RE: Just had a baby with charge

[Guest guest]

Dear Sue,

Congrats on your baby girl. I know you've entered unknown

territory--and it is very hard to adjust to. However, life does go an

and you do things and learn things your never in a million years

thought you could ever do. Just brace yourself, keep yourself

educated, lean on whoever you can, use this group--they are wonderful!

My daughter, Carmen is 20 months old and I feel like I've lived a

lifetime since I was where you are. Carmen got a trach at 2.5 weeks

old and still has it. She needed it for many of the same reasons as

your baby. We believe her trach will be out in the next few months.

I've always surveyed moms on this list who have children with trachs

and I don't know one that hasn't eventually had their trach removed.

Some get it removed early and some later. Just make sure you have the

best doctors you can possible have access to. Good luck to you and

your sweet baby. I remember when Carmen was first born wondering if

she would know me or herself. I'm happy to say she is a very smart,

happy girl who has some obstacles, but she is a joy and well worth the

rough path we've been on. Take care!

, mom to Zachary 4.5 years and Carmen 20 months (CHARGE)

>

> Hi Everyone,

>

> I just started reading some e-mails in this group. All your e-mails

> sound like life is so normal and there can still be time for

> relaxation. It is nice to see that.

>

> I just had a baby girl, Keira, two months ago who is a charge baby.

> She came with inner ear malformation, possible swallowing

> difficulties and airway issue (first was trachea web, then sugotal

> stenosis, and now the dr thinks it is tracheomalacia). She is still

> in the NICU.

>

> I think I am still in a stage of quite overwhelming and unsure what I

> should do next. Doctor wants to give her a trach, and I am not sure

> if the trach will come off one day thinking about charge is so

> complicated. I have been surfing on web to see how life can be for a

> charge child. And deep down I feel that a painful and rough journey

> is just started for her.

>

> I look forward to chat with you. Maybe I can eventually find a

> balance from this life change. By the way, we live in north New

> Jersey in US. Hopefully I can find some of you who may be near by.

>

> Sue

>

[Guest guest]

Sue, FYI, my daughter came home from the hospital after 1 week with

the trach (she was 3.5 weeks old at the time). We never have had even

1 hour of nursing support. Carmen does not need Oxygen (O2) and is

only on warm mist at night. I know lots of people say the nursing was

wonderful and I'm sure it was, however, with Carmen, we never knew

what it was like with a nurse and we managed to adjust without one.

Now, Carmen sleeps through the night about 8 to 10 hours without

needing any suctioning and she really does great. My family was

trained at the hospital before we left to do trach changes, care and

cpr for trachs. That was it and we've been totally fine--so I think

it is very specific to your situation if you think you'll need a nurse.

Good luck!

p.s. We were very relieved for Carmen when she got her trach--she was

much more comfortable. We are eager for it to come out, but life

really does go on and you handle it. I have a very proactive ENT at

the U of Michigan who is awesome. I know Carmen's trach will come out

if it is at all possible.

> >

> > > Hi Everyone,

> > >

> > > I just started reading some e-mails in this group.

> > > All your e-mails

> > > sound like life is so normal and there can still

> > be

> > > time for

> > > relaxation. It is nice to see that.

> > >

> > > I just had a baby girl, Keira, two months ago who

> > is

> > > a charge baby.

> > > She came with inner ear malformation, possible

> > > swallowing

> > > difficulties and airway issue (first was trachea

> > > web, then sugotal

> > > stenosis, and now the dr thinks it is

> > > tracheomalacia). She is still

> > > in the NICU.

> > >

> > > I think I am still in a stage of quite

> > overwhelming

> > > and unsure what I

> > > should do next. Doctor wants to give her a trach,

> > > and I am not sure

> > > if the trach will come off one day thinking about

> > > charge is so

> > > complicated. I have been surfing on web to see

> > how

> > > life can be for a

> > > charge child. And deep down I feel that a painful

> > > and rough journey

> > > is just started for her.

> > >

> > > I look forward to chat with you. Maybe I can

> > > eventually find a

> > > balance from this life change. By the way, we live

> > > in north New

> > > Jersey in US. Hopefully I can find some of you

> > who

> > > may be near by.

> > >

> > > Sue

> > >

> > >

> > >

> > >

> > >

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Hi Sue,

Where do you live? I live in Denville NJ ( County), grew up in Bergen

County, before living in Denville we lived in Wanaque up by Ringwood. My

son is almost 9. He's a walking miracle, very bright kid who had tons of

medical issues as a baby and many challenges along the way. It was touch

and go for the first two years. He is now a healthy 9 year old with a lot

of spunk.

