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Topic: new poster/please pray

03-01-2006 12:30 PM

Heather335   New Member Location: MA Registered: Mar 2006 Posts: 6 Last visit: 03-23-2006

I found this site on the NADS board and recently joined your forum. My name is Heather. My husband, Richard and I are expecting our second child in a few weeks. Our first daughter, Olivia Grace, was born last March. We are expecting our baby to born with Down's Syndrome based on my AFP results (We did not want to do an amnio because it wouldn't have made a difference and the risk of miscarriage was too great). In addition, ultrasounds show our baby has duodenal atresia and an AV canal defect. Both will require surgery. As I am approaching the "big day", I am apprehensive about my baby's health and would appreciate any prayers people are willing give. I honestly believe in the power of prayer and have asked God every night to watch over my little one. I know that he must have a plan and a reason for giving us this baby and all will be revealed in time. So please keep us in your prayers. I will update the boards when the baby arrives. Thank you and God bless, Heather Wife of Richard Mother to Olivia and Baby #2 (EDD 3/30 or sooner!)

03-01-2006 12:37 PM

ajbest   Super Member Location: NC Registered: Apr 2005 Posts: 2070 Last visit: 03-24-2006

welcome Heather! we will be praying for your angel. many on here have had the AV Canal repair and are doing well. i'm sure there must be someone who's faced duodenal atresia also. do keep us updated. can't wait to hear more about your family and see pictures when the little one arrives. God bless you all, aj __________________ Momma to Janna (AVCanal-T21-02/02/05) Wife to Joseph (TOF & still thriving) "Where there is charity and wisdom, there is neither fear nor ignorance." St. Francis of Assisi

03-01-2006 12:43 PM
mary c   Senior Member Location: Westchester County, New York Registered: Jan 2005 Posts: 688 Last visit: 03-24-2006	Will definitely pray. When is the baby due? Is it a boy or a girl? Any names? This is a safe place to come and post. Any questions please come and ask. __________________ Mary Mom to Libby 6/92, Alex 9/93, Anna (DS)12/12/03

03-01-2006 12:47 PM

DanielsMommy   Super Member Location: Rhode Island Registered: Sep 2005 Posts: 1407 Last visit: 03-24-2006

Congrats on your pregnancy....many prayers coming your way. I was going to say afp is so unreliable...but with the av canal...it may be a possibility for your baby having Ds. We learned at my sons birth about Ds..and av canal. He had his successful repair back in August. I know how anxious you must be, but you will have tons of support here. Your new baby is going to be amazing...and you won't believe how strong our kids can be. Even with heart surgery...they bounce back in no time. You can see my sig pic below...my son is almost 9 months..and I also have a 3 year old daughter. Welcome and please keep us updated on your baby's arrival. __________________ Lisa Mommy to Elayna 10-1-02 and Daniel Ds 6-7-05 Always have hope....Without rain, there can be no rainbows.

03-01-2006 01:10 PM

Heather335   New Member Location: MA Registered: Mar 2006 Posts: 6 Last visit: 03-23-2006

Thank you all. We do not know if it is a boy or girl. We figured that God would let us know at birth! My due date is March 30th but due to my gestational diabetes and the baby's duodenal atresia I am measuring 6 weeks further along due to extra fluid. So this week, instead of measuring 36 weeks pregnant, I look and feel 42 weeks pregnant! My doctor seems to think I will deliver in the next couple of weeks. There is also the possibility that I may need a C-Section because a recent ultrasound shows that the baby is breech. The doctor is going to attempt to turn the baby into the correct position. The names are still up in the air but we have Ben James (named after our grandfathers) and Ava Marie. My husband can not commit to things easily so it will probably change 100 times before we decide. It's funny but many parents have told me how strong the babies are and how quickly they bounce back from surgery. I guess it's something I will have to go through to understand because right now it is so scary to me. I will keep you and your families in my prayers. Thank you! Heather

03-01-2006 01:10 PM

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

Welcome Heather and Congratulations on your pregnancy!!! I will most definitely keep you in my prayers! If you have any questions at all don't hesitate to ask. Someone or many will have answers and/or advice. Look forward to hearing from you about your delivery and learning more about you and your family. __________________ ~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."

