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DownSyn Forum > Introductions > New to this board (and to diagnosis)
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Topic: New to this board (and to diagnosis)

03-14-2006 02:25 PM

all4kierra   New Member Location: Hilliard, Ohio Registered: Mar 2006 Posts: 9 Last visit: 03-23-2006

I just wanted to take this opportunity to say "hello" and introduce myself and my little angel. Kierra, my husband and my first born, surprised us on October 2, 2005 - nearly two weeks early. The pregnancy was phenomenal - very little morning sickness, no problems at all - but her delivery was another story, resulting in an emergency c-section and a surprise diagnosis of Down Syndrome after having received a negative test during pregnancy (came to learn later that this did not "test" for Down, it just identified high/low risk). It was a shock, as each of you know, but I cannot imagine trading this little one for anything in the world. I still wish I could take it away from her as there are so many things I would like her to have the chance to achieve in life, but am beginning to come to terms with the fact that I cannot change it. After two years of trying for her, eating right, avoiding anything that could possibly harm her, taking all the extra vitamins, etc., it just does not seem fair that she has this syndrome. Regardless, I love her more than life itself and know that she will achieve things - just in her own time and on her own terms. If I could, I would like to ask for a prayer request. She is scheduled for open heart surgery on March 31st, after having it cancelled on Valentine's Day per an abnormal MRI. Her father and I are terrified but know that she will be in good hands with God guiding the surgeons' hands. Sorry for the rambling - I tend to do that these days! Thanks to each of you for allowing me time to say "hello". Once I figure out how to upload an image, I will be sure to do so as I want everyone to see our little beauty! Take care, Tawni

03-14-2006 03:07 PM

mommartin   Senior Member Location: California Registered: Jun 2005 Posts: 474 Last visit: 03-23-2006

Hi and Welcome. We know exaclty how it feels to go through all thoughs emotions after you find out. I am glad you are coming to terms with Kierra and realizing that she is a baby first and formost and just needs her mommy and daddy to love her. We will definately keep her in our prayers (post it in the prayer forum and also put it on the calander so everyone knows and we can remember to pray on that day for her. Our Faith had surgery in November and it is amazing how quickly they recover. Remember we will be there for you through it all and though we might not be there in person we will be with you in spirit and prayers. Welcome again and looking forward to seeing your little cutie pie (directions on how to post a picture are in the photo forum) __________________ Katie Jerry 1/02,Bethany 8/03(cp)Faith 5/05 (ds) Helping families achieve physical and financial wellness http://behomeforkids.themomteam.com

03-14-2006 03:09 PM

JenBrock'sMom   Super Member Location: Des Moines, Iowa Registered: Sep 2005 Posts: 1307 Last visit: 03-23-2006

Tawni, Kierra and family welcome to this wonderful place for families and friends of children with Ds. I'm Jen mom to Brock who is 7 1/2 months already! Your story sounds so similar to mine (with exception of it taking a long time to get pregnant) I got pregnant about two weeks after my wedding, first try. Brock was also born two weeks early - no c section - but did require vacuum and was then in the NICU for about 2 weeks. Brock's Ds diagnosis was a shocker for us - totally normal pregnancy, one ultrasound at 10 weeks, and a negative AFP test. But also like you, we are making the adjustment to being new parents and addressing the needs of our precious baby who happens to have Ds. We most certainly will add Kierra to our prayer list as well as your family. There are so many families on this site who have already been through heart surgery, and I know they will share there experiences with you. Take care, and I can't wait to see photos of Kierra. __________________ JenBrock'sMom & wife to Jay Brock 7/28/05

03-14-2006 03:22 PM

Grandma to Olivia   Member Location: Registered: Sep 2004 Posts: 80 Last visit: 03-23-2006

Hi Tawni and family! Welcome to this great forum. I just recently started posting, but I was lurking for a long time! My granddaughter's name is Olivia, and she is 2 years old. We didn't know until after she was born that she had Down Syndrome. I won't take up a lot of space here, but if you would like to read about me and my family I just recently introduced myself in this section. Olivia is doing great, but she was born with two holes in her heart. We are lucky in that if she does need surgery it won't be of the open heart type. They would go up through the groin, or something like that. It is very normal to be shocked, and it takes a while for life to seem normal again, but it will! I'm sorry your daughter has to have surgery. There are a lot of families on this forum that have gone through the same thing, and they would be better able to explain what it's like. But, it is so amazing how well these children recover, and are doing so well. You will be in my thoughts and prayers. Please let us know how everything goes. So glad you joined, I think you will find a lot of support, comfort and information here. ~Cindy~

