I have noticed from time to time that some guests stumble on to my Facebook page, maybe looking for help, hope, information or support, just that one piece that can get a person fighting for the life of a child another day.
When this nightmare was our reality I searched and searched for information that would keep our preemies with us. What I found was frustration and broken heart. I will never suggest I know what someone is going through as everyone is different, I do however understand the situation and have sympathy for those struggling through this test.
Here is my two cents that I wish I knew then. While facing the decision for our babies to make sure they can live to tight or save them from fighting and entire life to live I wish I had the insight of those living it. This I would like to pass on and pray that it saves a heart.
“QUESTION EVERYTHING” Don’t take any information provided by any hospital person, doctor, counselor, social worker or security guard. The fact of the matter is that no one knows what the future holds for any child or anyone else. The twins both had a grade 4 brain bleed and we were called by the night doctors that we needed to take them off life support and the daytime doctors stating they were not supporting that at the time. The doctors pretty much made the decision for us and my final thought was that if they had a reason they would fight it out. Maybe there was a reason for them to go. The word from the doctor was that they had NO chance.
Since then I have met a boy who had no chance also with a grade 4 bleed and other than being smaller I would have never known.
I try not to have regrets but I probably would not make the same decision.
On a final note don’t listen to the social worker either who actually yelled at me because I did not file them for disability. I didn’t want to label them before I knew how that might effect them later. Come to find out if a child goes on disability they are put on a medical program with a higher out of pocket to the tune of 20% more.
I just felt the need to ramble a bit today