Guest guest Posted October 13, 2006 Report Share Posted October 13, 2006 Hello my name is Nadine. I just had a baby about 3 weeks ago that has charge syndrome. My son Austin also has a heart diese called Pulmanary Atresia VSD with a double aortic Arch. The doctors do believe that my son is death because of the abnormal structer in the ear. His right nostral has a very narrow air way and one ear is bigger than the other. They have just put a g-tube in yesturday becuase he has reflux really bad. He has been in the hospital since he was born on 9-23-06. I am trying to learn as much as I can about what to look forword to when he comes home and in the future. My mind is going nuts and I have a 2 year old at home also that I am now having problems with since I have been going to the hospital and I am not around as much as I use to. I have a full time job and I do not even know if I would be able to go back to work some time soon or not. If anyone has gone thru this please give me some advise or even tell me what can I expect. Thanks Nadine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2006 Report Share Posted October 13, 2006 Congratulations on the birth of you new son. My daughter is 6 and was born with a host of issues related to CHARGE - included Pulmonary Atresia and VSD. I also had a 3 year old at the time and it was very difficult. My advise would be to take it step by step - one hour at a time. This group is a great resource and unbelievable support. I've got to rush off to pick up a child from school but I'd love to communicate more. Lori Myers Spouse - Trent, Children - (9), (6, CHARGE Syndrome, Congenital Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal Atresia, Decanullated Trach, G-button, partial hearing loss, walking as of 12/22/04!, and Emma (3) Dallas, Texas A new mother of a Charger Hello my name is Nadine. I just had a baby about 3 weeks ago that has charge syndrome. My son Austin also has a heart diese called Pulmanary Atresia VSD with a double aortic Arch. The doctors do believe that my son is death because of the abnormal structer in the ear. His right nostral has a very narrow air way and one ear is bigger than the other. They have just put a g-tube in yesturday becuase he has reflux really bad. He has been in the hospital since he was born on 9-23-06. I am trying to learn as much as I can about what to look forword to when he comes home and in the future. My mind is going nuts and I have a 2 year old at home also that I am now having problems with since I have been going to the hospital and I am not around as much as I use to. I have a full time job and I do not even know if I would be able to go back to work some time soon or not. If anyone has gone thru this please give me some advise or even tell me what can I expect. Thanks Nadine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2006 Report Share Posted October 13, 2006 Nadine- First of all, congratulations on the birth of Austin. And welcome to our CHARGE family! Although you didn't join us by choice, I hope you'll find that there are blessings awaiting you as you raise Austin and his sibling. My daughter with CHARGE, Aubrie, is nearly 9 years old and in 3rd grade. She's been in regular school until this year when we chose to send her to the IL School for the Deaf. It's close enough that she can ride the bus and she has the opportunity to learn sign language and have awesome supports there. Anyway-Aubrie had a coarctation of the aorta which was repaired at 8 days old. She also had some VSDs which closed on their own. She is mildly hearing impaired in her good ear, and has mod-severe loss in her bad ear. She had a g-tube til age 1.5 due to sucking/swallowing difficulties and severe reflux. Now she is a wonderful eater! Those early months are frightening and overwhelming. We didn't know if Aubrie would see, hear, walk, talk, eat. but she does all of that and more. The big unknown is very unsettling and scary. As you get through each day with Austin and get home, you'll begin having Early Intervention services and learning more about his abilities and challenges. When all of the medical stuff is under control, you'll have energy to consider his development. I remember feeling at first that Aubrie was just a bunch of medical problems. It took a while before I could enjoy her as a baby. You will surprise yourself with all that you can learn and handle. Yes, it will be overwhelming at times. But, hopefully, those times will be short and pass quickly. When they come, just hold on and believe that you'll get through it. You will. We are here as evidence that it's possible :-) No one can tell you what Austin will or will not do. Provide the best medical care you can access, provide the best therapies and supports you can, and love him, love him, love him. Now, will that be a challenge with a 2-year-old at home and a full-time job waiting for your return???? Oh, yes! Some parents manage to keep working while caring for their young child. I couldn't do it. I was a home child care provider and a teacher. I couldn't care for children with such a crazy schedule. And I couldn't return to the classroom and have the time off I'd need for all of Aubrie's care. But eventually, I was able to begin working part-time with a flexible schedule. Now I work 20 hours/week or so out of my home with a very flexible schedule. That is working for me. But, as I said, others somehow manage to work regular jobs. Perhaps some of them can share how they have done that. Will it be possible for you to get a leave of absence for a period of time? It's likely that Austin's appointments, therapies, and daily care will be extremely time consuming. Combining that with the needs of your 2-year-old will be an awful lot to handle. Ideally, you could cut your work hours but allow your 2-year-old to stay in daycare (assuming it's a good situation that he/she enjoys) so that you can attend to Austin during the day and give the other child more attention in the evenings. Perhaps talking to the hospital social worker would help in finding the resources available to help with the financial end of things. In IL, we have financial support for Aubrie's medical bills (the part not covered by insurance) as long as our income is below a cap. When we left the hospital with Aubrie, she was on an insane feeding schedule - every 2 hours round the clock. I was sleep-deprived, stressed, and losing it in a very short time. We fought and got minimal night time nursing help for a short time. In retrospect, I would not allow them to discharge us unless I was confident that I could handle the schedule and care required or if there were home nursing supports in place. If you're at all uncomfortable or unsure about your ability to manage things when you go home, talk to someone before discharge to get things set up properly for your family. I'm probably overwhelming you with my ongoing chatter. Let us know how else we can help. Michele W mom to Aubrie 8 yrs CHaRgE and nearly 15 yrs, wife to DJ, in IL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2006 Report Share Posted October 13, 2006 Dear Nadine, Congratulations on your new baby boy and welcome to the CHARGE listserv. I'm so pleased you found it so early; it really has been a lifeline for me for the past eight years. I hope you find as much support and love from this listserv as I have. It's hard to say exactly what Austin and your future will be like but overall, this is what I've learned in the last eight years since my daughter Kennedy was born, both from experience personally and from the many wonderful parents who have participated