03-14-2006 04:25 PM
elizasmom   Senior Member Location: Marin County, CA Registered: Jul 2005 Posts: 534 Last visit: 03-24-2006	Hi Tawni! Welcome - I think you are going to love it here. I can't wait to hear more about your family and see pictures of your little sweetie. We'll be sending lots of positive thoughts and love her way for her surgery. __________________ Liz - Mom to Walker (3/24/02) and Eliza (Ds) (5/6/05)

03-14-2006 04:57 PM

** Hannah's mom ** UK   Super Moderator Location: West Midlands UK Registered: Jun 2004 Posts: 3851 Last visit: 03-24-2006

Hi Tawnie welcome to you and Kierra and your family to the site here it is such a big shock when you are not expecting it but yes our little sweeties we wouldn't trade for anything I can assure you that she will do amazing things and you will celebrate them all the more knowing she has had to work at it to get there, it makes it all the more precious. That first head holding up, the first roll over, sitting up, crawling and those first steps. Also its suprising what our kids can do. Just something like swimming. Hannah loves to go swimming and we have such fun together when we do. Its such a joy to see her. She also loves the swings, and she laughs her little head off when we put her on there and she captures all the others parents eyes when she is on there and you can see them just smiling with us as she enjoys it so much We will be saying prayers for her heart surgery Hannah had heart surgery at 8 weeks and you wouldn't be a caring parent if you didn't worry about it, so saying a special prayer for you keep us updated and I look forward to hearing more from you Jo __________________ Jo mummy to Hannah (DS ) who was 3 in July 05 and Rebecca who was 2 in Jan 06 My beautiful girls Baby 3 due April 10th 2006 Visit Hannah's webpage and read all about her journey

03-14-2006 05:42 PM

southernbelle   Super Moderator Location: Gray, GA USA Registered: Nov 2004 Posts: 4263 Last visit: 03-24-2006

Tawni. Welcome to the downsyn.com family. We are glad you are hear. I will remember your baby girl on her surgery day. Austin had open heart surgery for a defect called Tetralogy of Fallot..it affected all 4 chambers fo the heart. and He no longer has a pulmonary vavle...that will have to be replaced at some point in his life. BUT...he did wonderfully during surgery and is a chunky monkey now!! It's so hard to hand them over to the surgeon but, she'll be a new baby after her operation. And a proud member of our very own Bravehearts club. Keep us updated as surgery draws near. And post pics SOON! AMY __________________ "You are an unrepeatable Miracle. No one exactly like you was ever born or ever will be." Momma to Austin(DS) 05/18/04 Kristin, Jessica, Rebecca, Rachel, Sarah,Hunter www.caringbridge.org/ga/austinluke www.xanga.com/fireflysouth I LOVE my friends at downsyn.com! Here's a kiss.

03-14-2006 06:32 PM
all4kierra   New Member Location: Hilliard, Ohio Registered: Mar 2006 Posts: 9 Last visit: 03-23-2006	Wow, you all are fast to post!!! Thank you many times over for making this new mom feel welcome! I did just post a few pictures of my angel but am now curious as to how you post a picture below your profile (to the left of the screen) and underneath the posts. Any suggestions on how I could do that? Thanks, again, ladies - you are wonderful! ~Tawni

03-14-2006 07:33 PM

DanielsMommy   Super Member Location: Rhode Island Registered: Sep 2005 Posts: 1403 Last visit: 03-24-2006

Hello and Welcome. We also learned of Ds at my son's birth as well as his heart defect (Complete AV Canal). He had his repair surgery in Aug (he was 8 weeks old). It is such a stressful time awaiting surgery...but as you probably have read...our kids do unbelievably well with surgery. If I can help in any way, please do not hesitate to ask. We took pictures....so if you think it would be helpful to see...just let me know. We will keep you and Kierra in our prayers as you await surgery. __________________ Lisa Mommy to Elayna 10-1-02 and Daniel Ds 6-7-05 Always have hope....Without rain, there can be no rainbows.

