.. or else you would run out of tears. At some point the bad news becomes almost laughable, not because it's funny but because it's so rediculous that the bad news keeps coming. That is what I told one of Addie's nurse practitioners today when she came to check on me at the latest news.
Addie has had a good weekend and first of the week. I didn't want to write about it because that would make the good news real, and admitting things are going well usually leads to a downturn. So, I hate to say, but I will be extra cautious when reporting the good days from now on. This weekend she came off her oxygen again, and she only has it for her taps and when she eats. She started eating again - entirely by bottle! - in very small amounts to help get her tummy working again, and she was doing reasonably well. She had a few dirty diapers, and she's on room temperature air like the big girl she is. She only had 44 mls taken off in her tap, and she recovered pretty well, even took a bottle and cuddled with me a couple of hours later.
And then there was today.. we started the day on a great note - she took her entire 12 mls by bottle, and we had wonderful cuddle time. At her noon feeding, she and I tussled a bit to get the milk down and keep the cannula on her face, but she took the whole thing, only to spit it all over my lap a few seconds later. That's ok - it's a mark of motherhood! We've fought hard to get her big enough and eating again, so I will welcome even some milky spit up. Then the neurosurgeon came by and casually mentioned she was almost big enough for a shunt, maybe in 2 weeks and then moved on.. *what?!* There went our calm morning.. Philip and I are so scared of the shunt, the surgery, and the impact it will have on Addie for her entire life. We are so thankful that the option is there to keep our baby safe, but there are so many risks. I know it has helped the children of some of our friends.. .but we're just not ready to go down that road.. we're not ready to make a decision that will impact her for the rest of her life. ..what if she would have gotten better if we waited a few more weeks or months? Why now? What if she is one of the ones who will have multiple infections and complications and surgeries? Goodness knows we have hit every complication currently available to us. I still firmly believe she will be ok and that she won't have to have a shunt.. but the window is getting smaller for her to resolve on her own.
So, we had that bit of news, but we moved on with our pleasant day. Then came her eye exam - Stage 2 ROP. Early Stage 2, but still.. it was a progression from last week never the less. But we kept rolling forward. Nothing is going to get us down today! We're on an upswing. And then just before her 3 o'clock feeding she spit up a little brown gunk.. .and then a lot more. After an Xray, just to be safe, they confirmed she has large loops (areas that are enlarged by air or excrement that is backed up). This could be nothing major - a "plug" of poo - or it could be a complication of the NEC, a stricture in her bowel. A stricture is a constricted area in the intestines that slows movement of excrement on its way out of the body, backing things up and causing loops. This would not resolve itself and would require surgery. So, maybe it's nothing.. or maybe it is. We have to err on the side of caution. So, they have stopped her feedings for now, and the sump is back.
So, we're still hopeful for a good week, that the loops are nothing more than a slight "back up" if you will. They are doing an upper GI in the morning and over the course of the day, so we hope to know more tomorrow.
Please keep our sweet girl in your prayers. She's still fighting strong and hard every day. There are no breaks.
My last thought, which warms my heart, came from my momma years ago during a different trial in life. When you do finally stop laughing and run out of words to pray and all you can do is cry, your tears become unspoken words to God, and He still hears them.
We will get through this, just like we have everything else. This time next week, everything could be better.
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