in this listserv: - for the most part, the first year is the hardest. It's so much to deal with all at once. You will have all the diagnoses for all the different parts of CHARGE, he'll have a lot of surgeries if necessary, lots of visits with doctors, specialists and therapists you've never been familiar with before. - things do eventually calm down and you'll learn new ways of coping you never thought possible before. What you never dreamed you could do, you will do and it will all become " normal " to you in time. - for every bad time, there's ten celebrations for all the things these amazing children accomplish. They are full of determination and Austin will surprise you over and over again with all that he does and with his spirit. The people I've met who have CHARGE (including my daughter, many other children and adults) seem to have a great spirit about them. - If you need help, please don't be afraid to ask, whether it's here on the list or at home with respite care, help from family, friends, whoever is there to support you. - There are lots of people here who understand and who are here to support you help you however we can. I know it's hard, just try and take one day at a time and ask lots of questions. We'll help however we can. http://www.chargesyndrome.info > Hello my name is Nadine. I just had a baby about 3 weeks ago that has > charge syndrome. My son Austin also has a heart diese called > Pulmanary Atresia VSD with a double aortic Arch. The doctors do > believe that my son is death because of the abnormal structer in the > ear. His right nostral has a very narrow air way and one ear is > bigger than the other. They have just put a g-tube in yesturday > becuase he has reflux really bad. He has been in the hospital since > he was born on 9-23-06. I am trying to learn as much as I can about > what to look forword to when he comes home and in the future. My mind > is going nuts and I have a 2 year old at home also that I am now > having problems with since I have been going to the hospital and I am > not around as much as I use to. I have a full time job and I do not > even know if I would be able to go back to work some time soon or > not. If anyone has gone thru this please give me some advise or even > tell me what can I expect. > > Thanks Nadine > > > -- " It is far better to grasp the universe as it really is than to persist in delusion, however satisfying and reassuring. " --Carl Sagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2006 Report Share Posted October 13, 2006 Nadine, it's a hard time you are living now, but things do improve. From my recent own experience as mother to a 6 months old baby (na), the first thing I would encourage you to do is to find help to take care of your new baby, so that you can spend a little more time at home and try to rest a bit (that's not what I did, and I'm still trying to gain weight and not to feel tired from morning to night). The best thing that helped na was the CHARGE Foundation manual: My husband downloaded and printed it; then I made several copies and gave them to the doctor, encouraging them to read it, since they know very little about the syndrome. Many accepted it gladly, others not... They can't tell you how much your baby sees or hears untill they have the results of the studies. Don't loose your faith, and keep insisting to go forward at quick path (our experience was quite bad at the beginning; they told us that CHARGE was just an academic issue, and that we should focus on her potentials.... They didn't even know that na's crying was due to reflux, and that she had swallowing difficulties, as most chargers). Some words that a therapist told us, to talk with our elder children: I can't spend as much time with you now as you would like me to, because you little brother/sister needs a lot of help from all of us to grow and get better. But be sure that I will also be with you if you need me. (We were asked to tell our children at home that their baby sisters/brother had an extremely odd disease, that they -the elder ones- won't ever have. This explanation is to make them clear that, if they have a fever o a flu, they are not going to undergo their sibbling's situation). As other parents from this forum told me, keep reading: being a fast learner can help your child a lot. But also try to find at least some moments for you. Nadine, bear in mind that you can count on us. Love, Vanesa " El caos es un orden por descifrar. " José Saramago. > > Hello my name is Nadine. I just had a baby about 3 weeks ago that has > charge syndrome. My son Austin also has a heart diese called > Pulmanary Atresia VSD with a double aortic Arch. The doctors do > believe that my son is death because of the abnormal structer in the > ear. His right nostral has a very narrow air way and one ear is > bigger than the other. They have just put a g-tube in yesturday > becuase he has reflux really bad. He has been in the hospital since > he was born on 9-23-06. I am trying to learn as much as I can about > what to look forword to when he comes home and in the future. My mind > is going nuts and I have a 2 year old at home also that I am now > having problems with since I have been going to the hospital and I am > not around as much as I use to. I have a full time job and I do not > even know if I would be able to go back to work some time soon or > not. If anyone has gone thru this please give me some advise or even > tell me what can I expect. > > Thanks Nadine > > > -- ------------------------- Vanesa Devetach vanesa.devetach@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2006 Report Share Posted October 14, 2006 Hello Nadine my name is Crystal and I am a stay at home mom of 3 kids. My youngest and only daughter is my CHARGEr. I use to work full time til I had her and then I knew I needed to be here for her all the time. Eva has the coluboma of the eyes, hearing loss in both ears, one kidney, ASD and PDA of the heart and Facial paralysis. She had 2 heart surgeries and has a g-tube placed also but we have not used it in months. She is now 18 months old and she doesnt sit or walk yet but we are working hard with her. Good luck with your son and we are all here to listen and help with any questions you may have. Hugs, Crystal mom to (10), (3), and Eva (18 month old CHARGEr) wife to Dan http://www.babysites.com/sites/crystalm1476/ > > Hello my name is Nadine. I just had a baby about 3 weeks ago that has > charge syndrome. My son Austin also has a heart diese called > Pulmanary Atresia VSD with a double aortic Arch. The doctors do > believe that my son is death because of the abnormal structer in the > ear. His right nostral has a very narrow air way and one ear is > bigger than the other. They have just put a g-tube in yesturday > becuase he has reflux really bad. He has been in the hospital since > he was born on 9-23-06. I am trying to learn as much as I can about > what to look forword to when he comes home and in the future. My mind > is going nuts and I have a 2 year old at home also that I am now > having problems with since I have been going to the hospital and I am > not around as much as I use to. I have a full time job and I do not > even know if I would be able to go back to work some time soon or > not. If anyone has gone thru this please give me some advise or even > tell me what can I expect. > > Thanks Nadine > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Hi Crystal thanks for replying to my message. I am finding that I will end up having to stay at home also. My son has not had a surgery on his heart yet and the doctors are talking about sending