Guest guest Posted February 23, 2007 Report Share Posted February 23, 2007 Hello. I don't post much but I read a whole lot. It is wonderful to belong to this community and know there are others out there that understand what we are going through. Need some advice. My daughter is 14 months old and we are waiting to be cleared to repair her TOF. Her cardiologist keeps telling us she needs to gain more weight. However, her GI tells us she won't gain significant weight until after her TOF repair. She is now 11 lb 3 oz (born 1 lb 15 oz). So, has anyone else dealt with this issue. Did anyone have a TOF repair and was there a magic weight your child needed to be? Also, they refuse to clear her for therapy until she has this repair. We are stuck in the waiting game. Frustrated in Florida. Thanks. - M. mother of Anabelle, 14mths. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2007 Report Share Posted February 23, 2007 I know that routine! It's been about five years but had her TOF repair at 15 months of age and she was 13 pounds. I vaguely remember the idea of a magic weight but my brain fails me. was a new child after the repair (she had TOF repair and a new pulmonary artery and valve)! Good luck! 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 (4). Dallas, Texas weight issue Hello. I don't post much but I read a whole lot. It is wonderful to belong to this community and know there are others out there that understand what we are going through. Need some advice. My daughter is 14 months old and we are waiting to be cleared to repair her TOF. Her cardiologist keeps telling us she needs to gain more weight. However, her GI tells us she won't gain significant weight until after her TOF repair. She is now 11 lb 3 oz (born 1 lb 15 oz). So, has anyone else dealt with this issue. Did anyone have a TOF repair and was there a magic weight your child needed to be? Also, they refuse to clear her for therapy until she has this repair. We are stuck in the waiting game. Frustrated in Florida. Thanks. - M. mother of Anabelle, 14mths. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2007 Report Share Posted February 24, 2007 Hello , Our son turns 3 years old this April. He had his TOF repair at Columbia Childrens Hospital in NY in January of 2005 at nine months old. I remember talking to 's cardiologist about " bulking " him up before surgery and trying to select the best time for him in terms of him being in good health when he went to have the surgery. I don't remember any particular weight he needed to be. i believe our son was between 13-18 pounds when he had his surgery (he is tube fed.) I also remember our GI doctor working with us and cardiology on increasing the calories of the formula. at the time we were giving him Enfamil with Lipil and we mixed it to be a 24 calorie formula (I think it is normally 2O calories per ounce...) It helped. Additionally, received therapy from the time he was about 2 months old. ( was full term 8 lbs 4oz at birth but he was a very medically fragile baby.) We requested a PT to work with him in the hospital. He was attached to a million tubes and wires but I specifically remember her moving his arms and legs and showing us some very basic excercises. When he came home at two months he had a PT that came to our house a few times a week. She worked with him on streaches and on neck excercises.... he had tortocollis (which is when the muscles in your neck turn your head to one side... think it has to do with the muscles being tighter or shorter on one side... and it just requires stretching those muscles out) Because of that therapy, looking at today I don't think you could tell he ever had that problem. He ended up back in the hospital again he had high blood pressure, respitory issues, seriously awful reflux, and feeding problems and received OT,PT and Speech therapy all of this before he was five months old. They worked on play to stimulate his mind and they taught us oral motor excercises to stimulate the muscles in his mouth and face...With all of the therapys we always had to watch his coloring, and respitory status...If at any time it seemed like too much for him or he was not feeling well we stopped. (Is Anabelle receiving any therapy at this time? Is Anabelle fed by mouth? Is she trached? Does she have high blood pressure? Respitory issues? How is her muscle tone?) ( had low muscle tone especially in his trunk area, He had/has a g-tube and had a TE Fiscula repair, he had pulmonary hyper tension. He was never trached. He has conductive hearing loss. Vison seems ok) TOF surgery for went well. It was really a turning point. After it. His coloring was better, he had energy and he was like a differnt child. It made a world of difference for him. He started to make more progress... he was able to sit up, breath a little easier etc..... I hope you are able to get some answers from the specialists and move toward setting a date for Anabelles surgery. I would love to hear more about Anabelle...or would be happy to share any further information