my baby is dying

September 4, 2004

I am so sorry to hear that your precious baby is not doing well. I am praying for your daughter and your entire family.

September 4, 2004

I know how you feel about them poking on her .. they did the same thing to my little girl brandy she passed away in may of 2003 .. but i took her out of the hospital and let her come home and die in peace.. so i it was me that is what i would do .. if there is nothing they can do nor a cure for this then yes gir take that baby home and spend time with her ... there is a group of people that can help you while she is at home they are called hospice .. look them up they can do the same thing for her at home trust me and dont let them talk you into keeping her in the hospital cause they tried that with me and there was one nurse out of all of them that told me they was just using her for a lad rat awww i lost it and took her out the same day.. that is your child it is your choice you can make that choice with out them .. i am so sorry you have to go through this it is a hard thing to go through they told us the same thing that brandy would not last a year well they was right she was six monthes and eight days when she passed she really strugled alot and went through alot of pain.. not to scare you or nothing but it gets alot worse before it comes to the end so keep up your strength okay and spend all the time you can with her and i will keep you in my prayers... god be with you and your family... your friend shannon

September 4, 2004

hi everyone, im pretty new to the group. my baby is about 3 1/2

months and her heart keeps getting worse. we dont know yet what kind

of mito she has. somebody said i am lucky to be getting a diagnosis

so early but in a way yeah but mostly no because the doctors said

that she is showing symptoms so young and so strongly and that is

not good. she has a lot of intestinal problems but she could live

with that. her heart though is the problem she has septal

hypertrophy and at the beginning of august they did another echo and

it had grown so much so fast. they said she should have been in

destress already and they would be surprised if she was still alive

this time next year. (they told me all this on my birthday!) my

husband and i said that she was already surprising them so maybe she

would live longer than they thought and prove them wrong. she had

another echo on aug 23 and there was no change which we thought was

good because they knew it wasnt going to get better so at least it

didnt get worse. but this past week she did start showing some

distress and they did another echo on thursday and i cant remember

the name of it but she is some fluid building up in the little bag

around her heart. they can put a needle in her heart and drain it

but it will just keep coming back. she probably only has a few weeks

and they started talking about me and my husband making decisions

about what would be ethical to do for her. we have already decided

that we arent going to try and drag things out. if God wants her he

is going to get her because i cant stand to see her in pain. i love

her so much and will miss her like crazy but i want her to be in

peace. which she is not now she has so many tubes and i.v.s and a

nurse is always poking and prodding her. i just want to get her home

so we can have some time together instead of visiting her in the

hospital. now i wont be able to see her for a couple of days because

we are about to get hit by francis. we live in melbourne but are in

orlando. i am also still waiting on results from my sons mito

testing. he has a much milder form if he does have it. so far we are

only seeing low muscle tone and constipation. ok everyone thanks

for listening to my story and i will catch up when we get power back

because we are expecting to lose it for a few days. please pray

for my baby her name is EVA THALIA (pronounced ava).

kelly

mom to eva and peanut

September 4, 2004

Dear ,

I'm so sorry to hear about your little baby and about your other

child. My daughter who just turned 10 has NARP mito. It has been a

real struggle for her. A few weeks ago she sufferred a bad

regression from a mild illness and then it was followed by a mild

stroke. I have a son also. He is 5 and mito free.

I understand you wanting to just take her home. I would do the

same thing if it was me. I don't have the perfect words for you

other than I understand your pain and saddness. I will pray for

peace for you and your family. Know that you are in all of our

thoughts.

Peace be with you,

Kim

> hi everyone, im pretty new to the group. my baby is about 3 1/2

> months and her heart keeps getting worse. we dont know yet what

kind

> of mito she has. somebody said i am lucky to be getting a diagnosis

> so early but in a way yeah but mostly no because the doctors said

> that she is showing symptoms so young and so strongly and that is

> not good. she has a lot of intestinal problems but she could live

> with that. her heart though is the problem she has septal

> hypertrophy and at the beginning of august they did another echo

and

> it had grown so much so fast. they said she should have been in

> destress already and they would be surprised if she was still alive

> this time next year. (they told me all this on my birthday!) my

> husband and i said that she was already surprising them so maybe

she

> would live longer than they thought and prove them wrong. she had

> another echo on aug 23 and there was no change which we thought was

> good because they knew it wasnt going to get better so at least it

> didnt get worse. but this past week she did start showing some

> distress and they did another echo on thursday and i cant remember

> the name of it but she is some fluid building up in the little bag

> around her heart. they can put a needle in her heart and drain it

> but it will just keep coming back. she probably only has a few

weeks

> and they started talking about me and my husband making decisions

> about what would be ethical to do for her. we have already decided

> that we arent going to try and drag things out. if God wants her he

> is going to get her because i cant stand to see her in pain. i

love

> her so much and will miss her like crazy but i want her to be in

> peace. which she is not now she has so many tubes and i.v.s and a

> nurse is always poking and prodding her. i just want to get her

home

> so we can have some time together instead of visiting her in the

> hospital. now i wont be able to see her for a couple of days

because

> we are about to get hit by francis. we live in melbourne but are in

> orlando. i am also still waiting on results from my sons mito

> testing. he has a much milder form if he does have it. so far we

are

> only seeing low muscle tone and constipation. ok everyone thanks

> for listening to my story and i will catch up when we get power

back

> because we are expecting to lose it for a few days. please pray

> for my baby her name is EVA THALIA (pronounced ava).

>

> kelly

> mom to eva and peanut

September 4, 2004

,

Your message gave me a cold chill, since it sounds so much like what

I went through with my daughter. My heart just breaks for you. My

daughter was hospitalized with cardiomyopathy just before she was

three months old, and we lost her five weeks later.

I can only hope and pray that with a diagnosis, your daughter's

doctors can treat her heart problems and she can recover. My

daughter didn't have a chance, since she wasn't diagnosed in time.

Please feel free to contact me by email (reesanick@ hotmail.com) if

you want to talk, or vent or if you have any questions. I'm happy to

help in any way I can.

Theresa