At least I was informed before she came along. There was a worry if she was going to be taken straight into the incubaters when she was born, but she is such a toughy I was lucky to have her with me on the ward.
We found out within an hour of birth. Lucy was sent to Yorkhill hospital in Glasgow by neo-natal ambulance and I had to wait 4 hours before they could get an ambulance to move me after my c-section. They had wanted to send Lucy to Edinburgh and leave me in the Borders General 1hr and 15mins away. I soon told them that wasn't going to happen and luckily my midwife agreed. Lucy was in PICU in Glasgow for 5 days and then in SCBU in Borders for more than 2 weeks more, at least she was nearer home and we could get visitors.
Hi. As I mentioned in a different thread, we only found out about 12 days ago that Thomas had downs and AVSD!! I had only phoned the docs to ask if it was ok to give him some calpol as I thought he had a bit of a temp. Out of hours doc couldn't find anything wrong but reffered us to A&E cos he though Thomas was a bit floppy and it spiralled from there. 2 total bomb shells in 1 day. Thomas is 12 weeks old today!
No one pickedup anything! He's had all his checks and everything too and seen the health visitor every 2 weeks since birth. The downs has been confirmed by the quick blood test but we are still waiting for the detailed test results.
Thanks girls. It really was a massive shock. I'm still finding it a bit hard to come to terms with. Thomas should be having his operation within the next couple of months and I can't quite get my head around the fact that he has to go through something so major at his age. People still say to us that they can't tell he has Downs including my GP and my health visitor! Maybe thats a good thing? Thomas is doing really well developmentally. He can follow you around the room with his eyes, he laughs, gurgles and smiles constantly and he's even started to bat at a few toys now and then. The only thing he can't do yet is hold his head up. He's really floppy although he us trying, bless him. I'm still unsure about the whole milestones thing tho. I don't know what I should expect with him. Also, his weight is a bit of a concern to me as he is now 12 weeks old and only 10lbs 14oz. Then again, maybe that is ok in a baby with heart problems?? xx
hi vickia all the dr's and other people said it was hard to see in brandon and still say it is now.i wouldn't worry about the milestone thing just let him progress at his rate i did with brandon and with development he is on the level with other 4 year olds in some things.the dr said he probably wouldn't walk before he was 2 and he was walking at 17 months.his weight could be his heart problem but has he had a thyroid test yet?
hi he is gorgeous my little man was diagnosed at 8 weeks old and he only weighed 1lb 14 ounces, he also had two holes in his heart and needed his first surgery at 8 weeks (this is what led to the test for Downs) at his first surgery he only weighed 2lb 13 ounces . When he had his second surgery at 9 months he only weighed 9lb !!!!.He is now 2 and a half and still only weighs a little over 19lb now .The weight issue was very scary for me too but i have been constantly reassured by everyone. Feeding is a massive issue i think for newborns but trust me it does get better eventually.As for the milestones ,i dont know about anyone else i just haven't worried he will get there eventually and when he does it is more special than you can imagine and he and you will be so proud .Good luck michelle
We found out about Graces AVSD at 35 weeks. Nothing was discovered at my routine scans other than there was a querey re one of her kidneys. We had that checked 2 weeks later and they said everything was fine. They seemed to really check on her heart to but nothing was noticed. Then, we went for a private 3d scan at 30 weeks. The radiographer immediatley noticed something not right with the heart but thought that it was fluid. She wrote us a letter for my doctor and recommended that we be referred to a Dr in the Royal hospital in belfast. We then had to wait 4 weeks to see the Dr and he told us what he thought he seen but wanted to rescan me the following week. When we went back the next week he rescaned her heart and then broke the news. After listening to him talk all about the AVSD and the implications of it he then told us that there was a 60% chance that our baby would have downs syndrome. As you can imagine we were devastated. It was too late to have any tests as there was not enough fluid around the baby, we would have liked to have know as we didnt want to spoil this big occasion in our lives wondering if the downs was present . So we had to just wait until the birth. She wasnt due until the 29th November but decided to put in an early appearance on the 13th. She was delivered by c-section due to her being breech. Immediatley after she was born the Paeds were there and they took her stright to NICU where she spent the first night. After that she was transferred to SCBU where she stayed for 3 weeks until she was able to manage all her bottles.
Sorry If I have rambled on a bit, think I got carried away there. am just so glad to have that time over us and now just waiting for her repair to be done before I start relaxing