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Let me introduce myself........Jalisco's Story

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My name is Lynaa. I live in Newark,Ohio, a suburb of Columbus. I am

married and have a 13 month old and a 2 1/2 month old (Jalisco).

This past pregnancy I just had the feeling something wasn't 'right'.

All of my preliminary testing came back ok but the further long I

got, the more uncomfortable I became. I was diagnosed with

polyhydramnios around the 32 week of my pregnancy. The pressure was

so painful that I could barely move, let alone walk. I was sent to

the maternal fetal health center after my belly measurements came

back that I was measuring at 39 weeks when I was actually only at 32

weeks. Needless to say, at that moment, I knew something was

definitely wrong. I was told by my OB that probably everything was

ok but I needed to be seen by a specialist anyway...I went and they

did a level 2 ultrasound. They said that everything looked ok so

they sent me on my way...That same night I went into labor and went

to the hospital. I knew that I was only 32 weeks along but I still

didn't worry too much I figured he would be fine just a little

small. Well, my son was born at 5:30 in the morning 11/15 and was

completely blue and not breathing. All at once it seemed like there

were a million people around working on him. One doctor came over as

I was still laying there and told me that they were doing everything

they could to save him but it looked like he wasn't going to make

it. My world seem to stop in that one moment and then I knew that

regardless of what was wrong with him that I wanted this precious

little boy no matter what. They were finally able to stablize him

and he was moved to Childrens Hospital within 2 hours of being born,

where he remains to this day. Since then he has had multiple

surgeries, PDA repair, opening of bilateral chroanal atresia, stent

replacements, stent removals, multiple intubations and

reintubations, trach placement, followup scar tissue removal after

chroanal atresia surgery, upcoming g-tube placement, and upcoming

septal defect surgery. My son has the 'classic' charge ears and have

also been told that he has failed his hearing test but they are

hoping to do a more detailed test. He does not have a classic

columboma but he does have streaks across his retina and they seem

to think that this will not affect vision but time will tell. They

aren't even talking about when they will release him...I just am at

a loss right now. Things weren't supposed to be like this, you know?

I had so many plans for my son and it's so hard to stay positive

sometimes. I know that seems like a selfish thing to say, it's just

that I'm so tired....just tired..I feel like I want answers and

there aren't any to be given. It just breaks my heart every time I

go and see him. I just want to pick him up and run away with him,

even though realistically, I know that they are giving him the best

possible care...Everythings just so overwhelming...The medical bills

are starting to come in and I have so many things to think about

such as homecare, medical bills, employment, my 13 month old, my

husband....Sorry to go on and on but I just needed to get my

feelings out there...

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Hi Lynaa, this is definitely the place to " get it out there " ...we've all

been there and we've experienced the same highs and lows that you talk about

in your post. It must be so hard having them so close together as well!

The first year is the hardest (you will hear this time and again) and it

will get better and life will be normal eventually. I remember hearing this

when Kennedy was the same ag as Jalisco and thinking " yeah, right " ...how can

they know? But they did. They were right. Things did get into a new state

of normal and now we're ready to celebrate her ninth birthday on

Saturday. Just try and take it one day at a time and ask us any questions

at all that you have. Chances are, someone on this list has experienced

something similar and will have a nugget of wisdom for you or at the very

least, a sympathetic ear.

Hugs,

http://www.chargesyndrome.info

>

> My name is Lynaa. I live in Newark,Ohio, a suburb of Columbus. I am

> married and have a 13 month old and a 2 1/2 month old (Jalisco).

> This past pregnancy I just had the feeling something wasn't 'right'.

> All of my preliminary testing came back ok but the further long I

> got, the more uncomfortable I became. I was diagnosed with

> polyhydramnios around the 32 week of my pregnancy. The pressure was

> so painful that I could barely move, let alone walk. I was sent to

> the maternal fetal health center after my belly measurements came

> back that I was measuring at 39 weeks when I was actually only at 32

> weeks. Needless to say, at that moment, I knew something was

> definitely wrong. I was told by my OB that probably everything was

> ok but I needed to be seen by a specialist anyway...I went and they

> did a level 2 ultrasound. They said that everything looked ok so

> they sent me on my way...That same night I went into labor and went

> to the hospital. I knew that I was only 32 weeks along but I still

> didn't worry too much I figured he would be fine just a little

> small. Well, my son was born at 5:30 in the morning 11/15 and was

> completely blue and not breathing. All at once it seemed like there

> were a million people around working on him. One doctor came over as

> I was still laying there and told me that they were doing everything

> they could to save him but it looked like he wasn't going to make

> it. My world seem to stop in that one moment and then I knew that

> regardless of what was wrong with him that I wanted this precious

> little boy no matter what. They were finally able to stablize him

> and he was moved to Childrens Hospital within 2 hours of being born,

> where he remains to this day. Since then he has had multiple

> surgeries, PDA repair, opening of bilateral chroanal atresia, stent

> replacements, stent removals, multiple intubations and

> reintubations, trach placement, followup scar tissue removal after

> chroanal atresia surgery, upcoming g-tube placement, and upcoming

> septal defect surgery. My son has the 'classic' charge ears and have

> also been told that he has failed his hearing test but they are

> hoping to do a more detailed test. He does not have a classic

> columboma but he does have streaks across his retina and they seem

> to think that this will not affect vision but time will tell. They

> aren't even talking about when they will release him...I just am at

> a loss right now. Things weren't supposed to be like this, you know?

> I had so many plans for my son and it's so hard to stay positive

> sometimes. I know that seems like a selfish thing to say, it's just

> that I'm so tired....just tired..I feel like I want answers and

> there aren't any to be given. It just breaks my heart every time I

> go and see him. I just want to pick him up and run away with him,

> even though realistically, I know that they are giving him the best

> possible care...Everythings just so overwhelming...The medical bills

> are starting to come in and I have so many things to think about

> such as homecare, medical bills, employment, my 13 month old, my

> husband....Sorry to go on and on but I just needed to get my

> feelings out there...

>

>

>

--

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

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

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Hello Lynaa and welcome to our CHARGE world. This list will quickly become so

incredibly important to you. Everyone is very kind, supportive and encouraging.

My son is 19 months old but I vividly remember the feelings you are talking

about. He spent six months in the hospital and there were many terrifying

moments. It's truly amazing what these special lil' kiddos endure, yet still

thrive.

If you want, you could visit my blog: maxupdate.blogspot.com and you can see

just how far Maxwell has come. He is a fantastic, adorable lil' boy and has

overcome so much. Is it easy? No, but it's nowhere at all near difficult as I

thought it was going to be.

We are here for you...

Amy and Mighty Max

lynaagudino wrote:

My name is Lynaa. I live in Newark,Ohio, a suburb of Columbus. I am

married and have a 13 month old and a 2 1/2 month old (Jalisco).

This past pregnancy I just had the feeling something wasn't 'right'.

All of my preliminary testing came back ok but the further long I

got, the more uncomfortable I became. I was diagnosed with

polyhydramnios around the 32 week of my pregnancy. The pressure was

so painful that I could barely move, let alone walk. I was sent to

the maternal fetal health center after my belly measurements came

back that I was measuring at 39 weeks when I was actually only at 32

weeks. Needless to say, at that moment, I knew something was

definitely wrong. I was told by my OB that probably everything was

ok but I needed to be seen by a specialist anyway...I went and they

did a level 2 ultrasound. They said that everything looked ok so

they sent me on my way...That same night I went into labor and went

to the hospital. I knew that I was only 32 weeks along but I still

didn't worry too much I figured he would be fine just a little

small. Well, my son was born at 5:30 in the morning 11/15 and was

completely blue and not breathing. All at once it seemed like there

were a million people around working on him. One doctor came over as

I was still laying there and told me that they were doing everything

they could to save him but it looked like he wasn't going to make

it. My world seem to stop in that one moment and then I knew that

regardless of what was wrong with him that I wanted this precious

little boy no matter what. They were finally able to stablize him

and he was moved to Childrens Hospital within 2 hours of being born,

where he remains to this day. Since then he has had multiple

surgeries, PDA repair, opening of bilateral chroanal atresia, stent

replacements, stent removals, multiple intubations and

reintubations, trach placement, followup scar tissue removal after

chroanal atresia surgery, upcoming g-tube placement, and upcoming

septal defect surgery. My son has the 'classic' charge ears and have

also been told that he has failed his hearing test but they are

hoping to do a more detailed test. He does not have a classic

columboma but he does have streaks across his retina and they seem

to think that this will not affect vision but time will tell. They

aren't even talking about when they will release him...I just am at

a loss right now. Things weren't supposed to be like this, you know?

