Million Dolla Baby

<~~ That is all my beautiful niece and nephews and Lilli, from about 3 weeks ago!

Tomorrow we go to our occupational therapy, last wednesday we started practicing with spoons and watery baby food, just to see if she would get her tounge moving... suprisingly, as long as shes in a good mood- SHE DOES AWSOME! Maybe she will never take a bottle.. just go to a cup? We'll see! I plan on weighing her tomorrow again to see if we have thickened her up at all! I have a good feeling about it!
She had her first little cold over the weekend, just lots of congestion in the middle of the night, its going away now and she is back to her normal spoiled self! We finally got a call from the GI doctor, and have an appointment set up in a few weeks... I am ACTUALLY nervous about that one- just because I am worried they will try to push getting the Gbutton for her eating... and I HATE to do it... hate hate hate, I just want to give her a full chance... I still feel like it just hasnt been long enough!! Maybe they wont though... that'll be a relief! I just need her to gain weight, otherwise I really think they'll want me to get a Gbutton. She hasnt been throwing up NEARLY as much as before.. she has her days, but the last 2 days have been really great! For a while now I had tried holding her while she was feeding on the tube, but I think Im starting to realize, that she throws up less when she is in her carseat or rocker basinet thing... Ill test it out tomorrow!
She started to get into the baby einstein videos and things and really watching them! It is THE cutest thing ever, what a relief for me :0)   She also loves her blankets all over her face.. pretty darn cute! Next week we are going to have professional portraits done by a VERY sweet lady who found my blog on here :0) And offered us a session! I am VERY VERY excited! And THEN next friday is our child support meeting... IF someone doesnt cancel it! For her sake, I reallly hope he doesnt cancel again, Im ready to get this over and done with. If he wants to be in her life, awsome, if not... too bad for him, but we need help financially! Just got some crazy bills from the hospital in the mail..! Thank God for the support my parents have given me! I would be totally screwed! And thank you for the DONATIONS TOO! Every little bit helps!
We are going out of town for the weekend, to our ranch :0)  My fabulous friends are coming, rain or shine we will have an awsome time, and Im glad they get to spend the weekend with Lillian. Rachel has been through my side through everything, I could never ask for anyone better, but since we have been home, she has only gotten to spend one night with Lilli and I because things have been so crazy for her and I. This is will SO great for them to hang out! And Im excited to see my sister Sarah too... even though I just saw her a few weeks ago, she is always on her toes and a big help when Im feeding Lilli or putting her down for naps and stuff, its like she is very aware of doing it on her own- and even though I say I dont need help most of the time, she still asks, I love that.. I better get used to taking help soon I guess! Stubborn...
Lillian has really started workin those hands, for sucking, AND pulling! Always grabbin that tube! Im a pro. at it now!
Anyways, Thanks for keeping track of us :0) and for all the love and support, we are some VERY lucky girls!
x0x0
Lauren & Lillian

Weight Weight WAIT!

Hey Ya'll!
I have some angry family because I havent been updating... GEEEZE! Sometimes, there just isnt much to say and Id rather be squishing Lillians little cheekys and kissin her! hahaha

She is doing wonderful off of oxygen, doing pretty decent with her nurtamagin formula... At our weekly OT appt. we discussed the fact that Lilli can swallow well, but just not suck... so she gave me several different spoons and techniques to try, maybe she just wont suck a bottle, maybe spoon feeding and ng tube is how it will be...and that is FINE with me! I watered down some rice cereal tonight, and she ate a full teaspoon of it, she threw up in the middle of it, but I dont consider it the fault of the food, she has been real congested and that seems like its the only time she knows how to get it out. She really enjoyed it, I plan on giving her watered down cereal with every feed by spoon, while her ng tube is feeding her as well. This week has been a pretty relaxed week, one that I know I can get used to because soon all the dr appts will stop, and we will have a regualar schedule of weds. going to OT and the rest of the days cleaning, hangin out together! Next week will be another busy week, and the week after as well... but she is SUCH a trooper. She loves the car. She loooves baby einstein and mozart videos- she has one in her crib right now that she fell asleep watching. OH  thats new, I took her OUT of the basinet rocker that I had, that was real small and it folds up and i kept it directly by my bed, and I put her in her play pen basinet area- totally different than what she is used to. but I have a positioner in there and lay her on her side and she watches the baby movies and sucks her fingers! Tryin to get weight put on her... hope it works... she went down a bit when I weighed her from 2 weeks ago... just gotta keep tryin. Thanks for checkin on us... when more exciting news comes... I'll keep informing!

x0x0

Sorry!

