|
Post by Daddy2Josh on May 11, 2007 20:45:54 GMT
Hiya odiness Welcome to Up for Downs. Please have a good look round & tell us a little about yourself. If there is anything we can do to make you comfortable just let us know XXXXX
|
|
|
Post by shirley on May 11, 2007 21:18:19 GMT
Hi and welcome to the site, cant wait to hear more about you and your family
Shirley xx
|
|
|
Post by Tace on May 11, 2007 21:30:39 GMT
Hi odines, welcome to the site, look forward to getting to know you and your family...
Tace x
|
|
|
Post by odiness on May 11, 2007 21:56:26 GMT
Hi I'm Lucy, a newbie to the site. My story so far.... I found this site through Bounty and the lovely Rillith who is an administrator on here. I'm 20 weeks pregnant today, about 2 weeks ago I was contacted by my midwife at the hospital to say that I needed to go back to the hospital as a result of a high risk result from my 16 week screening. It was all very much a shock and I was told I had a choice as to whether I had an amnio or not but that I would need to have it immediately if that's what I wanted. Of course, you want the reassurance that everything is fine with your little one, so without the luxury of time to think about it, I agreed to have the test. My fast track results were not available because the sample taken wasn't big enough, therefore I had to wait for my full test results to come back from the lab. This week, Tuesday, I called the hospital for any news and was advised that a 'problem' had been detected and to go in and discuss this. I arrived an hour or so later to receive the news that my little one has Downs. I was asked to make a decision as to whether I would like to continue with the pregnancy. I am not sure how many of you have had to face that decision or whether many of you weren't aware that your baby had Downs, it has to be the hardest decision anyone will ever be asked to make in their life. I decided that I wasn't going to take this decision lightly and needed some time to think carefully as whichever I decide has to be right for me and my baby and I have to come to terms with it. So I spent some time looking at various web sites, my mind and emotions going through so many different scenarios and feelings... I will be honest, I didn't have a clue what to do for the best. The most overwhelming feeling by far was one of grief and loss, it was as though I had already lost my baby. Certainly my head was trying to convince me of the practical things that I should consider, like the fact that I am a single Mum to be and that returning to work will be very hard etc... My heart was telling me that there is really only one decision that I want to make. I went back to the hospital for my 20 week scan yesterday, realising that instead of the excitement of finding out the sex and that my baby is healthy, I was going to have my worst fears confirmed and have to see my precious little baby on screen without knowing whether I will actually ever see her / him in the flesh. I will be honest, I felt under pressure to make a decision quickly and it became fairly obvious to me that I was really only expected to go one way... However, I pressed the matter, asked more questions about my baby's condition and explained that I need to be certain before I commit either way. I was offered a more indepth scan with a specialist unit who look particularly at babies where an abnormality or health condition has been detected. (This is next Tuesday) I then asked to take all of my medical notes, including the details of my amnio results, 20 week scan and sex of the baby. I got home and decided that I had to know what sex my baby was irrespective of whether I decided to continue with the pregnancy, so I tentatively opened the envolope, there it was in black and white, my baby has Downs Syndrome and is a girl. I had already learnt that the 20 week scan, although having confirmed the diagnosis, had not detected any other health problems at this stage. Suddenly it hit me, my baby is a fighter, she's strong and she's kicking the living daylights out of me, she is very much alive and deserves a chance. I don't know very much about Downs, I expect I will need to learn very quickly, but whatever me and my little girl have to face, the future has to be brighter with her than without her. So this leads to my reason for being here... I don't have a Down's child as yet but I have my little Jasmine growing inside me. I still have to get through next Tuesday and I have to be completely honest, although my decision is very much to have my little angel, if I am told on Tuesday that there are complications that will lead to severe health problems and trauma for her then I will need to reconsider. I hope and pray that this is not the case because I feel that no matter what, she is a gift to me and my family and my life will be so much happier with her in it. This is probably the longest introduction anyone has ever placed on this site, however, be warned, I am a chatter box and you haven't seen anything yet. I am sure I will get lots of support, share lots of moments and receive much useful information from this site and I look forward to chatting with you all and hearing about your precious little children. Please feel free to ask me anything you like about myself or situation, it's good to talk. Thanks everyone (those of you who managed to stay with me) Lucy xxx
|
|
|
Post by Tace on May 11, 2007 22:16:58 GMT
Lucy I am in tears, that was reallt touching to read, I have so much to say...