03-14-2006 07:54 PM

McKenna   Senior Member Location: San Antonio, Texas Registered: Feb 2006 Posts: 172 Last visit: 03-24-2006

Hi Tawni, "husband" and sweet Kierra! (I love her name, by the way) I'm McKenna. My daughter was my husband's and my first child as well and I was only 21 when I got pregnant with her. We found out that there was a huge possibility that she would have DS while I was pregnant, and that was confirmed at birth. Darah had a complete AV Canal, ASD, VSD and PDA. She had open heart surgery when she was 3 months old. 3 days after her surgery, her cardiologist said we could go home...but I was so shocked (they prepared me for at least 2 weeks), I declined and asked if we could stay another night. It just seemed too simple. Well on Day 4, they kicked us out and she hasn't had too many problems since. All of her problems are feeding related. She was actually in the hospital longer for her feeding tube placement than she was for open-heart surgery!!! Welcome to the group, and I'm going to head over to the photo section to see pics of your girl. __________________ ~McKenna~ Mom to Darah Faith (8-11-04) Darah's Website

03-14-2006 07:59 PM

julias_da_da   Member Location: Registered: Jun 2000 Posts: 30 Last visit: 03-20-2006

Someome once told me that one of the only good things about pain is you don't remember it.....they were wrong...yet... Being 8 years away from those first weeks i can still almost taste the anguish and pain i felt when we were told our daughter had Down Syndrome and my only advise is for you and your husband to hold each other as tight as you can and love each other and then love each other some more. It's going to be a rough road ahead but one well traveled by not only the people here but the people your family will meet in the days,weeks and years to come.We are here for whatever help we can give,there will be questions maybe we can answer..you know been there done that have the t-shirt... and we have a map of the road you are just taking your first steps on. When i first heard about my daughter i got good and angry,with myself the world and God...She and I still are having our problems [ i know God is a woman my wife told me so] but after the anger and the tears comes the realization that you have a beautiful child who is going to need all the love you have to give..like any child and your child is going to need special care...like any child and your child is going to be the most loved child..like any child. actually you have had a child and for the first months enjoy just the child try to get by the issues and conentrate on that,these years pass so very quickly and there will be time for the issues remember to love each other a little extra and you will get thru the "early" years........ ..bob julia's da da __________________ "If columbus could picture a round world,why can't we seem to picture a kinder one?"

03-14-2006 08:32 PM

bonniepd   Senior Member Location: Minneapolis area Registered: Jan 2006 Posts: 136 Last visit: 03-24-2006

Welcome Tawi and Kerri. This is a great site to come to. Everyone is very supportive. I know how the shock feels and many here know it very well. My family is still struggling. My husband has a lot to over come. Anthony was born 12/29/05 and we had no advanced warning of DS. We even had a level two ultrasound and that even has plenty of error. So what I am trying to say is there are errors in all tests. There was a reason for you to have this wonderful baby in your home. I learned of Anthony's DS the day after he was delivered. Anthony was the easiest deliver of all three boys and I have not had any post partum issue like I had with my other two older boys. Anthony has a good hart so with are thankful for that so far. Although the doctor heard something at our two month visit and she wants us to go in to make sure his AV cannel has closed. I do that next week. Good luck with sugary. Try to post pictures. Everyone will enjoy see you and your family! By the way my sister's birthday is October 2nd too. Bonnie __________________ Alexander (8/7/99), Andrew (9/26/02), Anthony (12/29/05 DS)

03-14-2006 08:44 PM
lespring   Super Member Location: Twin Cities metro area, MN Registered: Mar 2005 Posts: 3743 Last visit: 03-22-2006	WELCOME!!! Your story is IDENTICAL to mine! From the trying for 2 years, emegency c-section, and surprise diagnosis. ( I also had 16 weeks of bedrest, blech!) Nice to meet you guys! __________________ ~Leah~ mom to Noah 18, Tyler 17,Angela 9 (DS) downcues.com

03-14-2006 08:56 PM

Stephanie   Super Member Location: Yardley, PA Registered: Feb 2004 Posts: 2612 Last visit: 03-23-2006

