Tuesday, January 31, 2006
Latest Pictures
Here are the pictures that you all have been waiting for. I haven't put any of Liliana's recent photos on here in a little while, so here they are.
This was the day that they switched her back over to the conventional ventilator. When we arrived to visit her that day, they were in the process of making the change and we were very excited. Liliana was a little stressed out by the change at first, but now she is completely relaxed.
Switching her back to the conventional vent meant that we could hold her again.
We also were able to start giving her tub baths again. She has only had one tub bath prior to this.
Not only did she switch vents this past week, she also got a big girl bed. She was starting to outgrow her other one since she is now over 9 pounds. Now she has a lot more room and we are able to put all kinds of toys around her.
She even has room in her crib to be put into her bouncy seat. She didn't like it the first time she was put into it, but she is enjoying it a lot more now. This is one of my favorite pictures of her. This past week has been an awesome week for all of us. Liliana is getting so big and strong despite her muscle condition. She has been tolerating 1 1/2 hour CPAP trials on the vent without any problems. I'm so proud of her. She seems so happy (Drew that was for you). We look forward to what the future has in store for us and once again we can't wait to get her home. Keep the prayers coming!!!
This was the day that they switched her back over to the conventional ventilator. When we arrived to visit her that day, they were in the process of making the change and we were very excited. Liliana was a little stressed out by the change at first, but now she is completely relaxed.
Switching her back to the conventional vent meant that we could hold her again. 
We also were able to start giving her tub baths again. She has only had one tub bath prior to this. 
Not only did she switch vents this past week, she also got a big girl bed. She was starting to outgrow her other one since she is now over 9 pounds. Now she has a lot more room and we are able to put all kinds of toys around her.
She even has room in her crib to be put into her bouncy seat. She didn't like it the first time she was put into it, but she is enjoying it a lot more now. This is one of my favorite pictures of her. This past week has been an awesome week for all of us. Liliana is getting so big and strong despite her muscle condition. She has been tolerating 1 1/2 hour CPAP trials on the vent without any problems. I'm so proud of her. She seems so happy (Drew that was for you). We look forward to what the future has in store for us and once again we can't wait to get her home. Keep the prayers coming!!!
Saturday, January 28, 2006
Non-Members Can Now Post Comments
For all of you family and friends out there who are not Blogger members, you can now post comments anonymously...if you wish. I accidentally had this feature turned off. The more comments I get, the more my day is filled with joy.
Thank You DTE River Rouge!
I would like to say thank you to all of the wonderful people at Detroit Edison River Rouge Power Plant. Thank you for your prayers, care and support. LeeAnn, Liliana and I have received your card and generous donations. It is amazing how many caring and generous people such as yourselves have impacted our lives. Your prayers and support have helped Liliana to grow and continue to grow stronger each day. She will always know how many people were there for her in this difficult time. Thanks again to the DTE crew and anyone who has helped our family in any way.
More Good News!
Liliana has been doing extremely well ever since they switched her back to the conventional ventilator. She has been a lot more calm and relaxed. They have even been doing further weaning attempts to get her using her respiratory muscles a little more. Currently they have been putting her on CPAP trials. Most of the time her vent is set in assist control mode. In that mode the machine automatically breathes for her so many times per minute (as many times as they have her set at). In that same mode if she decides she wants more breaths than what she is set at, she can initiate extra breaths. However, if she does initiate the extra breaths, the machine helps her with those breaths exactly the same as the breaths she automatically gets. Now they are trying her on CPAP trials. Initially they told me that they were going to try her for 15 minutes at a time. In CPAP mode she is still on the vent, although she breathes "on her own". All the machine does is give her a constant pressure. She inhales and exhales on her own. If her respiratory muscles continue to get stronger, they will be able go down on that continuous pressure until she is breathing completely on her own. Anyway, today she tolerated being on CPAP for an hour without any difficulty. What a strong and amazing little girl. She continues to amaze us every day. I wish I had some pictures to go with these latest developments, but I have not been able to upload any yet. I promise I will have some for all of you to see by Tuesday, so be sure you check back.
Friday, January 27, 2006
Good News!