I am envious of you, you say you will have to learn fast but not as fast as me as i did not know Leo would be down's before he arrived. It would have made no diference to us if we had known Leo would still be here no matter what. We are very lucky as Leo has no major health issues just reflux which is under control with medication and he will hopefully grow out of it eventually, so they keep saying!
you have come to the right place to find out what life as a mum to a child with down's is really, not much different to a "normal" child really. Like any child you get out what you put in. I love the name you have picked, Jasmine. I think you are very brave but not because you are choosing to have your little girl, but because you are having her as a single parent, I don't know if I could do that.
So welcome again, I look forward to joining you and Jasmine for the next exciting weeks of your pregnancy and welcoming her into the world and looking at her 1st photos that you post, and for all her 1sts. As for being a chatterbox, I'm sure some of us will give you a run for your money, lol!!
Thankyou,
Tace xx
|
|
|
Post by heather1979 on May 12, 2007 10:01:27 GMT
I just wanted to say congratulations lucy!! i have a little boy who has williams syndrome and i said that i would never have another child with a disability because of my son and the fact that he will need care for the rest of life,after a while we decided to try for another baby and have an amnio,i went on to miscarry 3 times in 7 months(2x single pregnancies and a twin pregnancy) i fell pregnant again 3 mths after the last mc and decided to have the blood test and nucal fold scan which all came back normal which was good as i'd decided not to have an amnio due to the risk of mc and i had Aaliyah and within hours of her birth was told they had noticed palm creases or lack of them and i knew she had downs....hand on heart i will admit if id have had the amnio Aaliyah might not be here(although my hubby said we would have had her!!) Aaliyah is nothing like i expected a downs baby to be at all, when i look at her i dont see the downs i just see a beautiful little girl and sometimes i look at her and its like seeing her for the first time and i love her sooo much more. she has exceeded all expectations that ive ever had of her,i didnt know anything about downs before i had her and what i knew was the stereo typical stuff,im so glad that your giving your daughter Jasmine a chance and not just writing her off straight away like a lot of mums do,what ever you decide to do you will have support here if you need it!! She will bring so much love and joy in to your life ...more than you ever thought possible because she is Jasmine and your little girl who happens to have downs syndrome,,there will be days that you have to remind yourself she has downs because believe me its not the first thing you think of when you wake up,you just cant wait to see her smiling and give her the biggest cuddles that only a mummy can give!! Look after yourself and you know there is always someone here to talk too. Have you been in the picture gallery?? are kids are little stunners!! Take care Heather.x p.s we cant wait for another one!!
|
|
|
Post by shirley on May 12, 2007 10:57:59 GMT
Hi Lucy, First of all I would like to say congratulations on your prenancy and that I understand your feelings at the moment. I hope you can make the right decision for you and your little one.
My name is Shirley and I have a little girl with DS called Grace. She has just under gone major open heart surgery to rectifiy her heart defect and she is doing great. You wouldnt think she had even been through the surgery only for the small line on her chect and it isnt even 2 weeks yet.
I like yourself had major concerns over how our life would be affected by having a baby with DS, but, so far except for a few extra appointments and her surgery everything has been as normal. She is the light of my life and has changed me for the better. She amazes me every day in the things she does. this site has been a real help to me , as Im sure it will be for you also. Have a good look around and read about all our children, like any other babies they have there ups and downs. I would advise you to have a real good look at the pictures section as I found this particularly helpful.
