 week u/s picture (nothing was noted to be unusual at that time)he knew immediately that the baby had D.S. We have 2 other children (boy 7, girl 4) and they are extremely in love with this baby and can't wait for it to be born. Unexpected journeys are usually the most meaningful and wonderful. Best wishes with the rest of your pregnancy, you are in my thoughts!
    I will at some point have a blog, but for now if you want to contact me: elenamac@msn.com
    Elena M.
    Hawaii

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  16. Wow, I can't believe I came upon your blog by accident. Congratulations on your upcoming bundle of joy! I am also pregnant, due May 5th, and expecting a baby boy with D.S. I did not do the triple screen, but at my 20 week u/s, markers were found. I had an amniocentesis and the FISH results came back positive for Trisomy 21 a few days before Christmas. You and I may have been in the same mental state at about the same time! After going through the normal emotions, we are really looking forward to meeting our baby boy and moving down this new path. We have 2 other children (son-7, daughter-4)who are absolutely in love with this baby and can't wait for it to be born. Best wishes with the rest of your pregnancy, remember unexpected journeys are the most memorable and wonderful!
    I don't yet have a blog, but if you would like to contact me: elenamac@msn.com
    Elena M.- Hawaii

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  17. I was just bawling all the way thru this. I am so glad I didn't have a clue that my first child had down syndrome until after she was born. I'm not sure how I would of handled it. I do remember with my second pregnancy, thinking everything was perfect and that this child didn't have a heart defect or down syndrome. My second baby moved so differently from my first and was much stronger. Then in my 8th month, that all changed. My baby seemed to sleep all the time and not move much. I knew before my US that something was wrong. My second child also had down syndrome and the AVCanal defect. I didn't care about the DS, but the heart defect, really made me mad. I felt it wasn't fair. But I accepted quickly and moved on. While I wouldn't change my daughters if I could go back, personality wise, I would of liked to have done without the heart defects. But we have been blessed and they are very well.

    We will say prayers for you and your baby.

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  18. Funny how these beautiful babies seem to tell us they are on their way before we meet them. I had a few similar things happen to me as far as knowing about the baby having DS before he was born. I think of it as Hunter's way of preparing us, talking to us before he was born. Or the world's way? God's way? I don't really know but it's more than coincidence!


    CONGRATULATIONS AND WELCOME TO AN AMAZING JOURNEY!

    There is no sweeter, more loving and accepting community than the family and friends of children with DS!

    Nice to meet you and love to you and your family Adrienne!

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  19. Oh PS we can't wait to meet your prince charming! Come by and meet my lil man at

    Http://jesstool.blogspot.com

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  20. Oh my gosh! I'm so happy I found your blog. Your post here made me cry and get goosebumps too. I can't wait to meet your baby boy! Welcome to Holland, it is an AMAZING place.

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  21. Adrienne, I am not sure how I found your blog but I am so glad I did. First and foremost... congratulations on the pending birth of baby Bennett! What a great name! We have a little boy who just turned 2 who also has Down syndrome, his name is Reid...and he is so funny, adorable..and oh so normal :)!!! I say that because as you are embarking on this new journey I know it is so normal to have so many different waves of emotions, questions, and fears....though it sounds like you are doing really well! If you are interested in visiting our blog I have a post I wrote in October...it is kind of buried in my 2008 posts on my sidebar to the right, that you might be interested in looking at titled ("October: Down syndrome Awareness Month (post #8)- Dedicated to new parents!"). Several parents commented on what they wish they knew when their child was born, or when they learned of their child's diagnosis... my hope is that the words written there would further calm your heart. :) Bennett will be such a blessing to your family....he will complete you all in ways you never could have imagined.

    Speaking of heart...I have tears running down my face because the song on your playlist, Held by Natalie Grant, just started to play...that is a song that I heard over and over again as our Reid was in the hospital for heart surgery....and I would belt it out with tears running down my face each time I heard it... he came through surgery very well by the way, as Bennett will too.

    our blog is http://raisingreid.blogspot.com if you are interested

    Blessings to you and your beautiful family!