Liliana has successfully weaned off of the oscilating ventilator and back onto the conventional ventilator. She was switched over on 1/25/06 and is doing really well. We got to hold her for the first time since her muscle biopsy which was a month ago. It felt so good to hold her again. I wish that I could have held her longer. When she gets home I will hold her all day long. They put her in a big girl crib. She has lots of toys all around her. We got to give her a tub bath. She has only had one other tub bath and that was a month or so ago. She seemed to enjoy it. We were at the hospital the day they switched her vent and she was awake with us pretty much the whole 8 hours that we were there. We took lots of pictures of her on her new vent, in her new crib and during her tub bath. Unfortunately, I am not able to post them tonight. I will post them as soon as I can with some more updates. Instead I will just post a couple of recent pictures from a few days prior to her vent change that most of you may not have seen yet. We are so excited that she is doing so well. This means that she is one step closer to coming home.
Tuesday, January 24, 2006
New Baby Girl
Hello all. Most of you that have visited my blog so far have been associated with my brother's blog. He has posted about my newborn baby girl Liliana on his blog. Now that I am getting the hang of this blogging stuff, it is my turn.
Liliana Sue was born on December 6th 2005. Coincidentally this is the same day that I was born. If she would have waited 52 minutes longer we would not share the same birthday. I was very excited since I made a wish early that morning that she would come see me on my (our) birthday.
She was delivered c-section due to breach position, which we already knew from our previous doctor visit. However it was an emergency c-section since my wife, LeeAnn, went from her water breaking to full blown labor to delivery in under 2 hours and that is with me making about 60-80 minute round trip to pick her up and get her to the hospital. It may be the quickest labor in history, maybe I should call Guiness. Everything was a blur until my wife was all prepped for the c-section. The operating room atmosphere was calm and I was able to collect my thoughts, for a while anyway. Liliana was delivered at 2308 on December 6th and I watched the whole thing. I wish I would have had the camera but I never really had any time to grab it out of the car with all the excitement and rush to get prepped for the c-section. She came out without any problems, butt first because she was breech. The nurses swept her over to the warmer and began doing their assessment. We thought everything was fine. We heard her wimper from time to time but never heard a real good cry. The doctor that had begun stitching up LeeAnn asked the nurses if everything was ok and when I heard a pause before their answer, I knew right away that something was wrong. We were informed that they were going to have to take her to the NICU for observation. We had a few minutes to hold her before they whisped her away. We did not see her again for several or more hours. Before we were able to see her, we were informed that she had a sever lack of muscle tone and no reflexes otherwise known as "floppy baby syndrome". The only thing that they could not tell us is what was causing it. We did get to see her eventually and this is what we saw...
...a beautiful baby girl who looks as perfect as can be. However, her muscles are very weak and we had no explination of why. The doctors struggled and exhausted almost every option to diagnose her condition, and almost a month after she was born she still had no diagnosis. She had a MRI, multiple blood tests, genetic testing, EMG, and finally a muscle biopsy. Her muscle strength improved over the weeks, but she was and still is well below where she should be. Her reflexes slowly began to develop but her suck and cry continued to be very weak and she was not swallowing her secretions. She tolerated being on room air and low flow oxygen for almost a week and then began to require CPAP which is a mask over her face that forces air into her lungs.
This made us nervous because if her lungs got a little weaker she would require a ventilator. She stayed on the CPAP for 2+ weeks before the dreadful day came. All other options were exhausted and it was time for the final test which would finally give her a diagnosis, a muscle and nerve biopsy. To get the muscle and nerve samples she would have to undergo surgery with general anesthesia, which meant that she would have to be put on a ventilator. This scared me because I knew if she went on the ventilator it would be very difficult to get her off. Immediately after her surgery, her blood oxygen levels were low and her heart rate slowed. She had to be given chest compressions and epinephrine which returned her back to normal. Her chest x-ray showed lung collapse and she had to be placed on a special ventilator called an oscilating ventilator. She has been on this vent ever since, about 3 weeks now...
