Tee's blog: "Lillianna's Journey"

This was taken from Lilli's CarePage Well I am now 5 lbs 2 oz. One of the NP told mommy I would come home when I was 5 to 7 days free of bradies that didn't need to be stimulated. But today Nurse Paula came back and so did Dr. Torres and they decided I can go home on friday!!!!!! Mommy was so excited. My ROP (eye thing) is unchanged. I will get another Cranial Scan before I go home and follow up with all my other Drs from home. I am going home on a monitor and mommy and daddy have training on that tomorrow morning. Now mommy said she has to go get my car seat and bassinet and some other things friday morning before they come and get me and my Grandma Norma is picking my brother and sisters up for mommy on friday and not telling them I am coming home so I can surprise them. I can't wait. Mommy said she is going to buy me the prettiest dress she can find for me to wear home and on Easter Sunday. She will she everyone pictures and updates frequently. She told me to behave so I can come home friday. ( how long is friday?) I got my first shots today and they hurt a little bit but it feels better now. Until Friday. Lillianna

This was taken from Lilli's CarePage Hi everyone, Sorry it has taken so long to get back to you all with an update on how I am doing. But here goes. I have been a busy little girl growing I am up to 4 lbs 11 oz. I am now eating all my food from the bottle or breast and I am sooo glad too! I pulled my feeding tube out myself on friday night and my nurse didn't see a reason to put it back in. I am no longer on phenabarb. they told mommy that was just for my series of highda scan tests. Everything came back good. My stool is back to a normal color. All my labs came back good. One was for my bilirubin and something else, it showed that my gall bladder is still sludgy but that should correct itself. I had my second eye exam and it showed that I have ROP that is eye disease or prematurity. I am only a lew 1 and my eye Dr said that he is comfortable saying it might clear up on it's own. I get another exam tomorrow morning and then we will see what is going on if it is developing to more or not. Mommy will have to explain that to you all. Mommy talked to the head Neonatologist and he said I will be coming home on a monitor and my medicine caffiene. But not I am having more bradys and I have had to be stimulated a few times to come back . Usually I am self correcting but this reflux gets to me about once every 24 hours. Because it always happens about 15 to 20 minutes after I have had my bottle. It looks like that is the only thing stopping me from going home. Mommy took alot of pictures of me on her cellphone and will be setting up a link to show all of you me as I progress. Sheila said I look like a real baby now and I am soo cute! Everyone says that I am adorable to mommy and I smile alot. Even Stephen said I am cute. I got to see my sister Nichole the other day and I am glad cause it was a VERY sad day in the hospital. One of my room mates took a really bad turn and he didn't make it. Mommy cried for a long time and so did his mommy. His mommy came up to the room yesterday to find my mommy and she told me to stay strong and I was a living doll. I tried to talk to her but she didn't understand me. So mommy told her the angels were with him when he went to live with God. We are all trying to get back to being happy here in my room. I am now next in line to go home with my family. I can't wait ! Mommy can't wait either she tells me everyday I can't wait to get you home where you belong. She has been hurting for the past couple of days and doesn't stay with me long because she doesn't want me to feel that she is hurting but I do. I hope mommy feels better soon. The breast feeding lady gave mommy a breast shield that is like a bottle nipple to help me feed from her better. She used it for one feed and I didn't like it too much so yesterday she tried again with out it and I was so excited that I gulped my food and mommy had to slow me down. She worries too much that I am going to choke.(hehe)I love being close to mommy she is so warm and I am keeping my temp good now. I stay around 36.7 to 37.0 which the nurses say is perfect at 36.5 I was border line and they kept me bundled up in blankets. Now I only have 2 the one I am swaddled in and the one that mommy puts over me. But she keeps putting my hats back on I have to work to get them off. But I guess she must want me to keep them on so my head doesn't get cold. I am staying awake for a little while after I eat now so I can play with her and I have even had a few spits lately. But she tells me it's not the first time she has gotten spit up on. I am going to go play with the nurse now have a GREAT SUNDAY!!!!!!!!! Love and kisses Lillianna a.k.a The princess Lilli