    Cheri in Long beach, CA

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  22. Adrienne,
    First, Congratulations on your pregnancy! and I love your blog.
    Second, I am a mom of a special girl called Bonnie Lee, and from Alabama, but live in DC.
    I had the same intuition that you did and I saw many things you did before my daughter was born. I think it was God's way of preparing me.
    You will discover many wonderful yet challenging things but all for the good.
    Good luck and we will be keeping up with your progress.
    Ann

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  23. Carolyn Vanover NicholsFebruary 27, 2009 at 3:06 PM

    Hi Adrienne, I am your mother's hair stylist and she introduced me to your blog. I am so very touched by your life and your choices. Your story has touched the hearts of many people. I pray that God will continue to bless your life. Bennett is already blessed to be born into a such s loving family. Peace be with all of you. Carolyn Nichols

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  24. My husband stumbled upon your blog and shared it with me. We are 20 weeks along and expecting a little girl with Ds in July. We got the diagnosis around 15 weeks. It is so nice to read others stories. It helps me to feel like I am not alone. While this is a road we would not have chosen, we welcome the journey and embrace the opportunity to meet our little angel. Thank you for your inspiration and perspective.

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  25. Hi Adrienne,

    I am one of Libby's followers... so happy to have stumbled across your blog too! I just started reading your blog- obviously started from the beginning... so there's a lot I have to catch up on. But what I want to tell you off the bat is Congrats on baby Bennett! Having a 22 month old with DS (who by the way at my 20 week US, we got the calcium on the heart marker, as well as the shorter measurements on the femur and humerus markers) is by far as normal and fulfilling as what I expected it to be. He still eats, smiles, cries, poops, laughs, etc. like any other baby. And I have to tell you- he is EASY! (He's my first, but I tell you- we feel we lucked out with how good natured he is.)

    I look forward to continue following your posts! Wishing you lots of peace and love-

    Lisa

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  26. Hi Adrienne! I came to your blog through Angela (The Amicks). Congrats on Baby Bennett and welcome to Holland! I have Lucy (Ds, AVSD repaired 1/28/08) who was born in July 2007 and Brodie, who was born this past November. You can find us on www.cremcd.blogspot.com! :)

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  27. Hello Adrienne!

    I'm Sonia (navywifemomof3) from BBC! I wanted to tell you that I think your daughters are beautiful and that I really enjoyed your story and complete honesty in sharing how you felt when you found out about your son having Ds.

    My story is different from yours, since we didn't know about Lil and her dx until she was born, but I had similar feelings!

    On the other hand...congratulations! I can't wait to see pictures of the beautiful boy! If it's OK, I want to link you up on my blog.

    Again, congratulations!

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  28. I can't remember whose blog brought me here. However it doesn't really matter. Your story is filled with how God cares for His own in times of overwhelming trouble. I am a grandmother of 13, and though I can't identify personally, my spirit looms toward you. Please keep telling the story, I will check back often. May the Lord Bless you and Mike and your children.

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  29. I hope you don't mind me peeping in but I found your blog from a mutual friend, Liz H. And I must say that you are an amazing woman! You have two children, one on the way and you still find time to do all of these crafty projects. You are this wonderfully positive person and seem to take everything in stride. How do you do it all? I look forward to reading your future blogs and wish you only the best in the last few weeks of pregnancy and with little Bennett. BTW, I absolutely love your children's names, so unique.

    Kathleen

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  30. I just want to say I love your story. I love the honesty. My son was born with DS in October 2007. We didn't know until a week after he was born, when the genetic test confirmed it. What a shocker it was! I wasn't even 30 and he was our 1st baby. I had the same feelings about feeling inadequate and I've brought an imperfect baby into our lives, how could this happen, etc etc. But I can't begin to tell how what an incredible journey it has been so far! I wouldn't change my little Matthew for anything. I just started a blog, mostly featuring Matthew. I wish I had thought about blogging when he was born but oh well. Between the 2 of us, you're the more experienced mom (I only have 1 kid so far) but if there is anything I might be able to help you with, please do not hesitate to ask.

    My blog: Bill and Ria

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  31. By the way, my mother-in-law had similar "premonitions" as you did about our baby having Down syndrome. She wrote about it too. It's on the sidebar on my blog titled "Matthew's Story" by Margie Haag, in case you were interested in reading more.

