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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)

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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-.

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Guest guest

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-.

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Guest guest

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-.

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>

> 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

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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

>

>

>

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Guest guest

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

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Guest guest

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-.

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