Liliana Sue

I'm still trying to capture one of those million dollar smiles on camera. Have only been able to capture a half smile so far.













Here is Lili looking all pretty.

My mom said that people keep asking what movies Liliana owns because they want to buy her some movies. She suggested that I put a list in the sidebar. I have created a list underneath the links section. It is coincidentally called Movies That Liliana Already Owns. She has already started a small collection of DVD's. To see what she owns just look in the sidebar. I will update it whenever she gets a new movie.

I'm very sorry that it has been a week since my last post. I can't believe that a week has passed already. It has been a great week with liliana but a busy week with everything else going on. Liliana continues to do great. She is happy as can be. She smiles more an more. She soaks up all the attention that she gets and sometimes when you have to step away for a moment she starts to cry. When you come back and talk to her and caress her she stops right away. I'm starting to get more comfortable with handling her since we are on our own a lot of the time and don't have the nurses to help us. I was holding her yesterday in my arms while I was standing. It was the greatest feeling. I wasn't used to holding her this way and my arms tired real quick. Now that I know what I am doing I will do that more often. We have had to take Lili on two more trips outside of the house since I last wrote. She has had to go and get blood drawn and she has had a checkup with another one of her doctors. He said everything looks perfect and he can not believe how relaxed we are with everything. That makes me feel good. Yesterday was an adventure to get to that appointment. Everything that you think will never happen did. When we first started our trip things were going great as usual. We got onto the highway and after a couple of minutes Lili needed suctioning. The nurse tried to suction her but the suction machine would not suck. She continued to try and get it to work but was having no success. Liliana continued to desaturate so I had to quickly pull over on the side of the highway and hop out. LeeAnn handed me a De Lee suction catheter and continued to try and figure out the portable suction machine. For those of you not familiar with a De Lee catheter, which I assume is most of you myself included up till yesterday, it works manually. One end of the catheter goes into her trach and the other end goes into MY mouth. I had to manually suction her about 5 times using only the suction generated by my own lungs. It was quite a new experience and worked perfectly. Liliana's oxygen saturation returned to normal and LeeAnn figured out that when the lid to the suction canister was put on something got wedged between the lid and the container which would not allow it to create a suction. I don't think that mistake will be made again. The rest of the day went fairly well. Her doctor visit went great. The doctor said that everything looks great and he gave us some suggestions about weaning her vent by doing CPAP trials. It was very tough getting back to work this week after having 5 days off when she came home. My first day back I felt sick to my stomach. After I saw how well LeeAnn handled everything on her own, my jitters went away. My 4 day stretch at work went on without any major problems at home and now I am off and can't wait to spend some time with my baby girl. I'm excited for Saturday. It looks like we don't have a nurse at night again. I had a lot of fun taking care of her last Saturday night when we didn't have a nurse as well. I kind of wish that I could have one of these days to take care of her every week. Here are a couple of pictures from the last week.

Happy St. Patty's Day to all. I hope you were wearing your green today. I'm experimenting with a new idea...green wine. I had some blue and yellow food coloring laying around.

"I went for my first doctor visit today. It was me, mommy, daddy, and my favorite nurse Gayle. I'm getting used to traveling. I really enjoy car rides. Sometimes I sleep in the car and sometimes I just happily look around and take in the environment. It is cold outside, but mommy and daddy cover me up and keep the breeze out. They sure are outstanding parents. We made it to and from the doctor's office without any problems. I was a little unsure about my new doctor. Daddy tells me he is going to be my pediagician, I think it has something to do with magic. When he was checking me out I started to cry because he made mommy and daddy disappear, but when he moved they were there again and I was happy and stopped crying. He turned out to be a really nice guy. He said he just wanted to get to know me this time, but I think he has something else planned for our next visit. I'm not looking forward to that. Oh well, I know it has to be done. He said that sometimes I may be able to just stay at home and he will come and see me there. That sure is nice of him. Mommy and daddy took me back home and I got my dinner and took a nap. And now here I am writing you this message. I'm running out of things to say since I only know 200 words. I will write back when I expand my vocabulary. Here are some pictures my daddy took of me today. He made the nurse embarrassed because of all the pictures he took at the doctors office."

The title speaks for itself.
This image was from before Lili came home, but I just love it so much that I had to share it.