If you'd like, I can certainly help to get you to the best people (doctors,

schools etc. who have the most expertise in our kids problems.

As Cathie ('s mom) said, I also go to Columbia Babies Hospital,

basically stay in NY where they see a lot of CHARGE and the problems

associated with it.

Debbie Matasker mom to w/CHARGE 9, 11, andra 6

Just had a baby with charge

Hi Everyone,

I just started reading some e-mails in this group. All your e-mails

sound like life is so normal and there can still be time for

relaxation. It is nice to see that.

I just had a baby girl, Keira, two months ago who is a charge baby.

She came with inner ear malformation, possible swallowing

difficulties and airway issue (first was trachea web, then sugotal

stenosis, and now the dr thinks it is tracheomalacia). She is still

in the NICU.

I think I am still in a stage of quite overwhelming and unsure what I

should do next. Doctor wants to give her a trach, and I am not sure

if the trach will come off one day thinking about charge is so

complicated. I have been surfing on web to see how life can be for a

charge child. And deep down I feel that a painful and rough journey

is just started for her.

I look forward to chat with you. Maybe I can eventually find a

balance from this life change. By the way, we live in north New

Jersey in US. Hopefully I can find some of you who may be near by.

Sue

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

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

(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

sue i can tell you you will find so many answers in here lol and soemtime

you will bwe able to help others xxxx you know last week one of my friends

passed one from hosptial and well today i saw all the people who helped me

to and well a couple of them said how well i was and i am lol and you will

go there to i hope to this stage where i am being so healthy lol hugs ellen

>

> Hi Sue,

>

> Where do you live? I live in Denville NJ ( County), grew up in

> Bergen

> County, before living in Denville we lived in Wanaque up by Ringwood. My

> son is almost 9. He's a walking miracle, very bright kid who had tons of

> medical issues as a baby and many challenges along the way. It was touch

> and go for the first two years. He is now a healthy 9 year old with a lot

> of spunk.

>

> If you'd like, I can certainly help to get you to the best people

> (doctors,

> schools etc. who have the most expertise in our kids problems.

>

> As Cathie ('s mom) said, I also go to Columbia Babies Hospital,

> basically stay in NY where they see a lot of CHARGE and the problems

> associated with it.

>

> Debbie Matasker mom to w/CHARGE 9, 11, andra 6

>

>

> Just had a baby with charge

>

> Hi Everyone,

>

> I just started reading some e-mails in this group. All your e-mails

> sound like life is so normal and there can still be time for

> relaxation. It is nice to see that.

>

> I just had a baby girl, Keira, two months ago who is a charge baby.

> She came with inner ear malformation, possible swallowing

> difficulties and airway issue (first was trachea web, then sugotal

> stenosis, and now the dr thinks it is tracheomalacia). She is still

> in the NICU.

>

> I think I am still in a stage of quite overwhelming and unsure what I

> should do next. Doctor wants to give her a trach, and I am not sure

> if the trach will come off one day thinking about charge is so

> complicated. I have been surfing on web to see how life can be for a

> charge child. And deep down I feel that a painful and rough journey

> is just started for her.

>

> I look forward to chat with you. Maybe I can eventually find a

> balance from this life change. By the way, we live in north New

> Jersey in US. Hopefully I can find some of you who may be near by.

>

> Sue

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

I'm not working much these days so I'm home most of the time. Call when it's

best for you.

> Hi Joanne, That is great. I sure do need tons of help and support to get

> this lift time project started. Is there any good time I can call you?

>

> Sue

>

> Re: Just had a baby with charge

>

>

> Hi Sue--

>

> Welcome to our charge family. There are a few NJ families here who post more

> often than I do--and who probably live closer to you than I do--but if you'd

> like to talk, just give me a call.

>

> Joanne

> mom to Eddie-6

> Edison, NJ

>

>

[Guest guest]

I'm not working much these days so I'm home most of the time. Call when it's

best for you.

> Hi Joanne, That is great. I sure do need tons of help and support to get

> this lift time project started. Is there any good time I can call you?

>

> Sue

>

> Re: Just had a baby with charge

>

>

> Hi Sue--

>

> Welcome to our charge family. There are a few NJ families here who post more

> often than I do--and who probably live closer to you than I do--but if you'd

> like to talk, just give me a call.

>

> Joanne

> mom to Eddie-6

> Edison, NJ

>

>

[Guest guest]

I'm not working much these days so I'm home most of the time. Call when it's

best for you.