him home before that. I am so nervous about it. I do not know if I will be able to tell when something is going wrong or not? I know that I will being seeing a doctor every week and a nurse will be coming in to check on everything with that will only be a couple times. But it still bothers me. I am thinking about it all the time and It can be as close to a month or maybe earlier that they will send him home. I just wish they would do the first procedure to ease my mind a little. They are waiting for him to develope heart failure or start turing blue. He is a little blue around the eyes and his lips but that is just not enough. They want to try and wait as long as they can so he can grow and his heart will be bigger and they are talking maybe 7 months it seems so far away and such a long time. I know that the doctors that are working on him know what is best and they are from a very good hospital. But I just get in these moods sometimes that I just do not want to be bothered with and I break down and cry. Did you ever get these feelings? Nadine mother of Austin 3 weeks Re: A new mother of a Charger Hello Nadine my name is Crystal and I am a stay at home mom of 3 kids. My youngest and only daughter is my CHARGEr. I use to work full time til I had her and then I knew I needed to be here for her all the time. Eva has the coluboma of the eyes, hearing loss in both ears, one kidney, ASD and PDA of the heart and Facial paralysis. She had 2 heart surgeries and has a g-tube placed also but we have not used it in months. She is now 18 months old and she doesnt sit or walk yet but we are working hard with her. Good luck with your son and we are all here to listen and help with any questions you may have. Hugs, Crystal mom to (10), (3), and Eva (18 month old CHARGEr) wife to Dan http://www.babysite s.com/sites/ crystalm1476/ > > Hello my name is Nadine. I just had a baby about 3 weeks ago that has > charge syndrome. My son Austin also has a heart diese called > Pulmanary Atresia VSD with a double aortic Arch. The doctors do > believe that my son is death because of the abnormal structer in the > ear. His right nostral has a very narrow air way and one ear is > bigger than the other. They have just put a g-tube in yesturday > becuase he has reflux really bad. He has been in the hospital since > he was born on 9-23-06. I am trying to learn as much as I can about > what to look forword to when he comes home and in the future. My mind > is going nuts and I have a 2 year old at home also that I am now > having problems with since I have been going to the hospital and I am > not around as much as I use to. I have a full time job and I do not > even know if I would be able to go back to work some time soon or > not. If anyone has gone thru this please give me some advise or even > tell me what can I expect. > > Thanks Nadine > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Hi Vanesa and thanks for replying. I am trying to find out and learn as much as I can about everything that is wrong with my son Austin. But with the more I learn right now I worry about alot more and try to talk to others in the family about it but they do not understand somethings because they are new at this also. For his hearing the doctors said that from a ct scan they found that the structure in the ears does not have any hearing capabilities. Which means that we are all going to need to learn sign language. My boyfriend feels that I am kind of rushing the fact of learning it but I feel that we are adults and it would be something that will take longer for us to learn plus we will have to help our families learn sign language. Do you think I am pushing this to quick since he is only 3 weeks old. Another things is my other son Jake is only 2 yrs. old and I just do not know how to really explain to him what is going on. He has not even seen his brother except for in pictures. I am very lucky when it comes to the doctors that are taking care of my son they really did not know much about the charge syndrome. I mean he was seen by a team of 12 doctors all from different areas in the medical field and these doctors will always be dealing with my son for the rest of his life. It took alot of test in the first 4 days of Austins life before they really told us what was wrong with him. They told us bits and peaces in the begining but then we had a sit down with all the doctors and they told us everything that they have found in the test and what it all meant. So they were really good and finding everything they needed to know about the syndrome and his heart diese. I am very pleased when it comes down to that. I do have a lot of moments when I just do not want to be bothered with and I will cry. But then I think right now I need to be as strong as I can and get thru everything. They found out pretty quick that my son was having problems with reflux and did a stomach wrap and put the g- tube in. Because my son was getting food in his lungs and was cuasing his oxygen saturation levels to drop that is what propted the g-tube. I am glad to find a group of others that i can talk to and hopefully get some answers with. Thanks Nadine mother of Austin 3 weeks Re: A new mother of a Charger Nadine, it's a hard time you are living now, but things do improve. From my recent own experience as mother to a 6 months old baby (na), the first thing I would encourage you to do is to find help to take care of your new baby, so that you can spend a little more time at home and try to rest a bit (that's not what I did, and I'm still trying to gain weight and not to feel tired from morning to night). The best thing that helped na was the CHARGE Foundation manual: My husband downloaded and printed it; then I made several copies and gave them to the doctor, encouraging them to read it, since they know very little about the syndrome. Many accepted it gladly, others not... They can't tell you how much your baby sees or hears untill they have the results of the studies. Don't loose your faith, and keep insisting to go forward at quick path (our experience was quite bad at the beginning; they told us that CHARGE was just an academic issue, and that we should focus on her potentials.. .. They didn't even know that na's crying was due to reflux, and that she had swallowing difficulties, as most chargers). Some words that a therapist told us, to talk with our elder children: I can't spend as much time with you now as you would like me to, because you little brother/sister needs a lot of help from all of us to grow and get better. But be sure that I will also be with you if you need me. (We were asked to tell our children at home that their baby sisters/brother had an extremely odd disease, that they -the elder ones- won't ever have. This explanation is to make them clear that, if they have a fever o a flu, they are not going to undergo their sibbling's situation). As other parents from this forum told me, keep reading: being a fast learner can help your child a lot. But also try to find at least some moments for you. Nadine, bear in mind that you can count on us. Love, Vanesa " El caos es un orden por descifrar. " José Saramago. > > Hello my name is Nadine. I just had a baby about 3 weeks ago that has > charge syndrome. My son Austin also has a heart diese called > Pulmanary Atresia VSD with a double aortic Arch. The doctors do > believe that my son is death because of the abnormal structer in the > ear. His right nostral has a very narrow air way and one ear is > bigger than the other. They have just put a g-tube in yesturday > becuase he has reflux really bad. He has been in the hospital since > he was born on 9-23-06. I am trying to learn as much as I can about > what to look forword to when he comes home and in the future. My mind > is going nuts and I have a 2 year old at home also that I am now > having problems with since I have been going to the hospital and I am > not around as much as I use to. I have a full time job and I do not > even know if I would be able to go back to work some time soon or > not. If anyone has gone thru this please give me some advise or even > tell me what can I expect. > > Thanks Nadine > > > -- ------------ --------- ---- Vanesa Devetach vanesa.devetach@ gmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Hi and thanks for replying. I am finding this group to be very helpful and I know that I have alot of support from my family but they are all still trying to learn everything just like me. I am thankful that I have all these other people to talk to about my sons syndrome becasue if my family would find a question that I am not sure of I believe that I would be able to find the answer here. I find alot of people say that the first year is the worst and I was just wondering were you able to go back to work since your child is now 8 yrs. old. I would love to stay at home and take care of both my kids but things are getting so expensive these days and I would like to help in every way that I can with everything. But right now I do not see me going back to work for awhile but possibly in the future. Nadine mother of Austin 3 weeks Re: A new mother of a Charger Dear Nadine, Congratulations on your new baby boy and welcome to the CHARGE listserv. I'm so pleased you found it so early; it really has been a lifeline for me for the past eight years. I hope you find as much support and love from this listserv as I have. It's hard to say exactly what Austin and your future will be like but overall, this is what I've learned in the last eight years since my daughter Kennedy was born, both from experience personally and from the many wonderful parents who have participated in this listserv: - for the most part, the first year is the hardest. It's so much to deal with all at once. You will have all the diagnoses for all the different parts of CHARGE, he'll have a lot of surgeries if necessary, lots of visits with doctors, specialists and therapists you've never been familiar with before. - things do eventually calm down and you'll learn new ways of coping you never thought possible before. What you never dreamed you could do, you will do and it will all become " normal " to you in time. - for every bad time, there's ten celebrations for all the things these amazing children accomplish. They are full of determination and Austin will surprise you over and over again with all that he does and with his spirit. The people I've met who have CHARGE (including my daughter, many other children and adults) seem to have a great spirit about them. - If you need help, please don't be afraid to ask, whether it's here on the list or at home with respite care, help from family, friends, whoever is there to support you. - There are lots of people here who understand and who are here to support you help you however we can. I know it's hard, just try and take one day at a time and ask lots of questions. We'll help however we can. http://www.chargesy ndrome.info > Hello my name is Nadine. I just had a baby about 3 weeks ago that has > charge syndrome. My son Austin also has a heart diese called > Pulmanary Atresia VSD with a double aortic Arch. The doctors do > believe that my son is death because of the abnormal structer in the > ear. His right nostral has a very narrow air way and one ear is > bigger than the other. They have just put a g-tube in yesturday > becuase he has reflux really bad. He has been in the hospital since > he was born on 9-23-06. I am trying to learn as much as I can about > what to look forword to when he comes home and in the future. My mind > is going nuts and I have a 2 year old at home also that I am now > having problems with since I have been going to the hospital and I am > not around as much as I use to. I have a full time job and I do not > even know if I would be able to go back to work some time soon or > not. If anyone has gone thru this please give me some advise or even > tell me what can I expect. > > Thanks Nadine > > > -- " It is far better to grasp the universe as it really is than to persist in delusion, however satisfying and reassuring. " --Carl Sagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 i echo lisa here it is very hard to tell the futre so early in lie im a 21 year old charger in aus syndey ive had many probs and as for ylou question bout signing the earlier the beter because even if he cant see you or soemthing you are at least trying to comuniczate that is my opinion and i know many others feel the same way i am deaf i have colibomas i have reflux gtube fed i have hormone probs and much more but i am one big strong girl LOL my mum went into fam business when i got really bad and that was best love you hugs ellen > > Hi and thanks for replying. I am finding this group to be very > helpful and I know that I have alot of support from my family but they are > all still trying to learn everything just like me. I am thankful that I have > all these other people to talk to about my sons syndrome becasue if my > family would find a question that I am not sure of I believe that I would be > able to find the answer here. I find alot of people say that the first year > is the worst and I was just wondering were you able to go back to work since > your child is now 8 yrs. old. I would love to stay at home and take care of > both my kids but things are getting so expensive these days and I would like > to help in every way that I can with everything. But right now I do not see > me going back to work for awhile but possibly in the future. > Nadine mother of Austin 3 weeks > > Re: A new mother of a Charger > > Dear Nadine, > Congratulations on your new baby boy and welcome to the CHARGE listserv. > I'm so pleased you found it so early; it really has been a lifeline for me > for the past eight years. I hope you find as much support and love from > this listserv as I have. > > It's hard to say exactly what Austin and your future will be like but > overall, this is what I've learned in the last eight years since my > daughter > Kennedy was born, both from experience personally and from the many > wonderful parents who have participated in this listserv: > > - for the most part, the first year is the hardest. It's so much to > deal with all at once. You will have all the diagnoses for all the > different > parts of CHARGE, he'll have a lot of surgeries if necessary, lots of > visits > with doctors, specialists and therapists you've never been familiar with > before. > - things do eventually calm down and you'll learn new ways of coping > you never thought possible before. What you never dreamed you could do, > you > will do and it will all become " normal " to you in time. > - for every bad time, there's ten celebrations for all the things > these amazing children accomplish. They are full of determination and > Austin will surprise you over and over again with all that he does and > with > his spirit. The people I've met who have CHARGE (including my daughter, > many other children and adults) seem to have a great spirit about them. > - If you need help, please don't be afraid to ask, whether it's here > on the list or at home with respite care, help from family, friends, > whoever > is there to support you. > - There are lots of people here who understand