Liliana Sue

"I had my g-tube surgery Friday and I feel great" She honestly told me that, I swear. Everything went perfectly. Not too long after the surgery, she was already waking up and moving. What a change from last time. Saturday, she was back to normal except for a little swelling from the fluids that they had been giving her. She was back to moving like she was prior to surgery and maybe even a little more. She seems relieved and a lot more happy now that this is over. She has developed even more of a personality in the last couple of days. I saw more smiles out of her in one hour today than I have seen since she was born. It makes me so happy every time that she smiles that it brings tears to my eyes. The hospital is trying to get everything in order for us so that we will be able to take her home in another week or so. We are getting very excited to take her home.

The time is nearing for our walk to help those with neuromuscular disease. March 5th is coming up fast. For those of you new to my blog, this is a copy of a previous post from February 7th describing the event. Any contribution is greatly appreciated no matter what the size. Every little bit helps!!!

Donate To The Muscular Dystrophy Association
Help support the millions of families out there with myopathies, A.K.A muscle disease. Donate To The MDA. LeeAnn and I, along with our other team members, are participating in an event called MDA Stride & Ride on March 5th at Great Lakes Crossing in Auburn Hills, Michigan. (It is called stride and ride because while we will be walking, people with neuromuscular disease will be riding in wheelchairs or other form of transportation). We are walking, to raise money to help the lives of anyone affected by a neuromuscular condition such as our beautiful Liliana. We are walking with a group name of Liliana's Angels and will each be wearing shirts in her honor. Here is the info directly from Great Lakes Crossing's web site:

03/05/06 MDA Stride & Ride
Join MDA's 3rd Annual "Great Walk" to fight neuromuscular diseases on Sunday, March 5, 2006 at Great Lakes Crossing. Start forming your team today and "Stride & Ride"!
Have fun with your best fun-loving friends and coworkers. Recruit a team of 10 or more and spend the morning of March 5th with us here at Great Lakes Crossing. Raise funds to support MDA-funded research in Michigan.
Your team goal is to have each team member raise at least $65 - the amount that MDA spends on research every minute of every day.
For more information calll MDA at (586) 274-9000 or (734) 416-076 or (248) 474-0235

And this is some information from the MDA's website:

This event raises money to help defeat some 43 neuromuscular diseases that affect people of all ages. The money we raise will help the Muscular Dystrophy Association continue providing services such as MDA summer camps for youngsters, repair and purchase of wheelchairs, braces, communication devices and other equipment, and scientific research seeking treatments and cures.

Keep in mind, you do not have to walk or even show, our team is walking for you. All you have to do is feel good for knowing you have helped countless people with your donation.

If there is any more information that I can find I will definitely post it here.

Your donation is Tax Deductible!!!

To make a donation click on the link above that says "Donate to the MDA". This will take you to the MDA's secure website for the Stride & Ride. I thank you in advance for your contributions, you are making a world of difference for many people including Liliana.

The time is approaching for Lili to get her g-tube. We were told that they plan to do the surgery this Friday. We are excited and nervous because of her past experiences with her last 2 surgeries. Although, now that they know once again how she reacts to surgery, they are going to finally take that into account. I don't know the exact details at this time. We do not know and will not know what time the surgery will take place until sometime Thursday night. This will mean that she is one step closer to coming home. We are very excited.

Lili is still doing good. She tolerates her CPAP trials for most of the day and rests on ventilator support most of the night. She continues to work her muscles, showing noticeable improvements in her strength. She is starting to utilize her emotions a lot more. Her eyes get red and puffy and tears come rolling down when she is upset. It breaks my heart to see these tears. I've even seen her get those pouty lips when her tears are rolling. I have been pretty good at comforting her and stopping her crying. That is a good feeling. Her personality is really starting to take shape. We love her so much!

Sorry, once again no pictures. When I get a couple new ones on my computer I will add them to this post.

Thank you all for helping me achieve my goal! We have recently made it worldwide. Liliana's story has survived the long journey across vast oceans to places that I can only dream of one day visiting. I was checking to see who visited tonight and was very happy to see that I had a couple of visitors from Singapore and Japan. I would like to personally welcome my new international friends and I welcome many many more. Thank you for visiting! Please come back, invite your friends, and continue to follow the progress of Liliana Sue Loveland.

