The story of Lilly's heart.

Monday, February 28, 2011

Fundraisers and Kimonos...oh my!

It's 12:30am. Lilly and Chelsea are sleeping and I just finished my mid-term for Literature. That was one of the hardest things I've had to do involving school. I can now say that I despise Walt Whitman. Ha!

Lilly is doing great. She is almost walking! She uses her baby doll stroller and cruises all over the living room. So cute! We have a sedated ECHO scheduled for Thursday. I hate when they have to sedate her. She doesn't understand what's going on and she's not allowed to eat for so many hours before hand. Makes for a somewhat cranky Lilly.

This ECHO will be with her second opinion doctor, Dr. Thankavel. She is through Children's Medical Center in Dallas. I like her a lot, however she is very new to the practice. She's been at Children's for about 5 years. Dr. Hess has 20+ years on her. She wants to be sure that the aortic valve is truly beginning to show itself more and help us to gain more knowledge on the situation. The only way to get a complete view of the valve is to sedate her, so we agreed to have it done again. The good thing is that she's only out of it for about 45min-1hour.

But on to more exciting things! We have fundraisers set up to help us with some of the medical expenses and one to help Lilly to get some stylin' post surgery outfits! My awesome friend Lisa has set up a "kimono sewing", and my other awesome friend, Emily, has set up a deal with Buffalo Wild Wings. My mom was able to set up something with a little bar and grill in North Richland Hills.

The kimonos are coming from all over the US...Canada too, I think. It will be the easiest thing for Lilly to wear since she will be sore, have lots of IVs and tubes on her, and to help us doctor her incision when needed. We can't lift her up from under her arms for 6 weeks and it will be painful for her to lift them for a while, so it only makes since to have wrap around outfits. I will then get to pay it forward to the next little heart baby. That, quite possibly, excites me the most! : )

Emily set up Buffalo Wild Wings for March 14th. We get 10% of the day's profit to go toward bills and expenses. She has also set up a blood drive with Carter Bloodcare. It will all be happening at BWW.

My mom and I decided we might need to set up another date just in case people couldn't make it on the 14th, so we set up the exact same deal (minus the blood drive) with a brand new little bar and grill called Napoli's. This one is happening this Friday (March 4th).

I am soooo excited about all 3 things - I can't even begin to put it into words. It means so much that there are still people out there with big enough hearts to care about others. I know that Lilly will appreciate this when she grows up and is old enough to understand what she has been through. I only hope she does not regret the things that have happened to her or have a negative feeling toward having a CHD. It will be what makes Lilly, Lilly, and I hope she wears hear battle scar with pride. : )

We love you, Lilly!

Wednesday, February 23, 2011

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.