I had so many plans for my son and it's so hard to stay positive

sometimes. I know that seems like a selfish thing to say, it's just

that I'm so tired....just tired..I feel like I want answers and

there aren't any to be given. It just breaks my heart every time I

go and see him. I just want to pick him up and run away with him,

even though realistically, I know that they are giving him the best

possible care...Everythings just so overwhelming...The medical bills

are starting to come in and I have so many things to think about

such as homecare, medical bills, employment, my 13 month old, my

husband....Sorry to go on and on but I just needed to get my

feelings out there...

Amy McKinley

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

maxupdate.blogspot.com

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

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Thanks for sharing your story along with the heartache

and frustration and utter exhaustion that goes right

along with it. You have found the right group of

folks to connect with, Lynaa.

Your story is all too familiar... you are right,

things are not supposed to be this way. Babies are

not supposed to be born sick... but ours are. What

you will see very soon is that though many of them are

so sick for the first year or so, SO MANY of them come

around and show us just how strong and amazing they

are!

My son, now 19 months old, shared many of the

surgeries your child did. He was in the NICU for

about 3 1/2 months of his life. There were a few

times I feared he would never come home. But he did.

And he is one of two joys we have in our life.

Please remain hopeful, Lynaa. Perhaps reading the

stories of some of our kids will let you know that

things really can and often do get better. I hope you

find the support and encouragement from this listserv

that I have found for about the last year. Welcome,

and I hope you keep us posted as to how Jalisco is

doing.

ina, mom to Luca (3.5) & Vinny (1.5 w/ cHARgE)

Southeast region of Michigan

--- lynaagudino wrote:

> My name is Lynaa. I live in Newark,Ohio, a suburb of

> Columbus. I am

> married and have a 13 month old and a 2 1/2 month

> old (Jalisco).

> This past pregnancy I just had the feeling something

> wasn't 'right'.

> All of my preliminary testing came back ok but the

> further long I

> got, the more uncomfortable I became. I was

> diagnosed with

> polyhydramnios around the 32 week of my pregnancy.

> The pressure was

> so painful that I could barely move, let alone walk.

> I was sent to

> the maternal fetal health center after my belly

> measurements came

> back that I was measuring at 39 weeks when I was

> actually only at 32

> weeks. Needless to say, at that moment, I knew

> something was

> definitely wrong. I was told by my OB that probably

> everything was

> ok but I needed to be seen by a specialist

> anyway...I went and they

> did a level 2 ultrasound. They said that everything

> looked ok so

> they sent me on my way...That same night I went into

> labor and went

> to the hospital. I knew that I was only 32 weeks

> along but I still

> didn't worry too much I figured he would be fine

> just a little

> small. Well, my son was born at 5:30 in the morning

> 11/15 and was

> completely blue and not breathing. All at once it

> seemed like there

> were a million people around working on him. One

> doctor came over as

> I was still laying there and told me that they were

> doing everything

> they could to save him but it looked like he wasn't

> going to make

> it. My world seem to stop in that one moment and

> then I knew that

> regardless of what was wrong with him that I wanted

> this precious

> little boy no matter what. They were finally able to

> stablize him

> and he was moved to Childrens Hospital within 2

> hours of being born,

> where he remains to this day. Since then he has had

> multiple

> surgeries, PDA repair, opening of bilateral chroanal

> atresia, stent

> replacements, stent removals, multiple intubations

> and

> reintubations, trach placement, followup scar tissue

> removal after

> chroanal atresia surgery, upcoming g-tube placement,

> and upcoming

> septal defect surgery. My son has the 'classic'

> charge ears and have

> also been told that he has failed his hearing test

> but they are

> hoping to do a more detailed test. He does not have

> a classic

> columboma but he does have streaks across his retina

> and they seem

> to think that this will not affect vision but time

> will tell. They

> aren't even talking about when they will release

> him...I just am at

> a loss right now. Things weren't supposed to be like

> this, you know?

> I had so many plans for my son and it's so hard to

> stay positive

> sometimes. I know that seems like a selfish thing to

> say, it's just

> that I'm so tired....just tired..I feel like I want

> answers and

> there aren't any to be given. It just breaks my

> heart every time I

> go and see him. I just want to pick him up and run

> away with him,

> even though realistically, I know that they are

> giving him the best

> possible care...Everythings just so

> overwhelming...The medical bills

> are starting to come in and I have so many things to

> think about

> such as homecare, medical bills, employment, my 13

> month old, my

> husband....Sorry to go on and on but I just needed

> to get my

> feelings out there...

>

>

________________________________________________________________________________\

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Access over 1 million songs.

http://music.yahoo.com/unlimited

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beautiful name have you found the charge manual yet its great and you just

go to www.chargesyndrome.org and look around theres also soem contacts there

so if u want soem parents in you r area just email marion or maryln get u

two otu there mixed up LOL well it is one of them and they can help and

theres a confence coming up soon if you get incontact with them think its

the first parents thing you can getim in aus and im a charger and i no many

people would fceel like you i havent got the heart stuff but i have cleft

lip palate ears reflux growth stuff and other things im 21 they used to say

i wouldnt survive all the problems but now they say you will survive but we

dotn know how logn ti will take LOL i work and am at a program for people

like me and am getting my jstoma out in feb and now they say ull b ok but we

cant say exact date but they hope and thing 2days yay i cfeed through gtube

and have started eating a bit so i am really doing ok but there r soem who r

much milder than me and soem worse off than me yu just catn tell:) love and

hugs ellen

>

> Thanks for sharing your story along with the heartache

> and frustration and utter exhaustion that goes right

> along with it. You have found the right group of

> folks to connect with, Lynaa.

>

> Your story is all too familiar... you are right,

> things are not supposed to be this way. Babies are

> not supposed to be born sick... but ours are. What

> you will see very soon is that though many of them are

> so sick for the first year or so, SO MANY of them come

> around and show us just how strong and amazing they

> are!

>

> My son, now 19 months old, shared many of the

> surgeries your child did. He was in the NICU for

> about 3 1/2 months of his life. There were a few

> times I feared he would never come home. But he did.

> And he is one of two joys we have in our life.

>

> Please remain hopeful, Lynaa. Perhaps reading the

> stories of some of our kids will let you know that

> things really can and often do get better. I hope you

> find the support and encouragement from this listserv

> that I have found for about the last year. Welcome,

> and I hope you keep us posted as to how Jalisco is

> doing.

>

> ina, mom to Luca (3.5) & Vinny (1.5 w/ cHARgE)

> Southeast region of Michigan

> --- lynaagudino <lynaagudino@... <lynaagudino%40yahoo.com>> wrote:

>

> > My name is Lynaa. I live in Newark,Ohio, a suburb of

> > Columbus. I am

> > married and have a 13 month old and a 2 1/2 month

> > old (Jalisco).

> > This past pregnancy I just had the feeling something

> > wasn't 'right'.

> > All of my preliminary testing came back ok but the

> > further long I

> > got, the more uncomfortable I became. I was

> > diagnosed with

> > polyhydramnios around the 32 week of my pregnancy.

> > The pressure was

> > so painful that I could barely move, let alone walk.

