I haven't said anything about them in awhile, so I figured I would let you all know what has been going on. They had a very scary event about a month and a half ago and baby ended up back in the NICU. He had a very bad infection from his trach and was also diagnosed with pulmonary hypertension. He was a very sick dude, but ended up pulling through. They have not been able to get him back off the ventilator, so he will be going to a long term facility where he will recieve therapy and attempt to wean him off the vent. The long term goal will be to bring him home.
They are having a lot of trouble with his eyes. They stay open most of the time and they cannot determine when he is awake and when he is sleeping. She told us today that he has started closing them a bit more, so that is good. He will move his hands toward hers when she holds her hand near his and he turns his head slightly in her direction when she talks to him.
CW is back at work and it is very hard on her to leave him in the NICU all day. She leaves work and heads straight to the hospital every day. Her husband and other son meet her there and they spend the evenings in his room. Then her son and husband go home and she stays each night at the hospital. It will be much better when he goes to the other facility because she is not allowed to stay there and can actually get some rest.
I'm so sorry to hear ths I hope the hospital has some resources for her. I'm not sure if she knows about the site, but I will leave it here: handtohold.org/support/nicu-support/
, heartbreaking. I've seen situations similar to this, at work. The strength people have is just incredible. I am in continued awe at what people will do when they love and care about someone else.
I know it's a poor prognosis, with everything the baby has dealt with. Sometimes I wonder if medical advancements do more harm than good. Living in such limbo is so difficult:(
This is where she struggles. She is very religious and it is difficult for her to understand God's will.
We did have an intersting discussion the other day. We talk VERY openly and she recognizes that people who are not in her situation do not really know what to say to her. She was saying that if he passes away that she would find it comforting for people to tell her that he is in a better place because that is what she believes. She knows that life here is difficult for him.
I know it's a poor prognosis, with everything the baby has dealt with. Sometimes I wonder if medical advancements do more harm than good. Living in such limbo is so difficult:(
This is a much kinder way of saying what I was thinking.
I feel so sad for that little boy and the whole family. In a way, I think death would be more compassionate. That doesn't sound good. I just don't know how else to say it.
Compassion is good, but don't mention the awe at her strength. When confronted with the unthinkable you do what you have to do to get through it.
Sending so many thoughts and prayers her way.
Yea, I have not said that directly to her. I do tell her on the regular that she is one hell of a mom! She says she knows that she is super mom.
I have no doubt you are being such a good friend to her. I'm glad you're able to have frank conversations too.
I'm also glad you don't talk with her about her strength. Most people who are experiencing hardship don't want to hear how strong they are because most of the time they feel anything but. Plus, there is an inherent, "I could never do what you are doing," tone that comes along with that that is usually unintentionally hurtful.
I really hope they are able to find peace as a family, however that arises for them. I think it's really wonderful you've been there for her all this time. A lot of friends fade away after awhile, but you are really showing her how much you love her.