Tawni, welcome to the site. You have a beautiful daughter and she will most definetly be in my prayers. Make sure to add her surgery to our calendar above so that we can all pray the day of. Oh and we welcome rambling...that is what this site is GREAT for....we love to hear and help and ask...this place is fabulous...all Tom and his families doing! __________________ Proud Parents Stephanie and Joe Awesome Big Brother Joey 3/8/97 Beautiful Daughter Megan 11/8/03 Precious Lil' Livi 7/6/05

03-14-2006 09:55 PM
Hannah's mom   Senior Member Location: Adironadack Mountains, Upstate NY Registered: Jul 2001 Posts: 927 Last visit: 03-24-2006	Hi Tawni and welcome to Downsyn! I just saw her pics in the photos section and she is so adorable!Mydaughter had open heart surgery at seven weeks old so I understand how you must be feeling.We will say lots of prayers for you all.Looking forward to getting to know your family. __________________ Heather- Mom to Hannah(7)DS and Logan (3) www.xanga.com/Momof2monkeys

03-14-2006 11:34 PM

kazpa   New Member Location: Australia Registered: Jan 2006 Posts: 26 Last visit: 03-22-2006

Welcome Congratulations on finding this fantastic site so early , it took me 21months...i was not really into the net stuff, but we are addicted now. Abbey is my little ds chick she is beautiful and was also a surprise diagnosis about 4 hours after delivery. I also have 2 other children who adore her,and a great hubby. Abbey makes every day a happy day!! Good luck with the heart op. __________________

03-15-2006 10:04 AM
EliasMom   Member Location: Mty, Mexico Registered: Dec 2005 Posts: 78 Last visit: 03-21-2006	hi and welcome! this is Alicia, mom to Elias (1 yr old) =) from Mexico __________________ Elias Medina Llanas - Feb 21 2005 "Elias has the extra chromosome that people needs" Visit and Post @ Elias's Fotolog Im a maker @ ProudMommaLJ Inexpensive Hosting with Care -Provided to you by Real Mothers!! ProudMommaHost.com * soon *

03-15-2006 12:51 PM

Mom2Sean   Senior Member Location: Kansas Registered: Oct 2004 Posts: 704 Last visit: 03-24-2006

Welcome, Tawni! I saw your photos first, so popped over her to meet. Sorry you have surgery coming up soon, we will keep Keirra in our prayers! To add a photo to your posts, click on the Profile tab at the top of the screen. You can add info about yourself and in the line that says signature, put the URL address to the photo you want to use and anything else that you want to have show up with each post. Hope that Helps! __________________ Deborah, mama to Aidan (11-15-02) and Sean (9-4-04)

03-15-2006 01:35 PM
hayden's mom   Senior Member Location: Round Rock, Texas Registered: Sep 2005 Posts: 579 Last visit: 03-23-2006	Hello and welcome. I am looking forward to learning more about your family. I love your daughters name!! My name is Laura and I am mom to Hayden who is almost 3. We found out at our 20 week ultrasound that Hayden would be born with DS. He is so precious to us and we feel blessed to have him. __________________ Mommy to: Holden 6 Hayden 2 (ds) Jacie 1 And the Angels Danced the day you were born

03-15-2006 02:23 PM

marci   Super Member Location: lancaster, Pa Registered: Dec 2004 Posts: 1228 Last visit: 03-24-2006

Welcome to the board. We will keep Kierra in our prayers on the 31. Joni was born with a complete A/V canal defect and had open heart surgery at three months old. She was home ins 5 days and has been pretty healthy. You'll get a lot of support and information here. Stop by when you can and don't ever worry about rambling we all do it. __________________ Marci Mom to Caleb, Cody, Evan, Ethan, Alex, Anna, Joni (ds, 4/03) "My mother taught me very early that I could achieve any accomplishment I wanted to. The first was to walk without braces:" Wilma Rudolf winner of three gold medals in running events at the 1960 summer Olympics

03-15-2006 07:02 PM
Tigger   Senior Member Location: NSW, Australia Registered: Jan 2006 Posts: 111 Last visit: 03-24-2006	Welcome!! We are doing open heart surgery on March 22nd so I know how you feel. There are lots of people here who have gone through it and everyone is really supportive. Keep us informed and everyone will pray. __________________

03-15-2006 08:12 PM
NattysMommy603   Super Member Location: Athens, Alabama Registered: Jun 2003 Posts: 1012 Last visit: 03-21-2006	Welcome! My Natalie will be 3 in June and we've been through heart surgery when she was 3 months old. We will pray for her, and your family. Hope to hear more soon, and see pictures. Tracy __________________ Tracy Proud momma of Natalie Marie 6-8-03 DS, and Tyler Slayton, 4-15-05 (I'LL NEVER FORGET THE IRS NOW!)