> Hi Joanne, That is great. I sure do need tons of help and support to get

> this lift time project started. Is there any good time I can call you?

>

> Sue

>

> Re: Just had a baby with charge

>

>

> Hi Sue--

>

> Welcome to our charge family. There are a few NJ families here who post more

> often than I do--and who probably live closer to you than I do--but if you'd

> like to talk, just give me a call.

>

> Joanne

> mom to Eddie-6

> Edison, NJ

>

>

[Guest guest]

thanks.

Re: Just had a baby with charge

>

>

> Hi Sue--

>

> Welcome to our charge family. There are a few NJ families here who post more

> often than I do--and who probably live closer to you than I do--but if you'd

> like to talk, just give me a call.

>

> Joanne

> mom to Eddie-6

> Edison, NJ

>

>

[Guest guest]

Hi All, Thanks for all your supports since I joined this group. Just want to

tell you that my daughter pass away yesterday. She has returned to God and

being with other little angles. --Sue

Just had a baby with charge

Hi Everyone,

I just started reading some e-mails in this group. All your e-mails

sound like life is so normal and there can still be time for

relaxation. It is nice to see that.

I just had a baby girl, Keira, two months ago who is a charge baby.

She came with inner ear malformation, possible swallowing

difficulties and airway issue (first was trachea web, then sugotal

stenosis, and now the dr thinks it is tracheomalacia). She is still

in the NICU.

I think I am still in a stage of quite overwhelming and unsure what I

should do next. Doctor wants to give her a trach, and I am not sure

if the trach will come off one day thinking about charge is so

complicated. I have been surfing on web to see how life can be for a

charge child. And deep down I feel that a painful and rough journey

is just started for her.

I look forward to chat with you. Maybe I can eventually find a

balance from this life change. By the way, we live in north New

Jersey in US. Hopefully I can find some of you who may be near by.

Sue

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

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

(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Hi All, Thanks for all your supports since I joined this group. Just want to

tell you that my daughter pass away yesterday. She has returned to God and

being with other little angles. --Sue

Just had a baby with charge

Hi Everyone,

I just started reading some e-mails in this group. All your e-mails

sound like life is so normal and there can still be time for

relaxation. It is nice to see that.

I just had a baby girl, Keira, two months ago who is a charge baby.

She came with inner ear malformation, possible swallowing

difficulties and airway issue (first was trachea web, then sugotal

stenosis, and now the dr thinks it is tracheomalacia). She is still

in the NICU.

I think I am still in a stage of quite overwhelming and unsure what I

should do next. Doctor wants to give her a trach, and I am not sure

if the trach will come off one day thinking about charge is so

complicated. I have been surfing on web to see how life can be for a

charge child. And deep down I feel that a painful and rough journey

is just started for her.

I look forward to chat with you. Maybe I can eventually find a

balance from this life change. By the way, we live in north New

Jersey in US. Hopefully I can find some of you who may be near by.

Sue

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

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

(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

how sad for you many hugs and kisses to one of my good hosptial friends went

the other week it can be very sad to loose soemone speical xxxxxx hugs ellen

in aus

>

> Hi All, Thanks for all your supports since I joined this group. Just

> want to tell you that my daughter pass away yesterday. She has returned to

> God and being with other little angles. --Sue

>

> Just had a baby with charge

>

> Hi Everyone,

>

> I just started reading some e-mails in this group. All your e-mails

> sound like life is so normal and there can still be time for

> relaxation. It is nice to see that.

>

> I just had a baby girl, Keira, two months ago who is a charge baby.

> She came with inner ear malformation, possible swallowing

> difficulties and airway issue (first was trachea web, then sugotal

> stenosis, and now the dr thinks it is tracheomalacia). She is still

> in the NICU.

>

> I think I am still in a stage of quite overwhelming and unsure what I

> should do next. Doctor wants to give her a trach, and I am not sure

> if the trach will come off one day thinking about charge is so

> complicated. I have been surfing on web to see how life can be for a

> charge child. And deep down I feel that a painful and rough journey

> is just started for her.

>

> I look forward to chat with you. Maybe I can eventually find a

> balance from this life change. By the way, we live in north New

> Jersey in US. Hopefully I can find some of you who may be near by.

>

> Sue

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

how sad for you many hugs and kisses to one of my good hosptial friends went

the other week it can be very sad to loose soemone speical xxxxxx hugs ellen

in aus

>

> Hi All, Thanks for all your supports since I joined this group. Just

> want to tell you that my daughter pass away yesterday. She has returned to

> God and being with other little angles. --Sue

>

> Just had a baby with charge

>

> Hi Everyone,

>

> I just started reading some e-mails in this group. All your e-mails

> sound like life is so normal and there can still be time for

> relaxation. It is nice to see that.