> > I was sent to

> > the maternal fetal health center after my belly

> > measurements came

> > back that I was measuring at 39 weeks when I was

> > actually only at 32

> > weeks. Needless to say, at that moment, I knew

> > something was

> > definitely wrong. I was told by my OB that probably

> > everything was

> > ok but I needed to be seen by a specialist

> > anyway...I went and they

> > did a level 2 ultrasound. They said that everything

> > looked ok so

> > they sent me on my way...That same night I went into

> > labor and went

> > to the hospital. I knew that I was only 32 weeks

> > along but I still

> > didn't worry too much I figured he would be fine

> > just a little

> > small. Well, my son was born at 5:30 in the morning

> > 11/15 and was

> > completely blue and not breathing. All at once it

> > seemed like there

> > were a million people around working on him. One

> > doctor came over as

> > I was still laying there and told me that they were

> > doing everything

> > they could to save him but it looked like he wasn't

> > going to make

> > it. My world seem to stop in that one moment and

> > then I knew that

> > regardless of what was wrong with him that I wanted

> > this precious

> > little boy no matter what. They were finally able to

> > stablize him

> > and he was moved to Childrens Hospital within 2

> > hours of being born,

> > where he remains to this day. Since then he has had

> > multiple

> > surgeries, PDA repair, opening of bilateral chroanal

> > atresia, stent

> > replacements, stent removals, multiple intubations

> > and

> > reintubations, trach placement, followup scar tissue

> > removal after

> > chroanal atresia surgery, upcoming g-tube placement,

> > and upcoming

> > septal defect surgery. My son has the 'classic'

> > charge ears and have

> > also been told that he has failed his hearing test

> > but they are

> > hoping to do a more detailed test. He does not have

> > a classic

> > columboma but he does have streaks across his retina

> > and they seem

> > to think that this will not affect vision but time

> > will tell. They

> > aren't even talking about when they will release

> > him...I just am at

> > a loss right now. Things weren't supposed to be like

> > this, you know?

> > I had so many plans for my son and it's so hard to

> > stay positive

> > sometimes. I know that seems like a selfish thing to

> > say, it's just

> > that I'm so tired....just tired..I feel like I want

> > answers and

> > there aren't any to be given. It just breaks my

> > heart every time I

> > go and see him. I just want to pick him up and run

> > away with him,

> > even though realistically, I know that they are

> > giving him the best

> > possible care...Everythings just so

> > overwhelming...The medical bills

> > are starting to come in and I have so many things to

> > think about

> > such as homecare, medical bills, employment, my 13

> > month old, my

> > husband....Sorry to go on and on but I just needed

> > to get my

> > feelings out there...

> >

> >

>

> __________________________________________________________

> Yahoo! Music Unlimited

> Access over 1 million songs.

> http://music.yahoo.com/unlimited

>

>

>

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Lynaa-

Another welcome to you! I say " ditto " the wonderful responses you've gotten

from others. We've all shared your feelings so you are in good company

here. We all " get it " . There's great comfort in finding a place to share

the joys, sorrows, frustrations, and celebrations with people who understand

how profound and intense all those feelings are.

I remember the days of incredible weariness. And the desire for answers.

Over time, things improved enough that I could get sleep and catch my breath

in between crises. And I learned to live with the unknown. I learned to

accept in a way I never could do before. As said, I thought people who

told me it would be ok were full if it. You know, they must be fooling

themselves, but they'll never fool me. It can't be ok for my baby to have

so many problems. It'll never be ok. But, you know what? Those folks were

right! It wasn't long before I found myself counseling new parents that it

would be ok. " OK " takes on a new meaning, but it is ok. You'll get there

too. Your family will get there. And Jalisco will get there.

Along the way to " ok " , we'll be here to support you with answers to the

questions that have answers. For the questions with no answers, we'll arm

you with more questions to ask the doctors and specialists :-)

Have you found the Foundation website to get the manual? It will be a help

to you and Jalisco's specialists.

Welcome to the CHARGE family!

Michele W

Mom to Aubrie 9 yrs CHaRgE and 15 yrs

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Hello Lynaa,

Welcome to CHARGEland. My name is Crystal and I have 3 kids, 2 boys

and a girl (my CHARGEr). Eva is 21 months old and we knew before she

was born she had some medical issues and we were told she would not

live to be a part of our family. They saw a hold in her heart and

fluid on her brain. As time went on and many ultrasounds later the

fluid went down and they noticed she only had one kidney.

Eva was born at 37 weeks and we had a crowd of doctors and nurses in

our room. I saw her for about 30 secs and they took her away to the

NICU.

Eva has had 2 heart surgeries (one open heart), feeding tube

placement, facial paralysis, hearing loss and colubomas, CHARGE

ears, one kidney, and sleep apnea.

I know how hard it is at first and know that the doctors are doing

all they can for him. All you want to is bring that little bundle

home and hold him all the time. Its very hard!! I cried everytime we

had to go back into the hospital and they tell me " she can go home

tommorrow " then tommorrow would come and they say " sorry we want to

keep her here one more night " I cried so much infront of the nurse.

Don't feel bad about crying its something that you need to do

sometimes and I know with me it made me feel better and after I had

a good cry I could focus more.

Hang in there hun, he will be home before you know it.

Hugs,

Crystal mom to (11), (3), and Eva (21 month old CHARGEr)

wife to Dan in Illinois

>

> My name is Lynaa. I live in Newark,Ohio, a suburb of Columbus. I

am

> married and have a 13 month old and a 2 1/2 month old (Jalisco).

> This past pregnancy I just had the feeling something

wasn't 'right'.

> All of my preliminary testing came back ok but the further long I

> got, the more uncomfortable I became. I was diagnosed with

> polyhydramnios around the 32 week of my pregnancy. The pressure

was

> so painful that I could barely move, let alone walk. I was sent to

> the maternal fetal health center after my belly measurements came

> back that I was measuring at 39 weeks when I was actually only at

32

> weeks. Needless to say, at that moment, I knew something was

> definitely wrong. I was told by my OB that probably everything was

> ok but I needed to be seen by a specialist anyway...I went and

they

> did a level 2 ultrasound. They said that everything looked ok so

> they sent me on my way...That same night I went into labor and

went

> to the hospital. I knew that I was only 32 weeks along but I still

> didn't worry too much I figured he would be fine just a little

> small. Well, my son was born at 5:30 in the morning 11/15 and was

> completely blue and not breathing. All at once it seemed like

there

> were a million people around working on him. One doctor came over

as

> I was still laying there and told me that they were doing

everything

> they could to save him but it looked like he wasn't going to make

> it. My world seem to stop in that one moment and then I knew that

> regardless of what was wrong with him that I wanted this precious

> little boy no matter what. They were finally able to stablize him

> and he was moved to Childrens Hospital within 2 hours of being

born,

> where he remains to this day. Since then he has had multiple

> surgeries, PDA repair, opening of bilateral chroanal atresia,

stent

> replacements, stent removals, multiple intubations and

> reintubations, trach placement, followup scar tissue removal after

> chroanal atresia surgery, upcoming g-tube placement, and upcoming

> septal defect surgery. My son has the 'classic' charge ears and

have

> also been told that he has failed his hearing test but they are

> hoping to do a more detailed test. He does not have a classic

> columboma but he does have streaks across his retina and they seem

> to think that this will not affect vision but time will tell. They

> aren't even talking about when they will release him...I just am

at

> a loss right now. Things weren't supposed to be like this, you

know?

> I had so many plans for my son and it's so hard to stay positive

> sometimes. I know that seems like a selfish thing to say, it's

just

> that I'm so tired....just tired..I feel like I want answers and

> there aren't any to be given. It just breaks my heart every time I

> go and see him. I just want to pick him up and run away with him,

> even though realistically, I know that they are giving him the

best

> possible care...Everythings just so overwhelming...The medical

bills

> are starting to come in and I have so many things to think about

> such as homecare, medical bills, employment, my 13 month old, my

> husband....Sorry to go on and on but I just needed to get my

> feelings out there...