You're probably wondering what the muscle biopsy showed. Well, it took another week or so to get those results. I had a feeling the news was not going to be good. They told us that she has nemaline myopathy. It is a genetic condition resulting in a structural defect of the muscles. It does not get any better. It is rare, and there are currently no treatments for it. There are multiple severities of the disease, that usually depend on when in life the condition presents itself. Newborn onset is usually the most severe. However, just based on the improvements we have seen in Liliana I am convinced that this is not her case. Anything can happen. The good news is that this condition does not affect the brain or nerves. Her brain has just as much potential to learn as everyone else. So what is going on with her now? She is still in Intensive Care. She moves a lot more. I think her legs are really strong. However, some muscles are better than others. For instance, the muscles to flex the foot down are stronger than the ones that flex the foot up. For this reason, she has to wear braces on her feet and hands intermittently so that she doesn't get foot drop and because she wasn't flexing her fingers enough. She moves her hands pretty well but her upper arm and shoulder muscles are extremely weak and it is hard for her to lift them up on her own. She is a growing girl. She is currently up about 3 pounds from her birth weight of 5 pounds 12 ounces. She is a lot more awake and loves to be read books and receive muscle massages. We give her a bath every day and change her diapers when she needs it. We do as much as we can for her while we are with her. Ever since she has been on the oscilating vent we have not been able to hold her. I absolutely can not wait to hold her again! If only we can get her back on the normal vent so we can hold her once again. I don't think I will ever be able to put her down. We have been to the hospital every day since she was born for hours on end. We have since had to go back to work but still make time to see her each and every day. She probably has about half of the world praying for her and I wouldn't be surprised if I recieved a random e-mail forward mentioning her. So, what is the plan? To hopefully keep weaning her settings on the oscilating vent so that we can get her to the point where she would tolerate a "normal vent". After that we would hopefully shoot at getting her back on CPAP and eventually nothing, then home. I'm not going to even mention worse case scenarios because we are hoping for the best. That is all I can think of for now. To end, here are a few more of her most recent pictures...
Our friends and families have been amazing, being here to support us and also giving us our space when we need it. We have been given gifts of food, money, and love. Several people are organizing fundraising events and helping us find information on support groups, financial aid, nemaline myopathy and much much more. I would like to give a special thanks to Nana and Papa Loveland, Grandma and Grandpa Kemler, all of our siblings especially Stacey who has been providing us with ready made meals which have saved us a lot of time and money, Cathy McGee for all of your fundraising efforts and much more, and all of our family and friends who have extended their love and prayers. We know you all are there for us and we appreciate it very much.
Please keep an eye on my blog for further updates on Liliana's condition and whatever else is going on im my life. Also, I will continue to put updated photos on here as often as I can. To see all the photos I have uploaded so far click the flickr icon in the sidebar. Family and friends out there feel free to become members and post on my blog or post anonymously without becoming a member. Thanks for looking.
Liliana Sue was born on December 6th 2005. Coincidentally this is the same day that I was born. If she would have waited 52 minutes longer we would not share the same birthday. I was very excited since I made a wish early that morning that she would come see me on my (our) birthday.
She was delivered c-section due to breach position, which we already knew from our previous doctor visit. However it was an emergency c-section since my wife, LeeAnn, went from her water breaking to full blown labor to delivery in under 2 hours and that is with me making about 60-80 minute round trip to pick her up and get her to the hospital. It may be the quickest labor in history, maybe I should call Guiness. Everything was a blur until my wife was all prepped for the c-section. The operating room atmosphere was calm and I was able to collect my thoughts, for a while anyway. Liliana was delivered at 2308 on December 6th and I watched the whole thing. I wish I would have had the camera but I never really had any time to grab it out of the car with all the excitement and rush to get prepped for the c-section. She came out without any problems, butt first because she was breech. The nurses swept her over to the warmer and began doing their assessment. We thought everything was fine. We heard her wimper from time to time but never heard a real good cry. The doctor that had begun stitching up LeeAnn asked the nurses if everything was ok and when I heard a pause before their answer, I knew right away that something was wrong. We were informed that they were going to have to take her to the NICU for observation. We had a few minutes to hold her before they whisped her away. We did not see her again for several or more hours. Before we were able to see her, we were informed that she had a sever lack of muscle tone and no reflexes otherwise known as "floppy baby syndrome". The only thing that they could not tell us is what was causing it. We did get to see her eventually and this is what we saw...
