Need prayers please*** UPDATE ***

[girl1911]

This disturbs me on several levels. Not against you but where is the doctor? And your family was basically given the news that this infant will not live. Hospitals have grief counselors on staff. They begin immediately, the staff does not wait until the patient has died before offering their services.

Hasn't anyone spent time to sit down and answer all of your questions or counsel you towards what to expect???

They also usually assist in local support groups. At least in Alexandria, the miscarriage/stillborn/SIDS catch all group meets in one of the large meeting rooms at our hospital. They should be providing you with this information. Yes even the grandparents. Not just your daughter.
What hospital is it? This really is deplorable you don't already have those answers.

the only thing we were told is that 80% of these babies dont make it thru birth ..... 97% dont make it thru the first 30 hrs... he is 3 days old.... he was delivered at oschner my a mid wife.... and they are not monitoring his heart are vitals .. but he is so lively but they say he is gonna die..... i am so lost and confused....they said he cant cry but he is... they said he cant suck a bottle but he is.... they pulled his feeding tube out even tho my daughter didnt want because they said it is prolonging it.... but now he is sucking a bottle... he is not being seen by doctors and they are not treating his jauntice because they said we have to except the fact he is gonna die....

 

[Cat]

A doctor hasn't seen him?

That doesn't sound right. If a baby is improving, regardless diagnosis, and even if he isn't, a modern hospital doesn't toss bodies to the side and say he's going to die, we don't need the doctor to see him.

And the feeding tube... He's three days old, they knew he was anacephalic and inserted one only to remove it and say oops nevermind?

Feeding tubes are major decisions in an permanent invalid's life. Yes the baby may live, under extraordinarily rare chances and he will always be permanently disabled. Administering life prolonging care is not done lightly and certainly not forcibly removed within hours.

Something isn't right IMO. I'd be discussing the treatment and withholding of physician support to the hospital administration if that's what is happening.

 

[Cat]

What about the doctor who diagnosed her?

 

[girl1911]

A doctor hasn't seen him?

That doesn't sound right. If a baby is improving, regardless diagnosis, and even if he isn't, a modern hospital doesn't toss bodies to the side and say he's going to die, we don't need the doctor to see him.

And the feeding tube... He's three days old, they knew he was anacephalic and inserted one only to remove it and say oops nevermind?

Feeding tubes are major decisions in an permanent invalid's life. Yes the baby may live, under extraordinarily rare chances and he will always be permanently disabled. Administering life prolonging care is not done lightly and certainly not forcibly removed within hours.

Something isn't right IMO. I'd be discussing the treatment and withholding of physician support to the hospital administration if that's what is happening.

i am with you!! i wanna know why they not treating him for jauntice and the mid wife is the only doctor to see him.... i ask everyday how he is doing and they say same and we not monitoring him because he will die it is what it is... but i have pics of him with his tube then they told my daighter they have to remove it cause its just prolonging it... so my daughter said well give me a bottle for him cause he isnt gonna starve to death!!! but my daughter is only 18 and the dad is 17... i try to talk to them and the doctors and everyone tells me its not my decision.... so i have to sit back and just watch i told her we need to do what we can and she said the doctors said there is nothing to do and even with major surgery he will only live till he is 2

 

[Cat]

That part is true. And unfortunately if your daughter isn't raising hell, you can't do much.

I agree. Nature should take its course. But you may have the very rare grandchild who lives several months. Just because it is a terminal diagnosis does not lend just cause to remove and withhold quality care. Especially when he is grasping and taking a bottle.

I don't know the situation. It could be he is fading and you are faced with some denial. I have to rationalize that because in this case, it is what it is, is correct to a degree. But IF, IF!!!, he is one of those rare gems that can survive for several months then he is entitled to that care. And to prevent that care may indeed precipitate his passing earlier than nature actually intends. Our society and medicine has never left a terminal infant to die on its own. No vitals? Is this what the NICU charge nurse indicated? There are thousands of families who bring home their infant to pass away in the next coming months. They still are afforded health care.

This is a very difficult dilemma. What should have been a terrible thing sounds like its being compacted into a nightmare.

 

[girl1911]

That part is true. And unfortunately if your daughter isn't raising hell, you can't do much.

I agree. Nature should take its course. But you may have the very rare grandchild who lives several months. Just because it is a terminal diagnosis does not lend just cause to remove and withhold quality care. Especially when he is grasping and taking a bottle.

I don't know the situation. It could be he is fading and you are faced with some denial. I have to rationalize that because in this case, it is what it is, is correct to a degree. But IF, IF!!!, he is one of those rare gems that can survive for several months then he is entitled to that care. And to prevent that care may indeed precipitate his passing earlier than nature actually intends. Our society and medicine has never left a terminal infant to die on its own. No vitals? Is this what the NICU charge nurse indicated? There are thousands of families who bring home their infant to pass away in the next coming months. They still are afforded health care.

This is a very difficult dilemma. What should have been a terrible thing sounds like its being compacted into a nightmare.

Well first off i am not in denial, i am aware that it is gonna happen, but let it happen in its own time dont rush it!! the baby was never in ICU never hooked up to monitiors... never given shots , never bathed are a diaper put on him... just wraped him and gave him to my daughter to die... but he DIDNT die ... i then went to the nurse and they finally weighed him and bathed him about 5 hrs after he was born ,and he is smiling now and crying and sucking a bottle and thriving.... he has a strong grip and holds my finger tight. they have denied him every bit of care a new born gets .. and everytime a nurse just says we not gonna do it cause he isnt gonna make it!!!

 

[Hitman]

Shoot, after reading all that, I'm about ready to head over there and ask some f.ing question my damn self.

Don't like what I'm reading for sure.

 

[girl1911]

good luck !!!

 

[girl1911]

ok all of you just look at the before and after picture plzzz and tell me thats not a baby fighting to survive????

 

[girl1911]

with feeding tube

when he was first born



after they took out feeding tube

 

[girl1911]

he has trouble swallowing his formula... so he isnt getting much nutrients since they took the tube out.... so he isnt as lively that pick was the day the took the tube out...

 

[Cat]

I'm sorry I mentioned denial but this is such a hard thing to wrap my mind around.


I had to delete my rant because it surely doesn't help.

 

[3fifty7]

There is a lot going on here and I can't wrap my head around most of but I am still praying for all of you involved daily.

 

[XD-GEM]

Prayers sent for all.

What a fighter he is!

 

[Expert684]

My heart feels like it was hit by a truck! My family will pray for you!

 

[Grandpa23]

Fighting back tears here. Prayers of comfort sent your way.

 

[girl1911]

6 days old today

he is truly a miracle and again i will be forever gratefull to each and everyone of you here ... please know that everyone has witnessed the power of prayer.
although he is still gonna pass at some time the doctors cant explain him living this long , but we can thank you lord

here is some updated pic of my lil man

 

[Hitman]

6 days old today

You should contact these folks > http://www.anencephalie-info.org/e/report.php

They do a lot of research on this topic and according to them, your little man here just broke the 5% range!

 

[richiespng]

6 days old today

Prayers going out to your family.

 

[girl1911]

You should contact these folks > http://www.anencephalie-info.org/e/report.php

They do a lot of research on this topic and according to them, your little man here just broke the 5% range!

i did thanks


The baby's life up to and after birth:

Contrary to common belief, only a small number of affected babies died in utero.

Here are the statistics:

7% died in utero
18% died during birth
26% lived between 1 and 60 minutes
27% lived between 1 and 24 hours
17% lived between 1 and 5 days
5% lived 6 or more days