Good Morning, I have had a good couple of days. I finally went poopie and I filled my diaper. Ms Joy said it was massive and said mommy would be happy. I am starting to know when it is time to eat now my little tummy starts to tell me. I don't like that feeling and sometimes they just give me the binkie and it isn't the same. But some how my belly gets full anyway. Some more of my friends went home and new ones moved in , but their mommies are there alot like my mommy is , so now she has some more people to talk to and eat with when they have to leave the room for the Drs to do rounds or when the nurses trade who is taking care of us. I have had 3 bradies since last night. I want my mommy to come like she does when my brother and sisters are at school! She is here most of the day on those days and even comes some of the nights. I am hopoing to be put on more bottles Monday. We found out that when I take my feeds by bottle or breast for 3 days then I will be able to come home. As long as there is no other treatments going on. Mommy is going to talk to Nurse Paula on Monday to see if I can come home on my PhenaBarb. I am up to 4 lbs 7 1/1 oz as of last night and the precautions from Nuclear Meds comes off today so maybe I can try the swing thing the other babies say is fun. Maybe they will hold me more like they do the babies that are getting closer to coming home. I guess they hold them because they cry more. Nothing else really to report until Mommy talks to the Drs and Nurse Paula. Until later, Love Lillianna p.s. I keep hearing the nurses say my name is as pretty as I am. mommy says I look like Stephen's twin when he was a baby.

Today the dr got my test results from my highda scan and there is no bile in the wrong places. They are still waittng on some of my labs to come back in. I have been eating my food when the nurses have the patients to deal with me mommy said. All this time she has been saying she wanted top hear me cry then when I do start to cry( yesterday) because I want to be fed she tells me oh it's ok baby don't cry. I wish she would make up her mind. I nursed today again a full feed. Mommy must be out of milk to send cause she keeps coming in and nursing me for most of my nipple feeds. She looked really tired today and started crying again. She told me I am doing good tho and she just wants me home. I over heard her talking to my Nurse Practitioner today saying she didn't know how much longer she could go on like this that it is really wearing her down. So tell mommy that I will be home soon I am getting stronger everyday and I am growing . All my tests will be fine and she shouldn't worry about me so much. I got a Teddy Bear with a balloon from her and daddy for Valentine's day and my brother and sisters sent me cards. They are on my basinette. My brother Steve even made me a heart butterfly to hang up above my head . But there is no place to put it so mommy put it on the side of my bed and shows me it when I am being fussy because I can't go potty right now . They say it is ok if I don't go for a day but I have to go 1 time every 24 hours and it is a lot of work. But mommy said she could tell I was having a problem and she massaged my tummy for me before she left. I hope she comes back tonight because I miss her when she has to leave and I am starting to cry for her . Beware to all my nurses I am going to end up making them pick me up more and put me into the swing too! (hehe) Well I guess we will update you when there is more to tell you. Mommy go get some rest and tell Daddy to come see me tonight. Love Lillianna

This was taken from Lilli's CarePage Hi everyone it's Vicky this time, As I sit here updating this page for Lillianna she is getting a highda scan done. I am nervous because they inject dye into her tiny little body. Yesterday was a very trying day. She kept desatting all day and we thought it might be from her reflux but she wasn't handling it well at all. We tried inclining her bed more,putting more blankets under her head. Nothing seemed to help only when I held her while standing up with her little head on my chest did she have great vitals. Well then at five p.m feeding I nursed her and about 10 minutes later she let out this sound like she was throwing up and it was a mucus ball. Then her stats seemed to even back out. I watched her for about 20 minutes very carefully but she did well. According to the nurse she had a good night. But we have had to reduce the amount of times she gets to nipple feed ( bottle or breast) back down to four times a day. Waiting on all her labs and test result to come back. She is seeing the gi dr again soon. Hopefully today , so we can give her something for her reflux. And I am nervous about the results from this scan they are doing. She is maintaining her temp alot better now and is very alert at times usually around feedings when mommy is always there 11a.m. and 2 p.m. She is such a good girl hardly cries at all right now she fusses but not too much. I wish I had more to report but really don't. I am waiting on the results of her last cranial scan but so far her head measurements are still normal. One of us will update again soon to tell you the results and progress. Oh and Happy Valentines Day! Hug your babies for me and hugs to all the adults too. We Love you all ! Love Vicky

