After my last blog, which was a little less than up beat, I got many responses. Some were good, some weren't, but none the less I learned a lot. I learned that every one has bad days and only some of us decide to post it (now I know why some of you don't!) That all mothers question there skills. But from my UCD family I learned so much from each of you! Thank you to my UCD family because without you I don't know what I would do.
As I was reading the comments one mom told me that her son vomited so bad that she would catch it and give it back to him. Some of you might be thinking WTH? But I thought it was genius!! I mean it's just formula and you don't know what you are really losing especially all that precious medicine.
So let me take you back to Tuesday. A nasty rainy day so Lynlee and I decided to head to the mall (I'm so glad her and I think a like sometimes) and on our way I thought we might as well get an ammonia level and be done with it for a few weeks. Lynlee and I was playing in the chairs when they came out and told me 94. So I took her straight back and we did a repeat. 72. Ugh, still not great but not so terrible either. After many conversations with our team in Pittsburgh we came up with a few things. We get a repeat ammonia tomorrow. And as of yesterday we cut our day feed my 30'ccs and added them to our night feed to see if that helped.
I also tried gravity feeding her for the first time ever. For those of you that aren't up on all of this tube feeding talk it simply means pour the formula in a syringe and let gravity put it in her belly instead of using a pump. We started with 35cc's and 15minutes later did 35cc's more then 30 minutes later did 50'ccs.. The outcome wonderful. We've went through 5 day time feeds now and no vomit. Also a plus, what took an hour to feed now takes minutes. She isn't hooked up, she doesn't have to set still, what a relief.
I have to admit as I started it there I was following her around with the puke pan to see what it would be. Was I really going to pour it back in? Maybe, well honestly probably. I know it sounds crazy and even my own mother told me I was over the edge on this one.
Last night during her 10pm feed she woke up and was rolling all over the place and started to spit up. So me and my trusting puke pan caught it. I would have said it was nothing before. It turned out being 30cc's which is an ounce. It's also not even a third of what she vomits. So I know for days she was losing more than half her feed.
I hope and pray this is what was causing her ammonia to be crazy and by "fixing" this we will have a lower number tomorrow. Prayers are welcome as always!