Liliana Sue

Here are a couple of new pics for all of you. The first is Lili happy to be in mommy's arms. She is always so happy, but she lights up even more when we get her out of her crib. The next two are Liliana ready to go to the doctor. They were actually taken after we got back home from our doctor visit because we forgot we had the sunglasses with us. She is such a cutie. Remember how I said she is growing like a weed? She is up to 13 pounds. She has been doing so good on her CPAP trials that the doctor said it is ok to increase her times a little. Instead of 3 hours twice a day, we are going to try 4 hours twice a day. That is two whole extra hours of CPAP per day. The goal is to keep her start time and finish time for the day the same but to keep increasing her duration times until they eventually merge. This would eventually put her on CPAP all day and back on the vent at night. We have high hopes for her, and based on what she has shown us so far, I know she will continue to amaze us.

I've been trying to get lilicam so it is easier to view online. I think I may have a solution. For those of you who have a password, log on like you normally do. When the viewing window pops up click on the link on the left that says connection type. You will have to install Active X again. Make it so that there is a black dot in the circle next to TCP and click save. This should work! I am going to leave it connected so that you can view while I am at work but if I start having problems viewing I will take it temporarily off line. Please do not pass on your password for lilicam to anyone. If someone wants to view it they may contact me personally. Thanks! Enjoy your viewing!

Liliana is thriving at home. She continues to get so big. She continues to refine her movements and coordination every day. She is so attentive and loves when we help her to play with her toys. She is starting to comprehend some of our games like peek a boo, i'm gonna get you, and zerberts. She smiles a ton. We are so happy for her and all of her accomplishments, she amazes us every day!!! I told you I would post her latest measurements and here they are: 12lbs 3oz & 25.5 inches long. She's growing faster than our tulips. Here are a couple of pics that we recently took. I know you will enjoy.

Things have been busy, busy, busy around here. The highlight of my first day off from work was holding Liliana. I slept most of the day because I worked the night before. When I left for work that night I promised I would hold her for a long time the next day because I would be off. She always smiles when I pick her up and still have her in the air, it's so cute. She loves to get out of her crib. We try and put her in her rocker and hold her as much as we can. We can't just do that whenever we want to though. Sometimes we decide that it is best to leave her in her crib until her feeding is done running, it runs for 2 hours. When she gets too excited or is jostled around too much, she tends to spit up. We want to try and limit this as much as we can because if some of that would get into her lungs she could get a serious infection. Trying to sleep on my first night off was terrible. I think I slept for less than an hour around 2am and then was awake until around 1pm. I wasted some time reformatting the hard drive on our new computer because it had already gotten a virus. This was no fun task and took probably about a day, on and off, to complete. I don't want to ever do that again, but if I have to at least I know how to now. The next night of sleeping was much better which was a good thing because Liliana had a doctor's visit in the morning. The doctor's visit went great except for all of the waiting for the doctors. Liliana is growing like a week. I can't remember her measurements off the top of my head, but will try to remember to post them when I get a chance. She was seen by two doctors, one of which cauderized some granulous tissue around her g-button, she got an RSV shot, had an x-ray, and got a sticker. She was sleeping when they gave her the shot. It woke her up but she didn't cry. I don't think she even knew what happened. She wasn't too happy during much of the rest of her visit. She was crying for quite some time. That was around the time that we were waiting for one of her doctors. I don't think she likes to sit and wait around for too long, she takes after both of her parents. When things got moving again, she was back to her normal self. Later that night I got to take care of her myself again. She slept throughout the night with no problems. She had a couple hours of tummy time again which she enjoyed. The morning nurse arrived, I gave her report and went to bed. Now, here I am back at work. LeeAnn is home taking care of lili again without the help of a nurse. We had this opening because we had the scheduled nurse taken off of our case to help protect Liliana's health and safety. We're just happy it happened sooner than later although we wish that it would not have had to happen at all. There is good news though, LeeAnn's sister Stacey has been doing more research for us. She has gone out of her way once again to contact other nursing agencies in our area to help us get nurses to cover our needed hours. Things will hopefully start to look better soon. Thank you very much Stacey!!! That is all for now, I need to do some work here. Sorry, but I still do not have some new pictures to put up for you. Keep checking back though, I will have some up here soon.

Things have been busy around the Loveland house as uaual. Liliana is doing great. She continues to be happy and healthy with each new day. We hold her, read to her, and help her play with her toys. When you hold one of her arms up to one of her toys, her little hands go crazy. You can tell she is trying to touch it and move it and play with it. She is so amazing. I took care of her the other night. Toward the morning when she was still sleeping, I stood over her and just stared at her. A powerful emotion came over me which I cannot even describe. I was just truly amazed with her. She is getting so big. She has changed so much. It is an amazing feeling to know that this living breathing human being is a part of me. I was overcome with happiness.

