Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Well we had to go see the cardiologist on Eva's 1st birthday what a day!! She was given meds to put her to sleep so they could do an echo and we were there for 3 hours!! I am so tired!! Anyway in the next 2 months she will have open heart surgery they are going to call me to give me a date in the next week or so. I am so scared because this is not just some small surgery this is her heart!!! He said the hole she has is getting bigger and they could wait til next year but they dont want her to have to go threw anther winter and have her get sick. So we are doing it soon and hope she can enjoy the summer. He think it was also help her grow and get more strength. He is getting a new peds cardiologist surgery they have do the surgery because he has trained with the #1 cardiology surgin in the country. I hope they call soon I want to know when this is all going to happen and I can get my life in order and find out who will watch the boys while she is in the hospital. Please say a prayer that all goes well. Crystal and Eva (1 year old CHARGER) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 I know heart surgery is scary as ^%$#@! has had 2 open heart surgeries--including one that lasted over 9 hours when she was 15 months and 13kg! She was a different child after that surgery and started to develop, grow, and be happy. Good luck and hang in there! Lori Myers Spouse - Trent, Children - (8), (5, 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 Back for the cardiologist Well we had to go see the cardiologist on Eva's 1st birthday what a day!! She was given meds to put her to sleep so they could do an echo and we were there for 3 hours!! I am so tired!! Anyway in the next 2 months she will have open heart surgery they are going to call me to give me a date in the next week or so. I am so scared because this is not just some small surgery this is her heart!!! He said the hole she has is getting bigger and they could wait til next year but they dont want her to have to go threw anther winter and have her get sick. So we are doing it soon and hope she can enjoy the summer. He think it was also help her grow and get more strength. He is getting a new peds cardiologist surgery they have do the surgery because he has trained with the #1 cardiology surgin in the country. I hope they call soon I want to know when this is all going to happen and I can get my life in order and find out who will watch the boys while she is in the hospital. Please say a prayer that all goes well. Crystal and Eva (1 year old CHARGER) CHARGE SYNDROME LISTSERV PHOTO PAGE: http://www.imagestation.com/album/?id=2117043995 Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 I know heart surgery is scary as ^%$#@! has had 2 open heart surgeries--including one that lasted over 9 hours when she was 15 months and 13kg! She was a different child after that surgery and started to develop, grow, and be happy. Good luck and hang in there! Lori Myers Spouse - Trent, Children - (8), (5, 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 Back for the cardiologist Well we had to go see the cardiologist on Eva's 1st birthday what a day!! She was given meds to put her to sleep so they could do an echo and we were there for 3 hours!! I am so tired!! Anyway in the next 2 months she will have open heart surgery they are going to call me to give me a date in the next week or so. I am so scared because this is not just some small surgery this is her heart!!! He said the hole she has is getting bigger and they could wait til next year but they dont want her to have to go threw anther winter and have her get sick. So we are doing it soon and hope she can enjoy the summer. He think it was also help her grow and get more strength. He is getting a new peds cardiologist surgery they have do the surgery because he has trained with the #1 cardiology surgin in the country. I hope they call soon I want to know when this is all going to happen and I can get my life in order and find out who will watch the boys while she is in the hospital. Please say a prayer that all goes well. Crystal and Eva (1 year old CHARGER) CHARGE SYNDROME LISTSERV PHOTO PAGE: http://www.imagestation.com/album/?id=2117043995 Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 I know heart surgery is scary as ^%$#@! has had 2 open heart surgeries--including one that lasted over 9 hours when she was 15 months and 13kg! She was a different child after that surgery and started to develop, grow, and be happy. Good luck and hang in there! Lori Myers Spouse - Trent, Children - (8), (5, 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 Back for the cardiologist Well we had to go see the cardiologist on Eva's 1st birthday what a day!! She was given meds to put her to sleep so they could do an echo and we were there for 3 hours!! I am so tired!! Anyway in the next 2 months she will have open heart surgery they are going to call me to give me a date in the next week or so. I am so scared because this is not just some small surgery this is her heart!!! He said the hole she has is getting bigger and they could wait til next year but they dont want her to have to go threw anther winter and have her get sick. So we are doing it soon and hope she can enjoy the summer. He think it was also help her grow and get more strength. He is getting a new peds cardiologist surgery they have do the surgery because he has trained with the #1 cardiology surgin in the country. I hope they call soon I want to know when this is all going to happen and I can get my life in order and find out who will watch the boys while she is in the hospital. Please say a prayer that all goes well. Crystal