>

> I just had a baby girl, Keira, two months ago who is a charge baby.

> She came with inner ear malformation, possible swallowing

> difficulties and airway issue (first was trachea web, then sugotal

> stenosis, and now the dr thinks it is tracheomalacia). She is still

> in the NICU.

>

> I think I am still in a stage of quite overwhelming and unsure what I

> should do next. Doctor wants to give her a trach, and I am not sure

> if the trach will come off one day thinking about charge is so

> complicated. I have been surfing on web to see how life can be for a

> charge child. And deep down I feel that a painful and rough journey

> is just started for her.

>

> I look forward to chat with you. Maybe I can eventually find a

> balance from this life change. By the way, we live in north New

> Jersey in US. Hopefully I can find some of you who may be near by.

>

> Sue

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

how sad for you many hugs and kisses to one of my good hosptial friends went

the other week it can be very sad to loose soemone speical xxxxxx hugs ellen

in aus

>

> Hi All, Thanks for all your supports since I joined this group. Just

> want to tell you that my daughter pass away yesterday. She has returned to

> God and being with other little angles. --Sue

>

> Just had a baby with charge

>

> Hi Everyone,

>

> I just started reading some e-mails in this group. All your e-mails

> sound like life is so normal and there can still be time for

> relaxation. It is nice to see that.

>

> I just had a baby girl, Keira, two months ago who is a charge baby.

> She came with inner ear malformation, possible swallowing

> difficulties and airway issue (first was trachea web, then sugotal

> stenosis, and now the dr thinks it is tracheomalacia). She is still

> in the NICU.

>

> I think I am still in a stage of quite overwhelming and unsure what I

> should do next. Doctor wants to give her a trach, and I am not sure

> if the trach will come off one day thinking about charge is so

> complicated. I have been surfing on web to see how life can be for a

> charge child. And deep down I feel that a painful and rough journey

> is just started for her.

>

> I look forward to chat with you. Maybe I can eventually find a

> balance from this life change. By the way, we live in north New

> Jersey in US. Hopefully I can find some of you who may be near by.

>

> Sue

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

I'm so very sorry to hear of your loss. Our thoughts and prayers are with

you.

Joanne & Mike Lent

Edison, NJ

[Guest guest]

I'm so very sorry to hear of your loss. Our thoughts and prayers are with

you.

Joanne & Mike Lent

Edison, NJ

[Guest guest]

I'm so very sorry to hear of your loss. Our thoughts and prayers are with

you.

Joanne & Mike Lent

Edison, NJ

[Guest guest]

We are so sorry for your loss.

Cradled by angels wings to the arms of the loving Father.

in Ma.

[Guest guest]

We are so sorry for your loss.

Cradled by angels wings to the arms of the loving Father.

in Ma.

[Guest guest]

Sue,

I'm so sorry to hear about your daughter. Lots of love coming your way.

Weir & Family

Weir

Visit the Weir family online: http://ca.geocities.com/weirfamilyrogers

Home: lisaweir@...

Work: lisa.weir@...

Phone:

[Guest guest]

Sue,

I'm so sorry to hear about your daughter. Lots of love coming your way.

Weir & Family

Weir

Visit the Weir family online: http://ca.geocities.com/weirfamilyrogers

Home: lisaweir@...

Work: lisa.weir@...

Phone:

[Guest guest]

I am so sorry. Our deepest sympathies to your family.

The Mataskers

RE: Just had a baby with charge

Hi All, Thanks for all your supports since I joined this group. Just want

to tell you that my daughter pass away yesterday. She has returned to God

and being with other little angles. --Sue

[Guest guest]

I am so sorry. Our deepest sympathies to your family.

The Mataskers

RE: Just had a baby with charge

Hi All, Thanks for all your supports since I joined this group. Just want

to tell you that my daughter pass away yesterday. She has returned to God

and being with other little angles. --Sue

[Guest guest]

I am so sorry. Our deepest sympathies to your family.

The Mataskers

RE: Just had a baby with charge

Hi All, Thanks for all your supports since I joined this group. Just want

to tell you that my daughter pass away yesterday. She has returned to God

and being with other little angles. --Sue

[Guest guest]

I am sorry.. Thinking of you and your family all the way from Australia.

[Guest guest]

I am sorry.. Thinking of you and your family all the way from Australia.