>

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Lynaa

We all understand your feelings. My son JD was a 31 1/2 week twin born with

CHARGE. JD spent the first nine months of his life in the hospital fighting

for everything he could to stay alive. At times we were told that JD wouldnt

make it. But now he is 16 months and doing relatively well. JD has survived

two heart surgeries (PDA, and a major TAPVR repair), a TE fistula repair,

several collapsed lung issues, several instances of MRSA infections, he has

choanal atresia which is yet to be repaired, he has a trach, he has a g-tube and

he has malformed ears. At one time last year I struggled with JD gaining weight

but now over the past months he is gaining weight rapidly and is now 22 lbs

which is great considering he was born at 2 lbs. My wife didnt get to hold JD

until four months after he was born because of fragility. But let me tell you

everyday is a roller coaster ride with him but my wife and I wouldnt trade it

for the world. God has allowed JD to live for a reason and slowly but surely he

is getting better. Yes, we got JD off the vent in October but then he caught

RSV and had to go back on in CPAP mode. Yes, I still struggle with that cause I

know JD is breathing on his own and just needs some pressure from the vent to

alleviate his trachealmalacia. I long for the coming day when the vent leaves

our house, and he is then decannulated. My firm belief is one day JD will walk

and be able to have a good life he just makes improvements in his time. I look

at JD everyday and see such a different child then the one that arrived here in

September 2005. He is so intelligent, and his smile captivates your

imagination.

We can say this. This support group on here is phenomenal. Most of the people

here know alot more than me concerning CHARGE. The main thing this group does

is lend an ear, lend a shoulder to cry on, listen to you and others, and most of

all be there when you need it. CHARGE kids our special kids and it takes one

tough cookie to go through what they go through and I might add it also takes a

tough, strong parent. But let me tell you there is nothing wrong with sharing

your feelings. We have all been there with our children with CHARGE. Most of

the parents here have probably been through more trying times then what my wife

and I experienced and are experiencing. It will get better. I didnt think it

would way back when and people on here kept telling me that every day that our

son thrived would be an improvement and slowly the light would come on and he

would start the slow process of recovery. We arent there yet and have such a

long way to go but JD has come to far in a year and he will continue to move

further. Keep your faith and dont ever give up. We are here for you and we

will be praying for you. God has an answer and in His time His will will be

revealed.

May God continue to be with you and Bless you.

, , Olivia (16 months) and (cHArgEd 16 months)

Let me introduce myself........Jalisco's Story

My name is Lynaa. I live in Newark,Ohio, a suburb of Columbus. I am

married and have a 13 month old and a 2 1/2 month old (Jalisco).

This past pregnancy I just had the feeling something wasn't 'right'.

All of my preliminary testing came back ok but the further long I

got, the more uncomfortable I became. I was diagnosed with

polyhydramnios around the 32 week of my pregnancy. The pressure was

so painful that I could barely move, let alone walk. I was sent to

the maternal fetal health center after my belly measurements came

back that I was measuring at 39 weeks when I was actually only at 32

weeks. Needless to say, at that moment, I knew something was

definitely wrong. I was told by my OB that probably everything was

ok but I needed to be seen by a specialist anyway...I went and they

did a level 2 ultrasound. They said that everything looked ok so

they sent me on my way...That same night I went into labor and went

to the hospital. I knew that I was only 32 weeks along but I still

didn't worry too much I figured he would be fine just a little

small. Well, my son was born at 5:30 in the morning 11/15 and was

completely blue and not breathing. All at once it seemed like there

were a million people around working on him. One doctor came over as

I was still laying there and told me that they were doing everything

they could to save him but it looked like he wasn't going to make

it. My world seem to stop in that one moment and then I knew that

regardless of what was wrong with him that I wanted this precious

little boy no matter what. They were finally able to stablize him

and he was moved to Childrens Hospital within 2 hours of being born,

where he remains to this day. Since then he has had multiple

surgeries, PDA repair, opening of bilateral chroanal atresia, stent

replacements, stent removals, multiple intubations and

reintubations, trach placement, followup scar tissue removal after

chroanal atresia surgery, upcoming g-tube placement, and upcoming

septal defect surgery. My son has the 'classic' charge ears and have

also been told that he has failed his hearing test but they are

hoping to do a more detailed test. He does not have a classic

columboma but he does have streaks across his retina and they seem

to think that this will not affect vision but time will tell. They

aren't even talking about when they will release him...I just am at

a loss right now. Things weren't supposed to be like this, you know?

I had so many plans for my son and it's so hard to stay positive

sometimes. I know that seems like a selfish thing to say, it's just

that I'm so tired....just tired..I feel like I want answers and

there aren't any to be given. It just breaks my heart every time I

go and see him. I just want to pick him up and run away with him,

even though realistically, I know that they are giving him the best

possible care...Everythings just so overwhelming...The medical bills

are starting to come in and I have so many things to think about

such as homecare, medical bills, employment, my 13 month old, my

husband....Sorry to go on and on but I just needed to get my

feelings out there...

________________________________________________________________________

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Welcome, Lynaa! You have found a great group here--everyone listens and

understands what you're going through. Your little Jalisco has been through so

much already! And it has to be wearing on you and your husband, as well. Try

to take things one day at a time and reassure yourself that things will get

better down the road. I know that's hard, but trust me, they will!

We are fellow Buckeyes from Mason, Ohio--just north of Cincinnati. In fact,

we were just at Columbus Children's two days ago for an ophthalmology

appointment! Wish we would have known you were there--we would have stopped by

to say hello and let you meet our daughter . There are several other

families in the Columbus vicinity, too. Some of us had a family get-together in

Columbus last year, and we're hoping to do that again this year, probably in the

summer, if you're interested.

Hope to get a chance to meet you and your family, and hope that little Jalisco

is well and home soon!

, mom to (5)

http://kauffmanlak.blogspot.com/

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

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Posted

Hello Lynna. Welcome :) You dont need to apologise for " rambling " we are hear to

listen.. My name is Belinda im from Australia and am an adult with CHARGE.

belinda

Let me introduce myself........Jalisco's Story

My name is Lynaa. I live in Newark,Ohio, a suburb of Columbus. I am

married and have a 13 month old and a 2 1/2 month old (Jalisco).

This past pregnancy I just had the feeling something wasn't 'right'.

All of my preliminary testing came back ok but the further long I

got, the more uncomfortable I became. I was diagnosed with

polyhydramnios around the 32 week of my pregnancy. The pressure was

so painful that I could barely move, let alone walk. I was sent to

the maternal fetal health center after my belly measurements came

back that I was measuring at 39 weeks when I was actually only at 32

weeks. Needless to say, at that moment, I knew something was

definitely wrong. I was told by my OB that probably everything was

ok but I needed to be seen by a specialist anyway...I went and they

did a level 2 ultrasound. They said that everything looked ok so

they sent me on my way...That same night I went into labor and went

to the hospital. I knew that I was only 32 weeks along but I still

didn't worry too much I figured he would be fine just a little

small. Well, my son was born at 5:30 in the morning 11/15 and was

completely blue and not breathing. All at once it seemed like there

were a million people around working on him. One doctor came over as

I was still laying there and told me that they were doing everything

they could to save him but it looked like he wasn't going to make

it. My world seem to stop in that one moment and then I knew that

regardless of what was wrong with him that I wanted this precious

little boy no matter what. They were finally able to stablize him

and he was moved to Childrens Hospital within 2 hours of being born,

where he remains to this day. Since then he has had multiple

surgeries, PDA repair, opening of bilateral chroanal atresia, stent

replacements, stent removals, multiple intubations and

reintubations, trach placement, followup scar tissue removal after

chroanal atresia surgery, upcoming g-tube placement, and upcoming

septal defect surgery. My son has the 'classic' charge ears and have

also been told that he has failed his hearing test but they are

hoping to do a more detailed test. He does not have a classic

columboma but he does have streaks across his retina and they seem

to think that this will not affect vision but time will tell. They

aren't even talking about when they will release him...I just am at

a loss right now. Things weren't supposed to be like this, you know?

I had so many plans for my son and it's so hard to stay positive

sometimes. I know that seems like a selfish thing to say, it's just

that I'm so tired....just tired..I feel like I want answers and

there aren't any to be given. It just breaks my heart every time I

go and see him. I just want to pick him up and run away with him,

even though realistically, I know that they are giving him the best

possible care...Everythings just so overwhelming...The medical bills

are starting to come in and I have so many things to think about

such as homecare, medical bills, employment, my 13 month old, my

husband....Sorry to go on and on but I just needed to get my

feelings out there...