Lillian and I have been very busy with life and I appologize for those of you who have been checking on us and not knowing whats going on... as you can see from the pictures... NO MORE OXYGEN! And her sucking is still tough, mostly chewing, we go every single weds at 11 am to the OT who will help. Her swallow has gotten much much much better! And she fell asleep after chewing the other day, and started to suck the bottle in her sleep! Drs told me that its a natural instinct... crazy though how she did it, I was just hoping she'd wake up and know what she was doing! AND KEEP GOING!!
Life is going to be soo soo soo much easier and a bit more normal now without the oxygen. I am so grateful. Thank you for prayers. WHOO! I have been having some wonderful friends come over each weekend with their kiddos and we have been playing games and having drinks and talking baby talk... its wonderful for me, and I hope it is for them too! I am really growing a love for them because we can talk, and understand each other, especially one friend of mine whos baby was in the nicu the same length Lillian was! We really see how the Nicu formed them into the little babies they are today! Just lots of little things...
I think she is gaining weight... she is on nutramigin, 24 cal. per oz. So far pretty decent.. I think throwing up comes and goes, you can never tell what makes it happen.. She is munchin on those fingers like no other! She just bites them and starts crying! poor bug! Im hoping it will help her get a suck down soon... She's doing so wonderfully. Im so proud of her.. Now I have to get ME going... a plan for ME... thats the hard part. Job. School. Where do I start. hm!
Always the same thing! Thanks for checking on us, Ill try to update more.. We love our wonderful family and friends more than anything, without you- we'd be SCREWED! Thank you. and Thank God for all my great gifts in life. This little angel expecially
L&L

Please be careful...

A while back I posted about a fundraiser for Lauren & Lillian from a company called L.R. Beary Fundraising. Well, come to find out, that was a scam. So far, by the grace of God, WE have not been scammed, but Shanna Marsh (via The Layla Grace Children's Cancer Research Foundation), mommy to Layla Grace who passed away from Neuroblastoma on March 9, 2010, is currently being scammed by the woman who is portraying herself as the owner of the bears AND the VP of The Layla Grace Foundation while she actually is not. If you are on FaceBook and are not currently a "fan" of The Layla Grace Children's Cancer Research Foundation, you can be and can keep up with the news and events (not only surrounding this mess) but how you can help the Foundation now or in the future.


I wanted you to know that not only am I very sorry that I promoted this fundraiser, but I hope that no one bought any bears. Lauren never received any funds from this fundraiser so we are not sure if that is because no one bought bears or because of the scam. Also, I wanted you to pray for The Marsh Family as they still grieve their young daughter's death and have to deal with this scam artist.

Neuroblastoma is one of the few cancer types known to secrete hormones. It occurs most often in children, and it is the third most common cancer that occurs in children. Approximately 7.5% of the childhood cancers diagnosed in 2001 were neuroblastomas, affecting one in 80,000 to 100,000 children in the United States. Close to 50% of cases of neuroblastoma occur in children younger than two years old. The disease is sometimes present at birth, but is usually not noticed until later. By the time the disease is diagnosed, it has often spread to the lymph nodes, liver, lungs, bones, or bone marrow. Approximately one-third of neuroblastomas start in the adrenal glands.

If you are in the Cy-Fair area near Houston, TX this Sunday, The Layla Grace Children's Cancer Research Foundation is having its first big fundraising event. Help make a difference in a child's life.

Thank you!
Amanda

WENS the DAY over!??

Well, I thought today would be a marvelous day, Lillian and I didnt get out of bed until 11, well I got out of bed at 11, she slept... When she woke at noon, she cried, and cried, and cried until one. And fell asleep. Then around 2, she cried and cried and cried, and fell asleep for a good while..
Rachel was going to come spend the night with us so she SHOULDA been in a good mood! Rachel and I and Lillian went to visit Tara and her mom to drop off mary kay products... BRYNLEIGH is soo cute and chunky, I keep tellin Lilli to chunken up so they can play! Its hard right now, b/c I want to sit them together and let them play together as babies, but because Lillian has so many tubes, we cant really do that...
Then the 3 of us went to dinner and Lillian cried throughout dinner... we got home and I was going to prepare another bottle for her- even tho, SHE ATE AT DINNER! And my mom is just making rude rediculous comments. No parent wants to hear: she's holding Lillian telling me "she's hungry" "shes hungry" " your mom is starving you, I know your hungry" ( all in this time I am unthawing a bottle that didnt unthaw itself in the frig. Then she wants to put her finger in Lillians mouth... ok, thats fine, but your hands arent clean, and she is crying all day, she could be getting sick, dirty fingers... no thanks... Then she is messing with a binky in her mouth and says " I know, you poor baby, your mom wasnt prepared".... UM... I did everything I ALWAYS do. I fed her while we were out, we got home, she was hungry again, I had to UNTHAW the milk!!!! SHHEEEZ. I swear she has no feelings sometimes. Like everything that is happening to me is just shit I have to deal with. WELL, I am dealing with it, but I am heartbroken at the same time. Two heartbreaks in two months is NOT an easy situation! Anyways, Im glad one heartbreak turned into such an amazing blessing that I get to kiss and hug and hold as much as I want. She's my angel.
The other, we'll just see how much harder he can make my life for me... BLA.
So now Rachel and I and Lilli are just layin in bed :0)
I love this. Im so grateful for this moment right now... even tho the two of them just started snoring.. I wish I had more rachels for every night of the week... :0) a man one would be nice!
Everyone have an awsome night! Our dietician comes in the morning-- hope we can chunken Lil up... OH MY GAH- THE WHOLE REASON I WANTED TO WRITE THIS TODAY: ::: Lilli drank 1oz out of her bottle!! big girl bottle!! 1 hole oz!!! Im so proud. So So proud... Baby steps...
:0) have a great night
x0x0
Lauren and Lillian