This was taken from Lilli's CarePage Gey time flies in here. Well I am now getting the bottle or mommy 6 times a day and I eat 8 times a day. So 2 of my feeds are still through the tube but that will probably change tomorrow again.I have just spent these past couple of days hanging out learning to regulate my own temp. and eating. On Monday when Mommy came and was feeding me my physical therapist came and told mommy how to hold me and burp me. She said I am really stressed especially when mommy can't spend alot of time with me on certain days. But I haven't had one of my spells since the 9th. Well not really.(hehe) So anyway mommy is learning these new things with me. Everyone needs to make slow steady movements when taking care of me or I stress out and tense my little body. I have a tendency to pull my head back and to the side slightly so we are working on that now too. I had a consult with my new GI dr. and she ordered a bunch of tests. She put me on phenobarbatol for my Gallbladder. It seems that it is filled with some sludge and is moving things through slower than it should. I will have a highda scan done on thursday to check that out and see if the meds are helping me. Mommy said she thinks they are because my poopy was dark today and really stank bad. She made a funny face when she changed me and I had to just wee wee allover my blankies and clothes to make her laugh cause she was moving tooo slow. Well I was wide awake by the time she fed me and I got to nurse today. I had my full feed by nursing! Everyone said that I was a good girl and did a great job! As soon as I was full I fell asleep on mommy and she put me down and had to leave. Mommy wanted to see my sister before she moved to Miami. She said she will be back to visit me soon. So everyone please pray for her too and wish her luck! Oh yeah ! I weigh 4 lbs. 4 oz. and I have been put into a basinnet at the hospital! Boy the nurses made such a big deal of that. I will update you more tomorrow because things are moving along here and I think I might be home soon and that is why they are having all these new drs come in and see me. Night Night Love Lillianna

This was taken from Lilli's CarePage. I am just a busy little girl I haven't had time to update all of you. I started eating from my bottle on Tuesday at first just 16 cc's once every 12 hours. Yesterday they decided since I did such a good job with that that I could have 36 cc's 3 times a day. I have done very well with that except a very little spit up while burping. So today I might go on eating every 3 hours. Hopefully with out this tube soon it is really making it hard to keep my food down. I got to have a few days with the top of my isolette up but I had a little bit of a hard time keeping my temp at a normal level. So they closed it yesterday . I lost a little bit of weight I am now 4 lbs. 1 oz. Mommy said daddy finally direct donated blood for me and my Dr is waiting for it to come before she gives me my 3rd blood transfusion . I need it this time because I am anemic and can't produce blood on my own fast enough yet. But the way things are looking I will be home soon. My Dr. said I could technically go home except I am having spells again and I need to control my temp and I need to be eating straight from the bottle or breast. Mommy and the Nurse Scott (he took care of my sister Samantha when she was born!) said that I am a good eater and take after my sister . My NP said that I will probably go home on a monitor and my mommy,daddy and sister Sheila have to take a class on the monitor and how to give me my medicine caffiene. I think mommy is upset because she talked to the best team lady and said her milk is slowing down again and she really didn't want me on formula but then she agreed to supplement my feds with formula but she said it has to be the kind my pediatrician recommends and she talked to Dr. Steve and I will get Neosure. I guess mommy is more comfortable with Similac products. Boy all this gets confusing. I got to see my Big brother and other two sisters the other day!!!!! I heard my brother and sisters and woke right up! I can't wait to play with them but my sister Samantha wanted to pick me up and cried louder than any of my friends can! I thought Nathaniel was loud , not compared to my sister she beats them all. hehe. Well heres the Dr.s for todays check up so I will probably have more news later today or maybe tomorrow if mommy lets me back on the computer soon. hehe. I Love you all !!!! God Bless all of you!!! Love Lillianna a.k.a Lilli Marie