and who are here to > support you help you however we can. > > I know it's hard, just try and take one day at a time and ask lots of > questions. We'll help however we can. > > http://www.chargesy ndrome.info > > > > > Hello my name is Nadine. I just had a baby about 3 weeks ago that has > > charge syndrome. My son Austin also has a heart diese called > > Pulmanary Atresia VSD with a double aortic Arch. The doctors do > > believe that my son is death because of the abnormal structer in the > > ear. His right nostral has a very narrow air way and one ear is > > bigger than the other. They have just put a g-tube in yesturday > > becuase he has reflux really bad. He has been in the hospital since > > he was born on 9-23-06. I am trying to learn as much as I can about > > what to look forword to when he comes home and in the future. My mind > > is going nuts and I have a 2 year old at home also that I am now > > having problems with since I have been going to the hospital and I am > > not around as much as I use to. I have a full time job and I do not > > even know if I would be able to go back to work some time soon or > > not. If anyone has gone thru this please give me some advise or even > > tell me what can I expect. > > > > Thanks Nadine > > > > > > > > -- > " It is far better to grasp the universe as it really is than to persist in > delusion, however satisfying and reassuring. " --Carl Sagan > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Nadine, Kennedy just became stable enough and was doing well enough that I felt I could comfortably go back to work. She was about four years old at the time. When I made the decision not to go back to work after she was born, I really didn't care how I was going to do it, I just KNEW that she needed me more than that old job I had did. We just made it work, however we had to. I'm really glad that I did and I think it paid off, but I truly understand that some people absolutely CANNOT stay home and I don't think anyone should feel guilty if they have to work to support their family. Just do the best you can do and take it day by day. Hugs to you & Austin! www.chargesyndrome.info > > Hi and thanks for replying. I am finding this group to be very > helpful and I know that I have alot of support from my family but they are > all still trying to learn everything just like me. I am thankful that I have > all these other people to talk to about my sons syndrome becasue if my > family would find a question that I am not sure of I believe that I would be > able to find the answer here. I find alot of people say that the first year > is the worst and I was just wondering were you able to go back to work since > your child is now 8 yrs. old. I would love to stay at home and take care of > both my kids but things are getting so expensive these days and I would like > to help in every way that I can with everything. But right now I do not see > me going back to work for awhile but possibly in the future. > Nadine mother of Austin 3 weeks > > Re: A new mother of a Charger > > Dear Nadine, > Congratulations on your new baby boy and welcome to the CHARGE listserv. > I'm so pleased you found it so early; it really has been a lifeline for me > for the past eight years. I hope you find as much support and love from > this listserv as I have. > > It's hard to say exactly what Austin and your future will be like but > overall, this is what I've learned in the last eight years since my > daughter > Kennedy was born, both from experience personally and from the many > wonderful parents who have participated in this listserv: > > - for the most part, the first year is the hardest. It's so much to > deal with all at once. You will have all the diagnoses for all the > different > parts of CHARGE, he'll have a lot of surgeries if necessary, lots of > visits > with doctors, specialists and therapists you've never been familiar with > before. > - things do eventually calm down and you'll learn new ways of coping > you never thought possible before. What you never dreamed you could do, > you > will do and it will all become " normal " to you in time. > - for every bad time, there's ten celebrations for all the things > these amazing children accomplish. They are full of determination and > Austin will surprise you over and over again with all that he does and > with > his spirit. The people I've met who have CHARGE (including my daughter, > many other children and adults) seem to have a great spirit about them. > - If you need help, please don't be afraid to ask, whether it's here > on the list or at home with respite care, help from family, friends, > whoever > is there to support you. > - There are lots of people here who understand and who are here to > support you help you however we can. > > I know it's hard, just try and take one day at a time and ask lots of > questions. We'll help however we can. > > http://www.chargesy ndrome.info > > > > > Hello my name is Nadine. I just had a baby about 3 weeks ago that has > > charge syndrome. My son Austin also has a heart diese called > > Pulmanary Atresia VSD with a double aortic Arch. The doctors do > > believe that my son is death because of the abnormal structer in the > > ear. His right nostral has a very narrow air way and one ear is > > bigger than the other. They have just put a g-tube in yesturday > > becuase he has reflux really bad. He has been in the hospital since > > he was born on 9-23-06. I am trying to learn as much as I can about > > what to look forword to when he comes home and in the future. My mind > > is going nuts and I have a 2 year old at home also that I am now > > having problems with since I have been going to the hospital and I am > > not around as much as I use to. I have a full time job and I do not > > even know if I would be able to go back to work some time soon or > > not. If anyone has gone thru this please give me some advise or even > > tell me what can I expect. > > > > Thanks Nadine > > > > > > > > -- > " It is far better to grasp the universe as it really is than to persist in > delusion, however satisfying and reassuring. " --Carl Sagan > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Hi Nadine, It's hard to say what to expect. All I can give you is my experience. My son is 9.5 now. Time sure flies. When he was born he was in the hospital for the first 4 months and then in and out with surgeries up until about 3 and then things started to calm down. He has surgery for this that and the other, just had one this past August. Schooling takes up a lot of time, getting the right school, therapists etc. I was in the same position. When was born my daughter was 2.5 and we had to send her off to various relatives and friends because of going back and forth to hospitals, appts. Etc. Luckily, my job as a computer programmer enabled me to work from home The company I guess really liked me and let me work full-time from home, but it was very difficult. I finally quit after doing it for 5 years and having another baby in-between, my youngest now 7. If I didn't have that opportunity, I would definitely have quit, and I probably should have quit when was born but it was my own, and I made lots of money and felt I shouldn't give it up. It was too stressful working and taking care of a sick baby. There were also a lot of medical expenses we had to pay, so working helped, but it was definitely so hard to do. I am not really working now, but am went to school for Interpreting and am now in school learning closed captioning / court reporting so I can go to work, make great money but be home when the kids are home. The