regarding the TOF surgery, recovery etc... Best regards, (mom to 3! next month) > > Hello. I don't post much but I read a whole lot. It is wonderful to > belong to this community and know there are others out there that > understand what we are going through. Need some advice. My daughter is > 14 months old and we are waiting to be cleared to repair her TOF. Her > cardiologist keeps telling us she needs to gain more weight. However, > her GI tells us she won't gain significant weight until after her TOF > repair. She is now 11 lb 3 oz (born 1 lb 15 oz). So, has anyone else > dealt with this issue. Did anyone have a TOF repair and was there a > magic weight your child needed to be? Also, they refuse to clear her > for therapy until she has this repair. We are stuck in the waiting > game. Frustrated in Florida. Thanks. > > - M. > mother of Anabelle, 14mths. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2007 Report Share Posted February 24, 2007 Our daughter had her first heart repair at 4 lbs b/c there was no choice. However, the 2nd (AV Canal Repair) they wanted to wait until she gained more weight. They need them to be stronger to give them reserve especially if something goes wrong. We were able to wait until she was 1 yr but she was still only 12 lbs. But we could not wait nay longer. Yes, her heart was working very hard, and this caused her to not be able to gain much weight. We used all kinds of additives. She was treated at Columbia Babies in the NEw York. Things did not go very well with her heart surgery, if she was stronger it may have helped. She survived but not after many post surgical complications, several arrests etc. TOday, she is 11 yrs and still under weight, she only weighs 48 lbs and is only 49 inches tall. She is still G-tube fed so we are adding micro - lipids. She needs more orthopedics surgery, however, he is trying to get her to gain more weight again to give her some reserve. I understand the doctors reasoning, however, is still not walking on her own. TO have extra weight makes it more difficult to move. TO me she looks good, a little thin, but basically healthy. Also, since she is tube fed, she only eats good things, all nautural. No cookies, chips, french fries etc! Only soy formula and lots and lots of natural vitamins and supplements. My thinking is would she benefit from mixing up a bunch of fatty non healthy food? No I dont think so. Cathie, mom to 11 yr CHARGEr <BR><BR><BR>**************************************<BR> AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2007 Report Share Posted February 24, 2007 Hi , My son had his TOF repaired at five months old. He was two months premature so he was small for his size (and very fragile) so they definitely had to wait at least some time to get him stronger and bigger. They decided to move forward with the repair at four months old because he was having significant respiratory difficulties and a trach was being discussed as an option. But I really wanted to first see if the repair would be enough to help his breathing...sure enough it was (for the most part!) I know they kept saying the magical weight was about 10 pounds. But I'm sure each hospital has a different policy and they must evaluate the stability of the individual child. Let me tell you though...WOW, what a difference that surgery made for Max. Beforehand, he struggled daily with his respiratory and heart rate....and afterwards it was a complete turnaround. It truly was miraculous! He had no complications either...we were and are very blessed. I wish the same for your lil' girl! mami122006 wrote: Hello. I don't post much but I read a whole lot. It is wonderful to belong to this community and know there are others out there that understand what we are going through. Need some advice. My daughter is 14 months old and we are waiting to be cleared to repair her TOF. Her cardiologist keeps telling us she needs to gain more weight. However, her GI tells us she won't gain significant weight until after her TOF repair. She is now 11 lb 3 oz (born 1 lb 15 oz). So, has anyone else dealt with this issue. Did anyone have a TOF repair and was there a magic weight your child needed to be? Also, they refuse to clear her for therapy until she has this repair. We are stuck in the waiting game. Frustrated in Florida. Thanks. - M. mother of Anabelle, 14mths. Amy McKinley Mom to MIGHTY MAX -- cHARGE, 19 months old (17 months corrected) maxupdate.blogspot.com --------------------------------- 8:00? 8:25? 8:40? Find a flick in no time with theYahoo! Search movie showtime shortcut. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2007 Report Share Posted February 24, 2007 Hi , My son had his TOF repaired at five months old. He was two months premature so he was small for his size (and very fragile) so they definitely had to wait at least some time to get him stronger and bigger. They decided to move forward with the repair at four months old because he was having significant respiratory difficulties and a trach was being discussed as an option. But I really wanted to first see if the repair would be enough to help his breathing...sure enough it was (for the most part!) I know they kept saying the magical weight was about 10 pounds. But I'm sure each hospital has a different policy and they must evaluate the stability of the individual child. Let me tell you though...WOW, what a difference that surgery made for Max. Beforehand, he struggled daily with his respiratory and heart rate....and afterwards it was a complete turnaround. It truly was miraculous! He had no complications either...we were and are very blessed. I wish the same for your lil' girl! mami122006 wrote: Hello. I don't post much but I read a whole lot. It is wonderful to belong to this community and know there are others out there that understand what we are going through. Need some advice. My daughter is 14 months old and we are waiting to be cleared to repair her TOF. Her cardiologist keeps telling us she needs to gain more weight. However, her GI tells us she won't gain significant weight until after her TOF repair. She is now 11 lb 3 oz (born 1 lb 15 oz). So, has anyone else dealt with this issue. Did anyone have a TOF repair and was there a magic weight your child needed to be? Also, they refuse to clear her for therapy until she has this repair. We are stuck in the waiting game. Frustrated in Florida. Thanks. - M. mother of Anabelle, 14mths. Amy McKinley Mom to MIGHTY MAX -- cHARGE, 19 months old (17 months corrected) maxupdate.blogspot.com --------------------------------- Don't be flakey. Get Yahoo! Mail for Mobile and always stay connected to friends. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2007 Report Share Posted February 25, 2007 Thanks so much for everyone sharing their stories. I guess every case is different and we will work it out with our cardiologist. I am glad to hear that all your children are doing well. , Anabelle was born at 26 weeks. She was 1 lb 15 oz. She was diagnosed with TOF, TEF, Colombomas of both optic nerves, hearing loss and we are still working on figuring everything else out. She is now 14 months old and 11 lb 3 oz. At first they told us she needed to be 10 lb and they would proceed with the repair, but they keep pushing it. Then it was 12 to 14 lb. Now they say she may need another shunt and wait to do the repair. Her cardiologist says her heart is strong but he is concerned how her lungs will handle the increase blood flow. She has a shunt put in at 2 months (which closed immediately) and a stent put in 2 days later. She has gone through 6 surgeries and 11 surgical procedures all in the first 11 months. It's only been the last 3 months that she has stayed home for any significant amount of time. She is what you would call medically fragile. However, she is very active. She moves and plays constantly. I don't really know about low muscle tone. No one has mentioned anything to me. I wouldn't be surprised though. She doesn't sit yet but she rolls to her sides. If she can't reach something with her hands she grabs it with the feat and brings it to her hands. She can hold her head up but only for a few seconds at a time (maybe 10)then gets tired and lays back down. She is starting to become more aware of her environment. She doesn't have a trach but is on oxygen. She is jtube fed and meds through the gtube. Also, she has a pulse ox monitoring her oxygen level. Moving around is a challenge but not impossible. Anyway, I would love to help her more but I just don't know how. I really want to get the therapy for her but haven't been able to get cleared yet. Her first 6 months she has way too many respiratory issues and has needed intervention several times so I understand, but she is a different girl now. If I knew exercises to do with her I could at least do them until they decide to move on. She plays all the time and I would love to make her play a little more productive. Thanks for sharing with me and hearing me out. Its great to know someone else understands. - Mother of Anabelle 14 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2007 Report Share Posted February 25, 2007 Hello ....I am a grandma of a beautiful baby girl....Jozlin...and she is 2 weeks old now and still in intensive care at Riley's Hospital in Indianapolis, IN.....We are just learning about this Charge Syndrome too.....It seems that we will have a long road ahead of us with doctors...she is scheduled for surgery on her little heart this Thursday to fix the aorta vein that is in 2 pieces.....then she has another surgery to go through to fix her nasal passage way.....We are also told at 6 months, she will need open heart surgery to fix 2 holes in her heart.....I think that is enough for us to handle at this time, but we know there will be more surgeries and specialists to go through.....wow...First grandbaby and boy is she and the lord testing us....keep in touch ....and I'll be thinking of your family as well.... LaDonna grandma of Jozlin mami122006 wrote: Thanks so much for everyone sharing their stories. I guess every case is