03-15-2006 08:40 PM

Livi's Mom   Senior Member Location: Quaker Hill, CT USA Registered: Dec 2005 Posts: 131 Last visit: 03-23-2006

Hi Tawni and Kierra! Welcome to Down Syn. I can totally relate to your story. I didn't have difficulty conceiving but boy I was on the best possible behavior--no caffiene, no nutrasweet, exercise, and no excess weight like I had with my son (all of which I lost and more before becoming pregnant). It just didn't seem fair--we knew we were at high risk during the pregnancy and it was stressful but I had lots of faith that everything would be ok and you know what--it is more than ok. I wouldn't trade Livi for the world. In fact, we want another child. I will keep you in my prayers for a quick recovery. I have to take a peek at your little ones pic. __________________ __________________________________ Diane, mommy to Alex (3/25/04) & Alivia (9/19/05)--ds

03-15-2006 08:54 PM

YankeeMom   New Member Location: Registered: Mar 2006 Posts: 11 Last visit: 03-22-2006

Hello, Congratulations on the birth of your baby. Our kids almost share a birthday. My oldest was born on 10/1/02. My youngest who has DS was born on 10/1/04. Katherine's open heart surgery was on 2/8/05 at Children's in Boston. I can tell you that her surgery and recovery were nothing short of miraculous. You have my prayers that your experience will be the same. Be good to yourselves. All you can do is take it one day at a time. Keep us updated. Nancy

03-16-2006 06:29 AM
helandy.cop   Super Member Location: Nottingham, UK Registered: Sep 2003 Posts: 3808 Last visit: 03-24-2006	Hi and welcome. Will be sending prayers your way for the surgery. We've been there and it's the worst feeling, but it's over as soon as you know it. All the best __________________ Helen Mum to Rachael Kinza (25/07/01), Matthew Isaac DS (14/06/03) and Hannah Cerys (14/06/05) - my gorgeous children!

03-16-2006 09:04 AM

Jenna   Senior Member Location: Texas Registered: Feb 2006 Posts: 587 Last visit: 03-24-2006

Hello and welcome Tawni, husband and precious Kierra! It's so great to have you here at downsyn. My name is Jenna, and I'm mom to Nate 2 1/2 yrs old and Lana 10 1/2 mts old who happens to have ds. I'm glad you joined us. This forum is very uplifting, highly addictive, and the people are wonderful. You'll be able to get so much out of coming here, including friendships, advice, and understanding. You're not alone in this lovely journey of life. I will mark March 31st on my calander and add Kierra to my prayers. Enjoy your little precious baby (she's so adorable) and the moments you are in! __________________ ~Jenna Proud mamma to these beauts!!! DOB: Nate 7-26-03 ~&~ Lana 4-21-05 **** **** � "Just when you think you have learned what you need to know in life, someone truly special comes into it and shows just how much more there is."

03-16-2006 03:57 PM

katia   New Member Location: New Mexico, USA Registered: Feb 2006 Posts: 9 Last visit: 03-16-2006

HELLO TAWNI WELCOME AND I AM HAPPY YOU FOUND US! I JUST WANTED TO LET YOU KNOW THAT I WILL PRAY FOR KIERRA.I AM ALSO NEW HERE AND MY UNBORN CHILD HAS BEEN DIAGNOSED W/ DS TOO. BEFORE DS, HE HAD A HEART ARYTHMIA; HOWEVER, HIS HEART HAD BEEN REGULAR FOR THE PAST 4 WEEKS ( I AM STILL PRAYING THAT IT REMAINS NORMAL AND THAT HE HAS OUTGROWN WHAT EVER HE WAS FIGHTING). BEST WISHES TO YOU AND YOUR FAMILY,KATIA HERNANDEZ-ABBOTT. __________________ KATIA HERNANDEZ-ABBOTT