first few years are hard with working, but you have to do with what works for your family. Don't feel guilty if you can't work. I think most of us are in the same situration. Debbie Matasker mom to w/CHARGE 9, `11, andra 7 Re: A new mother of a Charger Hi and thanks for replying. I am finding this group to be very helpful and I know that I have alot of support from my family but they are all still trying to learn everything just like me. I am thankful that I have all these other people to talk to about my sons syndrome becasue if my family would find a question that I am not sure of I believe that I would be able to find the answer here. I find alot of people say that the first year is the worst and I was just wondering were you able to go back to work since your child is now 8 yrs. old. I would love to stay at home and take care of both my kids but things are getting so expensive these days and I would like to help in every way that I can with everything. But right now I do not see me going back to work for awhile but possibly in the future. Nadine mother of Austin 3 weeks Re: A new mother of a Charger Dear Nadine, Congratulations on your new baby boy and welcome to the CHARGE listserv. I'm so pleased you found it so early; it really has been a lifeline for me for the past eight years. I hope you find as much support and love from this listserv as I have. It's hard to say exactly what Austin and your future will be like but overall, this is what I've learned in the last eight years since my daughter Kennedy was born, both from experience personally and from the many wonderful parents who have participated in this listserv: - for the most part, the first year is the hardest. It's so much to deal with all at once. You will have all the diagnoses for all the different parts of CHARGE, he'll have a lot of surgeries if necessary, lots of visits with doctors, specialists and therapists you've never been familiar with before. - things do eventually calm down and you'll learn new ways of coping you never thought possible before. What you never dreamed you could do, you will do and it will all become " normal " to you in time. - for every bad time, there's ten celebrations for all the things these amazing children accomplish. They are full of determination and Austin will surprise you over and over again with all that he does and with his spirit. The people I've met who have CHARGE (including my daughter, many other children and adults) seem to have a great spirit about them. - If you need help, please don't be afraid to ask, whether it's here on the list or at home with respite care, help from family, friends, whoever is there to support you. - There are lots of people here who understand and who are here to support you help you however we can. I know it's hard, just try and take one day at a time and ask lots of questions. We'll help however we can. http://www.chargesy ndrome.info > Hello my name is Nadine. I just had a baby about 3 weeks ago that has > charge syndrome. My son Austin also has a heart diese called > Pulmanary Atresia VSD with a double aortic Arch. The doctors do > believe that my son is death because of the abnormal structer in the > ear. His right nostral has a very narrow air way and one ear is > bigger than the other. They have just put a g-tube in yesturday > becuase he has reflux really bad. He has been in the hospital since > he was born on 9-23-06. I am trying to learn as much as I can about > what to look forword to when he comes home and in the future. My mind > is going nuts and I have a 2 year old at home also that I am now > having problems with since I have been going to the hospital and I am > not around as much as I use to. I have a full time job and I do not > even know if I would be able to go back to work some time soon or > not. If anyone has gone thru this please give me some advise or even > tell me what can I expect. > > Thanks Nadine > > > -- " It is far better to grasp the universe as it really is than to persist in delusion, however satisfying and reassuring. " --Carl Sagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 The first two years seem to be the hardest (lots of Dr appointments and hospital visits). It also takes time getting to know the disability itself and the early intervention that is needed. I wasn't working to begin with, and it was a God send since I don't think I could pull it off even now after 2 years (I also have twins...so that maybe why). I was happy to have the time to learn everything I could to make things the best they could be for Meagan. As for health and CHARGE, everyone is different. But, what all CHARGErs seem to have in common is the ability to fight off the common cold and other things because their bodies are working so hard in other areas (healing, growing, etc). I hope this doesn't scare you, but give you awareness. It really is manageable when taken day by day. Especially with the enormous support that comes from this group. , mommy to Meagan (CHaRgE) and 2 year old twins, and big brother 4 years, married to the best daddy in the world for 9 years! -- A new mother of a Charger Hello my name is Nadine. I just had a baby about 3 weeks ago that has charge syndrome. My son Austin also has a heart diese called Pulmanary Atresia VSD with a double aortic Arch. The doctors do believe that my son is death because of the abnormal structer in the ear. His right nostral has a very narrow air way and one ear is bigger than the other. They have just put a g-tube in yesturday becuase he has reflux really bad. He has been in the hospital since he was born on 9-23-06. I am trying to learn as much as I can about what to look forword to when he comes home and in the future. My mind is going nuts and I have a 2 year old at home also that I am now having problems with since I have been going to the hospital and I am not around as much as I use to. I have a full time job and I do not even know if I would be able to go back to work some time soon or not. If anyone has gone thru this please give me some advise or even tell me what can I expect. Thanks Nadine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 Nadine, I don't know how it works in the place where you live, but maybe you can get some help from your health/social security system. We pay every month a private health service (in Buenos Aires, Argentina), and they are providing us with home health care services. It includes a pediatrician coming home twice a week, an occupational therapist (once a week), a kinesiologist (once a week), a language therapist (for swallowing difficulties), and from the near future onwards, specialists for na's hearing and visual problems. There are two nurses per day (they work 12 hours each; there're 5 nurses who take care of my baby). We are going to have another pediatrician at hospital for both our children (not for at home consulting). I thought that with these people in charge of na I would be able to go back to work (family, doctors, friends, keep telling me to do so). I'm finding it quite difficult; nurses are highly experienced professionals, but all the same I have to remind them certain things, control the way they feed na (we've changed her milk for one indicated for babies with allergy to cow's milk proteins, with can cause reflux, etc.). Nurses are extremely nice, but they sort of have some difficulties with calculating quantities, etc. I hope in some months things will be more " under control " , and I'll go back to work some hours a day. I know that I have to start doing gym or find some hobby; we can´t be thinking just about our babies all day long, because