Hope to chat to you soon, take care and keep us all updated
Shirley xxx
|
|
|
Post by claireyd22 on May 12, 2007 11:00:33 GMT
Hi Lucy. A big welcome to you. I felt very touched by your story so far and would just like to congratulate you on your pregnancy and the fact that you are being so strong about everything that has been thrown at you. You have took the time to find out about ds and are giving your precious baby the chance she deserves. I hope we can help put you at ease about what you are facing. We didn't know our son George had downs until after he was born last June. At first I thought I wish I had known so that we could have been a bit more prepared and not spent the first few days and weeks feeling so distraught. Now though I think I'm glad I didn't know incase I had chosen not to have him. I love him so much and he brings us all so much happiness, he's gorgeous (not that I'm biased or anything!!). I hope that your scan goes well for you and Jasmine but if it does detect any health problems then I'm sure they can be corrected. George was born with a heart condition (complete AVSD), this was only picked up when he was 3 months old and initially they said he wouldn't need surgery until he was 2 0r 3 but they would scan him again 3 months later. When we went back for that scan they found it was worse than they first thought and he had to have an op in the next few weeks. He ended up having open heart surgery 2 weeks later, aged 6 months. He was only in hospital for 9 days! So you were right when you said that Jasmine is already a little fighter, our kids are amazing little things and with you behind her Jasmine will overcome whatever comes her way. Have a good look around this site - especially the pictures and videos, they're great. One of the things I was told when George was first born was that 'firstly he's a baby' and second he has downs. That is so true and after a while you don't really think about the ds. George is managing to accomplish the things that babies do, just a little slower, but that just makes you even more proud when he does it. Anyway, better give someone else a chance - and you thought you could talk!! Lovely to hear from you. Keep us posted about your scan, and feel free to ask any questions. Take care, love Claire xx
|
|
|
Post by Rilith on May 12, 2007 13:05:32 GMT
Awwwww So glad you could join us hunni Just wanted to say of there is anything you want to ask go ahead, even if it seems silly. If its important to you, its important to us Hope you get as much help and enjoyment out of this site as I have
|
|
|
Post by pinktorontogirl on May 12, 2007 14:47:11 GMT
Congratulations on the pregnancy Lucy! I'm so pleased you have joined the site and hope you get loads of love and support here, we are always here for you. Good luck for Tuesday xxxxxx
|
|
|
Post by lisajg on May 12, 2007 17:31:35 GMT
Hi Lucy
I'm new to the site too but just wanted to add my best wishes and support. I found out my gorgeous little boy (who is now 3 years old) had down syndrome during the pregnancy and I was encouraged to have a termination so I understand what you're going through. I found the information provided to me was pretty limited and biased at the time (in a negative way), so I hope you're managing to get lots of good advice and help (finding this site will definitely help). I know you're facing a tough time at the moment so I hope we can help reassure you. Sending you lots of hugs xx
|
|
|
Post by Daniella on May 12, 2007 18:39:18 GMT
hello and welcome, i read your post on bounty and i really felt for you, still do, as people have said, it is your decision only and it can be very confusing hearing people's opinions on what you should do for the best, but only you know what is best for you both, it is a very hard decision to make. we are all here to support you and you can ask us anything any time of the day.. we will always reply to messages when i was pregnant we had the barts (triple) tests and we were 1 in 130, we decided against any other tests and all the scans we had (we'd had more than usual in a pregnancy) didnt show any problems, so we were unaware. when i gave birth, it was a shock and we had spent the first few months coming to terms with it all, it may not seem it to you at the moment but i see you as lucky - you can prepare yourself better for when jasmine arrives, you will have a clear head and be able to enjoy your baby straight away joshua has no health problems as of yet, he has no heart problems, no bowel problems and he is coming on great the only thing is he has terrible temper tantrums, but you show me a toddler who doesnt, downs or otherwise ignore all the people who show you sympathy when you tell them that you have a baby with downs, when they say 'oh, im sorry' come back to them with 'why? i am not!' it will throw them and as soon as they realise that you are okay with it, they will get a better feeling of how to act around you, tell people in work, if not now, just before you go on maternity leave, that way, everyone will know when you come back to work and they will probably be very supportive, i know mine and adams colleagues were good luck for tuesday and i am sure everything will be okay, whatever happens we will all be here for you daniella, adam and joshua
|
|
|
Post by pinkshell1110 on May 12, 2007 19:28:32 GMT
hi there lucy congratulations on your pregnancy hun and may i say what a beautiful name you have picked for your daughter (i am biased i have a little girl aged 21 months called jasmin) you sound such a strong character and if jasmine inherits that i am sure you will both do fine. We didn't find out our little boy charlie had DS until he was 8 weeks old which was incredibly hard but even if we had known before hand it wouldn't have mattered,he has had a few medical problems including 2 heart surgeries, he was 11 weeks prem and weighed 1lb 14 ounces and as you can imagine was so precious too us .He has enriched my whole families life so much and brings so much love and happiness to us all, i also have 4 teenagers aging from 15 -21 and charlie has changed them so much just by making them more accepting of children and adults with disabilities. Anyway you are not on your own hunni and if there is anything at all you need to know or just just need a rant we will all be here for you . I have recently been reading a magazine and would like to share a passage that a lady wrote individuals with DS are all very special people.If i could give one gift to the world it would be that everyone could know at least one person with DS.To be lucky enough to be connected to a person with DS i think makes you a better person.They open your eyes and teach you so much about life and about appreciating and taking pleasure in the simle things.They truly teach you how to live xxxxxxxxx
|
|
|
Post by sarahncharlimai on May 12, 2007 20:34:05 GMT
hi lucy, congratulations hun, glad you found this lovely site. We knew that our beautiful daughter has ds whilst i was pg (amnio) we also found out that she has a heart condition called complete avsd with a small vsd, but she has not had surgery yet to correct this. Charli has taught us so much, she brightens up the room when she smiles and every little milestone we treasure, Charli is the best thing that has ever happened to us and im sure you will think the same when little jasmin arrives. Best of luck for Tuesday. Lots of love sent your way x x
|
|
|
Post by lizzymd² on May 12, 2007 22:55:43 GMT
how did i miss this? Just read your story on bounty, I posted on your high risk post.