03-01-2006 01:22 PM

McKenna   Senior Member Location: San Antonio, Texas Registered: Feb 2006 Posts: 173 Last visit: 03-24-2006

Hi Heather! I have an 18 month old daughter who had an AV Canal repaired when she was 3 months. I was in the same boat as you. I didn't have an amnio done, but the docs were quite certain Darah was going to have Down syndrome. When I was pregnant with Darah I actually cared more about her strong possibility of DS than the heart problem. I figured they could fix her heart, you can't change DS. The second she was born, I did a complete flip flop. Just like everyone here, I wouldn't change my girl. You may not get to that point right away, but you will. This baby is going to rock your world!!! (Warning, stubborness is located on the 21st chromosome, so be ready for a fighter! That same stubborness that is going to drive you crazy is what is going to get him or her through this heart problem!) I have a friend whose son had a duodenal atresia. He's doing great now at 10 months of age. I guess your kids will be close in age, huh?!?! Glad to meet you~McKenna __________________ ~McKenna~ Mom to Darah Faith (8-11-04) Darah's Website

03-01-2006 01:33 PM

pilgrimhen   Senior Member Location: Bagdad, Ky. Registered: Aug 2004 Posts: 396 Last visit: 03-22-2006

Welcome! And we will be praying for Baby's health and safe arrival. Once thing that came to mind: Please find supportive and sympathetic MDs ahead of time if possible. Attitude of those around you during health difficulties can make all the difference. __________________ ~~Bayley~~ Elijah (16), Gracie (14), Anna Joy (12), Rose (9), Zeke (7), Daniel (5/11/04 - DS) ~~~~~~~~~~~~~~~~~~ I'm still working on me...

03-01-2006 01:48 PM
klem   Super Member Location: Gadsden, AL Registered: Aug 2004 Posts: 1759 Last visit: 03-24-2006	Welcome!! You've been given some great advice and the prayers really do make a difference. Your baby is going to do wonderfully! You just don't know yet how lucky you are __________________ Kelley, Robby's wife mom of Daulton, the Mayor (10-07-98) and Drake, my treasure on loan from God (4-19-04) DS

03-01-2006 02:19 PM

Heather335   New Member Location: MA Registered: Mar 2006 Posts: 6 Last visit: 03-23-2006

Bayley, I have already learned the doctor lesson. I loved my OB/GYN but she suggested that I switch my care to another hospital and doctor who specializes in high risk pregnancies. This is also the hospital where the baby will have the first surgery. When I went to this hospital for my first level two ultrasound and discovered the results of my AFP and that the baby possibly had duodenal atresia, the MD kept pushing the amnio stating that "time was of the essence if we wanted to do anything (aka terminate)about the fetus". First of all, we told her we would not terminate for any reason. Secondly, I constantly refered to the baby as "a baby" and she insisted on calling it a fetus. I knew that we were not on the same page. When I needed to switch my care, they orignally had me assigned to this same doctor. I put my foot down and said absolutely not and insisted on someone else. I am very glad I did, my new MD is very supportive of our decisions and has never made us to feel like we were making the "wrong choice". In addition, the specialists have been absolutely wonderful. I love our cardiologist unfortunately he will not be doing the surgery. The GI surgeon was extremely helpful as well. I am usually not that forceful...I guess it was the mama bear inside of me! Heather

03-01-2006 02:25 PM

pamelajones   Senior Member Location: Georgia Registered: Mar 2005 Posts: 474 Last visit: 03-22-2006

Welcome Heather. You and your husband sound like you have a wonderful outlook on your pregnancy. My son also had duodenal artresia and required surgery on day 1. If you have any questions regarding the Duodenal artresia please ask. Again, Welcome, and you and your family will be in our prayers. __________________ Pamela Elijah Zade (DS 9/1/04) Canaan Grant (2/17/06) "Some of our hurdles are unfairly higher than those others face, but that is what makes the true measure of the person -- not the size or quantity of hurdles but having the intangible fortitude to overtake each hurdle in stride." a qoute from an email sent to me the day EZ was born...from my wonderful friend..Paul Boyd

03-01-2006 02:26 PM

mary c   Senior Member Location: Westchester County, New York Registered: Jan 2005 Posts: 688 Last visit: 03-24-2006

Heather, you are wise to do as you did. When our daughter was born (we didn't know prenatally) one of the ob/gyns in the practice visiting us in the hospital said very unhappily "see this is why we tell you to do amnios" with the obvious implication that we would have terminated (which we wouldn't have). You are going to be just fine Mama Bear. __________________ Mary Mom to Libby 6/92, Alex 9/93, Anna (DS)12/12/03

03-01-2006 02:58 PM

helandy.cop   Super Member Location: Nottingham, UK Registered: Sep 2003 Posts: 3816 Last visit: 03-24-2006

Congratulations on your baby-to-be! Enjoy the rest of your pregnancy - if that's possible when you're already measuring at 42wks, poor old you! My son Matt had the AV Canal and had surgery at 6mths, and did fine. It's a very scary time, but has to be done. And amazing how you forget about it after, and just move on! Anyway, any questions, you're more than welcome to ask them here. Looking forward to hearing more from you soon. __________________ Helen Mum to Rachael Kinza (25/07/01), Matthew Isaac DS (14/06/03) and Hannah Cerys (14/06/05) - my gorgeous children!

