Liliana Sue

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.