If you have any questions at all just ask, even if you think they're stupid, we've all been there. Feel free to pm us if you think they're awkward or embarassing. We were all naive at one time maybe ignorant as well.
What age are you?
Good luck on tuesday, let us know how you get on
|
|
|
Post by max on May 15, 2007 13:45:34 GMT
just a quick hi from me and my little boy - my computer keeps shutting down at the mo! CONGRATS on your little girl - all the best for the scan. My baby Caleb is just a heap of gorgeousness who is the size of a small hippo with no health problems at all - he's fab! My health visitor suggested he was used as an advertising campaign for Downs - she's very anti abortion just because of Downs. Can't wait to get to know you some more and one day see those first pics of Jasmine xxxxx
|
|
|
Post by claireyd22 on May 15, 2007 20:03:28 GMT
Max, I love the way you described Caleb, really made me smile x
|
|
|
Post by tina79 on May 15, 2007 20:06:46 GMT
Hi Lucy,
Congratulations on your pregnancy and welcome to the site. My little boy Brodie is nearly 3 and has ds although we didn't find out until after he was born. I only found this site a couple of months ago and wish i have found it sooner, anyway look forward to getting to know you better (and little Jasmine too when she arrives!). Take Care, Tina x x
|
|
|
Post by Jojo on May 16, 2007 7:54:18 GMT
Hi Lucy, I had been following your story on Bounty, I'm so glad you joined the site.
Look forward to getting to know you and little Jasmine.xxx
|
|
|
Post by njcorbett on May 17, 2007 20:27:27 GMT
Hi Lucy,
Congrats on the pregnancy and hello from us all. We have a little girl with DS called Lucy. She's 2 now and we wouldn't change her for all the world. We didn't find out until after Lucy was born. She's had major surgery to correct a complete AVSD and some feeding problems, but she's great now. Jasmine will be a complete joy to you. I hope it all goes well on Tuesday. Take care.
Nicola & Lucy
|
|
|
Post by jenjane1 on May 31, 2007 11:23:06 GMT
Hi Lucy and congratulations on your pregnancy! My name is Jen and I am mum to Alex who is 21 months and has DS. I am also 19 weeks pregnant, due October.
Gosh, what a lot you have had to go through so far. I found out that Alex had DS after he was born. I sometime wish I had known beforehand so that I could have been prepared more, and I can certainly relate to the grieving process. I was told 20 minutes after he was born in a very cold, matter of fact manner. I spent the first 3 months of Alex's life grieving the child that should have been. I loved Alex with all my heart but would get so upset at the slightest thing. I wish I had had a crystal ball then to see what a little treasure he is. He is just like any other toddler, a cheeky monkey who thinks he can get away with anything. He is such a pleasure and when he reaches thoses milestones that other mums take for granted, my heart could just burst with pride! Having a child with DS is not easy, you have various therapists, doctors etc that you will need to see, but it is worth every minute. I am the luckiest mum in the world to have him! P.S I will get round to posting pictures one of these days!
|
|
|
Post by wiccababe on Jun 1, 2007 22:03:32 GMT
Hi sweetheart, I'm a kind of honorary member here - none of my children have DS, 2 of them have other special needs though.
I just wanted to say Hi because I can relate to your situation at the moment. I had pelvic x-rays before I realised I was pregnant with my 3rd child, and nobody could give us a straight answer as to whether it would have harmed the baby or not. We went through weeks of tears and heartache and thankfully we finally talked to a woman who was in a position to give us accurate info and reassurance.
I had Faith Lauren in July last year and she is in perfect health.
Everyone on here is very friendly and supportive and if they can help you they will - and certainly without judging you.
Good luck sweetheart xxx
|
|