Bringing the CHARGE baby home.

[Guest guest]

Trish, Welcome to the group and congratulations on your baby girl. We all

are here to offer support and friendship.

Since she is still in the hospital, has hospital social worker contacted

you? If not, ask to speak to one. They should be able to guide you and

explain any types of programs and agencies that could provide you help. It

will be

over whelming at first, you will need help. Hopefully some nursing care as

well.

Ask the hospital to look into this for you.

Cathie, mom to 11 yr old CHARGEr

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[Guest guest]

My three week old daughter was diagnosed with CHARGE shortly after

birth. We have already made it through the first of many surgeries to

come with a feeding tube being placed, and also stents in her nose to

correct her Choanal Atresia.

In about two weeks she should be ready to come home. I am worried about

how to deal with my older kids. They are four and three, but act more

like twins, they do everything together. I am a single mom so they are

used to having me all to themselves. How do I maintain the crazy

schedule the baby will have, and still make them feel loved and

appreciated at the same time?

Any ideas would be greatly appreciated.

Thanks

Trish

Mother of

DeJay -4

ah -3

Sammy- 3 weeks CHARGE baby

[Guest guest]

Trish, welcome to the list and congratulations on your new baby girl. Do

you have any family or other source of respite or support close by? I'm

wondering if there are any programs available in your area to give you some

help. If you let us know what state/province you are in, some of the list

members might have more specific ideas.

Keep us posted,

http://www.chargesyndrome.info

>

> My three week old daughter was diagnosed with CHARGE shortly after

> birth. We have already made it through the first of many surgeries to

> come with a feeding tube being placed, and also stents in her nose to

> correct her Choanal Atresia.

>

> In about two weeks she should be ready to come home. I am worried about

> how to deal with my older kids. They are four and three, but act more

> like twins, they do everything together. I am a single mom so they are

> used to having me all to themselves. How do I maintain the crazy

> schedule the baby will have, and still make them feel loved and

> appreciated at the same time?

>

> Any ideas would be greatly appreciated.

> Thanks

> Trish

> Mother of

> DeJay -4

> ah -3

> Sammy- 3 weeks CHARGE baby

>

>

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

[Guest guest]

My parents, and a set of grandparents are in the same city as I am so

I have that support to help me out as much as they can. We live in

Reno, NV. Thanks

Trish

> >

> > My three week old daughter was diagnosed with CHARGE shortly

after

> > birth. We have already made it through the first of many

surgeries to

> > come with a feeding tube being placed, and also stents in her

nose to

> > correct her Choanal Atresia.

> >

> > In about two weeks she should be ready to come home. I am worried

about

> > how to deal with my older kids. They are four and three, but act

more

> > like twins, they do everything together. I am a single mom so

they are

> > used to having me all to themselves. How do I maintain the crazy

> > schedule the baby will have, and still make them feel loved and

> > appreciated at the same time?

> >

> > Any ideas would be greatly appreciated.

> > Thanks

> > Trish

> > Mother of

> > DeJay -4

> > ah -3

> > Sammy- 3 weeks CHARGE baby

> >

> >

> >

>

>

>

> --

> " It is far better to grasp the universe as it really is than to

persist in

> delusion, however satisfying and reassuring. " --Carl Sagan

>

>

>

[Guest guest]

Trish, I am also a single mom and know firsthand how demanding our lil' ones

with CHARGE can be. I would HIGHLY recommend looking into nursing. Does she

require oxygen or have any heart/respiratory issues?

With two other kiddos in the house, you need to get as much sleep as possible so

you have the energy and stamina to meet the needs of your baby girl. She will

have lots of therapy appointments, etc. and will need lots of attention.

We are here for you...and welcome to the CHARGE family! We look forward to

learning more about your miracle lil' girl!!!

Amy and Mighty Max

Trish Gray wrote:

My three week old daughter was diagnosed with CHARGE shortly after

birth. We have already made it through the first of many surgeries to

come with a feeding tube being placed, and also stents in her nose to

correct her Choanal Atresia.

In about two weeks she should be ready to come home. I am worried about

how to deal with my older kids. They are four and three, but act more

like twins, they do everything together. I am a single mom so they are

used to having me all to themselves. How do I maintain the crazy

schedule the baby will have, and still make them feel loved and

appreciated at the same time?

Any ideas would be greatly appreciated.

Thanks

Trish

Mother of

DeJay -4

ah -3

Sammy- 3 weeks CHARGE baby

Amy McKinley

Mom to MIGHTY MAX -- cHARGE, 19 months old (17 months corrected)

maxupdate.blogspot.com

---------------------------------

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in the Yahoo! Answers Food & Drink Q & A.

[Guest guest]

Dear Trish,

Welcome! It sounds like your little Sammy girl is doing well. :-)

Since you are in Reno, I thought' I'd mention the conference coming up in

Southern California in July. You may not wish to travel while your baby is so

young, but just in case it works into your plans I wanted to be sure you know

about it. More information is available on the Charge Syndrome website:

http://www.chargesyndrome.org

Take good care of yourself and get the sleep you need. That will be important

not only to you, but to all three of your little ones. I think your two older

kids will enjoy helping out with the baby, but be sure to enlist the help of

those relatives who are eager to help.

When our daughter with CHARGE was born, we gave up most other activities in our

life outside of our children. It was a couple of years before we added some of

those activities back into our typical schedule. We tried hard to be sure that

none of our kids felt left out due to Kendra's complex health needs. For the

most part, this worked. But there were times when it was just unavoidable that

she received attention when the others needed it also. I remember having to

have Kendra transported to the Hospital by ambulance on our older daughter's

birthday. It broke my heart Kendra was so sick. It further broke my heart that

Camille's birthday turned out so unlike what we had planned.

