3 weeks, 6 days

So obviously, I took a break from writing about Lilly. Part of me is upset at myself for it, and the other part justifies it by the fact that I have been playing with my little girl every day and loving every minute of it. I didn't want to worry with logging on and sharing her story. It caused me to continuously worry about what was really going on. But the time has come that I need to share in order to get it out of my head and off my chest.

The last time I blogged was a happy time. We had decided that there would be no surgery and that it was quite possibly something else in her little body causing the slow weight gain. We tested for everything from cystic fibrosis and beyond. The results? Everything is normal. We were sent to a gastroenterologist named Bankole Osuntokun. (Great doctor.) He tested for all sorts of stomach and intestinal issues. The findings? Everything is normal. The problem? He can't explain why Lilly's height is normal, but her weight is not. She is in about the 25th% for height and the 2nd% for weight. He believes there has to be something going on. Yes, it may be her heart causing all of this, but remember her cardiologist believes that it is not just her heart. So, we now add vegetable oil to all of her bottles and food. We are also allowed to give her anything we want...including chocolate syrup in her bottles and ice cream. No worries...we don't do that. I don't approve of it. I don't want my almost 10 month old *eek!* addicted to junk food.

So here we are, February 23...3 weeks and 6 days until her surgery. She is still on 2 medications twice a day, and still, STILL is only eating about 4.5 ounces every 3-4 hours. We tired to feed her every 2 hours like the dietician suggested when the feeding tube failed, but Lilly is just not hungry that often. She at least is now eating solids and getting bottles. She LOVES squash and just about anything green. Surprisingly hates apples.

I don't want to make this extremely long with updates. It would be pages and pages if I tried to update on everything that has happened from the last time I blogged. Thanksgiving was great and Christmas was wonderful! Lilly got ear infections and RSV in January (yes, even with the monthly vaccines for it), and that was not fun. It set the surgery back and had us a little worried for a few days. But, she is healthy now and therefore we have started the "no children around Lilly" time frame. We can't chance her getting sick before her surgery, so we have cut off most public places and she will only see Jenna and her cousins at a minimum.

We are hopeful in what is to come. I am nervous, but not worried. I know Lilly will be in amazing hands when I pass her over to the staff at Cook's. I will be a wreck and an emotional basket case that day, but it's all in God's hands. He has chosen this for her, and there is a reason. We won't know until later on, but we will eventually find out why we are going through all of this pain. We pray every night that God lays his hand on her heart and helps it to heal. Whether he fixes it through the doctors or through miracle, at this point, is no difference to me. I just want my baby to feel better.

I'm not sure if anyone will end up reading this, but if you are, I ask that you please pray for Lilly. And feel free to pass the link on...there can never be too many prayers.

We love you Lilly.