Tee's blog: "Lillianna's Journey"

This is taken from Lilli's CarePage Mommy called and checked on me today and so far I have had NO spells. They adjusted my feeding tube and that might help with my reflux.I am eating 7cc a hour over 4 hours, then they let my tummy rest for two hours. So far that is good because I have no residual food left in my tummy. I am 3 lbs 11 oz. and just sitting here waiting on mommy. The nurse said she had been getting bad migraines( what are those?) so that is why she couldn't come yesterday. I sure miss her when she isn't here! The new cranial scan will be read on tuesday or wednesday and they will check my caffiene levels on tuesday they might need to adjust that because I am growing so fast. Yesterday was my birthday and mommy said she has a surprise for me. I think I like the present thing.I hope my daddy comes today too, I miss him but mommy says he works alot so she can take care of all of us. I am lucky to have a brother and sisters. Some of the babies in here don't have any and I think that makes them sad . But maybe not. Mommy said that when I get to wear my outfits it is all up hill from there and I will be coming home soon. I know she wishes it was tommorow or today but I am getting stronger and she still needs to get some things for me she said. She described my bassinet and said it is a princess one with a canopy (like I know what that is) she said she is waiting till closer for me to come home to get my carseat and other things . Tell her she needs to hurry PLEASE so I can come home! I Love you all!!!!! Till next time Lillianna

This is from Lilli's CarePage Good Morning everyone, I am sorry I haven't updated in a few days alot has been going on. I gained all the way to 3lbs 10oz.! I ended up needing another blood transfusion and then the Dr gave me some medicine because I was swelling on my face and feet. Probably all over but mommy was concerned about what she could see. So anyway I lost some fluid weight I am actually 3lbs. 8 1/2 oz. I am eating 16 cc over 4 hours then I eat again in 6 hours. It seems to help my tummy. Through all this mommy got another call from the Dr.(she gets scared every time they call her she said) But this time it was good news!!!! It seems that my last cranial ultrasound showed that the ventricals in my brain were decreasing in size and the blood clot is also decreasing. There is no new evidence that the bleed is getting bigger so the neurologist thinks it has stopped and that part is on a upward turn! But I am having more spells again right after my transfusion I didn't hardly have any now they are back. Most of the time I correct them myself and a few times a day I need a little reminder. Mommy was here for a very long time yesterday and got to hold me for about 45 minutes I even got to wear a little hat that mommy brought for me! I was so comfy in her arms . Jackie, one of my nurses, came over to tell mommy she needed to get some rest she is looking tired and pale she said. Mommy of course said she would rest when I was home. Then Jackie told mommy they all admire my bed every morning that I am the best dressed baby in there. The thing is mommy doesn't know who gave me my blankies but they are really pretty and I look better with the purple ones close to me. I think that will be my color. Daddy came to see me too and I was trying to wake up but it was late and I was tired all I could do was blink at him and mommy.This morning mommy called and my nurse told on me! She told mommy I was wide awake looking around sucking on my binkie and that I only had one spell and that was during my hands on. Now she knows I will be awake early in the mornings . I am not too happy with the Dr right now cause they gave me something to help me go poopy! My tummy was not happy either and I finally went but now I am tired from all that dirty diaper business and don't want to be messed with. Thats ok I will still be fine when mommy comes today. She said that my brother and sisters keep asking to see me I wish they would let them. I miss hearing all the commotion from home! I like all the gift notes that I get thank you. They help me and mommy. I will be ok , there are alot of people taking good care of me and even God is here! Some of the people no one can seems to see but I pointed to one for mommy yesterday and kept pointing in that direction. I get to start wearing my clothes soon. I reached 1600 grams so hopefully mommy will buy me some really cute things to put on. I get a special blankie today for all the dr.s and nurses to sign for my 1 month birthday! I geuss it is a big deal these birthday things. Here are the Dr.s again to check on me so I will write more soon. LOVE, LILLIANNA A.K.A Lily P.S Thank you all for your prayers for my little angel. The notes are great too they give us all encouragement to continue on. When I feel I can't bear it anymore I go back to her page and read them . Again THANK YOU !!! Vicky

Hi Everyone! Mommy has been busy trying to get things ready for when I come home and I guess no news is good news right. Well Saturday night when the nurse weighed me I was 3 lbs 2 oz. And doing good still having my spells, then on Sunday night Mommy was there when I was weighed again and I was 3 lbs 4oz, still having a few spells but I self corrected as the nurse said.I didn't really feel like being touched so I fussed at mommy a little but I also smiled alot at her when she talked to me. Today mommy came to see me again like she always does and I couldn't wait for her to touch me and talk to me. I stretched and yawned and smiled at her she would talk to me and I would smile even bigger. I have a strawberry birth mark on my belly and all the nurses and mommy were talking about it and I giggled a tiny bit but they heard me and mommy was almost crying but she said it was tears of joy. I smiled at her again. She stayed along time today I guess daddy was home with Stephen and Samantha.Nichole was w/ grandma. (Stephen is named after my grandpa Steve I guess they can't see him with me or anyone else that comes to visit cause mommy never says anything) Anyway mommy called tonight and my nurse told her that I now weigh 3 lbs 61/2 oz. I am back eating mommy's milk and I think that is why I am gaining so fast now. My head is still the same size and I guess that is good cause mommy kept thanking God again she was crying. (She sure does that alot but doesn't make sounds like me and the other babies in here) I am not having as many spells right now and that is good BUT I have alot of hiccups , I don't know which is worse.The nurse said I am doing really good.One of my favorite nurses Nikki came back to work today and was sad to see that I was back on the cpap, she told mommy I would be ok because I am a fighter. All the nurses are so nice to me and I Love the attention. Well I am going to take a nap now and will update you later. Love, Lillianna a.k.a Lilly I just wanted to let everyone know that the neurologist came to see Lillianna today and said she is doing good. They will continue to do weekly cranial ultrasounds on her to check for any further bleeding or swelling. Thank You all for your support and prayers she is getting stropnger everyday. Vicky

Hi Everyone it's me again Lillianna, I am doing good today mommy was here yesterday with my sister Sheila. I was looking at Sheila and held her hand while mommy held me. I was so comfy listening to her heart beat and her breath. I fussed a little because the cpap won't let me move like I want to. Mommy got a call she did NOT want to get. I have a slight bleed on the other side of my brain now, it could be that they just didn't see it before. But the worst part is that I have some swelling starting, which means there is a blockage. The Dr told mommy there is nothing they can or will do at this point that they are just going to watch it. They have this lady coming to see me from Occupational Therapy now.She is supposed to help asses if I am behind in any development I am suppsosed to be at right now. But mommy can tell you I move my head all around to get it where I want it. I know when my mommy is walking in and I start to fuss, it seems to make her move faster to get to me. I Love to lick her skin when she is holding me and the GOOD news is that I am now 2 lbs 15 oz. I have been doing better since I am on the cpap now. But it is uncomfortable. Mommy put pictures up in my isolette of my sisters and brother. Wow I have a big family to come home to and can't wait to play with Stephen he wants to come and get me now but the Drs won't let him.He says he can make me better and he is going to share all his stuff with me. I must be special cause mommy said Stephen doesn't really like to share his transformers but he put one up just for me! Nichole sent me a little Teddy Bear and the nurse hung it up on the top of my isolette so I can see it. I get clean blankies every two days from mommy she brought me 3 sets and I like the purple ones better. The best part of new blankies is the smell of mommy and home. I can't wait to see everyone. P.S. Mommy says Thank You for your prayers and support. Love, Lilliannna a.k.a Lily This is me and my mommy