03-16-2006 11:24 PM

alexmom   Senior Member Location: Hilliard, OH Registered: May 2004 Posts: 617 Last visit: 03-22-2006

Welcome Tawni!!! Tawni, WELCOME! I'm glad that you found the site. I'm Jennifer and ran into you and your mother at the DSACO new parents meeting a few months ago. This place has been such a wonderful gathering of support, inspiration, and knowledge. I have learned so much from the kids and parents on downsyn. It is a difficult thing to accept. It does get much easier with time, but those feelings of frustration and fairness still haunt me every now and again. Today I was talking to one of my best friends. She dealt with fertilty issues for the past couple years and finally came to terms with the fact that she wasn't going to conceive. They decided to adopt and were going to request a girl because her husband has two boys that she adopted. Just when they got into the adoption process.....she conceived and she was overjoyed. Today she called me to tell me that an ultrasound indicated that the baby was a boy. With all of the struggles that they have had, I was surprised that she was a bit upset that she wasn't getting her girl. I was upset because I wish that my only surprise would have been that Alex turned out to be a girl instead of the boy we were anticipating. It is amazing how this one little kid has touched and changed our lives. I saw the other post with Kierra's picture....she is beautiful!!!!! I am praying that she stays healthy before surgery and will certainly send her plenty of prayers on the 31st. Please let us know how it goes. __________________ Jennifer - Alex's Mommy (3/24/04)

03-17-2006 07:48 PM
emma'smom   Senior Member Location: Coeur d'Alene, Idaho Registered: Sep 2005 Posts: 243 Last visit: 03-24-2006	Welcome Tawni! I just looked at your pictures of Kierra. She is absolutely beautiful! What a precious, sweet little girl. This is THE PLACE TO BE for information, support and laughter. I will absolutely be praying for Kierra whenever I think of her and especially on March 31st. Keep us updated! __________________ Cheryl mom to Justin 2/13/02 Emma 6/23/05 ds

03-21-2006 03:22 PM

fixedyang   Senior Member Location: Orlando, FL Registered: Dec 2005 Posts: 166 Last visit: 03-24-2006

Welcome Tawni! My little Sadie was born the day after your daughter and Larkin was born the day after that! We're all on the same time line with our little ones and learning about DS. This is a great place to be and I'm glad you posted. I'll be praying for you as 3/31 approaches...... __________________ Sherri & Chad married 12/16/00 Mom to Cooper (14), Hunter (12), Ethan (2), and our sweet baby girl Sadie born 10/3/05 (DS) "Listen to the MUSTN'TS, child Listen to the DON'TS Listen to the SHOULDN'TS the IMPOSSIBLES the WON'TS. LISTEN TO THE never haves Then listen close to me- ANYTHING can happen, child, ANYTHING can be" Shel Silverstein

03-23-2006 11:29 AM

all4kierra   New Member Location: Hilliard, Ohio Registered: Mar 2006 Posts: 9 Last visit: 03-23-2006

Hello, again, Jennifer! I missed the last DSACO meeting and will likely miss this one since it is only a few days before her surgery . . . I want to spend as much time with my little munchkin as I can before the "big day"! "Fixedyang" - we will have to keep in touch since our little ones are so very close in age! Right now, I am trying to figure out if she is on target developmentally. Everything I have found gives ranges which is probably best, but I don't know if she should really be rolling over now, about to sit up, etc... Is your little one rolling over yet? Kierra shifts from side to side but cannot figure out how to get around her arm. And, she absolutely despises tummy time! I am trying to find that balance of making her spend time on her belly but not traumatizing her . . . results in only one or two times on her tummy a day. :{ Thanks, again, for the warm welcome everyone! I really, really appreciate it! Take care, Tawni

03-23-2006 11:59 PM
kellyrimmer   Senior Member Location: Atwood, TN Registered: Feb 2006 Posts: 184 Last visit: 03-23-2006	Hello and welcome! I understand every emotion you have and believe me it will get better. Alexis had open heart surgery Dec. 1st and if you need anything or have questions let me know I can try to help or find out where you can find it out. To be honest you can find out everything on this site. It is great and all the moms and dads on this site are the best! __________________ Kelly Rimmer

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