We survived our first night with Lili home. She is doing so well and seems so happy. She has shed a few tears, but all babies cry and we just need to keep learning what it is she wants when she cries. We are starting to get a little bit of a routine down. We even have time to do things around the house without having to stay up late to get them done. I guess that's how things go when you don't have to spend half of your day every day at a hospital. I can't say we miss that place but we certainly miss the people. Thank you everyone at St. John's for helping us get home!

The day has finally come and the time has already passed. Liliana is finally home and happy as can be. We were expecting a difficult transition because of Liliana's low tolerence to change. However, the transition occurred without any problems. She handled the 40 minute drive home from the hospital like it was no big deal. She slept the whole way. We got her home and into her crib at which point she woke up and gave us her first smiles at home. We got her situated and all of her equipment hooked up. She appears to love her new room. We could not be happier to finally have her in our home. Now we can see her and be close to her any time we want:-)

Liliana is doing so good! She is set to come home this Wednesday if everything continues to go as expected. We absolutely can't wait. A more in depth post will follow along with some new pictures. Keep Praying!!!

Here are some more pictures from moving day:

I visited Liliana this morning after work and she was the happiest baby alive. She was sleeping when I first got there. When I sat in front of her for a couple of minutes she began to open her eyes. When she got them open and realized it was me, she gave me one of the biggest smiles that I have ever seen from her. The rest of the visit continued in much the same way. She was so happy!!! She smiled more today in our short hour than I think she has smiled since she was born. She makes me so happy. I am relieved that she feeling much better and her personality has returned and continues to grow. I wish that it was easier to photograph one of her smiles. When she comes home I will have more time to try. For now I have assembled a picture to show you how happy she is.

Updated 3/14/06:
We have finally captured one of those award winning smiles. I've seen her smile a lot bigger, but this sure shows her happiness. Here is a before and after:

Sorry I kept you all in suspense last week. I will try not to do it again. We had a busy week. Liliana has been switched to her ventilator that she will go home on. She needs to be stable on this ventilator before she can come home. She has been having the toughest time getting used to this new machine. While it ultimately does the same thing as the hospital vent, it does it differently and I'm sure it feels very different to her. She had us really worried for her. The new vent was making her work harder to breathe than we had ever seen her do. Her personality that she had gained after her g-tube surgery was lost once again when she was placed on her home vent. She has been a lot more tired and a lot less tolerant of activity and stimulation. Over the last couple of days however, she has been waking up more. Yesterday, I saw my first partial smile since she was placed on the home vent last Wednesday. I hope she is starting to feel better and continues to improve every day just like she always does. LeeAnn and I had our "all night stay" with Liliana last Friday. We made it an all day instead. We were supposed to stay at the hospital all day, do all of Lili's care, and get used to her home equipment so that we would be more prepared to take her home. Liliana was having a bad day after being on her home vent for only 2 days. The stress level was unbearable. We felt so bad for her. We just left her alone and let her rest as much as we could. Any amount of stimulation made things worse for her and us. Even though we were not expecting such a great chllenge that day, I think we handled it very well. Hopefully next time she will be a little more stable. Besides the hospital issues, I had to deal with a crazy week of work, a late comcast guy, missing mail, lack of sleep, and more. I did have a great end to my week. We had our Stride & Ride for the Muscular Dystrophy Association on Sunday. It was a lot of fun and the amount of money that our team raised made me very happy. Our team took first place for the most amount of money collected. They want to interview us on live television...that sounds like a job for LeeAnn. You can read more about this event in my previous post. That is all for now. Here are a couple of new pics for you all:

This is Liliana and her new home vent:












This is her getting some beauty sleep:













This is her wide awake and ready to play:

As many of you know, the Stride & Ride to raise money to help fight neuromuscular disease was this past Sunday. It was a great success. There were a lot more people than I was expecting to see. It was put on and coordinated really well. They had music, dancing, food, prizes, and much more. The amount of money collected to help fight neuromuscular disease was nearly $60,000. Our team, "Liliana's angels" collected nearly $10,000 on our own and took first place for collecting the most money of any single team. It was such a great feeling. We couldn't have done it without all of our friends and families. I want to thank all of you who contributed and helped us achieve such success. Seeing the amount of money that this one event raised, I know that with all of the events nationwide Liliana's life will be positively impacted in some way. I hope you all are willing to support us again next year, because we are looking forward to participating again. Here are some pictures from the event:

I don't know what to type today because I am too tired and too stressed out to think. Instead of writing something negative, I decided to just keep it positive and upload some of Lili's latest and greatest images. She is still doing great and expected to come home soon.