He is in a center for children that don't need to be in a hospital but cannot be cared for at home. He is continuing to move his legs more. He used to not be able to close his eyes and he will now close them when he sleeps. He is more responsive than when I last saw him in the hospital. He is a fighter for sure. We were able to hold him for awhile. He is so precious.
The center is amazing but heartbreaking at the same time. There are 7 babies in his unit and only CW and one other parent come to visit their babies. There are some volunteers that will come around and hold them but it is only a couple of times a week. CW is amazing and spends a lot of time with the other kids. One little girl is turning three next week and she bought her a fancy birthday outfit and a present.
I was very anxious to visit but so glad that we got to go. We also found out that you came adopt a child for Christmas, so our team will be doing that.
Post by sparkythelawyer on Oct 21, 2014 14:19:43 GMT -5
I didn't even know this type of facility existed. I'm glad that your friend is doing as well as can be expected, and I am glad that her little one continues to show progress, even if that progress is in baby steps. I'm pulling for them.
Wait, what? There are babies living there with no one to love them? How do the parents just not visit? I mean, I get it, but I don't *get* it. My heart is breaking.
He has had several different diagnosis by different physicians. They now that he was without oxygen for a period of time and that resulted in brain damage. They had initially thought he was quadriplegic, but do not think so now. They almost lost him two weeks ago from an infection but he pulled through. He is still being tested for various genetic disorders because the damage shown on the scans do not correlate with everything going on with him. They feel like they are still missing something.
I am so confused. I guess I didn't realize these types of places existed and that there were parents that wouldn't visit their kids on a daily basis. Have they given up custody?
If they don't need to be treated in a hospital, why can't they go home? Just no one to care for them? Is it like a nursing home for babies?
Is this intended to be for short term care? Do they think he will eventually be able to go home with his parents or is this where babies go for long term care? Just curious, I didn't know something like this existed.
This is heartbreaking. How sad for those babies whose parents don't visit.
I am so confused. I guess I didn't realize these types of places existed and that there were parents that wouldn't visit their kids on a daily basis. Have they given up custody?
If they don't need to be treated in a hospital, why can't they go home? Just no one to care for them? Is it like a nursing home for babies?
Oh, man. Was this a birth trauma? I don't know the back story. Sending so many thoughts to your coworker and her baby.
I can't speak to this facility in particular, but I imagine it is for babies who need intensive round the clock care...so kind of like a nursing home for babies. I know it's hard to understand but try not to think too harshly about the parents, or at least all the parents. I don't know where a facility like this is in my area, but even our pediatric NICU is about an hour from where I live. Yeah, if it were my baby there you bet your ass that I would move heaven on earth to get there. But I have resources - a spouse, family to help care for my other child, a vehicle to get me there , I don't work but even when I did I had a job that would give me ample time to get there....of course it is horribly sad for the babies and I am sure some of the parents are, well, not great, but a lot are probably doing their best and trying to care for multiple children, etc.
I am so confused. I guess I didn't realize these types of places existed and that there were parents that wouldn't visit their kids on a daily basis. Have they given up custody?
If they don't need to be treated in a hospital, why can't they go home? Just no one to care for them? Is it like a nursing home for babies?
Oh, man. Was this a birth trauma? I don't know the back story. Sending so many thoughts to your coworker and her baby.
I can't speak to this facility in particular, but I imagine it is for babies who need intensive round the clock care...so kind of like a nursing home for babies. I know it's hard to understand but try not to think too harshly about the parents, or at least all the parents. I don't know where a facility like this is in my area, but even our pediatric NICU is about an hour from where I live. Yeah, if it were my baby there you bet your ass that I would move heaven on earth to get there. But I have resources - a spouse, family to help care for my other child, a vehicle to get me there , I don't work but even when I did I had a job that would give me ample time to get there....of course it is horribly sad for the babies and I am sure some of the parents are, well, not great, but a lot are probably doing their best and trying to care for multiple children, etc.
No, you're probably right. It's just not something I'm familiar with, especially living in a big city with lots of big hospitals. So sad there's even a need for this.
