Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 My daughter was IUGR, she was full term but only weighed 4 pounds! The doctors told me at a very early stage in my pregnancy that she was going to be little! They said it was caused from placenta creada, thats when my placenta grew into my uteris. There was nothing they could have done to get her to become bigger! She is now almost 10 and still pretty tiny.. Back when she was little RSS was'nt even thaught of around here with doctors, so i have faught all her life trying to get her to gain weight and trying to find clothes that fit! Now she has devoloped more medical problems and it's a whole new battle.. She has a severe cause of scoliosis, terrible, terrible migraines and is now also ADD and is doing terrible in school.. So unfortunantly my battle is far from being over.. Thanks Jackie mom of kelsey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 Dayna, I just read your post and it is eerily familiar to my own pregnancy with my 2-year old son, Christian. All along the drs told me there was something wrong. They kept measuring through ultrasounds and he just wasn't doing well. My amniotic fluid was low also. And the placenta had blood clots which was decreasing the blood fluid to him. I also had toxemia which is why at 33 weeks they decided to induce me. Christian was born at 1:27 am weighing 2 lbs. 1 oz. and 13 in. long. His stay in the hospital was about six weeks. The drs, at the time, diagnosed him IUGR. It wasn't until this past February that we got our diagnosis of RSS from a geneticist. Hope this helps. Mom to , 5, and Christian, 2, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 When I was in my 5th month with my daughter my doctor told me she wasn't growing and might never grow big enogh to survive. I had hardley any amniotic fluid. They also did an amnio and her chromosomes were normal. She did continue to grow though very slowly and he diagnosed her with IUGR due to placental insuffiency. He induced my labor at 35 weeks when they estimated her weight to be 3lbs12oz. I had been given steroids to promote lung maturity. I delivered naturally and she weighed 2lbs 8oz. Her lungs were great, but she was so very tiny and fragile looking. We called her our miracle baby and took her home thirty days later. It is only now after she has made no catch up with her peers after nearly a year that she was diagnosed with RSS. I am curious what others pregnancy and doctors said and were like. Please post with your story or email me privately if you prefer. I'm just curious what other doctors did in similiar situations. Or if there were similiar situations. Thanks!!! Dayna, Mom to Alyssa 11/13/01 now 12lbs 2oz. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 Dayna, Welcome to the group! During my first sonogram (at 3 months) I was told that my baby was not normal. When the doctor explained he said that Colby was IUGR in that his head was receiving all the nutrients and his body was suffering. I believe his legs were 3 weeks behind and his abdomen another 3 weeks for the size they were supposed to be. I had 4 additional sonograms with basically the same results. The last one ended with a plan to c-section. The c-section was so that Colby did not die during natural childbirth due to stress. He was delivered at 36.5 weeks (once they confirmed that his lungs were developed with an amniocentesis), at 3:12 in the afternoon, weighing in at 3 pounds 12 oz. and 16 1/4 inches long. At birth, they still did not know what was wrong. He came home 3.5 weeks later (a day before his original due date) at 4.5 pounds. Around 6 months he was diagnosed by his pediatrician with RSS after I pointed out his asymmetry to the ped. Regards, mom to Colby (RSS, 11 years old, 52.4 " , 62#, Periactin) Any other IUGR babies When I was in my 5th month with my daughter my doctor told me she wasn't growing and might never grow big enogh to survive. I had hardley any amniotic fluid. They also did an amnio and her chromosomes were normal. She did continue to grow though very slowly and he diagnosed her with IUGR due to placental insuffiency. He induced my labor at 35 weeks when they estimated her weight to be 3lbs12oz. I had been given steroids to promote lung maturity. I delivered naturally and she weighed 2lbs 8oz. Her lungs were great, but she was so very tiny and fragile looking. We called her our miracle baby and took her home thirty days later. It is only now after she has made no catch up with her peers after nearly a year that she was diagnosed with RSS. I am curious what others pregnancy and doctors said and were like. Please post with your story or email me privately if you prefer. I'm just curious what other doctors did in similiar situations. Or if there were similiar situations. Thanks!!! Dayna, Mom to Alyssa 11/13/01 now 12lbs 2oz. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 My case was very much the same...they estimated Quetzie weighed 3.10, but when she was delivered at 37 weeks, she was 2.14 lbs and 14 inches long. we took her home 5 weeks later...we didn't get an RSS diagnosis until several months later! Quetzie is now 18 mos..and 13.5 lbs! Glad you found this group...they're amazing!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 , Thank you for sharing. Did you have any trouble wih your amnio fluid? Why did they c section you before 40 weeks? I really appreciate your response!!! Thanks so much! Dayna Any other IUGR babies When I was in my 5th month with my daughter my doctor told me she wasn't growing and might never grow big enogh to survive. I had hardley any amniotic fluid. They also did an amnio and her chromosomes were normal. She did continue to grow though very slowly and he diagnosed her with IUGR due to placental insuffiency. He induced my labor at 35 weeks when they estimated her weight to be 3lbs12oz. I had been given steroids to promote lung maturity. I delivered naturally and she weighed 2lbs 8oz. Her lungs were great, but she was so very tiny and fragile looking. We called her our miracle baby and took her home thirty days later. It is only now after she has made no catch up with her peers after nearly a year that she was diagnosed with RSS. I am curious what others pregnancy and doctors said and were like. Please post with your story or email me privately if you prefer. I'm just curious what other doctors did in similiar situations. Or if there were similiar situations. Thanks!!! Dayna, Mom to Alyssa 11/13/01 now 12lbs 2oz. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 Dayna, They only gave me the amnio to see if Colby's lungs were developed. The reason I had the c-section before is because they were afraid that Colby would die because he was not gaining weight. Once the lungs were okayed, they saw no reason for him to stay inside since they felt he would get be better able to treat him outside of the womb. Regards, mom to Colby (RSS, 11 years old, 52.4 " , 62#, Periactin) Re: Any other IUGR babies , Thank you for sharing. Did you have any trouble wih your amnio fluid? Why did they c section you before 40 weeks? I really appreciate your response!!! Thanks so much! Dayna Any other IUGR babies When I was in my 5th month with my daughter my doctor told me she wasn't growing and might never grow big enogh to survive. I had hardley any amniotic fluid. They also did an amnio and her chromosomes were normal. She did continue to grow though very slowly and he diagnosed her with IUGR due to placental insuffiency. He induced my labor at 35 weeks when they estimated her weight to be 3lbs12oz. I had been given steroids to promote lung maturity. I delivered naturally and she weighed 2lbs 8oz. Her lungs were great, but she was so very tiny and fragile looking. We called her our miracle baby and took her home thirty days later. It is only now after she has made no catch up with her peers after nearly a year that she was diagnosed with RSS. I am curious what others pregnancy and doctors said and were like. Please post with your story or email me privately if you prefer. I'm just curious what other doctors did in similiar situations. Or if there were similiar situations. Thanks!!! Dayna, Mom to Alyssa 11/13/01 now 12lbs 2oz. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 Hi, I was 25 weeks pregnant with my twins when they discovered Colin's fluid was low and he was IUGR. I was put on complete bedrest until 37 weeks and they were delivered via c-section. He was 4.3lbs and his twin sister 6.8lbs. Forunately no NICU time, but he was under 4 lbs. when we brought him home! Colin was diagnosed with RSS at 6 mo. of age by a geneticist we saw since he wasn't eating or growing. Colin (RSS) and Hayden - 12/6/00 > When I was in my 5th month with my daughter my doctor told me she wasn't growing and might never grow big enogh to survive. I had hardley any amniotic fluid. They also did an amnio and her chromosomes were normal. She did continue to grow though very slowly and he diagnosed her with IUGR due to placental insuffiency. He induced my labor at 35 weeks when they estimated her weight to be 3lbs12oz. I had been given steroids to promote lung maturity. I delivered naturally and she weighed 2lbs 8oz. Her lungs were great, but she was so very tiny and fragile looking. We called her our miracle baby and took her home thirty days later. > > It is only now after she has made no catch up with her peers after nearly a year that she was diagnosed with RSS. I am curious what others pregnancy and doctors said and were like. > > Please post with your story or email me privately if you prefer. I'm just curious what other doctors did in similiar situations. Or if there were similiar situations. Thanks!!! > > Dayna, Mom to Alyssa 11/13/01 now 12lbs 2oz. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 Dayna, when i read the pregnancy stories,i think that all of us had the same story... i was diagnosed also with IUGR with no real reason,suggested to take " clexan " injection for the last 3 months ,maybe this will help, but off course it didnt change the situation... my doughter MAI was borned also in c-section at 36 weaks (not to put her under stress)-1475 g-40 cm. the only different thing that MAI was diagnosed with rss-2 hours after delivery!and i think that with all the shock we were in-we were very lucky to know from the begining what we are going to deal with ,more or less. MAI now is 10 months and all the information i got is through MAGIC and this list.thank you all. tik > >Reply-To: RSS-Support >To: RSS-Support >Subject: Any other IUGR babies >Date: Mon, 04 Nov 2002 13:21:24 -0600 > >When I was in my 5th month with my daughter my doctor told me she wasn't >growing and might never grow big enogh to survive. I had hardley any >amniotic fluid. They also did an amnio and her chromosomes were normal. >She did continue to grow though very slowly and he diagnosed her with IUGR >due to placental insuffiency. He induced my labor at 35 weeks when they >estimated her weight to be 3lbs12oz. I had been given steroids to promote >lung maturity. I delivered naturally and she weighed 2lbs 8oz. Her lungs >were great, but she was so very tiny and fragile looking. We called her >our miracle baby and took her home thirty days later. > >It is only now after she has made no catch up with her peers after nearly a >year that she was diagnosed with RSS. I am curious what others pregnancy >and doctors said and were like. > >Please post with your story or email me privately if you prefer. I'm just >curious what other doctors did in similiar situations. Or if there were >similiar situations. Thanks!!! > >Dayna, Mom to Alyssa 11/13/01 now 12lbs 2oz. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 Wow! That is my exact story. I was 20 weeks pregnant when the doctors found out that Kaylle was not growing. I was sent to high risk doctors who could not figure out why Kaylee was not growing and she was measuring asymmetrical with the ultrasound. They also thought I had an insufficient placenta. They were concerned that Kaylee would not survive the pregnancy. When I was 36 weeks her amniotic fluid was low and they induced me. I was given steriods to help her lung development. Kaylee was 3 lbs 2 oz and her lungs were great. She was in the NICU for 3 1/2 weeks. We also considered her our miracle baby. She was diagnosed IUGR and SGA. It was not until I brought her to an endocrynologist at 3 months that we found out she had Silver Syndrome. I only brought her to an endocrinologist because one doctor said to me in passing that maybe she was not growing because it was hormonal ( a docotor who I had never met and did not know Kaylee). I asked who we would see for that and he said a endocrinologist. If it was not for that doctor who to this day I don't know we may not have had a diagnosis so soon. , Mom to Kaylee RSS 3/21/01 now 12lbs exactly (g-tube and periactin) Also mom to non-RSS 3yrs, but on periactin as well. > When I was in my 5th month with my daughter my doctor told me she wasn't growing and might never grow big enogh to survive. I had hardley any amniotic fluid. They also did an amnio and her chromosomes were normal. She did continue to grow though very slowly and he diagnosed her with IUGR due to placental insuffiency. He induced my labor at 35 weeks when they estimated her weight to be 3lbs12oz. I had been given steroids to promote lung maturity. I delivered naturally and she weighed 2lbs 8oz. Her lungs were great, but she was so very tiny and fragile looking. We called her our miracle baby and took her home thirty days later. > > It is only now after she has made no catch up with her peers after nearly a year that she was diagnosed with RSS. I am curious what others pregnancy and doctors said and were like. > > Please post with your story or email me privately if you prefer. I'm just curious what other doctors did in similiar situations. Or if there were similiar situations. Thanks!!! > > Dayna, Mom to Alyssa 11/13/01 now 12lbs 2oz. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 Now that is the closest story to mine I've heard. I did the bedrest from 24 weeks on myself. I wonder if the low fluid is something that happens frequently with IUGR RSS babies?? Lucky for you no NICU time. Alyssa went home at 3lbs 8oz. The " Reccomended safe time to be in a car seat " . Thanks!! dayna Re: Any other IUGR babies Hi, I was 25 weeks pregnant with my twins when they discovered Colin's fluid was low and he was IUGR. I was put on complete bedrest until 37 weeks and they were delivered via c-section. He was 4.3lbs and his twin sister 6.8lbs. Forunately no NICU time, but he was under 4 lbs. when we brought him home! Colin was diagnosed with RSS at 6 mo. of age by a geneticist we saw since he wasn't eating or growing. Colin (RSS) and Hayden - 12/6/00 > When I was in my 5th month with my daughter my doctor told me she wasn't growing and might never grow big enogh to survive. I had hardley any amniotic fluid. They also did an amnio and her chromosomes were normal. She did continue to grow though very slowly and he diagnosed her with IUGR due to placental insuffiency. He induced my labor at 35 weeks when they estimated her weight to be 3lbs12oz. I had been given steroids to promote lung maturity. I delivered naturally and she weighed 2lbs 8oz. Her lungs were great, but she was so very tiny and fragile looking. We called her our miracle baby and took her home thirty days later. > > It is only now after she has made no catch up with her peers after nearly a year that she was diagnosed with RSS. I am curious what others pregnancy and doctors said and were like. > > Please post with your story or email me privately if you prefer. I'm just curious what other doctors did in similiar situations. Or if there were similiar situations. Thanks!!! > > Dayna, Mom to Alyssa 11/13/01 now 12lbs 2oz. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 ~ Thanks so much for your responses. It appears as though our doctors were of like minds! Dayna Any other IUGR babies When I was in my 5th month with my daughter my doctor told me she wasn't growing and might never grow big enogh to survive. I had hardley any amniotic fluid. They also did an amnio and her chromosomes were normal. She did continue to grow though very slowly and he diagnosed her with IUGR due to placental insuffiency. He induced my labor at 35 weeks when they estimated her weight to be 3lbs12oz. I had been given steroids to promote lung maturity. I delivered naturally and she weighed 2lbs 8oz. Her lungs were great, but she was so very tiny and fragile looking. We called her our miracle baby and took her home thirty days later. It is only now after she has made no catch up with her peers after nearly a year that she was diagnosed with RSS. I am curious what others pregnancy and doctors said and were like. Please post with your story or email me privately if you prefer. I'm just curious what other doctors did in similiar situations. Or if there were similiar situations. Thanks!!! Dayna, Mom to Alyssa 11/13/01 now 12lbs 2oz. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 I cannot tell you how wonderful it has been to hear all of your similiar stories. I feel so good knowing we are on the right road and though it may get a little rough. . . we are not alone. Thanks so much for sharing your stories with me. I always thought our doctor was wonderful and now I know he is. Thanks again! Dayna, mom to Alyssa 11-13-01, 12lbs 2oz. Re: Any other IUGR babies Wow! That is my exact story. I was 20 weeks pregnant when the doctors found out that Kaylle was not growing. I was sent to high risk doctors who could not figure out why Kaylee was not growing and she was measuring asymmetrical with the ultrasound. They also thought I had an insufficient placenta. They were concerned that Kaylee would not survive the pregnancy. When I was 36 weeks her amniotic fluid was low and they induced me. I was given steriods to help her lung development. Kaylee was 3 lbs 2 oz and her lungs were great. She was in the NICU for 3 1/2 weeks. We also considered her our miracle baby. She was diagnosed IUGR and SGA. It was not until I brought her to an endocrynologist at 3 months that we found out she had Silver Syndrome. I only brought her to an endocrinologist because one doctor said to me in passing that maybe she was not growing because it was hormonal ( a docotor who I had never met and did not know Kaylee). I asked who we would see for that and he said a endocrinologist. If it was not for that doctor who to this day I don't know we may not have had a diagnosis so soon. , Mom to Kaylee RSS 3/21/01 now 12lbs exactly (g-tube and periactin) Also mom to non-RSS 3yrs, but on periactin as well. > When I was in my 5th month with my daughter my doctor told me she wasn't growing and might never grow big enogh to survive. I had hardley any amniotic fluid. They also did an amnio and her chromosomes were normal. She did continue to grow though very slowly and he diagnosed her with IUGR due to placental insuffiency. He induced my labor at 35 weeks when they estimated her weight to be 3lbs12oz. I had been given steroids to promote lung maturity. I delivered naturally and she weighed 2lbs 8oz. Her lungs were great, but she was so very tiny and fragile looking. We called her our miracle baby and took her home thirty days later. > > It is only now after she has made no catch up with her peers after nearly a year that she was diagnosed with RSS. I am curious what others pregnancy and doctors said and were like. > > Please post with your story or email me privately if you prefer. I'm just curious what other doctors did in similiar situations. Or if there were similiar situations. Thanks!!! > > Dayna, Mom to Alyssa 11/13/01 now 12lbs 2oz. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 Hi Dayna, Your story is almost the same as mine!! At the 20 week anomaly scan, the sonographer said that 's head was normal size, but her abdomen was small in comparison and that the level of amniotic fuid was low, so to come back in 4 weeks time. We did and the consultant said she was still growing asymmetrically and was IUGR, and advised us to have an amnio and blood tests for a virus. As both of these came back negative, they said it must be due to placental insufficiency, and that they would do growth scans every month. To reassure me they also did CTG's every week, as did not move much at all in the womb. By week 34 's growth had pretty much stopped, so they decided to deliver her by c-section (they said that a natural birth would be too stressful for her, especially as she was small and in breech position!) and gave me steroids to help her lungs. On 28 March 2002, at 15:25 was delivered. I was so chuffed, as despite have had an amnio, and having had over 15 scans in all, we had never asked the sex, so it was a lovely surprise to be a little girl. She weighed 1.46kg (3lbs 3oz) and breathed on her own, but was in SCBU for 5 weeks to monitor growth and feeding. When we brought her home on her due date (4 May) she weighed 3lbs 12oz. Our consultant sonographer had already mentioned something to us when she was in the womb about a rare growth disorder, and was very excited to see that she had incurved little fingers. However, as she was so small, the geneticists wanted to wait until she was bigger before offering a diagnosis. Sure enough, when we took her along at 5 months old, having had no catch-up growth and displaying a lot of characteristics of RSS, they gave her a positive diagnosis. We seem to be lucky so far as eats quite well and is still gaining weight along her own curve (she's now 7 months and weighs 9lbs 8oz). However, she has just had a cold and her appetite has dropped right off, so I am hoping that it comes back. She's due to have have blood sugar levels tested later this month (for suspected hypoglycaemia) and we are waiting to see an endricronologist. It's been a big support to find this board, and learn more about other people's experiences. Enough from me, Rae (mum to , 7 mos, 9lbs 8oz, RSS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 My pregnancy was also very similar to all these stories. They found I had low amniotic fluid when I was about 23 weeks along. I started drinking about 6 liters of water a day, which helped my amniotic fluid stay just on the lower edge of normal. (Any time I drank less my fluid would drop). However, nobody was too alarmed because my fluid was low with my first daughter and other than being a bit slender (6lb 10oz, 21 inches) she was fine when she was born. They kept monitoring (weekly sonogram and non-stress) and noticed that her stomach seemed a bit small. IUGR due to placental insufficiency they said, but her head size was well within normal. I was on modified bed-rest (could go to work, but only sit at my desk, no lifting, no exercise). They gave me steroids wanted to do a C-section at 37 weeks, but I refused as she still seemed to be growing, just a little slowly. They did a C-section at 39 weeks when my amniotic fluid very suddenly dropped even lower. She was born 4lb. 10oz., 18 " long, but had radically low blood sugar, and spent 6 days in the NICU. What a funny looking baby she was (but really cute). It seemed like nearly half her weight was in her head. Her body was so tiny, and even her face was tiny and smooshed up and seemed to be about half the size of the face of other baby's. She is now hovering in the 40-50th percentile for length, 75th percentile for head size, and 5th percentile for weight. Her appetite has been fluctuating a bit lately, but she has two teeth coming in, so that's not surprising. And her face seems to be growing into her head a little, not quite so disproportionate, but part of that is the fact that she is finally getting some hair to cover that big head. It seems like her teeth are taking a LOT longer to come in that Dorothea's did. They've been on the edge of breaking through for about 6 weeks now. Is it typical for the teeth of RSS kids to take longer coming in? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 I'm not sure, but Kaylee's first tooth did not come in until she was 15 months old. We couldn't believe how long it took. Now she is working on her molars. mom to Kaylee RSS 19 months and 12 lbs > My pregnancy was also very similar to all these stories. They found I > had low amniotic fluid when I was about 23 weeks along. I started > drinking about 6 liters of water a day, which helped my amniotic fluid > stay just on the lower edge of normal. (Any time I drank less my > fluid would drop). However, nobody was too alarmed because my fluid > was low with my first daughter and other than being a bit slender (6lb > 10oz, 21 inches) she was fine when she was born. > > They kept monitoring (weekly sonogram and non-stress) and noticed that > her stomach seemed a bit small. IUGR due to placental insufficiency > they said, but her head size was well within normal. I was on > modified bed-rest (could go to work, but only sit at my desk, no > lifting, no exercise). They gave me steroids wanted to do a C- section > at 37 weeks, but I refused as she still seemed to be growing, just a > little slowly. They did a C-section at 39 weeks when my amniotic > fluid very suddenly dropped even lower. She was born 4lb. 10oz., 18 " > long, but had radically low blood sugar, and spent 6 days in the NICU. > What a funny looking baby she was (but really cute). It seemed like > nearly half her weight was in her head. Her body was so tiny, and > even her face was tiny and smooshed up and seemed to be about half the > size of the face of other baby's. > > She is now hovering in the 40-50th percentile for length, 75th > percentile for head size, and 5th percentile for weight. Her appetite > has been fluctuating a bit lately, but she has two teeth coming in, so > that's not surprising. And her face seems to be growing into her head > a little, not quite so disproportionate, but part of that is the fact > that she is finally getting some hair to cover that big head. > > It seems like her teeth are taking a LOT longer to come in that > Dorothea's did. They've been on the edge of breaking through for > about 6 weeks now. Is it typical for the teeth of RSS kids to take > longer coming in? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 Hi Dayna I think the people who responded felt a connection with your experiences. But I thought I'd add my slightly different ones. My 10 year old RSS son is my second child. My 13 year old daughter, is tall and tall and tall!!! When I was pregnant with Adam no one said boo to me about him (a while ago when my doctor that delivered him retired, I found a sonogram that indicated a discrepancy between his actual size and his due date, and his head size matched the due date, but not the body...this was never shared with me). At 32 weeks I had spotting and was hospitalized on bed rest for a week. Nothing more happened. He weighed 5 lbs at that point. He was born normally at 38 weeks (same as my daughter) and weighed 5 lbs 3 oz. Basically didn't grow after that incident. No problems were found with my placenta (no tears, no explanation to the bleeding....and I made them look MANY times!!!! LOL) and he was diagnosed at birth as small for dates. That was all that was said to me until he was over 2 and I was at the doc's for another issue (unrelated to growth) and the doc hit on possible RSS and it's been a circle train of doctors ever since. So go figure that one! Just thought I'd share. And welcome to the group. This is the most amazing place to be. Debby Re: Any other IUGR babies > > > Wow! That is my exact story. I was 20 weeks pregnant when the > doctors found out that Kaylle was not growing. I was sent to high > risk doctors who could not figure out why Kaylee was not growing and > she was measuring asymmetrical with the ultrasound. They also > thought I had an insufficient placenta. They were concerned that > Kaylee would not survive the pregnancy. When I was 36 weeks her > amniotic fluid was low and they induced me. I was given steriods to > help her lung development. Kaylee was 3 lbs 2 oz and her lungs were > great. She was in the NICU for 3 1/2 weeks. We also considered her > our miracle baby. She was diagnosed IUGR and SGA. It was not until > I brought her to an endocrynologist at 3 months that we found out she > had Silver Syndrome. I only brought her to an > endocrinologist because one doctor said to me in passing that maybe > she was not growing because it was hormonal ( a docotor who I had > never met and did not know Kaylee). I asked who we would see for > that and he said a endocrinologist. If it was not for that doctor > who to this day I don't know we may not have had a diagnosis so soon. > > , Mom to Kaylee RSS 3/21/01 now 12lbs exactly (g-tube and > periactin) Also mom to non-RSS 3yrs, but on periactin as well. > > > > > When I was in my 5th month with my daughter my doctor told me she > wasn't growing and might never grow big enogh to survive. I had > hardley any amniotic fluid. They also did an amnio and her > chromosomes were normal. She did continue to grow though very slowly > and he diagnosed her with IUGR due to placental insuffiency. He > induced my labor at 35 weeks when they estimated her weight to be > 3lbs12oz. I had been given steroids to promote lung maturity. I > delivered naturally and she weighed 2lbs 8oz. Her lungs were great, > but she was so very tiny and fragile looking. We called her our > miracle baby and took her home thirty days later. > > > > It is only now after she has made no catch up with her peers after > nearly a year that she was diagnosed with RSS. I am curious what > others pregnancy and doctors said and were like. > > > > Please post with your story or email me privately if you prefer. > I'm just curious what other doctors did in similiar situations. Or > if there were similiar situations. Thanks!!! > > > > Dayna, Mom to Alyssa 11/13/01 now 12lbs 2oz. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 Rae~ Wow! Congrats on such a miracle baby. Your story is so similiar. I find it so ironic that you mention the curved 5 th finger. Alyssa has this as well, in addtion to the small jaw and broad forehead. (We posted a photo in the photos). The funny thing is all of those characteristics are hereditary on my husbands side. You wouldn't believe how much she looks like her daddy and her grandpa. Even the curved finger!! That's why it never even occurred to us, that it indicated anything. I thought it was pretty odd that none of her peds ever noticed it myself. (We went through 3 before we found one I liked.) They saw her at least 2 times per month since her birth. Oh well, it probably wouldn't have changed anything anyway! Thanks for sharing! Dayna, mom to Alyssa 11-13-01, 12lbs 2oz Re: Any other IUGR babies Hi Dayna, Your story is almost the same as mine!! At the 20 week anomaly scan, the sonographer said that 's head was normal size, but her abdomen was small in comparison and that the level of amniotic fuid was low, so to come back in 4 weeks time. We did and the consultant said she was still growing asymmetrically and was IUGR, and advised us to have an amnio and blood tests for a virus. As both of these came back negative, they said it must be due to placental insufficiency, and that they would do growth scans every month. To reassure me they also did CTG's every week, as did not move much at all in the womb. By week 34 's growth had pretty much stopped, so they decided to deliver her by c-section (they said that a natural birth would be too stressful for her, especially as she was small and in breech position!) and gave me steroids to help her lungs. On 28 March 2002, at 15:25 was delivered. I was so chuffed, as despite have had an amnio, and having had over 15 scans in all, we had never asked the sex, so it was a lovely surprise to be a little girl. She weighed 1.46kg (3lbs 3oz) and breathed on her own, but was in SCBU for 5 weeks to monitor growth and feeding. When we brought her home on her due date (4 May) she weighed 3lbs 12oz. Our consultant sonographer had already mentioned something to us when she was in the womb about a rare growth disorder, and was very excited to see that she had incurved little fingers. However, as she was so small, the geneticists wanted to wait until she was bigger before offering a diagnosis. Sure enough, when we took her along at 5 months old, having had no catch-up growth and displaying a lot of characteristics of RSS, they gave her a positive diagnosis. We seem to be lucky so far as eats quite well and is still gaining weight along her own curve (she's now 7 months and weighs 9lbs 8oz). However, she has just had a cold and her appetite has dropped right off, so I am hoping that it comes back. She's due to have have blood sugar levels tested later this month (for suspected hypoglycaemia) and we are waiting to see an endricronologist. It's been a big support to find this board, and learn more about other people's experiences. Enough from me, Rae (mum to , 7 mos, 9lbs 8oz, RSS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 I hope you are winning that battle! Your comment about the clothes reminds me. .. . what are some of the things evereyone has done about this clothing issue. Alyssa is too tall for 3-6m and too thin for 6-9. It makes me crazy! Her grandma and I have taken up sewing quite a few things. She was a fairy for Halloween and we used a doll pattern. However, she's about too tall for that, and the baby patterns are way too roomy!! Any suggestions?? Dayna, Mom to Alyssa 11-13-01, 12lbs 2 oz Re: Any other IUGR babies My daughter was IUGR, she was full term but only weighed 4 pounds! The doctors told me at a very early stage in my pregnancy that she was going to be little! They said it was caused from placenta creada, thats when my placenta grew into my uteris. There was nothing they could have done to get her to become bigger! She is now almost 10 and still pretty tiny.. Back when she was little RSS was'nt even thaught of around here with doctors, so i have faught all her life trying to get her to gain weight and trying to find clothes that fit! Now she has devoloped more medical problems and it's a whole new battle.. She has a severe cause of scoliosis, terrible, terrible migraines and is now also ADD and is doing terrible in school.. So unfortunantly my battle is far from being over.. Thanks Jackie mom of kelsey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 I've been wondering about late teeth myself. Alyssa is almost one and there is not a one in sight! Any thoughts!! Dayna, Mom to Alyssa 11-13-01, 12lbs 2 oz Re: Any other IUGR babies My pregnancy was also very similar to all these stories. They found I had low amniotic fluid when I was about 23 weeks along. I started drinking about 6 liters of water a day, which helped my amniotic fluid stay just on the lower edge of normal. (Any time I drank less my fluid would drop). However, nobody was too alarmed because my fluid was low with my first daughter and other than being a bit slender (6lb 10oz, 21 inches) she was fine when she was born. They kept monitoring (weekly sonogram and non-stress) and noticed that her stomach seemed a bit small. IUGR due to placental insufficiency they said, but her head size was well within normal. I was on modified bed-rest (could go to work, but only sit at my desk, no lifting, no exercise). They gave me steroids wanted to do a C-section at 37 weeks, but I refused as she still seemed to be growing, just a little slowly. They did a C-section at 39 weeks when my amniotic fluid very suddenly dropped even lower. She was born 4lb. 10oz., 18 " long, but had radically low blood sugar, and spent 6 days in the NICU. What a funny looking baby she was (but really cute). It seemed like nearly half her weight was in her head. Her body was so tiny, and even her face was tiny and smooshed up and seemed to be about half the size of the face of other baby's. She is now hovering in the 40-50th percentile for length, 75th percentile for head size, and 5th percentile for weight. Her appetite has been fluctuating a bit lately, but she has two teeth coming in, so that's not surprising. And her face seems to be growing into her head a little, not quite so disproportionate, but part of that is the fact that she is finally getting some hair to cover that big head. It seems like her teeth are taking a LOT longer to come in that Dorothea's did. They've been on the edge of breaking through for about 6 weeks now. Is it typical for the teeth of RSS kids to take longer coming in? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 Dayna Adam's teeth started shortly after his first birthday. Developmentally I was told that was on the low low end of normal. Now that he is 10, this summer he finally got 2 adult teeth (front lower) but the babies hadn't come out. So they were pulled. His 6 year molars just finished coming through. My big fear was that his adult teeth would be these huge suckers (you know kids whose adult teeth come in and at first just look huge in their little mouths?) well I was terrified his would be way worse. Yet these adult teeth are tiny and just right in his mouth. Be careful as time goes on. Don't let the dentist start pulling teeth. I just had a run in with my dentist. He wanted to pull the neighbour teeth as Adam's front adult ones are crowded and after much " discussion " on my part he took an xray and realized the next ones won't be in for so long that those 2 adult ones could shift so far that they'll end up lying down in the empty spaces. Give it time.....seems a common issue with our darlings. Debby Re: Any other IUGR babies > > > My pregnancy was also very similar to all these stories. They found I > had low amniotic fluid when I was about 23 weeks along. I started > drinking about 6 liters of water a day, which helped my amniotic fluid > stay just on the lower edge of normal. (Any time I drank less my > fluid would drop). However, nobody was too alarmed because my fluid > was low with my first daughter and other than being a bit slender (6lb > 10oz, 21 inches) she was fine when she was born. > > They kept monitoring (weekly sonogram and non-stress) and noticed that > her stomach seemed a bit small. IUGR due to placental insufficiency > they said, but her head size was well within normal. I was on > modified bed-rest (could go to work, but only sit at my desk, no > lifting, no exercise). They gave me steroids wanted to do a C-section > at 37 weeks, but I refused as she still seemed to be growing, just a > little slowly. They did a C-section at 39 weeks when my amniotic > fluid very suddenly dropped even lower. She was born 4lb. 10oz., 18 " > long, but had radically low blood sugar, and spent 6 days in the NICU. > What a funny looking baby she was (but really cute). It seemed like > nearly half her weight was in her head. Her body was so tiny, and > even her face was tiny and smooshed up and seemed to be about half the > size of the face of other baby's. > > She is now hovering in the 40-50th percentile for length, 75th > percentile for head size, and 5th percentile for weight. Her appetite > has been fluctuating a bit lately, but she has two teeth coming in, so > that's not surprising. And her face seems to be growing into her head > a little, not quite so disproportionate, but part of that is the fact > that she is finally getting some hair to cover that big head. > > It seems like her teeth are taking a LOT longer to come in that > Dorothea's did. They've been on the edge of breaking through for > about 6 weeks now. Is it typical for the teeth of RSS kids to take > longer coming in? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Hi Dayna, I just had a look at your photos - Alyssa is such a sweetie! She does look similar to - as many people post here will tell you, RSS does give a certain 'look'. The 5th finger curving is also a characteristic of RSS, although we also have some history of it in our family too. My middle fingers are slightly curved, as are my mums, and her mums and we all have slighty webbed middle toes. You find many strange things when you start looking into it! You can some pics of on http://www.pidcock.co.uk/emily Bye for now Rae (mum to , 7mos, 9lbs 8oz, RSS) > Rae~ > > Wow! Congrats on such a miracle baby. Your story is so similiar. I find it so ironic that you mention the curved 5 th finger. Alyssa has this as well, in addtion to the small jaw and broad forehead. (We posted a photo in the photos). The funny thing is all of those characteristics are hereditary on my husbands side. You wouldn't believe how much she looks like her daddy and her grandpa. Even the curved finger!! That's why it never even occurred to us, that it indicated anything. I thought it was pretty odd that none of her peds ever noticed it myself. (We went through 3 before we found one I liked.) They saw her at least 2 times per month since her birth. Oh well, it probably wouldn't have changed anything anyway! > > Thanks for sharing! > > Dayna, mom to Alyssa 11-13-01, 12lbs 2oz > Re: Any other IUGR babies > > > Hi Dayna, > Your story is almost the same as mine!! At the 20 week anomaly scan, > the sonographer said that 's head was normal size, but her > abdomen was small in comparison and that the level of amniotic fuid > was low, so to come back in 4 weeks time. We did and the consultant > said she was still growing asymmetrically and was IUGR, and advised > us to have an amnio and blood tests for a virus. As both of these > came back negative, they said it must be due to placental > insufficiency, and that they would do growth scans