2/20/06 0500: Just added another country to the list. United Arab Emirates welcome to the group!
2/20/06 @ 0620: Just picked up the Phillipines and Malaysia as well! This is exciting!!!
2/20/06 1900: Lots of new places added today! In the us, we have added S. Carolina, Indiana, Nebraska, Iowa and Arizona. In the United Kingdom we have added London. You all continue to impress me!!!
2/21/06 1900: Welcome Mayrland, U.S., welcome Germany!
2/22/06 1900: Added Utah, U.S., Denmark, and Sweden today. (that I know of)

The time is nearing. We have been told that Liliana may be coming home within the next few weeks. It is a possibility that she will go for her third and hopefully final surgery sometime this week. They are going to put in a g-tube, which is a permanent feeding tube through her belly into her stomach. This will provide us with an easy way to make sure she gets her nutrition and medications once she is home. Once she has recovered from this surgery, she is free to come home. This is what we have been waiting over 2 months for. Finally we get to take her home and provide her with a more comforting and developmentally stimulating environment. Now we have to scramble to make sure that our house is all in order and ready to meet her needs as far as health, equipment and whatever else. We have many more challenges ahead of us, but we are ready to take on whatever comes our way.

Liliana is still continuing to improve every day. The nurses have been making us do all of her care while we are at the hospital in order to prepare us for when she comes home. It is definitely going to be a lot different in our home environment. The equipment is going to be different, the setting is going to be different, we will be on our own for most of the day... It is definitely going to be a big adjustment. The best part is that we will be a lot closer to her. We can spend more time with her. We can see her beautiful face whenever we want to. Speaking of beautiful faces her are a couple of her recent images.

I've added a site meter to my blog so that I could see how many people have been following up on Liliana's progress. To my great surprise I saw that I was getting quite a few hits, and not just locally but nationally. This is great! I want liliana's story to continue to spread. I assumed that Liliana was getting prayers from across the Nation but I did not know to what extent. Now I know. However, the tracker does not give any personal information. I know who some of you are just by your location, but others I do not. My site has been visited by people from the follownig places: California, Canada, Florida, Georgia, Illinois, Kansas, Massachusetts, Mississippi, Missouri, Ohio, Pennsylvania, Washington, Wisconsin, and of course Michigan. My goal is to reach every state and if I am lucky other countries around the world. Help my goal and please spread the word to all of your families and friends. Forward my blog address to anyone and everyone who you have not passed it on to already. If you do, you will be overcome with Liliana's love and a feeling of great happiness. Thanks!

Update 2/15/06 @ 1920: I just checked the site meter again and we have added a few more states: Virginia, New Jersey, Oklahoma, Colorado. Keep up the good work!!! 2/16/06 0100: Add Tennessee to the list.

We've made it to the U.S. Capitol, Washington, D.C.!!! Thanks for joining in D.C.

If you have not yet heard about our upcoming charity event to raise money to help fight neuromuscular diseases like Liliana's, please read the post below titled "Donate to the Muscular Dystrophy Association" that was posted on Tuesday, February 07, 2006.

Here are some of the latest pictures of Liliana as I promised!

Sorry it has been so long since my last post. Liliana is still doing good and working hard every day to get better. She is getting used to her trach and so are we. She was having some serious problems with mucous plugging her trach and not allowing her to get any air at all. Basically it was choking her and steps had to be taken immediately to clear them out. Fortunately, we have had one of her medications stopped and hopefully this problem will be resolved. Besides that, she has been more awake. I even got a couple of smiles out of her the other day. She is back to moving like she was before the surgery. The nurses have let us start doing more of her care to get us prepared for when she comes home. This is good because even though I am a nurse, working with a baby is much different. She has been tolerating CPAP for most of the day. Her respiratory muscles get tired in the evening and she needs to go back on AC for a while. This is good! Hopefully the more she goes on CPAP, the stronger her respiratory muscle will get. I know she can do it. I wish I had some new pictures to show you, but I don't. Keep checking back though because I will try and get some new ones on here sometime this week.

Help support the millions of families out there with myopathies, A.K.A muscle disease. Donate To The MDA. LeeAnn and I, along with our other team members, are participating in an event called MDA Stride & Ride on March 5th at Great Lakes Crossing in Auburn Hills, Michigan. We are walking to raise money to help the lives of anyone affected by a neuromuscular condition such as our beautiful Liliana. We are walking with a group name of Liliana's Angels and will each be wearing shirts in her honor. Here is the info directly from Great Lakes Crossing's web site:

03/05/06 MDA Stride & Ride
Join MDA's 3rd Annual "Great Walk" to fight neuromuscular diseases on Sunday, March 5, 2006 at Great Lakes Crossing. Start forming your team today and "Stride & Ride"!
Have fun with your best fun-loving friends and coworkers. Recruit a team of 10 or more and spend the morning of March 5th with us here at Great Lakes Crossing. Raise funds to support MDA-funded research in Michigan.
Your team goal is to have each team member raise at least $65 - the amount that MDA spends on research every minute of every day.
For more information calll MDA at (586) 274-9000 or (734) 416-076 or (248) 474-0235

And this is some information from the MDA's website:

This event raises money to help defeat some 43 neuromuscular diseases that affect people of all ages. The money we raise will help the Muscular Dystrophy Association continue providing services such as MDA summer camps for youngsters, repair and purchase of wheelchairs, braces, communication devices and other equipment, and scientific research seeking treatments and cures.

