Guest guest Posted August 20, 2000 Report Share Posted August 20, 2000 -Dear Amy, I think most of us on this list have had feeding problems with our kids. That tends to be a big issue for RSS kids. My son Storm was 4lb. 5 oz. at birth and would hardly eat. He actually lost down to 4lbs. in 3 days after he was born. He struggled with breast feeding, but did do much better with the bottle. I pumped breast milk to feed him in hopes that he would be healthier for it. It only lasted about 4 months. We did not get Storm's diagnosis until he was 10 months and then were told nothing much. Just to see a geneticist once a year. Well, that was not enough!!!! Anyway, he's doing better now. I suggest you check out magicfoundation.org to find out more!!! Also you can check out rsskids.com . It has a few pictures, two of which are of Storm, One at 4 months of age and one at 4 years of age. Hope you find the answers you are looking for. Carmen, Mom to Storm, 5 next monday, RSS, assymetry(opposite arm and leg), periactin, 26#, 37 1/4 " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2000 Report Share Posted August 20, 2000 Amy, Congrats on the birth of your daughter. My son who is now 20 months went through a similar experience. He came home on oxygen after a long NICU stay. We ng fed him for a few months as his weight gain was/is so slow. Hang in there. She will grow just a much slower pace than a full term non RSS child. You have found a great site to gather info. Meribeth > Hello! > I have a daughter who was diagnosed with RSS. She was born 2 lbs. 6 oz. on > April 14, 2000. She is now 4 lbs. 13 oz. Her name is Haven, she had severe > reflux so we had the Nissen procedure and a G-Tube placed on June 12. She > is now at home but still on oxygen and growing so slowly. I am wondered if > anyone else had a similar experience with the extremely slow growth, need > for oxygen, and/or feeding issues (she is not fond of breast feeding or the > bottle). > > Your advice is much appreciated. > > Thank You! > Amy Leigh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2000 Report Share Posted August 21, 2000 Hi Amy Leigh, You might want to talk with Stacie Lehfeldt. Her son was just under 2 pounds at birth (full term). Her e-mail address is tclfam@... . I hope she can help you. Ken M New RSS Mom Hello! I have a daughter who was diagnosed with RSS. She was born 2 lbs. 6 oz. on April 14, 2000. She is now 4 lbs. 13 oz. Her name is Haven, she had severe reflux so we had the Nissen procedure and a G-Tube placed on June 12. She is now at home but still on oxygen and growing so slowly. I am wondered if anyone else had a similar experience with the extremely slow growth, need for oxygen, and/or feeding issues (she is not fond of breast feeding or the bottle). Your advice is much appreciated. Thank You! Amy Leigh _____ <http://click./1/4831/1/_/229381/_/966805883/> Click Here! <http://adimg./img/4831/1/_/229381/_/966805883/> _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2000 Report Share Posted August 21, 2000 Welcome!!! I am hoping that I will find that others have emailed you since I am just now getting through emails. I can't give you any advice on your questions, as we didn't get our diagnosis until 2 years. But I know that this group is awesome and you will learn tons of info and receive a lot of support. You are at a tough point, with a tiny baby who can't tell you what she is feeling. But it does get better. Salem (, 4.6 yrs, RSS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2000 Report Share Posted August 22, 2000 Thank You! New RSS Mom Hello! I have a daughter who was diagnosed with RSS. She was born 2 lbs. 6 oz. on April 14, 2000. She is now 4 lbs. 13 oz. Her name is Haven, she had severe reflux so we had the Nissen procedure and a G-Tube placed on June 12. She is now at home but still on oxygen and growing so slowly. I am wondered if anyone else had a similar experience with the extremely slow growth, need for oxygen, and/or feeding issues (she is not fond of breast feeding or the bottle). Your advice is much appreciated. Thank You! Amy Leigh _____ <http://click./1/4831/1/_/229381/_/966805883/> Click Here! <http://adimg./img/4831/1/_/229381/_/966805883/> _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2000 Report Share Posted August 22, 2000 Hi Meribeth! My daughter Haven was in NICU for 68 days and we are now trying to wean her off her oxygen. How long was your son on oxygen and if you don't mind me asking how much did he weigh. Haven is growing so slow it is agonizing. Thanks for you support! Re: New RSS Mom Amy, Congrats on the birth of your daughter. My son who is now 20 months went through a similar experience. He came home on oxygen after a long NICU stay. We ng fed him for a few months as his weight gain was/is so slow. Hang in there. She will grow just a much slower pace than a full term non RSS child. You have found a great site to gather info. Meribeth > Hello! > I have a daughter who was diagnosed with RSS. She was born 2 lbs. 6 oz. on > April 14, 2000. She is now 4 lbs. 13 oz. Her name is Haven, she had severe > reflux so we had the Nissen procedure and a G-Tube placed on June 12. She > is now at home but still on oxygen and growing so slowly. I am wondered if > anyone else had a similar experience with the extremely slow growth, need > for oxygen, and/or feeding issues (she is not fond of breast feeding or the > bottle). > > Your advice is much appreciated. > > Thank You! > Amy Leigh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2000 Report Share Posted August 22, 2000 Thanks for your response. Storm is a very good looking young man, I saw his picture, it made me feel much better. Haven's head is so much bigger than her body right now it is hard to see the light at the end of the tunnel. How long did it take before Storm finally took the bottle? Re: New RSS Mom -Dear Amy, I think most of us on this list have had feeding problems with our kids. That tends to be a big issue for RSS kids. My son Storm was 4lb. 5 oz. at birth and would hardly eat. He actually lost down to 4lbs. in 3 days after he was born. He struggled with breast feeding, but did do much better with the bottle. I pumped breast milk to feed him in hopes that he would be healthier for it. It only lasted about 4 months. We did not get Storm's diagnosis until he was 10 months and then were told nothing much. Just to see a geneticist once a year. Well, that was not enough!!!! Anyway, he's doing better now. I suggest you check out magicfoundation.org to find out more!!! Also you can check out rsskids.com . It has a few pictures, two of which are of Storm, One at 4 months of age and one at 4 years of age. Hope you find the answers you are looking for. Carmen, Mom to Storm, 5 next monday, RSS, assymetry(opposite arm and leg), periactin, 26#, 37 1/4 " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2000 Report Share Posted August 22, 2000 > > Amy, > > Congrats on the birth of your daughter. My son who is now 20 months > went through a similar experience. He came home on oxygen after a > long NICU stay. We ng fed him for a few months as his weight gain > was/is so slow. > > Hang in there. She will grow just a much slower pace than a full > term non RSS child. > > You have found a great site to gather info. > > Meribeth > > > > > > > > > > > > > > Hello! > > I have a daughter who was diagnosed with RSS. She was born 2 lbs. > 6 oz. on > > April 14, 2000. She is now 4 lbs. 13 oz. Her name is Haven, she > had severe > > reflux so we had the Nissen procedure and a G-Tube placed on June > 12. She > > is now at home but still on oxygen and growing so slowly. I am > wondered if > > anyone else had a similar experience with the extremely slow > growth, need > > for oxygen, and/or feeding issues (she is not fond of breast > feeding or the > > bottle). > > > > Your advice is much appreciated. > > > > Thank You! > > Amy Leigh Quote Link to comment Share on other sites More sharing options...
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