we won't be able to help them very much in the long term: our brain needs some " fresh air " to go on working. Guille, my eldest son (4 years old) , is quite well, but we decided to take him to a psychologist, and things are improving little by little. He loves his little sister, though sometimes she is not " available " for him. That is something that I find quite difficult: to foster siblings contact, so that they can develop a deep tie. Our family relation with na is mediated by nurses (when na was born, we almost have to ask permission to nurses to hold our baby in our arms... Does it happen to you?) Sleeping deep and enough is something that I find quite hard to achieve, and whenever I can, I try take a short nap: I can't think clearly if I am too tired, and I become bad-humoured. Are you able to rest a bit? Though it seems hard to believe, I'm beginning to enjoy life again. When na looks at me and smiles, she tells me it is possible. Vanesa > > Hi Vanesa and thanks for replying. I am trying to find out and learn as > much as I can about everything that is wrong with my son Austin. But with > the more I learn right now I worry about alot more and try to talk to others > in the family about it but they do not understand somethings because they > are new at this also. For his hearing the doctors said that from a ct scan > they found that the structure in the ears does not have any hearing > capabilities. Which means that we are all going to need to learn sign > language. My boyfriend feels that I am kind of rushing the fact of learning > it but I feel that we are adults and it would be something that will take > longer for us to learn plus we will have to help our families learn sign > language. Do you think I am pushing this to quick since he is only 3 weeks > old. Another things is my other son Jake is only 2 yrs. old and I just do > not know how to really explain to him what is going on. He has not even seen > his brother except > for in pictures. I am very lucky when it comes to the doctors that are > taking care of my son they really did not know much about the charge > syndrome. I mean he was seen by a team of 12 doctors all from different > areas in the medical field and these doctors will always be dealing with my > son for the rest of his life. It took alot of test in the first 4 days of > Austins life before they really told us what was wrong with him. They told > us bits and peaces in the begining but then we had a sit down with all the > doctors and they told us everything that they have found in the test and > what it all meant. So they were really good and finding everything they > needed to know about the syndrome and his heart diese. I am very pleased > when it comes down to that. I do have a lot of moments when I just do not > want to be bothered with and I will cry. But then I think right now I need > to be as strong as I can and get thru everything. They found out pretty > quick that my son was > having problems with reflux and did a stomach wrap and put the g- tube in. > Because my son was getting food in his lungs and was cuasing his oxygen > saturation levels to drop that is what propted the g-tube. I am glad to find > a group of others that i can talk to and hopefully get some answers with. > Thanks Nadine mother of Austin 3 weeks > > Re: A new mother of a Charger > > Nadine, it's a hard time you are living now, but things do improve. > From my recent own experience as mother to a 6 months old baby (na), > the first thing I would encourage you to do is to find help to take care > of > your new baby, so that you can spend a little more time at home and try to > rest a bit (that's not what I did, and I'm still trying to gain weight and > not to feel tired from morning to night). > > The best thing that helped na was the CHARGE Foundation manual: My > husband downloaded and printed it; then I made several copies and gave > them > to the doctor, encouraging them to read it, since they know very little > about the syndrome. Many accepted it gladly, others not... > > They can't tell you how much your baby sees or hears untill they have the > results of the studies. Don't loose your faith, and keep insisting to go > forward at quick path (our experience was quite bad at the beginning; they > told us that CHARGE was just an academic issue, and that we should focus > on > her potentials.. .. They didn't even know that na's crying was due to > reflux, and that she had swallowing difficulties, as most chargers). > > Some words that a therapist told us, to talk with our elder children: I > can't spend as much time with you now as you would like me to, because you > little brother/sister needs a lot of help from all of us to grow and get > better. But be sure that I will also be with you if you need me. (We were > asked to tell our children at home that their baby sisters/brother had an > extremely odd disease, that they -the elder ones- won't ever have. This > explanation is to make them clear that, if they have a fever o a flu, they > are not going to undergo their sibbling's situation). > > As other parents from this forum told me, keep reading: being a fast > learner > can help your child a lot. But also try to find at least some moments for > you. > > Nadine, bear in mind that you can count on us. > Love, > Vanesa > > " El caos es un orden por descifrar. " José Saramago. > > > > > > Hello my name is Nadine. I just had a baby about 3 weeks ago that has > > charge syndrome. My son Austin also has a heart diese called > > Pulmanary Atresia VSD with a double aortic Arch. The doctors do > > believe that my son is death because of the abnormal structer in the > > ear. His right nostral has a very narrow air way and one ear is > > bigger than the other. They have just put a g-tube in yesturday > > becuase he has reflux really bad. He has been in the hospital since > > he was born on 9-23-06. I am trying to learn as much as I can about > > what to look forword to when he comes home and in the future. My mind > > is going nuts and I have a 2 year old at home also that I am now > > having problems with since I have been going to the hospital and I am > > not around as much as I use to. I have a full time job and I do not > > even know if I would be able to go back to work some time soon or > > not. If anyone has gone thru this please give me some advise or even > > tell me what can I expect. > > > > Thanks Nadine > > > > > > > > -- > ------------ --------- ---- > Vanesa Devetach > vanesa.devetach@ gmail.