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Lynaa,

Your pregnancy story sounds so much like mine (I delivered at 32 weeks as

well). My son Evan luckily did not have choanal atresia or a heart defect, but

he had plenty of other issues that required a 4 month hospitalization. He is 18

months old now, and is delayed in all of his milestones but is so different from

the frail little preemie that he was. He has bilateral profound hearing loss

and has hearing aids on both sides.

In terms of finances, the best advice I can give you is to sit down with the

financial coordinator at the hospital. They will probably advise you to apply

for SSI for your son, and while he is an inpatient the amount of family

resources you can have and still get benefits are more generous than once he has

been released. Every state is different in their laws, and ours (Washington

State) had a program my son qualified for to get a secondary medical coupon

through his first year because he had been hospitalized continuously for so

long. Your hospital also probably has a program where they will write off part

or all of what your insurance doesn't cover if your income is below a certain

amount (the hospital is usually pretty generous--we qualified for this, and

don't for pretty much everything else that is income based). The financial

coordinator will know about these types of programs, and is probably your best

source of info. Also, it takes time to get your

application processed and there may be waiting lists...so the sooner you can

get going, the better it will be. Because he is trached, he will be considered

more medically needy/fragile and should qualify for home nursing hours (so if

there is a " plus " to being trached, this is it).

Having a child with multiple health care needs is very over-whelming and it

takes a lot out of you. It's normal to grieve the loss of your dream, the loss

of the child you were supposed to have. It's hard to imagine right now, but

there are rewards that come with parenting a child like Jalisco. A year ago, I

would have though someone telling me this was crazy--but it is true.

I would encourage you to seek out your local Parent-2-Parent group, and find

some other parents who are in a similar boat--it has been so theraputic for our

family to have other parents to vent to and find out about different local

services. It's not uncommon to need more intervention than a support group at

first--I would venture to say that the majority of us have utilized the services

of a councilors/therapists or medication at one time or another.

(mom to Evan, 18 months)

www.babysites.com/sites/skeybunny

lynaagudino wrote:

My name is Lynaa. I live in Newark,Ohio, a suburb of Columbus. I am

married and have a 13 month old and a 2 1/2 month old (Jalisco).

This past pregnancy I just had the feeling something wasn't 'right'.

All of my preliminary testing came back ok but the further long I

got, the more uncomfortable I became. I was diagnosed with

polyhydramnios around the 32 week of my pregnancy. The pressure was

so painful that I could barely move, let alone walk. I was sent to

the maternal fetal health center after my belly measurements came

back that I was measuring at 39 weeks when I was actually only at 32

weeks. Needless to say, at that moment, I knew something was

definitely wrong. I was told by my OB that probably everything was

ok but I needed to be seen by a specialist anyway...I went and they

did a level 2 ultrasound. They said that everything looked ok so

they sent me on my way...That same night I went into labor and went

to the hospital. I knew that I was only 32 weeks along but I still

didn't worry too much I figured he would be fine just a little

small. Well, my son was born at 5:30 in the morning 11/15 and was

completely blue and not breathing. All at once it seemed like there

were a million people around working on him. One doctor came over as

I was still laying there and told me that they were doing everything

they could to save him but it looked like he wasn't going to make

it. My world seem to stop in that one moment and then I knew that

regardless of what was wrong with him that I wanted this precious

little boy no matter what. They were finally able to stablize him

and he was moved to Childrens Hospital within 2 hours of being born,

where he remains to this day. Since then he has had multiple

surgeries, PDA repair, opening of bilateral chroanal atresia, stent

replacements, stent removals, multiple intubations and

reintubations, trach placement, followup scar tissue removal after

chroanal atresia surgery, upcoming g-tube placement, and upcoming

septal defect surgery. My son has the 'classic' charge ears and have

also been told that he has failed his hearing test but they are

hoping to do a more detailed test. He does not have a classic

columboma but he does have streaks across his retina and they seem

to think that this will not affect vision but time will tell. They

aren't even talking about when they will release him...I just am at

a loss right now. Things weren't supposed to be like this, you know?

I had so many plans for my son and it's so hard to stay positive

sometimes. I know that seems like a selfish thing to say, it's just

that I'm so tired....just tired..I feel like I want answers and

there aren't any to be given. It just breaks my heart every time I

go and see him. I just want to pick him up and run away with him,

even though realistically, I know that they are giving him the best

possible care...Everythings just so overwhelming...The medical bills

are starting to come in and I have so many things to think about

such as homecare, medical bills, employment, my 13 month old, my

husband....Sorry to go on and on but I just needed to get my

feelings out there...

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

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Posted
Posted

Welcome to the group and the CHARGE world. I've read the other responses to

your story so I won't repeat them. We had a similar rough start with and

my heart goes out to you. One book that I can not live without to the day is

" Changed by a Child. " It is a beautiful, comforting book written by parents

like us and it helps me get though many a hard day.

Lori Myers

Spouse - Trent, Children - (9), (6, 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 (4).

Dallas, Texas

Let me introduce myself........Jalisco's Story

My name is Lynaa. I live in Newark,Ohio, a suburb of Columbus. I am

married and have a 13 month old and a 2 1/2 month old (Jalisco).

This past pregnancy I just had the feeling something wasn't 'right'.

All of my preliminary testing came back ok but the further long I

got, the more uncomfortable I became. I was diagnosed with

polyhydramnios around the 32 week of my pregnancy. The pressure was

so painful that I could barely move, let alone walk. I was sent to

the maternal fetal health center after my belly measurements came

back that I was measuring at 39 weeks when I was actually only at 32

weeks. Needless to say, at that moment, I knew something was

definitely wrong. I was told by my OB that probably everything was

ok but I needed to be seen by a specialist anyway...I went and they

did a level 2 ultrasound. They said that everything looked ok so

they sent me on my way...That same night I went into labor and went

to the hospital. I knew that I was only 32 weeks along but I still

didn't worry too much I figured he would be fine just a little

small. Well, my son was born at 5:30 in the morning 11/15 and was

completely blue and not breathing. All at once it seemed like there

were a million people around working on him. One doctor came over as

I was still laying there and told me that they were doing everything

they could to save him but it looked like he wasn't going to make

it. My world seem to stop in that one moment and then I knew that

regardless of what was wrong with him that I wanted this precious

little boy no matter what. They were finally able to stablize him

and he was moved to Childrens Hospital within 2 hours of being born,

where he remains to this day. Since then he has had multiple

surgeries, PDA repair, opening of bilateral chroanal atresia, stent

replacements, stent removals, multiple intubations and

reintubations, trach placement, followup scar tissue removal after

chroanal atresia surgery, upcoming g-tube placement, and upcoming

septal defect surgery. My son has the 'classic' charge ears and have

also been told that he has failed his hearing test but they are

hoping to do a more detailed test. He does not have a classic

columboma but he does have streaks across his retina and they seem

to think that this will not affect vision but time will tell. They

aren't even talking about when they will release him...I just am at

a loss right now. Things weren't supposed to be like this, you know?

I had so many plans for my son and it's so hard to stay positive

sometimes. I know that seems like a selfish thing to say, it's just

that I'm so tired....just tired..I feel like I want answers and

there aren't any to be given. It just breaks my heart every time I

go and see him. I just want to pick him up and run away with him,

even though realistically, I know that they are giving him the best

possible care...Everythings just so overwhelming...The medical bills

are starting to come in and I have so many things to think about

such as homecare, medical bills, employment, my 13 month old, my

husband....Sorry to go on and on but I just needed to get my

feelings out there...

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Hi Lynna,

You have gotten so many wonderful responses with so much good advice. One

thing I could relate with you is the picking up your baby and running away.

I had that feeling 10 years ago w/ my oldest CHARGEr and I still do w/ my 5

mo old CHARGEr. Standing over their hospital bed watching them fight is one

of the hardest, loneliest feelings there is for me. We are all with you in

spirit. * I just wish, for you,** and every mom on here's sake, you could

feel all of our arms around your shoulders right now supporting you and

your little one.This WILL get better. Believe that. You have just become

part of the best family(CHARGE) that there could possibly be. *

**

**

**

*Hang in there,*

Corrie mom to Peyton 10 CHARGE, Cy 7, 4 and Tate 5 mos.