Over time it all worked out. Our older two love and adore Kendra. And she

them.

Best wishes to you and your family.

Mom to Kendra, 20 with CHARGE, , 26, and Camille, 29

Re: Bringing the CHARGE baby home.

My parents, and a set of grandparents are in the same city as I am so

I have that support to help me out as much as they can. We live in

Reno, NV. Thanks

Trish

> >

> > My three week old daughter was diagnosed with CHARGE shortly

after

> > birth. We have already made it through the first of many

surgeries to

> > come with a feeding tube being placed, and also stents in her

nose to

> > correct her Choanal Atresia.

> >

> > In about two weeks she should be ready to come home. I am worried

about

> > how to deal with my older kids. They are four and three, but act

more

> > like twins, they do everything together. I am a single mom so

they are

> > used to having me all to themselves. How do I maintain the crazy

> > schedule the baby will have, and still make them feel loved and

> > appreciated at the same time?

> >

> > Any ideas would be greatly appreciated.

> > Thanks

> > Trish

> > Mother of

> > DeJay -4

> > ah -3

> > Sammy- 3 weeks CHARGE baby

> >

> >

> >

>

>

>

> --

> " It is far better to grasp the universe as it really is than to

persist in

> delusion, however satisfying and reassuring. " --Carl Sagan

>

>

>

[Guest guest]

welcome to our charge fam

>

> Dear Trish,

>

> Welcome! It sounds like your little Sammy girl is doing well. :-)

>

> Since you are in Reno, I thought' I'd mention the conference coming up in

> Southern California in July. You may not wish to travel while your baby is

> so young, but just in case it works into your plans I wanted to be sure you

> know about it. More information is available on the Charge Syndrome website:

> http://www.chargesyndrome.org

>

> Take good care of yourself and get the sleep you need. That will be

> important not only to you, but to all three of your little ones. I think

> your two older kids will enjoy helping out with the baby, but be sure to

> enlist the help of those relatives who are eager to help.

>

> When our daughter with CHARGE was born, we gave up most other activities

> in our life outside of our children. It was a couple of years before we

> added some of those activities back into our typical schedule. We tried hard

> to be sure that none of our kids felt left out due to Kendra's complex

> health needs. For the most part, this worked. But there were times when it

> was just unavoidable that she received attention when the others needed it

> also. I remember having to have Kendra transported to the Hospital by

> ambulance on our older daughter's birthday. It broke my heart Kendra was so

> sick. It further broke my heart that Camille's birthday turned out so unlike

> what we had planned.

>

> Over time it all worked out. Our older two love and adore Kendra. And she

> them.

>

> Best wishes to you and your family.

>

>

> Mom to Kendra, 20 with CHARGE, , 26, and Camille, 29

> Re: Bringing the CHARGE baby home.

>

> My parents, and a set of grandparents are in the same city as I am so

> I have that support to help me out as much as they can. We live in

> Reno, NV. Thanks

> Trish

>

>

> > >

> > > My three week old daughter was diagnosed with CHARGE shortly

> after

> > > birth. We have already made it through the first of many

> surgeries to

> > > come with a feeding tube being placed, and also stents in her

> nose to

> > > correct her Choanal Atresia.

> > >

> > > In about two weeks she should be ready to come home. I am worried

> about

> > > how to deal with my older kids. They are four and three, but act

> more

> > > like twins, they do everything together. I am a single mom so

> they are

> > > used to having me all to themselves. How do I maintain the crazy

> > > schedule the baby will have, and still make them feel loved and

> > > appreciated at the same time?

> > >

> > > Any ideas would be greatly appreciated.

> > > Thanks

> > > Trish

> > > Mother of

> > > DeJay -4

> > > ah -3

> > > Sammy- 3 weeks CHARGE baby

> > >

> > >

> > >

> >

> >

> >

> > --

> > " It is far better to grasp the universe as it really is than to

> persist in

> > delusion, however satisfying and reassuring. " --Carl Sagan

> >

> >

> >

[Guest guest]

Thank you, we have heard about the conference, but of course ot will

all depend on Sammy's health when we get closer.

Trish

Mom of

Dejay -4

ah -3

Sammy - three weeks, CHARGEr

> > > >

> > > > My three week old daughter was diagnosed with CHARGE shortly

> > after

> > > > birth. We have already made it through the first of many

> > surgeries to

> > > > come with a feeding tube being placed, and also stents in her

> > nose to

> > > > correct her Choanal Atresia.

> > > >

> > > > In about two weeks she should be ready to come home. I am

worried

> > about

> > > > how to deal with my older kids. They are four and three, but

act

> > more

> > > > like twins, they do everything together. I am a single mom so

> > they are

> > > > used to having me all to themselves. How do I maintain the

crazy

> > > > schedule the baby will have, and still make them feel loved

and

> > > > appreciated at the same time?

> > > >

> > > > Any ideas would be greatly appreciated.

> > > > Thanks

> > > > Trish

> > > > Mother of

> > > > DeJay -4

> > > > ah -3

> > > > Sammy- 3 weeks CHARGE baby

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > > --

> > > " It is far better to grasp the universe as it really is than to

> > persist in

> > > delusion, however satisfying and reassuring. " --Carl Sagan

> > >

> > >

> > >