Hello again! I know I just updated earlier but I have some exciting news! I got moved up stairs to the step down unit in NICU! I am considered a feeder and grower now! I did lose some weight but if I don't go potty before they weigh me I seem to do that I am 3 lbs 13 almost 14 oz. My big brother said I will be coming home on Valentine's Day! Mommy says he is positive about that and making it known he is right. So she said she is going to make it a game a start taking bets for him . He sounds like he is going to be fun. The Dr have to do rounds still today so I will probably have more news for you later (if I am not too tired) or tomorrow. Thank you all for your help and support and please pray for my friends in here. Love, Lillianna a.k.a Lily

This is taken from Lilli's CarePage. I have been a busy little girl the past couple of days!! I got taken off of my high flow cannula the same day they moved me. I have been breathing on my own, Mommy and the nurses say I am doing great. Then today the nurse gave me a bath and took my iv out. Boy does it feel better. She said I am holding my feeds good and my tummy is staying small. I smiled really big for mommy today and she said I look like her cousin Alvis when he smiles. He must have a great smile cause Dawson's mommy said it lit up the room! Nothing much to report excet I am 4 lbs 1 oz as of Thursday night. I don't know why they won't give me a bottle yet but the Dr said soon. They have to wean me off the tube feeding to make sure my tummy is ok. I want a bottle now this binkie they give me doesn't fell my tummy up. Mommy has been spending alot of time here cause I am awake more during the day now. She said I have beautiful eyes and I am filing out. Dawson's mommy said I look so much better then two weeks ago when he came in. Dawson is one of my roommates and we play games with our mommies to see how many times we can set our monitors off. He is getting bigger too his mommy just can't see it yet. I hope I don't get moved again because I got moved twice in one day and mommy was getting upset , but the nurse did the last one so she could keep a good eye on me. I think I should be home by the end of this month. I Love you all and thank you for all your prayers !!!!!!! I will keep you updated on how I am doing I am almost considered a feeder grower but I already reached the weight to go home it is just weaning me to the bottle or mommy's....you know(he he). God Bless you all!!!! Lillianna a.k.a Lily

This was taken from Lilli's CarePage Good Morning! Well on Monday my mommy came and so did my Grandma!!! I was happy to see her again (and mommy too)! She took pictures and mommy said she sent them out to many of you. I have been doing good , they have started to increase how much food I get and are doing it a little at a time. Yesterday when my mommy was here the nurse practitioner Paula told her the results of my cranial ultrasound done on monday. And it was GREAT news!!!! The bleeding has completely stopped and there is NO maore swelling! They have actually downgraded my bleed to a grade 2 from a grade 3. That was really good news too! Mommy called this morning and I am 3 lbs 13 oz. Alomost the weight I could go home but I still have a few things I need to work on first. But then when mommy called first thing this morning she found out that I was moved to another pod. Which means I am getting better. I will miss my nurses but I am sure they will come to see me again. Then mommy got more GREAT news! I haven't had any of my heart rate drops or breathing problems in 24 hours! She says it's all up hill from here. Mommy said she finally got to show Stephen and Nichole good pictures of me and they were both so proud of me. Stephen even told Nichole "Come look at Lillianna MY FAVORTIE BABY SISTER!!!!!" Mommy says that was a really big change because he used to say if he got another sister he was going to run away from home and now he is so proud of me he gets excited everytime he hears mommy pass on good news about me. I must be really special to him then! And i will tell you a little secret all my sisters and Stephen are special to me!!! I can't wait to get home. Mommy thinks maybe another 3 to 4 weeks. It's easier to thing in weeks instead of months for her. Here's the new nurse to mess with me I hope Nikki told her I will fight her when she messes with my arms! And let her know what I like. I Love when they clean my mouth with that thing I suck on it! I can get a sweet taste of something and I get some liquid in my mouth! I also LOVE when they rub my hair , It always calms me down. I hope they stil let mommy bring in the special little washcloths to me because they smell like mommy and I sleep better when they are across my eyes or I am laying on them. But if they did tell them I am sure mommy will! I also like to be on my tummy. And hopefully they will still put my wedges around me like the other nurses did. They sure did know what I like! I am sure the new nurses will find out one way or another. I will update you later and hopefully mommy can figure out how to put more pictures on here of me for you all to see. If not maybe she can ask that Grandpa man. Grandma said he could help her do it. Love, Lillianna a.k.a Lily