CHARGE

>

> My name is Lynaa. I live in Newark,Ohio, a suburb of Columbus. I am

> married and have a 13 month old and a 2 1/2 month old (Jalisco).

> This past pregnancy I just had the feeling something wasn't 'right'.

> All of my preliminary testing came back ok but the further long I

> got, the more uncomfortable I became. I was diagnosed with

> polyhydramnios around the 32 week of my pregnancy. The pressure was

> so painful that I could barely move, let alone walk. I was sent to

> the maternal fetal health center after my belly measurements came

> back that I was measuring at 39 weeks when I was actually only at 32

> weeks. Needless to say, at that moment, I knew something was

> definitely wrong. I was told by my OB that probably everything was

> ok but I needed to be seen by a specialist anyway...I went and they

> did a level 2 ultrasound. They said that everything looked ok so

> they sent me on my way...That same night I went into labor and went

> to the hospital. I knew that I was only 32 weeks along but I still

> didn't worry too much I figured he would be fine just a little

> small. Well, my son was born at 5:30 in the morning 11/15 and was

> completely blue and not breathing. All at once it seemed like there

> were a million people around working on him. One doctor came over as

> I was still laying there and told me that they were doing everything

> they could to save him but it looked like he wasn't going to make

> it. My world seem to stop in that one moment and then I knew that

> regardless of what was wrong with him that I wanted this precious

> little boy no matter what. They were finally able to stablize him

> and he was moved to Childrens Hospital within 2 hours of being born,

> where he remains to this day. Since then he has had multiple

> surgeries, PDA repair, opening of bilateral chroanal atresia, stent

> replacements, stent removals, multiple intubations and

> reintubations, trach placement, followup scar tissue removal after

> chroanal atresia surgery, upcoming g-tube placement, and upcoming

> septal defect surgery. My son has the 'classic' charge ears and have

> also been told that he has failed his hearing test but they are

> hoping to do a more detailed test. He does not have a classic

> columboma but he does have streaks across his retina and they seem

> to think that this will not affect vision but time will tell. They

> aren't even talking about when they will release him...I just am at

> a loss right now. Things weren't supposed to be like this, you know?

> I had so many plans for my son and it's so hard to stay positive

> sometimes. I know that seems like a selfish thing to say, it's just

> that I'm so tired....just tired..I feel like I want answers and

> there aren't any to be given. It just breaks my heart every time I

> go and see him. I just want to pick him up and run away with him,

> even though realistically, I know that they are giving him the best

> possible care...Everythings just so overwhelming...The medical bills

> are starting to come in and I have so many things to think about

> such as homecare, medical bills, employment, my 13 month old, my

> husband....Sorry to go on and on but I just needed to get my

> feelings out there...

>

>

>

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Posted
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corrie we call them cyber hugs and big cyber hugs to you all the way from

aus xxxxxxxxxxxxxxxxxxxxxxxxx

>

> Hi Lynna,

>

> You have gotten so many wonderful responses with so much good advice. One

> thing I could relate with you is the picking up your baby and running

> away.

> I had that feeling 10 years ago w/ my oldest CHARGEr and I still do w/ my

> 5

> mo old CHARGEr. Standing over their hospital bed watching them fight is

> one

> of the hardest, loneliest feelings there is for me. We are all with you in

> spirit. * I just wish, for you,** and every mom on here's sake, you could

> feel all of our arms around your shoulders right now supporting you and

> your little one.This WILL get better. Believe that. You have just become

> part of the best family(CHARGE) that there could possibly be. *

> **

> **

>

> **

>

> *Hang in there,*

> Corrie mom to Peyton 10 CHARGE, Cy 7, 4 and Tate 5 mos.

> CHARGE

> On 1/23/07, lynaagudino <lynaagudino@... <lynaagudino%40yahoo.com>>

> wrote:

> >

> > My name is Lynaa. I live in Newark,Ohio, a suburb of Columbus. I am

> > married and have a 13 month old and a 2 1/2 month old (Jalisco).

> > This past pregnancy I just had the feeling something wasn't 'right'.

> > All of my preliminary testing came back ok but the further long I

> > got, the more uncomfortable I became. I was diagnosed with

> > polyhydramnios around the 32 week of my pregnancy. The pressure was

> > so painful that I could barely move, let alone walk. I was sent to

> > the maternal fetal health center after my belly measurements came

> > back that I was measuring at 39 weeks when I was actually only at 32

> > weeks. Needless to say, at that moment, I knew something was

> > definitely wrong. I was told by my OB that probably everything was

> > ok but I needed to be seen by a specialist anyway...I went and they

> > did a level 2 ultrasound. They said that everything looked ok so

> > they sent me on my way...That same night I went into labor and went

> > to the hospital. I knew that I was only 32 weeks along but I still

> > didn't worry too much I figured he would be fine just a little

> > small. Well, my son was born at 5:30 in the morning 11/15 and was

> > completely blue and not breathing. All at once it seemed like there

> > were a million people around working on him. One doctor came over as

> > I was still laying there and told me that they were doing everything

> > they could to save him but it looked like he wasn't going to make

> > it. My world seem to stop in that one moment and then I knew that

> > regardless of what was wrong with him that I wanted this precious

> > little boy no matter what. They were finally able to stablize him

> > and he was moved to Childrens Hospital within 2 hours of being born,

> > where he remains to this day. Since then he has had multiple

> > surgeries, PDA repair, opening of bilateral chroanal atresia, stent

> > replacements, stent removals, multiple intubations and

> > reintubations, trach placement, followup scar tissue removal after

> > chroanal atresia surgery, upcoming g-tube placement, and upcoming

> > septal defect surgery. My son has the 'classic' charge ears and have

> > also been told that he has failed his hearing test but they are

> > hoping to do a more detailed test. He does not have a classic

> > columboma but he does have streaks across his retina and they seem

> > to think that this will not affect vision but time will tell. They

> > aren't even talking about when they will release him...I just am at

> > a loss right now. Things weren't supposed to be like this, you know?

> > I had so many plans for my son and it's so hard to stay positive

> > sometimes. I know that seems like a selfish thing to say, it's just

> > that I'm so tired....just tired..I feel like I want answers and

> > there aren't any to be given. It just breaks my heart every time I

> > go and see him. I just want to pick him up and run away with him,

> > even though realistically, I know that they are giving him the best

> > possible care...Everythings just so overwhelming...The medical bills

> > are starting to come in and I have so many things to think about

> > such as homecare, medical bills, employment, my 13 month old, my

> > husband....Sorry to go on and on but I just needed to get my

> > feelings out there...

> >

> >

> >

>

>

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Posted
Posted

aww Ellen, that made me feel so much better! It's been a rough day Tatewise,

he's been freaking me out.. A big cyberhug back to you!

Love from MO,

Corrie

>

> corrie we call them cyber hugs and big cyber hugs to you all the way

> from

> aus xxxxxxxxxxxxxxxxxxxxxxxxx

>

> On 25/01/07, Mike & Corrie Young <mcyoung6@...<mcyoung6%40gmail.com>>

> wrote:

> >

> > Hi Lynna,

> >

> > You have gotten so many wonderful responses with so much good advice.

> One

> > thing I could relate with you is the picking up your baby and running

> > away.

> > I had that feeling 10 years ago w/ my oldest CHARGEr and I still do w/

> my

> > 5

> > mo old CHARGEr. Standing over their hospital bed watching them fight is

> > one

> > of the hardest, loneliest feelings there is for me. We are all with you

> in

> > spirit. * I just wish, for you,** and every mom on here's sake, you

> could

> > feel all of our arms around your shoulders right now supporting you and

> > your little one.This WILL get better. Believe that. You have just become

> > part of the best family(CHARGE) that there could possibly be. *

> > **

> > **

> >

> > **

> >

> > *Hang in there,*

> > Corrie mom to Peyton 10 CHARGE, Cy 7, 4 and Tate 5 mos.

> > CHARGE

> > On 1/23/07, lynaagudino <lynaagudino@...

