Friday, December 19, 2008

Now...on to Christmas

We took Lia back to Children's yesterday for her post op appointment. The staff (we know them all quite well now) just oohed and awed over Lia. Her big smile and pink cheeks just reel them all in. She checked out fantastically. Her o2 sats are now running in the 80's instead of the 70's. She's gained weight since they saw her last and were impressed with that. They ran some labwork and did a chest xray and everything looked great. Basically, she's perfect. Now we can concentrate on the task at hand...Christmas.

Cards are ordered, but not in. Presents are bought, but not wrapped. It's time to buckle down and get some things done. I'm sure it will all get done. Honestly, I'm fine if it's not perfect this year. We've never had more to be happy about or thankful for. This is going to be the best Christmas ever. We hope you all have a wonderful one, too.

Monday, December 15, 2008

Santa Baby

We're counting down the days til Christmas here at the Stone house. Lia is finally acting more like her mommy than ever. She's decided she's more interested in eating than sleeping. Before her last surgery, she definitely favored sleeping over eating (which sounds more like her daddy). Our girl has gained almost 1 lb in one week! She's up to 12 lbs and 6 1/2 ounces. She's just about doubled her volume of eating. Like I told someone this's amazing what an improved cardiac output does for a person's appetite. Anyway, we're just hanging out here recovering and getting ready to get to spend Christmas with the rest of our family. We'll let you all know how her post-op appointment goes this Thursday...

Tuesday, December 9, 2008

There's No Place Like Home

Lia got to come home this afternoon! She is swinging in her swing as we speak...she really missed her swing. She got home just in time for us to build the first fire of the winter. The boys were thrilled to see her and we were excited to get her home again. She's off her oxygen and eating well. We'll go to some follow up appointments in the next few weeks and then we will begin living the rest of our lives. We can't begin to express to you all how blessed we feel. She's done so well. Thank You again for all of the prayers...he has been listening all this time.

Monday, December 8, 2008

Look How Busy I Am!

Lia continues to do well at Children's. We are 4 days into our stay and she is getting close to being able to go home. They are adjusting some of her medications and she can't quite decide to stay off her oxygen all the time so it may be a day or two longer. She is still smiling her awesome smile to everyone she meets. We thought we were going to get to meet some of the Dallas Cowboys this morning, but ended up down in the echo dept while they were here. Miss Lia was definitely disappointed to miss that chance (but not as sad as her mommy). She was decked out in pink Cowboys gear just in case. She did, however, get a chance to visit with Santa yesterday. I'm amazed at all the cool stuff Children's does for these kiddos. Imagine how cool it was for all those little boys who got to hang out with Jason Whitten and Marion Barber this morning. Have I mentioned that I'm really sad to have missed it??? We did manage to snap some cute pics of Lia with all her pink Cowboys stuff.

Guess what? Lia's decided she does like to eat! We have seen the biggest change in her eating. I guess she just feels that much better. This surgery took some of the workload off her heart and she must be feeling it. She had to be sedated for her echo this morning and was fussy because they made her go without food for several hours. I'm so used to having to force-feed her every few's been a nice change.

That's all I've got for ya...we're just hanging out and trying to get her home. It shouldn't be much longer now. Thanks again for all the messages, calls, and texts...we love hearing from you guys. Keep need to stop now.

Friday, December 5, 2008

More miracles...

What a great day!!! Lia is so amazing. She's done so well, impressing everyone she comes in contact with. I'm watching her sleep soundly and comfortably in her bed here at Children's as we speak. We were moved out of the CVICU this afternoon and onto the stepdown cardiac floor where we've been before. She is flashing her beautiful smile to anyone who will give her any attention up here. That's plenty of smiles...she gets attention from lots of people. She already looks so much stronger than she did before. It's amazing, because she looked so good to me before this surgery. I mean, she's just done so well from the beginning. We realize as we look around this hospital how blessed we've been.

A hospital that only takes care of children is a hard place to be as a parent. Especially when your own child is staying there. Everywhere you look, you are reminded of what some other parent is having to endure, of what you could possibly have to endure yourself. I know that people who know what Corey and I and our family are going through think to themselves..."How are they getting through this? How can they possibly get through their day?" I know that because I've been there. I've thought the same of families after hearing stories or listening to the prayer requests at church. I work in the neonatal intensive care unit so of course I've seen parents suffer beyond what I ever thought I'd have to. I've learned a few things in the past ten months. I've learned what it's like to have no control over a situation. I've learned what real terror is. I've learned what it feels like to truly fear for the life of your child. I've also learned what it's like to lean on a support system you never even knew existed. We've always known we have a great family, lots of incredible friends, and jobs filled with wonderful people. Even though we have always been somewhat aware of that, we could never have been prepared for what you all have done for us.

Most importantly, we've learned how to completely lean on our God. When faced with something of this magnitude, you realize quickly that you have no choice. You have no choice but to get on your knees and beg for a miracle. That's exactly what he's done for us... for all of us. He's given us what we've asked for. We are so blessed.

Whew...Two down, one to go!

Hey everyone!!! Well, Lia did great yesterday! We let her go with the OR staff through those scary doors around 9:15 or so. They called us with the first update that they were starting surgery around 10:15. Throughout the surgery they updated us periodically when they were doing different things. That is so helpful. Anyway, she was finished about 2:00 and we spoke to Dr. Forbess. He is so amazing! He was very pleased with how things went. They brought Lia through the hall outside the ICU so we could see her before they got her settled in. She looked so wonderful and pink! They were able to get her off the breathing machine soon after that. Our favorite nurses in the CVICU took care of her after surgery. It was so nice to see all our friends up there. I think the nurses might be fighting over the chance to take care of "Princess Lia". Corey and I were able to leave for the night while my mom stayed with her. We were able to see the boys and get some rest. I braced myself for a phone call at some point during the night. After this particular surgery, they say the babies suffer from a huge "headache" because of the change in the circulation from the big vein that drains the blood from the head and neck. It made me sick to think she might be hurting like that and that we wouldn't be able to hold her because of all her lines. So I was ready to hear about how hard her night was...

This morning I called mom and she said Lia had a fantastic night! She said she woke up and ate well (what? she's never been much of an eater...) and that she wasn't fussy at all. They had given her some pain medicine every three hours or so and I'm sure that helped. Then I checked my email and Josclyn (our nurse) had sent me an email to tell me how great her night had been. She knew she'd be gone by the time we got there this morning and wanted to be able to tell me first hand how well it went. Thank You, God!!! I pray she continues to do this well with no setbacks and that we are able to bring her home soon. We are ready to move on with our lives and enjoy taking her places.

As always, thank you for your prayers and calls...We appreciate everyone and their invested interest in our sweet, sweet baby girl. We feel so blessed and can feel our God's presence at every moment. He is so good and has been so good to us. I'll keep the blog updated as I can....Love, Lisa

Oh I posted a picture of Lia in her Christmas tutu from the night before surgery and one of Lia right after surgery. More pics later...