...a beautiful baby girl who looks as perfect as can be. However, her muscles are very weak and we had no explination of why. The doctors struggled and exhausted almost every option to diagnose her condition, and almost a month after she was born she still had no diagnosis. She had a MRI, multiple blood tests, genetic testing, EMG, and finally a muscle biopsy. Her muscle strength improved over the weeks, but she was and still is well below where she should be. Her reflexes slowly began to develop but her suck and cry continued to be very weak and she was not swallowing her secretions. She tolerated being on room air and low flow oxygen for almost a week and then began to require CPAP which is a mask over her face that forces air into her lungs.
This made us nervous because if her lungs got a little weaker she would require a ventilator. She stayed on the CPAP for 2+ weeks before the dreadful day came. All other options were exhausted and it was time for the final test which would finally give her a diagnosis, a muscle and nerve biopsy. To get the muscle and nerve samples she would have to undergo surgery with general anesthesia, which meant that she would have to be put on a ventilator. This scared me because I knew if she went on the ventilator it would be very difficult to get her off. Immediately after her surgery, her blood oxygen levels were low and her heart rate slowed. She had to be given chest compressions and epinephrine which returned her back to normal. Her chest x-ray showed lung collapse and she had to be placed on a special ventilator called an oscilating ventilator. She has been on this vent ever since, about 3 weeks now...
You're probably wondering what the muscle biopsy showed. Well, it took another week or so to get those results. I had a feeling the news was not going to be good. They told us that she has nemaline myopathy. It is a genetic condition resulting in a structural defect of the muscles. It does not get any better. It is rare, and there are currently no treatments for it. There are multiple severities of the disease, that usually depend on when in life the condition presents itself. Newborn onset is usually the most severe. However, just based on the improvements we have seen in Liliana I am convinced that this is not her case. Anything can happen. The good news is that this condition does not affect the brain or nerves. Her brain has just as much potential to learn as everyone else. So what is going on with her now? She is still in Intensive Care. She moves a lot more. I think her legs are really strong. However, some muscles are better than others. For instance, the muscles to flex the foot down are stronger than the ones that flex the foot up. For this reason, she has to wear braces on her feet and hands intermittently so that she doesn't get foot drop and because she wasn't flexing her fingers enough. She moves her hands pretty well but her upper arm and shoulder muscles are extremely weak and it is hard for her to lift them up on her own. She is a growing girl. She is currently up about 3 pounds from her birth weight of 5 pounds 12 ounces. She is a lot more awake and loves to be read books and receive muscle massages. We give her a bath every day and change her diapers when she needs it. We do as much as we can for her while we are with her. Ever since she has been on the oscilating vent we have not been able to hold her. I absolutely can not wait to hold her again! If only we can get her back on the normal vent so we can hold her once again. I don't think I will ever be able to put her down. We have been to the hospital every day since she was born for hours on end. We have since had to go back to work but still make time to see her each and every day. She probably has about half of the world praying for her and I wouldn't be surprised if I recieved a random e-mail forward mentioning her. So, what is the plan? To hopefully keep weaning her settings on the oscilating vent so that we can get her to the point where she would tolerate a "normal vent". After that we would hopefully shoot at getting her back on CPAP and eventually nothing, then home. I'm not going to even mention worse case scenarios because we are hoping for the best. That is all I can think of for now. To end, here are a few more of her most recent pictures...
Our friends and families have been amazing, being here to support us and also giving us our space when we need it. We have been given gifts of food, money, and love. Several people are organizing fundraising events and helping us find information on support groups, financial aid, nemaline myopathy and much much more. I would like to give a special thanks to Nana and Papa Loveland, Grandma and Grandpa Kemler, all of our siblings especially Stacey who has been providing us with ready made meals which have saved us a lot of time and money, Cathy McGee for all of your fundraising efforts and much more, and all of our family and friends who have extended their love and prayers. We know you all are there for us and we appreciate it very much.
Please keep an eye on my blog for further updates on Liliana's condition and whatever else is going on im my life. Also, I will continue to put updated photos on here as often as I can. To see all the photos I have uploaded so far click the flickr icon in the sidebar. Family and friends out there feel free to become members and post on my blog or post anonymously without becoming a member. Thanks for looking.
Saturday, January 21, 2006
Hello to all. I am starting this blog to see what all the hype is about. I was just reading over my brother's blog and he had a list of 7's and one of them was, 7 people he wanted to join in blogging. I thought I would give it a shot. So, keep your eyes open and I will update my profile and pictures as soon as I get a chance.