<lynaagudino%40yahoo.com><lynaagudino%

> 40yahoo.com>>

> > wrote:

> > >

> > > My name is Lynaa. I live in Newark,Ohio, a suburb of Columbus. I am

> > > married and have a 13 month old and a 2 1/2 month old (Jalisco).

> > > This past pregnancy I just had the feeling something wasn't 'right'.

> > > All of my preliminary testing came back ok but the further long I

> > > got, the more uncomfortable I became. I was diagnosed with

> > > polyhydramnios around the 32 week of my pregnancy. The pressure was

> > > so painful that I could barely move, let alone walk. I was sent to

> > > the maternal fetal health center after my belly measurements came

> > > back that I was measuring at 39 weeks when I was actually only at 32

> > > weeks. Needless to say, at that moment, I knew something was

> > > definitely wrong. I was told by my OB that probably everything was

> > > ok but I needed to be seen by a specialist anyway...I went and they

> > > did a level 2 ultrasound. They said that everything looked ok so

> > > they sent me on my way...That same night I went into labor and went

> > > to the hospital. I knew that I was only 32 weeks along but I still

> > > didn't worry too much I figured he would be fine just a little

> > > small. Well, my son was born at 5:30 in the morning 11/15 and was

> > > completely blue and not breathing. All at once it seemed like there

> > > were a million people around working on him. One doctor came over as

> > > I was still laying there and told me that they were doing everything

> > > they could to save him but it looked like he wasn't going to make

> > > it. My world seem to stop in that one moment and then I knew that

> > > regardless of what was wrong with him that I wanted this precious

> > > little boy no matter what. They were finally able to stablize him

> > > and he was moved to Childrens Hospital within 2 hours of being born,

> > > where he remains to this day. Since then he has had multiple

> > > surgeries, PDA repair, opening of bilateral chroanal atresia, stent

> > > replacements, stent removals, multiple intubations and

> > > reintubations, trach placement, followup scar tissue removal after

> > > chroanal atresia surgery, upcoming g-tube placement, and upcoming

> > > septal defect surgery. My son has the 'classic' charge ears and have

> > > also been told that he has failed his hearing test but they are

> > > hoping to do a more detailed test. He does not have a classic

> > > columboma but he does have streaks across his retina and they seem

> > > to think that this will not affect vision but time will tell. They

> > > aren't even talking about when they will release him...I just am at

> > > a loss right now. Things weren't supposed to be like this, you know?

> > > I had so many plans for my son and it's so hard to stay positive

> > > sometimes. I know that seems like a selfish thing to say, it's just

> > > that I'm so tired....just tired..I feel like I want answers and

> > > there aren't any to be given. It just breaks my heart every time I

> > > go and see him. I just want to pick him up and run away with him,

> > > even though realistically, I know that they are giving him the best

> > > possible care...Everythings just so overwhelming...The medical bills

> > > are starting to come in and I have so many things to think about

> > > such as homecare, medical bills, employment, my 13 month old, my

> > > husband....Sorry to go on and on but I just needed to get my

> > > feelings out there...

> > >

> > >

> > >

> >

> >

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Posted
Posted

DEAR LYNAA, is Jalisco at Cincinnati Children's Hospital? That is where I

take my 15 month old charger, Chrystine. We're from just outside ton, WV.

The hospital was recently ranked 8th in the nation by Parents magazine... I

relate all to well to your feelings, Lynaa as I am sure many here do. You

have found a home here. We don't mind if you go on and on, really. My daughter

has bilateral optical nerve colobomas, she is virtually blind in her left eye,

she was born with 2 heart defects, one has spontaneously closed and the

other is a waiting game and she is facing open heart surgery this spring. She

didn't have atrsia of the chronae. However, she has ben tube fed since about

3-4

weeks of age due to failure to thrive and gastric reflux/paralysis. She also

has PT and OT cause she doesn't walk yet, but she did start to crawl on

Christmas Eve. It was such a wonderful gift for our family! My daughter,

Chrystine was born in renal failure and will need a kidney transplant one day

soon,

and also has grade 5 vesicoureteral reflux. She has mild hearing loss in her

left ear.... We're always getting new info about her. It is alot, Lynaa. We

also have something else in common!!! We have children about 11 months apart.

Chrystine has a little brother, Silas 11 months and 1 day younger than her...

good grief was he a surprise. I also have a 4 year old daughter. I want you

to have this poem, too. WELCOME TO THE GROUP!!!! Here is the link to my

myspace, it has a slideshow with a buncha pics of my family, including

Chrystine

http://www.myspace.com/chrystalsbabyhope

A meeting was held quite far from earth,

It’s time again for another birth.

Said the angels to the Lord above;

This special child will need much love

His progress may be very slow,

Accomplishments he may not show.

And he’ll require extra care,

From the folks he meets down there,

He may not run or laugh or play,

His thoughts may seem quite far away.

In many ways he won’t adapt, and he’ll

Be known as handicapped.

So let’s be careful where he is sent, we want

His life to be content.

Please, Lord, find the good friends who, will

Do a special job for you.

They will not realize it right away, the leading

Role they’re asked to play.

But with this child sent from above, comes

Stronger faith and richer love.

And soon they will know the privileges given,

In caring for their gift from Heaven.

Their precious charge, so meek and mild, in

Heaven’s very special child.

your friend,

chrystal

mama to

arleigh-4

chrystine CHaRGE+ type 2 diabetes+ chronic kidney disease 15 months

and silas michael 4 months

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Lynaa,

Welcome to the list! I cannot offer any words of wisdom, as I am not

a parent of a CHARGEr (although I am the parent of a little boy, with

one on the way). I am a physical therapist who joined the list a few

years ago when I was working with a child with CHARGE. I have worked

with a few over the years, and just really like the wisdom of the

group.

My husband is from Newark too! We used to live in Columbus, but now

live in upstate NY. We visit my mother in law in Newark at least

once a year. I'm sure we know some of the same people! I know there

are a few other families from the Columbus area on the list too, so

hopefully they can be of some support to you.

Congratulations on the birth of your son. Despite this trying time,

it is a wonderful thing!

Kate (PT in NY, wife to a Newark native)

>

> My name is Lynaa. I live in Newark,Ohio, a suburb of Columbus. I am

> married and have a 13 month old and a 2 1/2 month old (Jalisco).

> This past pregnancy I just had the feeling something

wasn't 'right'.

> All of my preliminary testing came back ok but the further long I

> got, the more uncomfortable I became. I was diagnosed with

> polyhydramnios around the 32 week of my pregnancy. The pressure was

> so painful that I could barely move, let alone walk. I was sent to

> the maternal fetal health center after my belly measurements came

> back that I was measuring at 39 weeks when I was actually only at

32

> weeks. Needless to say, at that moment, I knew something was

> definitely wrong. I was told by my OB that probably everything was

> ok but I needed to be seen by a specialist anyway...I went and they

> did a level 2 ultrasound. They said that everything looked ok so

> they sent me on my way...That same night I went into labor and went

> to the hospital. I knew that I was only 32 weeks along but I still

> didn't worry too much I figured he would be fine just a little

> small. Well, my son was born at 5:30 in the morning 11/15 and was

> completely blue and not breathing. All at once it seemed like there

> were a million people around working on him. One doctor came over

as

> I was still laying there and told me that they were doing

everything

> they could to save him but it looked like he wasn't going to make

> it. My world seem to stop in that one moment and then I knew that

> regardless of what was wrong with him that I wanted this precious

> little boy no matter what. They were finally able to stablize him

> and he was moved to Childrens Hospital within 2 hours of being

born,

> where he remains to this day. Since then he has had multiple

> surgeries, PDA repair, opening of bilateral chroanal atresia, stent

> replacements, stent removals, multiple intubations and

> reintubations, trach placement, followup scar tissue removal after

> chroanal atresia surgery, upcoming g-tube placement, and upcoming

> septal defect surgery. My son has the 'classic' charge ears and

have

> also been told that he has failed his hearing test but they are

> hoping to do a more detailed test. He does not have a classic

> columboma but he does have streaks across his retina and they seem

> to think that this will not affect vision but time will tell. They

> aren't even talking about when they will release him...I just am at

> a loss right now. Things weren't supposed to be like this, you

know?