every month. To > reassure me they also did CTG's every week, as did not move > much at all in the womb. By week 34 's growth had pretty much > stopped, so they decided to deliver her by c-section (they said that > a natural birth would be too stressful for her, especially as she was > small and in breech position!) and gave me steroids to help her > lungs. > On 28 March 2002, at 15:25 was delivered. I was so chuffed, as > despite have had an amnio, and having had over 15 scans in all, we > had never asked the sex, so it was a lovely surprise to be a little > girl. She weighed 1.46kg (3lbs 3oz) and breathed on her own, but was > in SCBU for 5 weeks to monitor growth and feeding. When we brought > her home on her due date (4 May) she weighed 3lbs 12oz. > > Our consultant sonographer had already mentioned something to us when > she was in the womb about a rare growth disorder, and was very > excited to see that she had incurved little fingers. However, as she > was so small, the geneticists wanted to wait until she was bigger > before offering a diagnosis. Sure enough, when we took her along at 5 > months old, having had no catch-up growth and displaying a lot of > characteristics of RSS, they gave her a positive diagnosis. > > We seem to be lucky so far as eats quite well and is still > gaining weight along her own curve (she's now 7 months and weighs > 9lbs 8oz). However, she has just had a cold and her appetite has > dropped right off, so I am hoping that it comes back. She's due to > have have blood sugar levels tested later this month (for suspected > hypoglycaemia) and we are waiting to see an endricronologist. > > It's been a big support to find this board, and learn more about > other people's experiences. > > Enough from me, > Rae (mum to , 7 mos, 9lbs 8oz, RSS) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Until very recently, lived in overalls. Judith, Steve, (RSS) and (non RSS) 2 1/2 year old twins > I hope you are winning that battle! Your comment about the clothes reminds me. . . what are some of the things evereyone has done about this clothing issue. Alyssa is too tall for 3-6m and too thin for 6- 9. It makes me crazy! Her grandma and I have taken up sewing quite a few things. She was a fairy for Halloween and we used a doll pattern. However, she's about too tall for that, and the baby patterns are way too roomy!! Any suggestions?? > > Dayna, Mom to Alyssa 11-13-01, 12lbs 2 oz > Re: Any other IUGR babies > > > My daughter was IUGR, she was full term but only weighed 4 pounds! The > doctors told me at a very early stage in my pregnancy that she was going to > be little! They said it was caused from placenta creada, thats when my > placenta grew into my uteris. There was nothing they could have done to get > her to become bigger! She is now almost 10 and still pretty tiny.. Back when > she was little RSS was'nt even thaught of around here with doctors, so i have > faught all her life trying to get her to gain weight and trying to find > clothes that fit! Now she has devoloped more medical problems and it's a > whole new battle.. She has a severe cause of scoliosis, terrible, terrible > migraines and is now also ADD and is doing terrible in school.. So > unfortunantly my battle is far from being over.. Thanks Jackie mom of > kelsey > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 You guys took great pictures to indicate just how small she really was. I love the one with the feet!! What a doll!! Re: Any other IUGR babies > > > Hi Dayna, > Your story is almost the same as mine!! At the 20 week anomaly scan, > the sonographer said that 's head was normal size, but her > abdomen was small in comparison and that the level of amniotic fuid > was low, so to come back in 4 weeks time. We did and the consultant > said she was still growing asymmetrically and was IUGR, and advised > us to have an amnio and blood tests for a virus. As both of these > came back negative, they said it must be due to placental > insufficiency, and that they would do growth scans every month. To > reassure me they also did CTG's every week, as did not move > much at all in the womb. By week 34 's growth had pretty much > stopped, so they decided to deliver her by c-section (they said that > a natural birth would be too stressful for her, especially as she was > small and in breech position!) and gave me steroids to help her > lungs. > On 28 March 2002, at 15:25 was delivered. I was so chuffed, as > despite have had an amnio, and having had over 15 scans in all, we > had never asked the sex, so it was a lovely surprise to be a little > girl. She weighed 1.46kg (3lbs 3oz) and breathed on her own, but was > in SCBU for 5 weeks to monitor growth and feeding. When we brought > her home on her due date (4 May) she weighed 3lbs 12oz. > > Our consultant sonographer had already mentioned something to us when > she was in the womb about a rare growth disorder, and was very > excited to see that she had incurved little fingers. However, as she > was so small, the geneticists wanted to wait until she was bigger > before offering a diagnosis. Sure enough, when we took her along at 5 > months old, having had no catch-up growth and displaying a lot of > characteristics of RSS, they gave her a positive diagnosis. > > We seem to be lucky so far as eats quite well and is still > gaining weight along her own curve (she's now 7 months and weighs > 9lbs 8oz). However, she has just had a cold and her appetite has > dropped right off, so I am hoping that it comes back. She's due to > have have blood sugar levels tested later this month (for suspected > hypoglycaemia) and we are waiting to see an endricronologist. > > It's been a big support to find this board, and learn more about > other people's experiences. > > Enough from me, > Rae (mum to , 7 mos, 9lbs 8oz, RSS) > > > > > Quote Link to comment Share on other sites More sharing options...
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