Our nursing schedule has been one of the biggest stressors in our life right now. Nurses were scheduled according to my last month's work schedule which is the complete opposite of my work schedule for this month. This means that we have a lot of night time openings where we have no nurse. To add to this problem, a lot of shifts are being scheduled during the daytime where we don't necessarily need nurses all of the time. You would think that they would understand that we need nurses at night. I mean how many people can sleep during the day and stay up all night. Try doing that 3 days in a row when your body is not used to it. Fortunately, I am used to that because I work midnights, however LeeAnn is not. What if she were to get to the point of exhaustion where she just can't stay awake anymore. I know you've all had that feeling at least once before. When you get to that point, you can sleep right through anything. It is not safe for Liliana. It would be nice to have a nurse every night, but it would be even nicer to know that all of the nights that I work will be covered. I can take care of Lili myself on my nights off. However, I can't keep canceling shifts at work because I need to stay home because we either have no nurse or our nurse cancelled. If I have to call in or cancel a shift we loose out on a lot of money that we need and count on. I do not get paid vacation time or sick time. If I do not work, I do not get paid. If things do not start to shape up soon, I will have to consider taking a huge pay cut so that we will have the right benefits to try another nursing agency. I hope it does not come down to this because I'm not so sure that we can afford to take such a big cut in our finances right now. If only there was a way for me to get group insurance without having to take a huge pay cut. I hope everything starts to come together real soon. I do want to say a few good words about all of this: Thank you to the nurses that have rearranged their hours to help cover some of the nights that were left open. Hopefully our next schedule will be filled according to my CURRENT work schedule.

I had a nice 6 days off from work this past week. We had a lot of visitors. It was good to see all of you. Liliana is happy to have finally met you. I had to stay up with her 3 nights in a row because we did not have a nurse. I enjoy it, but with all of the visitors and trying to get things done during the day, it really wore me down. I started back to work on Thursday and was dead tired. We did not have a nurse thursday, so LeeAnn was going to have to do it without me. Her dad Craig was on call to come over and help out and support LeeAnn. She did an amazing job and did multiple things around the house to stay awake. I came home to a clean house, nearly slipped on the waxed floors, and was blinded by the sun reflecting off of the countertops. We both slept during the day and I was awoke early to LeeAnn telling me our nurse for the night had called in. Knowing that LeeAnn had not slept much during the day and that it would be very difficult for her to stay up all night 2 nights in a row, I cancelled my shift at work. If only I could get paid to do nursing in my own home. I am a nurse after all, and so what if she is my own daughter. It sure would make things a lot easier!!!!!!!!! Anyway, I am back to work tonight. I wish I was home with Lili but I know it can not be so. I will just do my work and look forward to seeing her in the morning.

I am sorry for all of the negative things today. I like to try and keep things as positive as possible on my BLOG, but sometimes you just need to vent. Rest assured that Liliana is doing very well. I wish I had some pictures, but I have not had too much of a chance to take any recently. I will definitely put some up soon.

Sorry to all of you who have been waiting for a post. It has been a while, and I know a lot of you check fanatically for updates. I really do try to post as much as I can and when I have the time and energy. It has been a busy week once again and I am running on very little sleep since Wednesday. I worked Wednesday night. Lili had another doctor's visit Thursday so I only got 2 hours of sleep that morning. I was up the rest of the day because I did not feel tired. We had a nurse Thursday night but I was not able to fall asleep until 4am. Friday I was up from around 1pm until 8am the following morning because we did not have a nurse. I did not mind because I got to spent a lot of time with Lili again. Friday I still did not catch up on too much sleep because we were expecting company. I was up Friday from 2pm until probably 8 am this morning because once again we do not have a nurse tonight. I have to be up again today because we are expecting more company. Sunday will be exactly like the two previous days because once again we do not have a nurse. Any nurses out there reading this, that is a call for some support over here. Pediatric Special Care would love to have you on our case and we would too! Anyway, our company today was greatly anticipated. It was my brother, his lovely wife, and their baby boy Logan. We have not seen too much of them since Lili was born and we have only seen Logan one other time. Lili desperately wanted to meet her new cousin who was born less than a month after she was. We had a great time. The kids loved to stare at each other. Today we are expecting my god parents and my cousin who we have not seen since Lili was born. They can't wait to meet her and we can't wait to see them. Anyway, Lili and I had a great night. She has been sleeping great. She did 3 hours of CPAP without any difficult in the beginning of the night. I had her on her tummy for about 3 hours again tonight. She doesn't even wake up when I flip her on to her belly. I think she likes to sleep on her tummy. I flipped her back over around 5am and she was tooting away. I changed her and 2 minutes later she was tooting again. Two large poops and 2 diapers all in 2 minutes. Anyway, I have to start doing some of her care so I will talk to you all later. Here are a couple of her latest pics.














The first picture is Lilicam. The second is tummy time on one of my nights alone with her. Then next three are Liliana and her cousin Logan. The last is a smile for Daddy. Enjoy!