Stressed to the max

Obviously it's not Haley who is stressed to the max (see above picture) - which I am very thankful for!

I apologize in advance for complaining, and I am truly grateful and thankful every day and every second for my Haley-bug and for how well she is doing. But I am so stressed at the moment. So, so, so stressed. She's been eating less every day since the day before Thanksgiving, and today she ate less than she did the day after she came home! The quantity she ate today was also her minimum for hydration (16.33 oz/490 ml), something she's never done before. :( These last few days I feel like I spend all my time on the phone with the doctors/cardiologists because whether or not she gets her lasix doses depends on how much fluid she takes in. They can't just give me set numbers and I'm not allowed to decide to skip a dose on my own, so I always have to call and discuss it with them. Of course it's never the same doctor on-call so I always have to explain everything again and again. Then today the person on-call was some inept woman with a strong accent who wouldn't make a decision and just kept describing the signs of dehydration over and over and saying she couldn't be sure what to recommend! What's the use in talking to her? And it was impossible to escape the conversation! So finally I called my pediatrician who voiced my greatest fear that has been niggling at the back of my mind these last few days: "Have they talked to you yet about Naso-gastric tube feeding her?" Which no, they haven't, but she's eating significantly less than she was a week ago and also they won't send a baby home with an NG tube, only a G-tube. A G-tube is a tube placed into their stomach through their abdominal wall and would mean another surgery, something I vehemently hope and pray to avoid. Somehow just having someone finally mention this greatest fear of mine has completely undone me. Hopefully she will start to eat better now that we're home and can try to get back in our routine. And maybe if we don't let her sleep through the night, we can start trying to wake her up every 5-6 hours, then maybe she'll eat for us and her volumes will go back up. I know they can concentrate her formula more, but the last time they did that she decreased her volume because she didn't like it. Plus, she still has to take in yea-so-much liquid to keep hydrated, so I don't see how it would solve that problem. I don't know, I just don't know. Somehow this wasn't something I was ever prepared for. I always knew it would be a struggle to teach her to eat before we went home from the hospital, but I didn't realize it would be a struggle every day to get her to eat as much as she needs. Dr. Wheller said at one point that the first sign that something was going wrong was a decrease in feeds, so I can't help but feel this looming shadow hanging over me. She keeps gaining weight which is great and the one hope that I cling to. Today for the first time she had a significant decrease in wet diapers - she's only had 5 wet diapers today - so that has me scared too. But she acts happy and playful when she's awake, her color's good, her oxygenation levels are good, her capillary refill time is good, and her breathing seems normal. I just pray and pray we can get her feeds back up and that everything is okay. I know I should be thankful for how well we've been doing, and I truly am, but I can't help but ask for more by praying that she does better, eats more, and avoids another surgery.

I love her more than anything.

Sorry again to complain, but maybe by voicing this fear it will not come true just to make me look like a worry-wart. I hope that's all it is, that I'm just a worry-wart who needs some xanax, haha. ;)

Alright, I'm off to smooch my beautiful baby. Good night.