Keep in mind, you do not have to walk or even show, our team is walking for you. All you have to do is feel good for knowing you have helped countless people with your donation.

If there is any more information that I can find I will definitely post it here.

Your donation is Tax Deductible!!!

To make a donation click on the link above that says "Donate to the MDA". This will take you to the MDA's secure website for the Ride & Stride. I thank you in advance for your contributions, you are making a world of difference for many people including Liliana.

P.S. Liliana is looking and feeling much better now.

If you read my last post, you will already know that Liliana had a rough weekend. I thought maybe it was going to carry into this week, but today she showed me otherwise. Right when I saw her today I immediately saw a difference in her. Some of her swelling had gone down. She has been waking up a lot more. We were able to hold her. She looked at me for about 10 minutes while I was holding her and then tried to get some more rest. The nurses have been able to move her around and reposition her without her oxygen saturation dropping. Her sodium level which was low is almost back to normal. She has not been having any more mucus plugging. There is all the good news, now it is time for the not so good. The fluid around her lungs has not improved or worsened, but is still there. She is now starting to get some fluid build-up in her abdominal cavity. Just like the fluid around her lungs (pleural effusion) they do not know what is causing the fluid in her abdomen (ascites). Her previous heart, kidney and liver functions have been normal. Now they are going to check them all again to make sure that nothing has changed. She is still getting a lot of support on the ventilator, but hopefully as she starts to wake up more they can begin the weaning process again. She just looked like a happier baby today and I'm sure she feels a lot better. It's amazing how fast your spirits can be lifted when you can tell that your baby looks and feels much better. Wish I had some pics to post with this, but I do not. Maybe in the next couple of days I will be able to post some.

For those of you who don't know, Liliana underwent surgery this week. She underwent a tracheotomy on Friday. We didn't even know that they were planning it so soon until last Wednesday. It took us by surprise and did not give us too much time to prepare ourselves mentally and emotionally. We were increasingly nervous because of Liliana's previous experience with general anesthesia. This nervousness would turn out to be justified. Immediately after the procedure she was sleeping. We were told that it would take a while for the anesthesia to completely be out of her system. After 24 hours and she was still not waking up we started worrying more and more. Not only this, she has developed multiple other complications. She was extremely pale. Aparently she needed to receive some blood, which improved her color. Her sodium level was extremely low, which is probably another reason why she wasn't waking up and definitely not feeling too well. Her trach is very positional and if her neck and body are not aligned in the right way she does not get enough oxygen and desaturates. When she does desaturate it takes her a long time to come back up to normal. Most of the time she has been on higher amounts of oxygen than she has been on in a long time. She has been getting mucus plugs that block her trach and also cause her to desaturate. She is extremely swolen which probably does not feel to well. She has fluid around both of her lungs which could impede her breathing if it increases. Luckily, the fluid level has remained the same so far. She was so stressed by this and everything going on that yesterday they had to give her a sedative medication to calm her down. I just feel so bad for her, she can not be feeling well at all. The bad thing is that the doctors have to take things one at a time right now. I just hope that she starts to feel better real soon. The only good thing that has come out of this so far is that we can now see her face without all the tubing in the way, and a beautiful face it is. However, it is a lot more swolen than it usually is. She will look even more beautiful once all of this swelling goes down. Anyway, this is the latest on what is going on. I wish I had some better news for you all. Here are some recent pictures. Hope you enjoy.
This was the day of the surgery. She was all ready to go, we were just waiting for them to come get her. This is the last time we would see her with an endotracheal tube.

This was after the procedure obviously. Overall she looked fine after the surgery. She was a little pale but that was to be expected. Over the next 24 hours however, things considerably worse.

This is a cute picture of her. She looks as if nothing had happened.

You can just tell how swolen her face and body are in this one.

Make sure you click on the photos to view the larger sizes. I hope to have some good news for you all next time I post, and some better pictures as well.