I can't tell you how much of a relief and how heavy a weight I felt lift from me as soon as I got her feeding pump set up tonight. I knew, for the first time in a couple of weeks, that my daughter would be getting the good nutrition she would need. She wouldn't need to swallow it herself, she wouldn't even have to worry about it. It would just be there. Such a relief!
The rest of the day, after the first update, went fairly well. About the roughest part was when our nurse Sherrill taught us how to setup the pump and such. Setting up the pump, that was the easy part. It was when she proceeding to go upstairs to where Amelia was playing and forgetting all about the tube, and brought her down to show us how to check the tube to make sure it was in the stomach and attach her to the machine. Crying ensued. Amelia was afraid they were going to try putting something else in her, another tube or something like that. Poor Sherrill has such compassion for these kids that she takes on the role of the evil tube lady to save us parents that pain and suffering. She is an angel.
When all was said and done, we had our pump, our supplies, everything we needed to keep Amelia fed for the next couple of weeks. We went off to the Ronald McDonald house at Legacy Emmanuel. Our room wasn't quite ready, so Amelia, tired little bug, curled up on a couch and promptly passed out.
You can't see her NG tube her as it is on the right side of her face and covered by the pillow. She was such a trooper today, and she did such a great job faced with all the new, scary things that were going on today. I am so proud of my precious little princess.
We also spent some time at the clinic calling various people, talking to the business office, and our overall calm has rapidly been increasing. It still feels like a long time, but it is less and less scary, and I think we are getting more and more used to the idea and ready to handle it.
The one thing that almost made me cry today.... When we finally got our room at the Ronald McDonald house, we let Amelia sleep on the couch, Katherine stayed with her to watch her, and i went to check out the room. Each bed had a stuffed animal for Amelia to keep, but one of them was a dragon. Amelia is SO into dragons right now and loves them. Yesterday during out tour, someone must have heard and picked up on that, and they made sure that one of the stuffed animals for her would be one she would love. It is the little touches here, the little things they do that just makes everything about this place so amazing. We have definitely found our charity of choice to support.
Well, that is it for today. We have the feeding figured out. She will get her nutrition over a 10-hour period as she sleeps and will hopefully be none the wiser, but feel 100% better. We are meeting others going through similar struggles, families, other kids, and each one adds a little bit to our peace and our calm and our belief we are in the right place. I am sure there are going to be challenging days, but for now... things are looking up.
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