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 12, 2006 Report Share Posted April 12, 2006 Crystal- Wow. Always something to knock you off your safe little seat, huh? Once you get the date set and things lined up for the boys, you'll start to feel more settled - but I'm sure the anxiety about such a huge procedure won't be over til she's all healed and healthy. Sometimes I try to remind myself that the surgery I think is so complex is really quite mainstream and simple to the surgeons. Maybe this is one of those. 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Crystal- Wow. Always something to knock you off your safe little seat, huh? Once you get the date set and things lined up for the boys, you'll start to feel more settled - but I'm sure the anxiety about such a huge procedure won't be over til she's all healed and healthy. Sometimes I try to remind myself that the surgery I think is so complex is really quite mainstream and simple to the surgeons. Maybe this is one of those. 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Crystal- Wow. Always something to knock you off your safe little seat, huh? Once you get the date set and things lined up for the boys, you'll start to feel more settled - but I'm sure the anxiety about such a huge procedure won't be over til she's all healed and healthy. Sometimes I try to remind myself that the surgery I think is so complex is really quite mainstream and simple to the surgeons. Maybe this is one of those. 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 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 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...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Eva did have a heart surgery at 2 months old and I saw a big differents in her then also. They just clamped the hole but I guess its getting so big the clamp is not doing it job much. That surgery was not open heart they just went under her arm and between her ribs. I hope she gets even stronger after this one and shows us some great things!! Thanks for all the advice and being here for me and Eva! Crystal and Eva (1 year old CHARGER) > 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 Eva did have a heart surgery at 2 months old and I saw a big differents in her then also. They just clamped the hole but I guess its getting so big the clamp is not doing it job much. That surgery was not open heart they just went under her arm and between her ribs. I hope she gets even stronger after this one and shows us some great things!! Thanks for all the advice and being here for me and Eva! Crystal and Eva (1 year old CHARGER) > 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 I know that open heart surgery is very scary, but it is absolutely amazing what a difference it makes in them afterwards. Max was a new and improved version of himself once they fixed his two holes. For some reason before this surgery, I felt so calm and peaceful about it all...I just knew he would be ok. I hope you can find this peace beforehand too, it sure makes a a difference!!! If you want to prepare yourself for what Eva will look like post surgery, check out Max's pics on the blog. Here is that particular entry: http://maxupdate.blogspot.com/2005_11_20_maxupdate_archive.html We will be praying for you every step of the way Crystal! Keep us posted! 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...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 I know that open heart surgery is very scary, but it is absolutely amazing what a difference it makes in them afterwards. Max was a new and improved version of himself once they fixed his two holes. For some reason before this surgery, I felt so calm and peaceful about it all...I just knew he would be ok. I hope you can find this peace beforehand too, it sure makes a a difference!!! If you want to prepare yourself for what Eva will look like post surgery, check out Max's pics on the blog. Here is that particular entry: http://maxupdate.blogspot.com/2005_11_20_maxupdate_archive.html We will be praying for you every step of the way Crystal! Keep us posted! 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...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 wow at least you know that its going to happen keep us posted love u > > I know that open heart surgery is very scary, but it is absolutely amazing > what a difference it makes in them afterwards. Max was a new and improved > version of himself once they fixed his two holes. > > For some reason before this surgery, I felt so calm and peaceful about it > all...I just knew he would be ok. I hope you can find this peace beforehand > too, it sure makes a a difference!!! > > If you want to prepare yourself for what Eva will look like post surgery, > check out Max's pics on the blog. Here is that particular entry: > http://maxupdate.blogspot.com/2005_11_20_maxupdate_archive.html > > We will be praying for you every step of the way Crystal! Keep us posted! > > > 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...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 wow at least you know that its going to happen keep us posted love u > > I know that open heart surgery is very scary, but it is absolutely amazing > what a difference it makes in them afterwards. Max was a new and improved > version of himself once they fixed his two holes. > > For some reason before this surgery, I felt so calm and peaceful about it > all...I just knew he would be ok. I hope you can find this peace beforehand > too, it sure makes a a difference!!! > > If you want to prepare yourself for what Eva will look like post surgery, > check out Max's pics on the blog. Here is that particular entry: > http://maxupdate.blogspot.com/2005_11_20_maxupdate_archive.html > > We will be praying for you every step of the way Crystal! Keep us posted! > > > 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...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 wow at least you know that its going to happen keep us posted love u > > I know that open heart surgery is very scary, but it is absolutely amazing > what a difference it makes in them afterwards. Max was a new and improved > version of himself once they fixed his two holes. > > For some reason before this surgery, I felt so calm and peaceful about it > all...I just knew he would be ok. I hope you can find this peace beforehand > too, it sure makes a a difference!!! > > If you want to prepare yourself for what Eva will look like post surgery, > check out Max's pics on the blog. Here is that particular entry: > http://maxupdate.blogspot.com/2005_11_20_maxupdate_archive.html > > We will be praying for you every step of the way Crystal! Keep us posted! > > > 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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