03-01-2006 03:45 PM

rhonda   Super Member Location: Syracuse, NY Registered: Jan 2003 Posts: 3184 Last visit: 03-24-2006

Hello and welcome!! The names you have picked out for your newest addition are beautiful as is your daughters!! We found out at our 20 week sonogram that our son had the AV Canal heart defect and the possibility of having Down Syndrome. We decided against the amnio too. Is the duodenal atresia called the "double bubble"? The doctor's thought Dylan had this during a sonogram one time and then again when he was born but after taking another look at his stomach, it turned out he didn't have it. I will be praying for you and the baby as your delivery date approaches. Please keep us updated as you can. __________________ Rhonda Taylor 13, Jordan 11, Dylan 2 1/2

03-02-2006 12:46 PM

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

Hi Heather, Welcome to the board. Joni had a complete A/V canal defect. She has open heart surgery at 3 months. She is doing very well. The matter of fact she gets sick less then any of our other kids. We'll keep you in our prayers. Congrats __________________ 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

03-04-2006 11:55 PM
hayden's mom   Senior Member Location: Round Rock, Texas Registered: Sep 2005 Posts: 580 Last visit: 03-23-2006	Hello and Welcome!! Congrats on your pregnancy. I am praying for the safe arrival of your little one. __________________ Mommy to: Holden 6 Hayden 2 (ds) Jacie 1 And the Angels Danced the day you were born

03-05-2006 12:02 AM

Diane   Senior Member Location: Indianapolis, IN Registered: Mar 2003 Posts: 104 Last visit: 03-22-2006

Welcome and CONGRATS. My Daughter, Abby, now 4 also had the duodenal atresia, aka double bubble. I believe someone else posted their kiddo had this, too. Feel free to email anytime with questions on that one. The heart issues I am not much help on, Abby's closed enough on it's own. I love the name Ava by the way. We did not know the sex either, I was convinced it had to a boy, because a girl would never cause her Mommy that much trouble, I was sure wrong! __________________ Mom of 3: Nick-13,AS Brie-13,going on 21 Abby-4,that little extra something

03-05-2006 09:33 AM

southernbelle   Super Moderator Location: Gray, GA USA Registered: Nov 2004 Posts: 4264 Last visit: 03-24-2006

Welcome Heather. How exciting a baby in just a few weeks! I'm glad you've joined our family. We didn't have the 'double bubble' thing but we did have a major heart defect. Tetralogy of Fallot. Austin had open heart surgery at a week old. Hes doing great. Glad you have joined our family and I can't wait to see this new little one when the big even arrives!!! YOu are a strong 'mama bear' and I'm looking forward to getting to know you. 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.

03-05-2006 09:53 AM

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

Welcome to the Boards!!!! I am so glad you have come! Sounds like your new bundle will be here in no time! How exciting....I have to tell you, you and your family sound so wonderful and loving and your new baby is sooooo lucky to have you!!!! I will pray for health with the new baby!!!! Keep us posted! __________________ Proud Parents Stephanie and Joe Awesome Big Brother Joey 3/8/97 Beautiful Daughter Megan 11/8/03 Precious Lil' Livi 7/6/05

03-05-2006 06:41 PM
evarouzee   New Member Location: Waco, Georgia Registered: Jan 2006 Posts: 13 Last visit: 03-17-2006	Hi Heather: Wishing you a wonderful delivery, and my prayers are with you and your hubby. Granny to Andrea

03-05-2006 08:03 PM
HiCourt   Senior Member Location: Shreveport, La Registered: Jul 2000 Posts: 732 Last visit: 03-24-2006	Congrats on your new coming baby! She will make you sooo happy! Keep us posted on the birth.....We are praying for a safe delivery! __________________ Jennifer, mother of Miss Courtney (11, ds), Nicolas (10, gifted, adhd), Austin (6, gifted), and Gerritt (3), Up With Downs-parent contact & webmaster, nursing student http://www.teendigs.com/CourtneyGriffith

03-05-2006 08:22 PM

momof3boys   Senior Member Location: Valley Springs, CA Registered: Aug 2005 Posts: 918 Last visit: 03-23-2006

Hi Heather and Welcome. I am just now seeing this because I have been out of the loop for a week or so. My son Colton just had surgery for an AV Canal, yes it was very scarey, but he came through it with flying colors and everyone here at this site has been so wonderful supporting me through my fears and preparing me for what to expect. So, I hope that you will use this site to help you as well. We are all here for you and can relate to what you are going through. I'm so proud of you for standing up to the doctors the way you have. You sound like a very strong person and your baby is very blessed that God has chose you to be his or her mommy. __________________ Dee Dee Wife to Jason and Mom of 3 Boys Austin 12/28/93 Logan 08/12/00 Colton 7/12/05 DS

