Hospice

The first time I took her to the ER it was a blessing. It was a feeding tube issue and I learned how to feed her on the go with a syringe. The next week I was able to take her to church, which I didn't think I was ever going to be able to do. I mentioned in my post about the ER the other day, that it ended up being a good thing again, and that I would explain why. The first time I took her to the ER I learned how to take her places. The second time I realized that hospice could be a blessing.

I realized that day that there are going to be "new normals" with Sophia all the time. Or reactions to medication. Or just bad episodes. I don't want to rush her to the ER all the time. If I had been on hospice that day all I would have had to do is call the nurse and she would have been there faster than the ambulance.

There's no reason why Sophia can't be on hospice. She has a "life limiting condition". And she isn't declining....but she also hasn't developed any new tricks in a while. So.....we set everything up yesterday.

It helps me to keep in mind that starting hospice doesn't change anything. She's going to live as long as she's going to live. And with babies comfort measures are basically all the life sustaining ones anyways, besides the super invasive stuff which we wouldn't do to her anyways. Because we feel as her parents.....it's our job to protect her.

In the NICU they have a saying and it goes something like "are we doing things TO her or FOR her?". It is a question all parents of terminal children have to ask themselves. But again, she's not declining yet, hospice is just going to help us care for her.

We are comforted during this time by the faith we have in knowing that she will one day be with her father (and mother) in heaven who created her. And what better place to be if she can't be with us?