different and we will work it out with our cardiologist. I am glad to hear that all your children are doing well. , Anabelle was born at 26 weeks. She was 1 lb 15 oz. She was diagnosed with TOF, TEF, Colombomas of both optic nerves, hearing loss and we are still working on figuring everything else out. She is now 14 months old and 11 lb 3 oz. At first they told us she needed to be 10 lb and they would proceed with the repair, but they keep pushing it. Then it was 12 to 14 lb. Now they say she may need another shunt and wait to do the repair. Her cardiologist says her heart is strong but he is concerned how her lungs will handle the increase blood flow. She has a shunt put in at 2 months (which closed immediately) and a stent put in 2 days later. She has gone through 6 surgeries and 11 surgical procedures all in the first 11 months. It's only been the last 3 months that she has stayed home for any significant amount of time. She is what you would call medically fragile. However, she is very active. She moves and plays constantly. I don't really know about low muscle tone. No one has mentioned anything to me. I wouldn't be surprised though. She doesn't sit yet but she rolls to her sides. If she can't reach something with her hands she grabs it with the feat and brings it to her hands. She can hold her head up but only for a few seconds at a time (maybe 10)then gets tired and lays back down. She is starting to become more aware of her environment. She doesn't have a trach but is on oxygen. She is jtube fed and meds through the gtube. Also, she has a pulse ox monitoring her oxygen level. Moving around is a challenge but not impossible. Anyway, I would love to help her more but I just don't know how. I really want to get the therapy for her but haven't been able to get cleared yet. Her first 6 months she has way too many respiratory issues and has needed intervention several times so I understand, but she is a different girl now. If I knew exercises to do with her I could at least do them until they decide to move on. She plays all the time and I would love to make her play a little more productive. Thanks for sharing with me and hearing me out. Its great to know someone else understands. - Mother of Anabelle 14 months --------------------------------- Everyone is raving about the all-new Yahoo! Mail beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2007 Report Share Posted February 25, 2007 LaDonna, Sounds like you have your hands full right now. We also had numerous surgeries those first few months. There is one thing we can say, these children are resilient. My daughter is our first child and the first grandchild on both sides of the family. She is very loved. Your grandaughter, Jozlin, will be in our prayers. I know how difficult those ICU days can be. We didn't leave the hospital for 6 1/2 months. All I can say is to take it one day at a time and one surgery at a time. Remember, God knows what He is doing and if He chose you to be her grandmother....well...you must be very special. Keep in touch. - mother of Anabelle, 14 months. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2007 Report Share Posted February 26, 2007 - Our cardiology team also wanted Vinny to be 10 pounds. He was born at 8 lbs, but failed to gain any weight. (He was in the NICU the whole time.) They finally decided to do his heart surgery at 3 months (they wanted to wait until he was 6-9 months old) because he was in heart failure. He weighed just about 7 lbs. at that time. (He had a g-tube at 2 months and was fed maximum calories since birth, but failed to gain any weight at all.) Once his heart was fixed (not TOF but VSD, ASD, PDA, mitral valve cleft, and tricuspid regurgitation), he was a new little boy, much like Amy shared about Max. I hope all goes well for sweet Anabelle! ina, mom to Luca (3.5) & Vinny (1.5 w/ cHARgE) --- mami122006 wrote: > Hello. I don't post much but I read a whole lot. It > is wonderful to > belong to this community and know there are others > out there that > understand what we are going through. Need some > advice. My daughter is > 14 months old and we are waiting to be cleared to > repair her TOF. Her > cardiologist keeps telling us she needs to gain more > weight. However, > her GI tells us she won't gain significant weight > until after her TOF > repair. She is now 11 lb 3 oz (born 1 lb 15 oz). So, > has anyone else > dealt with this issue. Did anyone have a TOF repair > and was there a > magic weight your child needed to be? Also, they > refuse to clear her > for therapy until she has this repair. We are stuck > in the waiting > game. Frustrated in Florida. Thanks. > > - M. > mother of Anabelle, 14mths. > > ________________________________________________________________________________\ ____ Be a PS3 game guru. Get your game face on with the latest PS3 news and previews at Yahoo! Games. http://videogames.yahoo.com/platform?platform=120121 Quote Link to comment Share on other sites More sharing options...
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