03-07-2006 10:20 PM

JenBrock'sMom   Super Member Location: Des Moines, Iowa Registered: Sep 2005 Posts: 1322 Last visit: 03-23-2006

Heather, Richard, Olivia and baby - welcome to Downsyn. Congratulations on your expecting arrival. I waited to find out my baby's gender until birth too -(we were surprised to have a boy - Brock born 7/28/05) and we got the Ds diagnosis a few hours after birth. He is doing awesome, and the advice I receive from parents on this site is the best! I wish you all the best with your delivery and look forward to hearing more about your baby. __________________ JenBrock'sMom & wife to Jay Brock 7/28/05

03-08-2006 07:38 PM

Hannah's mom   Senior Member Location: Adironadack Mountains, Upstate NY Registered: Jul 2001 Posts: 927 Last visit: 03-24-2006

Hi Heather and welcome. My name is Heather also. I will be saying prayers for your family.My daughter had av canal surgery at seven weeks old.Her best friend who has DS had duodenal atresia and had surgery a few hours after she was born.She did great.Can't wait to get to know you better and she pics of your new little one. __________________ Heather- Mom to Hannah(7)DS and Logan (3) www.xanga.com/Momof2monkeys

03-09-2006 11:28 AM
Madisons Mom   Senior Member Location: Philadelphia, PA Registered: Feb 2005 Posts: 441 Last visit: 03-24-2006	Congratulations on the upcoming arrival of your new precious little baby and welcome to the site! You, the baby and your family are in our prayers! Please keep us posted __________________ Madisons Mom Carola Madison Theresia born 2-04-05

03-10-2006 09:39 AM

Renee Lacey's mom   Senior Member Location: Gloster, Louisiana Registered: Oct 2005 Posts: 700 Last visit: 03-24-2006

Sorry I didn't see this post sooner. Congrats on your soon to be new angel.. We had open heart at 6 months and Lacey had Tetrology of Fallot.. And she has had some eye surgeries and ear tubes.. It seems like alot but she is our 3rd little girl and the glue of our family.. She is now 20 months and is into everything.. I know it seems scary right now but it will all pass and seem like it never happened. I tell everyone that if I knew then what I know today I would of never shed a tear. DS is not the worst thing in the world and to me, she is no different than our other 2 girls.. Just love and spoil that baby.. It will amaze you how that baby will touch everyone around you. Good luck and God Bless!!! Please keep us posted. __________________ Renee Parker Haley Kassidy * An extra little Chromosome thats all it is, you see. Where all of you were born with 2, my angel was blessed with 3.*

03-14-2006 09:38 PM

Adriansmom   Member Location: Lapeer MI Registered: Dec 2005 Posts: 55 Last visit: 03-17-2006

Congrats & Prayers Hi I wanted to congratulate you on your pregnancy and let you know my family will be praying for yours. My third child Adrain James I like your choice in possible middle names by the way was born December 7th 2005. We had no markers or clue that he would have DS. We expected a totally typical child like our first two. SUPRISE! I was SO upset at first. YOu seem to be taking it well. This place is just the best thing for me. I was so lost and scared and sometimes I feel that way now too but I know if I ever have any questions or need support I can come here and feel like I am not alone. no matter what you are facing there is more than likely someone here who has faced it. My son was not born with any health problems that we know of and I am trying to take it day by day. Feel free to vent and share. I know we all are looking forward to pictures! My family will be praying for your baby and your family. __________________

03-15-2006 04:09 PM

** Hannah's mom ** UK   Super Moderator Location: West Midlands UK Registered: Jun 2004 Posts: 3852 Last visit: 03-24-2006

Hi Heather congrulations on new mommy to be glad you found the site keep us updated with your pregnancy i also had gestational diabetes with Hannah ( but she only turned out to be 7lb 5oz born ) and not the big big baby they thought she was going to be she also had a heart defect but came out of surgery with flying colors welcome to the site sending prayers your way __________________ 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

03-16-2006 03:39 PM

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

Hi Heather....Welcome! I am sending prayers your way. Good luck with the birth and we can't wait to hear about his or her arrival into this world. The cool thing about this forum is that you can usually find someone who has gone through the same things that you are going through, so you will find tons of support here. I have learned so much from all of these parents and kids, and I'm glad that you found us. I think someone on here did a survey/thread a long time ago and it was amazing how many of our little angels were born a little early. My Alex was 3 weeks early. I know those last few weeks are uncomfortable....so hopeful relief will come soon __________________ Jennifer - Alex's Mommy (3/24/04)

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