and Eva (1 year old CHARGER) CHARGE SYNDROME LISTSERV PHOTO PAGE: http://www.imagestation.com/album/?id=2117043995 Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 > > At any rate, I'll keep you both in my thoughts. > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > Crystal, Ditto to what Michele said above. Definitely keeping you in my thoughts too. Your post brought back memories of how scary it was when had her surgery 5 years ago to close holes in her heart among other things. It was her second open heart surgery, she was 6 months old. Yes, to the surgeons, it was a routine surgery but to us, of course it was scary as hell. Agree with Lori, after the surgery, she was a very different baby. She had much more energy, fed without struggling to breathe, started to grow better, and generally appeared much better in her colour, breathing, demeanor etc. She continues to be a complete livewire today at age nearly 6. Hope you hear from the hospital soon. You will feel more reassured (yet more scared) when you have a date and you can sort the other kids out. Keeping Eva in my thoughts and sending cyberhugs to you all. What a way to spend her first birthday! But as I said to Lesley, you can celebrate the next one even harder, or have a " successful heart surgery " celebration. We bought a bottle of champaigne on our way back home when she was discharged (but maybe we just found another excuse to drink alchol!). Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Flo, Thanks for making me laugh!! We bought a bottle of champaigne on our way back home when she was discharged(but maybe we just found another excuse to drink alchol!). Crystal and Eva (1st birthday girl CHARGER) > > > > > At any rate, I'll keep you both in my thoughts. > > > > Michele W > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > Crystal, > Ditto to what Michele said above. Definitely keeping you in my thoughts > too. Your post brought back memories of how scary it was when had > her surgery 5 years ago to close holes in her heart among other things. It > was her second open heart surgery, she was 6 months old. Yes, to the > surgeons, it was a routine surgery but to us, of course it was scary as > hell. Agree with Lori, after the surgery, she was a very different baby. > She had much more energy, fed without struggling to breathe, started to > grow better, and generally appeared much better in her colour, breathing, > demeanor etc. She continues to be a complete livewire today at age nearly > 6. > > Hope you hear from the hospital soon. You will feel more reassured (yet > more scared) when you have a date and you can sort the other kids out. > > Keeping Eva in my thoughts and sending cyberhugs to you all. What a way to > spend her first birthday! But as I said to Lesley, you can celebrate the > next one even harder, or have a " successful heart surgery " celebration. We > bought a bottle of champaigne on our way back home when she was discharged > (but maybe we just found another excuse to drink alchol!). > > Flo > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Hi Crystal, I'll keep you and Eva in my thoughts. It's a scary time for us but I'm sure it will make a big difference to Eva. We are on the waiting list for further heart surgery for Jack and it is really taking it's toll on me this time I know it needs to be done but I keep looking at him and thinking how well he looks and that they must have made a mistake. Take care Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Hi Crystal, I tend to lurk, but I've also posted. Raegan is just about 11 months old and when she was 6 months old she had her Open Heart Surgery. We went into the hospital on a Thursday, her surgery was on Friday. She spent Friday after her surgery until Tuesday in the CICU and then returned to the Cardiac Floor and was discharge on Friday. Raegan completely recovered within 3 weeks and with more energy than ever. Since her surgery she has learned to roll over, move all around the floor on her back and belly and she has just about mastered sitting up independently, none of these skills were attempted by her before her heart surgery. Also, she is beginning to show signs of pulling her knees up while on her belly, in order to crawl. Obviously it is a very scary time, but it is amazing what doctors and nurses are capable of and I hope Eva has a successful surgery and a speedy recovery. Also, Happy Birthday to the Big One Year Old!! Judy supermama95 wrote: Well we had to go see the cardiologist on Eva's 1st birthday what a day!! She was given meds to put her to sleep so they could do an echo and we were there for 3 hours!! I am so tired!! Anyway in the next 2 months she will have open heart surgery they are going to call me to give me a date in the next week or so. I am so scared because this is not just some small surgery this is her heart!!! He said the hole she has is getting bigger and they could wait til next year but they dont want her to have to go threw anther winter and have her get sick. So we are doing it soon and hope she can enjoy the summer. He think it was also help her grow and get more strength. He is getting a new peds cardiologist surgery they have do the surgery because he has trained with the #1 cardiology surgin in the country. I hope they call soon I want to know when this is all going to happen and I can get my life in order and find out who will watch the boys while she is in the hospital. Please say a prayer that all goes well. Crystal and Eva (1 year old CHARGER) CHARGE SYNDROME LISTSERV PHOTO PAGE: http://www.imagestation.com/album/?id=2117043995 Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
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