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 vanessa such a possitive mummy u r love u for it te quiero mucho in spannis to you all xxxxxxxx and mucho besos to you > > Nadine, I don't know how it works in the place where you live, but maybe > you > can get some help from your health/social security system. We pay every > month a private health service (in Buenos Aires, Argentina), and they are > providing us with home health care services. It includes a pediatrician > coming home twice a week, an occupational therapist (once a week), a > kinesiologist (once a week), a language therapist (for swallowing > difficulties), and from the near future onwards, specialists for na's > hearing and visual problems. There are two nurses per day (they work 12 > hours each; there're 5 nurses who take care of my baby). We are going to > have another pediatrician at hospital for both our children (not for at > home > consulting). > > I thought that with these people in charge of na I would be able to > go > back to work (family, doctors, friends, keep telling me to do so). I'm > finding it quite difficult; nurses are highly experienced professionals, > but > all the same I have to remind them certain things, control the way they > feed > na (we've changed her milk for one indicated for babies with allergy > to > cow's milk proteins, with can cause reflux, etc.). Nurses are extremely > nice, but they sort of have some difficulties with calculating quantities, > etc. I hope in some months things will be more " under control " , and I'll > go > back to work some hours a day. > > I know that I have to start doing gym or find some hobby; we can´t be > thinking just about our babies all day long, because we won't be able to > help them very much in the long term: our brain needs some " fresh air " to > go > on working. > > Guille, my eldest son (4 years old) , is quite well, but we decided to > take > him to a psychologist, and things are improving little by little. He loves > his little sister, though sometimes she is not " available " for him. That > is > something that I find quite difficult: to foster siblings contact, so that > they can develop a deep tie. Our family relation with na is mediated > by > nurses (when na was born, we almost have to ask permission to nurses > to > hold our baby in our arms... Does it happen to you?) > > Sleeping deep and enough is something that I find quite hard to achieve, > and > whenever I can, I try take a short nap: I can't think clearly if I am too > tired, and I become bad-humoured. Are you able to rest a bit? > > Though it seems hard to believe, I'm beginning to enjoy life again. When > na looks at me and smiles, she tells me it is possible. > > Vanesa > > On 10/14/06, Nadine <nkatsimmons@...<nkatsimmons%40yahoo.com>> > wrote: > > > > Hi Vanesa and thanks for replying. I am trying to find out and learn as > > much as I can about everything that is wrong with my son Austin. But > with > > the more I learn right now I worry about alot more and try to talk to > others > > in the family about it but they do not understand somethings because > they > > are new at this also. For his hearing the doctors said that from a ct > scan > > they found that the structure in the ears does not have any hearing > > capabilities. Which means that we are all going to need to learn sign > > language. My boyfriend feels that I am kind of rushing the fact of > learning > > it but I feel that we are adults and it would be something that will > take > > longer for us to learn plus we will have to help our families learn sign > > language. Do you think I am pushing this to quick since he is only 3 > weeks > > old. Another things is my other son Jake is only 2 yrs. old and I just > do > > not know how to really explain to him what is going on. He has not even > seen > > his brother except > > for in pictures. I am very lucky when it comes to the doctors that are > > taking care of my son they really did not know much about the charge > > syndrome. I mean he was seen by a team of 12 doctors all from different > > areas in the medical field and these doctors will always be dealing with > my > > son for the rest of his life. It took alot of test in the first 4 days > of > > Austins life before they really told us what was wrong with him. They > told > > us bits and peaces in the begining but then we had a sit down with all > the > > doctors and they told us everything that they have found in the test and > > what it all meant. So they were really good and finding everything they > > needed to know about the syndrome and his heart diese. I am very pleased > > when it comes down to that. I do have a lot of moments when I just do > not > > want to be bothered with and I will cry. But then I think right now I > need > > to be as strong as I can and get thru everything. They found out pretty > > quick that my son was > > having problems with reflux and did a stomach wrap and put the g- tube > in. > > Because my son was getting food in his lungs and was cuasing his oxygen > > saturation levels to drop that is what propted the g-tube. I am glad to > find > > a group of others that i can talk to and hopefully get some answers > with. > > Thanks Nadine mother of Austin 3 weeks > > > > Re: A new mother of a Charger > > > > Nadine, it's a hard time you are living now, but things do improve. > > From my recent own experience as mother to a 6 months old baby > (na), > > the first thing I would encourage you to do is to find help to take care > > of > > your new baby, so that you can spend a little more time at home and try > to > > rest a bit (that's not what I did, and I'm still trying to gain weight > and > > not to feel tired from morning to night). > > > > The best thing that helped na was the CHARGE Foundation manual: My > > husband downloaded and printed it; then I made several copies and gave > > them > > to the doctor, encouraging them to read it, since they know very little > > about the syndrome. Many accepted it gladly, others not... > > > > They can't tell you how much your baby sees or hears untill they have > the > > results of the studies. Don't loose your faith, and keep insisting to go > > forward at quick path (our experience was quite bad at the beginning; > they > > told us that CHARGE was just an academic issue, and that we should focus > > on > > her potentials.. .. They didn't even know that na's crying was due > to > > reflux, and that she had swallowing difficulties, as most chargers). > > > > Some words that a therapist told us, to talk with our elder children: I > > can't spend as much time with you now as you would like me to, because > you > > little brother/sister needs a lot of help from all of us to grow and get > > better. But be sure that I will also be with you if you need me. (We > were > > asked to tell our children at home that their baby sisters/brother had > an > > extremely odd disease, that they -the elder ones- won't ever have. This > > explanation is to make them clear that, if they have a fever o a flu, > they > > are not going to undergo their sibbling's situation). > > > > As other parents from this forum told me, keep reading: being a fast > > learner > > can help your child a lot. But also try to find at least some moments > for > > you. > > > > Nadine, bear in mind that you can count on us. > > Love, > > Vanesa > > > > " El caos es un orden por descifrar. " José Saramago. > > > > > > > > > > Hello my name is Nadine. I just had a baby about 3 weeks ago that has > > > charge syndrome. My son Austin also has a heart diese called > > > Pulmanary Atresia VSD with a double aortic Arch. The doctors do > > > believe that my son is death because of the abnormal structer in the > > > ear. His right nostral has a very narrow air way and one ear is > > > bigger than the other. They have just put a g-tube in yesturday > > > becuase he has reflux really bad. He has been in the hospital since > > > he was born on 9-23-06. I am trying to learn as much as I can about > > > what to look forword to when he comes home and in the future. My mind > > > is going nuts and I have a 2 year old at home also that I am now > > > having problems with since I have been going to the hospital and I am > > > not around as much as I use to. I have a full time job and I do not > > > even know if I would be able to go back to work some time soon or > > > not. If anyone has gone thru this please give me some advise or even > > > tell me what can I expect. > > > > > > Thanks Nadine > > > > > > > > > > > > > -- > > ------------ --------- ---- > > Vanesa Devetach > > vanesa.devetach@ gmail.com > > > > Quote Link to comment Share on other sites More sharing options...
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