Thanks for updating. I'm glad your co-worker lives in an area where this is easily accessible to them.
I'm sure the other parents (likely every single one of them) hate that they can't be there, either. I live in a town of more than 100K people & we don't have anything like this in my area. Unfortunately, once maternity leave is up, most parents in this situation have to go back to work. The medical bills are outrageous. Even if they had planned to SAH, that option is frequently no longer a viable option. If a facility is >1 hr away, it's virtually impossible to work a full day and manage to visit your baby every day...even if it's your only child. The frequency of visits has little to nothing to do with how much a baby is loved. Plus, you never know if someone comes daily, just at a different time. They may feel bad for co-worker's baby because "no one is ever there"...even if your co-worker is there 6 hours a day!
Many hospitals have (or at least used to have) volunteers that can go and hold babies whose parents cannot be there for whatever reason. I'm sure the process to be a volunteer or set up a program is filled with red tape, but it certainly has been done.
I am so confused. I guess I didn't realize these types of places existed and that there were parents that wouldn't visit their kids on a daily basis. Have they given up custody?
If they don't need to be treated in a hospital, why can't they go home? Just no one to care for them? Is it like a nursing home for babies?
CW said there are not many of these types of facilities. All of the children in their unit except two are on ventilators. Some of the children are wards of the state and some their parents just don't visit. It is so so sad.
Wait, what? There are babies living there with no one to love them? How do the parents just not visit? I mean, I get it, but I don't *get* it. My heart is breaking.
How old are these babies?
We only met the kids in his unit and they were all under 4.
Is this intended to be for short term care? Do they think he will eventually be able to go home with his parents or is this where babies go for long term care? Just curious, I didn't know something like this existed.
This is heartbreaking. How sad for those babies whose parents don't visit.
For CW baby they intend for this to be short term care because she has been through extensive vent training and is able to care for him at home. He is there now because he is able to get therapies that he would not at home.
For many of the children this will be long term until they are transferred somewhere else. Especially those who have no family and will not be adopted.
I've been wondering about this baby. I'm so glad his parents get to spend so much time with him. I'm also sad for the other babies. Is it possible for people to volunteer to hold them? That seems like it would be easy to organize...
Yes they have a volunteer program. It's a pretty extensive process, so there are not a ton of volunteers. It is a pretty large facility, so I think they are always struggling for volunteers.
I am so glad a facility like this exists. Around Christmas time if they are hurting for donations, will you let me know? I might be able to get some of our student orgs on it.
I am so confused. I guess I didn't realize these types of places existed and that there were parents that wouldn't visit their kids on a daily basis. Have they given up custody?
If they don't need to be treated in a hospital, why can't they go home? Just no one to care for them? Is it like a nursing home for babies?
CW said there are not many of these types of facilities. All of the children in their unit except two are on ventilators. Some of the children are wards of the state and some their parents just don't visit. It is so so sad.
That is so sad. I am very uncomfortable with anyone judging parents of incredibly incapacitated children who may have no hope for improvement. There but for the grace of God go I, and all that...
From what I gathered while I was there, it wasn't really about judging the parents. Most of the children whose families do not visit have not been involved in their lives since they were born. There is an overall sadness that the kids are alone, but the focus isn't really on the parents themselves. I am sure there are a million circumstances as to why they can not be involved in their lives. That still doesn't change the fact that it is very sad for the child.
We were talked to about a similar facility when we were unsure about what my son's prognosis was going to be. We were also told that some babies who have nobody to visit them and are there are shaken babies. The doctors told us that if the parents request a ventilator, and the baby does not die, then they are not charged with murder. The babies are still wards of the state because the parent lost rights due to shaken baby syndrome. I don't know the accuracy of what we were told, just repeating it. Everything about everything with these situations is so sad.
This is actually true. My DH worked for a government based insurance company for the city and one of his clients was a baby that was abused by their father and the baby was on a ventilator, so not dead, but had absolutely no brain activity or value of life. The baby's grandfather refused to remove the vent because it would mean the father would be charged with murder.
I'm pretty sure they were fighting to have that baby removed from the ventilator because that's just not fair to the baby.