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  32. Happy Birthday, Baby Bennett!!!! (from mygirlduejuly2009)

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  33. First of all - a huge heartfelt congratulations!!...I just stumbled across your blog and parts of it felt like I was reading my diary! I am almost 22 weeks pregnant and my little boy was diagnosed with Down's Syndrome just over a month ago. He is our first and came as a huge surprise- we had been on the waiting list for IVF for some months and were scheduled to have our first treatment two weeks later - didn't need it after all. I had severe cramping and bleeding for the first few weeks and was high risk for early miscarriage but it seems he is a fighter. Coping with this latest news is hard - I found this site very comforting...so thank you! And I apologise for writing a message almost as long as your blog entry!!
    Congratulations again and I will definitely be looking in to see how you are all getting on
    Andrea x

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  34. I just read your blog for the first time. Thanks so much for sharing your heart. Hope came as a surprise but we had no markers when we had our ultrasound so other than age, there was no reason to have any other testing. She has been a wonderful and fun surprise in more ways than one and I look forward to seeing all about your little one.

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  35. This is my first visit to your blog. Thank you so much for sharing your story. My son does not have DS but struggles with Cystic Fibrosis. I felt some of those same feelings.
    Can't wait to follow your journey.

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  36. I'm here because of Blog Hop and angel intervention :)

    When I returned to school for teacher certification (special ed), I wanted to work with Down syndrome children. LOVED them. As it turned out, though, my job was with orthopedically and multi-handicapped children... which would better serve our own special assignment several years later.

    Our third baby, Jeffrey, was diagnosed with spinal muscular atrophy (SMA) and earned his wings at 5-1/2 months.

    I would love to add your blog to our blog list of 'Special Assignments.' I just see the MckLinky URL and hope that will continue taking folks to your blog.

    Prayers for your adorable little Bennett for the upcoming surgery!

    Helen/'Lucy'

    PS - Cindy ('Ethel') and I are both in NC, too! She lives near Raleigh, I'm in the mountains near Boone.

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  37. i loved reading your story. thank you for sharing.
    christi

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  38. Hello, I cried reading this the whole time. Im 21 years old will be 22 when my child is born and Im 19 weeks. I recieved a phone call from the nurse 2 days ago saying I had postive results with my screening. I don't know my ratio yet but I have to go in Monday to discuss what should be next and I just love reading stories such as yours. Thats all I've been doing since I picked up that phone call. We're both worried but are trying to figure out what to do, why this came about without any family history (that we know of) and how, if need be, to parent a child with DS or some other chromosomal defect. So I just wanted to thank you for sharing. Everyones stories I have read so far are helping to ease my mind. Thanks. Robin

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  39. Hi Adrienne, i saw that you read my blog and came to yours. I sit here with tears in my eyes as I read not only yours but many of the comments posted. I too had premonitions that my baby would not be "normal", but didn't find out for sure until after he was born. I had so many of those same feelings and fears. I also had "talked my husband into another baby" and was so scared he would blame me for this huge change to our lives, he had stated many times that he was happy with the way things were with our 3 kids, before I got pregnant. He of course doesn't blame me and we love our son jsut as much as our other kids, if not more (if that's possible!) Thank you so much for visiting my blog and directing me towards yours. It's amazing how many of us there are out there! I will follow your journey as well, hopefully we can help each other and learn from each other!

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  40. I loved reading this - its is so similar to how we felt when Heidi was born with DS 14 years ago! We have writeen a book called Surprise Package about al God has done in her life and through her. Her website it www.heidicrowter.com

    r u on facebook?

    Liz Crowter (coventry , UK)

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  41. I don't really know how, but I stumbled on your blog today. I read about your family and had to comment as we have a lot of similarities. I have a 5 year old son with Ds also. Yours is beautiful by the way!!! Our Will is a great kid - funny, active, mischievious, stubborn, smart, sweet . . . I understand everything you said about your reaction, your expectations for him, etc. We didn't know about the Ds until he was born however. He also has a heart defect which was discovered at birth too. He had open heart surgery at 4 1/2 months and had a long recovery. He developed chylothorax like your daughter did. That was very tough for me. My daughter's name is Ainsley also! Love that name! Anyway, I would like to follow your story if you don't mind!

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  42. I wonder if doctor's didn't get the option of termination if it would change the statistics? I think its awful that they see it as a viable moral option.

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  43. I cried reading about your journey .I have a daughter who is differently abled.We are so blessed.I believe God gives special children to special parents.

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