> I had so many plans for my son and it's so hard to stay positive

> sometimes. I know that seems like a selfish thing to say, it's just

> that I'm so tired....just tired..I feel like I want answers and

> there aren't any to be given. It just breaks my heart every time I

> go and see him. I just want to pick him up and run away with him,

> even though realistically, I know that they are giving him the best

> possible care...Everythings just so overwhelming...The medical

bills

> are starting to come in and I have so many things to think about

> such as homecare, medical bills, employment, my 13 month old, my

> husband....Sorry to go on and on but I just needed to get my

> feelings out there...

>

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>

> My name is Lynaa. I live in Newark,Ohio, a suburb of Columbus. I

am

> married and have a 13 month old and a 2 1/2 month old (Jalisco).

> This past pregnancy I just had the feeling something

wasn't 'right'.

> All of my preliminary testing came back ok but the further long I

> got, the more uncomfortable I became. I was diagnosed with

> polyhydramnios around the 32 week of my pregnancy. The pressure

was

> so painful that I could barely move, let alone walk. I was sent to

> the maternal fetal health center after my belly measurements came

> back that I was measuring at 39 weeks when I was actually only at

32

> weeks. Needless to say, at that moment, I knew something was

> definitely wrong. I was told by my OB that probably everything was

> ok but I needed to be seen by a specialist anyway...I went and

they

> did a level 2 ultrasound. They said that everything looked ok so

> they sent me on my way...That same night I went into labor and

went

> to the hospital. I knew that I was only 32 weeks along but I still

> didn't worry too much I figured he would be fine just a little

> small. Well, my son was born at 5:30 in the morning 11/15 and was

> completely blue and not breathing. All at once it seemed like

there

> were a million people around working on him. One doctor came over

as

> I was still laying there and told me that they were doing

everything

> they could to save him but it looked like he wasn't going to make

> it. My world seem to stop in that one moment and then I knew that

> regardless of what was wrong with him that I wanted this precious

> little boy no matter what. They were finally able to stablize him

> and he was moved to Childrens Hospital within 2 hours of being

born,

> where he remains to this day. Since then he has had multiple

> surgeries, PDA repair, opening of bilateral chroanal atresia,

stent

> replacements, stent removals, multiple intubations and

> reintubations, trach placement, followup scar tissue removal after

> chroanal atresia surgery, upcoming g-tube placement, and upcoming

> septal defect surgery. My son has the 'classic' charge ears and

have

> also been told that he has failed his hearing test but they are

> hoping to do a more detailed test. He does not have a classic

> columboma but he does have streaks across his retina and they seem

> to think that this will not affect vision but time will tell. They

> aren't even talking about when they will release him...I just am

at

> a loss right now. Things weren't supposed to be like this, you

know?

> I had so many plans for my son and it's so hard to stay positive

> sometimes. I know that seems like a selfish thing to say, it's

just

> that I'm so tired....just tired..I feel like I want answers and

> there aren't any to be given. It just breaks my heart every time I

> go and see him. I just want to pick him up and run away with him,

> even though realistically, I know that they are giving him the

best

> possible care...Everythings just so overwhelming...The medical

bills

> are starting to come in and I have so many things to think about

> such as homecare, medical bills, employment, my 13 month old, my

> husband....Sorry to go on and on but I just needed to get my

> feelings out there...

>

Dear Lynaa,

Welcome to the group..you will get wonderful advice here and also

many words of wisdom. As a parent of a soon to be 7 yr. old charger

I can understand what your going through. My son has had 3

open heart surgeries..his first at three days old. He is profoundly

deaf..right side choanal atresia ,colobomas and many other CHARGE

related issues .Take a deep breath, you have been thru so much and

everything your feeling is normal..so dont feel a need to apologize

for your feelings...we've all been there. Right now your main

concern is Jalisco. I remember when the medical bills started coming

in and I still didnt know when would be coming home..a

promise of only 10 dollars a month to each creditor got them off my

back and gave me a little sense of relief in that

department...Wonderful family members, friends, and the kindness of

complete strangers also was major getting thru the almost

unconcievabley hard times at the beginning..that and looking at my

beautiful baby boy lying there being such a fighter.. God Bless you

all..

Platania, mother to (6yr old

CHARGER)

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Lynaa,

Reading your story was like reliving everything I went through with my son.

Jack is 4 months old and we spent 86 days in the NICU. It all started when I

started to show at 12 weeks. By 30 weeks I was measuring 37 and at 35 weeks

when I gave birth I measured 43! I never went into labor with Jack. We had an

emergency c-section and Jack came out with no heartbeat and wasn't breathing.

Luckily I was asleep and didn't have to see anything. We did the whole

specialist thing and they told us there was a very slight possibility of a

tracheoesophageal fistula and esophageal atresia but they were SURE there wasn't

anything wrong. Well, Jack was born with it. He also had atrioventricular

septal defect, PDA which was fixed, Bilateral Choanal atresia which led to many

extubation attempts before being discovered, bilateral coloboma, micropenis, a

cute little CHARGE ear, and is now fed by a g-tube.

I know exactly how you feel about the life you wished for your son. I grieved

for a long time for the life I felt Jack had lost. I just couldn't stop

thinking about what Jack would never do. There was one day I was crying about

Jack never being able to drive, among other things, and my Dad told me that when

Jack was old enough he was going to take Jack out into a big open field and let

him drive his truck!

If you'd like to talk some more you can contact me offline at

waggoner529@...

~

Mom of Jack (4 mo. CHARGEr)

Let me introduce myself........Jalisco's Story

My name is Lynaa. I live in Newark,Ohio, a suburb of Columbus. I am

married and have a 13 month old and a 2 1/2 month old (Jalisco).

This past pregnancy I just had the feeling something wasn't 'right'.

All of my preliminary testing came back ok but the further long I

got, the more uncomfortable I became. I was diagnosed with

polyhydramnios around the 32 week of my pregnancy. The pressure was

so painful that I could barely move, let alone walk. I was sent to

the maternal fetal health center after my belly measurements came

back that I was measuring at 39 weeks when I was actually only at 32

weeks. Needless to say, at that moment, I knew something was

definitely wrong. I was told by my OB that probably everything was

ok but I needed to be seen by a specialist anyway...I went and they

did a level 2 ultrasound. They said that everything looked ok so

they sent me on my way...That same night I went into labor and went

to the hospital. I knew that I was only 32 weeks along but I still

didn't worry too much I figured he would be fine just a little

small. Well, my son was born at 5:30 in the morning 11/15 and was

completely blue and not breathing. All at once it seemed like there

were a million people around working on him. One doctor came over as

I was still laying there and told me that they were doing everything

they could to save him but it looked like he wasn't going to make

it. My world seem to stop in that one moment and then I knew that

regardless of what was wrong with him that I wanted this precious

little boy no matter what. They were finally able to stablize him

and he was moved to Childrens Hospital within 2 hours of being born,

where he remains to this day. Since then he has had multiple

surgeries, PDA repair, opening of bilateral chroanal atresia, stent

replacements, stent removals, multiple intubations and

reintubations, trach placement, followup scar tissue removal after

chroanal atresia surgery, upcoming g-tube placement, and upcoming

septal defect surgery. My son has the 'classic' charge ears and have

also been told that he has failed his hearing test but they are

hoping to do a more detailed test. He does not have a classic

columboma but he does have streaks across his retina and they seem

to think that this will not affect vision but time will tell. They

aren't even talking about when they will release him...I just am at

a loss right now. Things weren't supposed to be like this, you know?

I had so many plans for my son and it's so hard to stay positive

sometimes. I know that seems like a selfish thing to say, it's just

that I'm so tired....just tired..I feel like I want answers and

there aren't any to be given. It just breaks my heart every time I

go and see him. I just want to pick him up and run away with him,

even though realistically, I know that they are giving him the best

possible care...Everythings just so overwhelming. ..The medical bills

are starting to come in and I have so many things to think about

such as homecare, medical bills, employment, my 13 month old, my

husband....Sorry to go on and on but I just needed to get my

feelings out there...

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