Sunday, December 12, 2010

Please Pray

One of my very best friends, whom I have grown close to ever since we realized our due dates for our babies were only days apart, past away last night.
Her son was in the Nicu while Lillian was there, she was such a comfort and we have grown close being single mommies together and going through our struggles together.
Her son is 10 months old. She was my closest friend when it came to mommyhood. She constantly lifted me up and told me what strength I had, and if I knew now that she needed strength, I would have given all I had to help her more. Her and her son spent every weekend that was possible, over here with Lillian and I. We talked about our struggles with having kids that werent completely healthy, and how paranoid we were, and our "baby daddy" problems, and what we admired in each other- and there isnt another person in the world I can talk to like I did with her.
I am absolutely devistated, selfishly for me, but not only that, her son, her parents and her entire family. Everyone loved her so much, she was soo silly and happy, always positive and encouraging.
I dont really have much else to say, other than please pray for the struggles her family will face, and for her son in particular.
*You were such a wonderful mom, and true best friend. Time is always against us, I wish so badly we had gotten more of it with each other. I am so glad I got to spend your last day on Earth with you. I will miss you so much, but I know now your pains and heartaches are gone and you have the strongest arms to hold you daily, Gods. I love you so much girl, Im so sorry our friendship this past month wasnt as close as we have been, but I know, and I hope you knew how much I care about you and babyboy. Oh my gosh, I cant express how much Im going to miss you. It just isnt fair. I promise to you to do everything I can to be here for your family and to my chunkers. Lillian and I love you so much, thank you for giving me happiness and encouragement. Love love love love love. *

I plan on posting pictures but not just yet, for privacy.

Monday, December 6, 2010

visit the winter issue to see our story- trying to spread the word!


Hi everyone!
I am soo happy today! Thank you God, because I was waiting for a dose of hope and happiness. Prayers have been answered! First, obviously, Thanks be to God. But secondly to my awesome friend Jeff, he makes a great partner for me and loves Lillian tremendously. I have a hard time excepting him into my life, for reasons of teetering with right and wrong and is this a good time, ect... but it doesnt change the fact, that he was there for her entire hospitalization this last time. Sleeping in rickedy beds with me, on recliners and being plan old stressed out in the crazy environment and still managing to go to work and come back, happy. THAT is amazing. :0)
Lillian has begun eating! Slowly, but better than ever! She has eaten Oatmeal this morning, 3 tablespoons of it(before mixed) to be exact, and a danimals yougurt  and 2 Tbs of fruit flavored rice cereal! She is 10 lbs.
She is 23 1/2 inches long. She has been doing great at holding foods down.
We got another God sent pediatrician- Dr. Ramsey. She put lillian on breathing treatments, for "asthma" as a precautionary, and... ITS WONDERFUL!!
We start OT and PT back up at home now, starting weds!! And we are also starting speech next week!
I am having a hard time juggling life in itself and trying to get to where I need to be... (my own feet) if anyone out in the world can help me... find a house... get a job... anything ... I am ready. Working from home would be the most amazing thing I could ask for for right now, b/c lillians appointments are crazy! So PLEASE HELP IF YOU CAN!
Thank you all for so many prayers, we have come so far, and are going to keep going, and I know that every single prayer worked. Tons of love for all of my TS and CDH mommies.. now that Im home and back into routine... things should get easier...
Thank you everyone, and also, PAWPAW,
I love you!

Sunday, November 21, 2010

Movin On Up!!! - Updates from November 20 and November 21

Great news has been traveling fast!  Lillian is progressively getting BETTER and was moved up and out of the PICU today!!

Please see below the events that led up to Lillian's move on up :)

November 20
"I have been fighting with the nurses 24/7.  We have to be too close to the next patient"

"So, that's the only area for me to sit.  And where that nurse is, that's the other patient's bed.  They have the little girl's mom, dad, grandma and two brothers in the room visiting."

"Lilli is in the polka dot bed.  And you can see that there is only a foot and a half between beds..."

"You can only have one visitor (according to the rules) and no one under 14.  But they are having 4 visitors and the brothers are both under 14!"

When Lauren asks the nurses about it they say "I can't move bed spaces because more patients may come in.  And to be patient because she'll be moved to another floor soon."

"Left is Lillian's bed.  Right is Esmerelda's bed.  And because the oxygen cord is so short, I can only sit right where I am (where I'm taking the pic).  Esmerelda is 2 years old and has surfactant deficiency (lung disorder) and some of the things that she's going through are right next to Lillian and her bed.  Not sanitary, at all."

"I would try to fight more for our "rights" and have us moved somewhere else, but we are already going thru this ICU trauma."

November 21 
"I just have one of those feelings that today is going to be fabulous... Let's GO Lillian! Cheering for her, screw all the games on today ;-)~"
"We get a private room with Lilli on the 7th floor, progressive care unit!!!! Whew! Almost out hopefully! Now I get to sleep w her!!! And have my own shower bathroom!!!!!!  I knew today was gonna have somethin good ;-)"

"Lillian is getting better.  She is being weened off high flow oxygen.  Her ativan is weened to every 6 hours and methadone is down to every 8.  She is done with Antibiotics!  She weighs 10.3 pounds now!! When she arrived in the hospital on November 11 she weighed 9.3 pounds!!  Tomorrow will know more because her pulmonary team will come visit!!"

All of this is great news and we are so excited that Lillian is getting better.  Please pray for continued progress and health for Lillian.
Thank you!

Here are some more pics of Lillian taken over the last few days:

Thanksgiving with meaning!

I dont think I have ever been as thankful in my life as I am this year.
 I am so thankful for everyone reading this that sends their prayers and thoughts and kind words to us!
I am obviously SOO thankful for my daughter :)
For Amanda Hoyt for making me this blog to spread the word on CDH and TS.
For Doctors and nurses
For my amazing family
For the having the best friends I could ever ask for
For kind people who volunteer :)
For encouraging words from strangers
For the internet because its been the best support group yet- Gina,Janine,Donna,Sarah...
For God, for giving me Lillian for strength, as my backbone, and to let me know that Im THAT special that I get a special kiddo :)
Hmmm.. thats my short, of the top of my head list!
Amanda has been updating, so Thank you, but while I had a second I wanted to say thanks:0)

Saturday, November 20, 2010

Sorry for the delay - Updates from Nov. 18 thru Nov. 20

Lauren, I'm so glad you were able to update the blog last night.  I wish we all could do more than pray.  I'm sure all of your followers feel the same way.  Please let us know if there is anything specific you need while you and Lillian are in the PICU.

Because I was unable to update the blog on Thursday and Friday, I collected Lauren's facebook posts in  order to update you on Lillian's progress.

Please forgive me, Lauren, if I go over anything you put in your blog post earlier.


Thursday (November 18)

“I can't wait until tomorrow. Everyone say a short prayer that I get to hold Lillian after 7 days of watching her lie there!!!! Been there done that, got a tshirt! Ready to move on!!!!”


“Extubation was miserable. Just one more experience to add to the list. Poooooor Lilli. She is doing OK now, just working on getting her heart rate down. It was at 220. She is on a nasal canula and they r giving her some meds to calm her down. She can never do things the simple way...!!!”


“I am officially admitting that I'm either the worlds strongest mom, or I'm heartless. That experience was Sooo damn stressful and psychotic.. And I'm still living and dry eyed... I'm sure it'll come out the second someone pushes one of my buttons!!! :-)”

 Friday (November 19)


"Another long. Hard. Unpleasant phase of life has begun. If only everyone lived near me that could understand :-( Not able to calm my own baby. Having to give her more meds. All because she doesn't like these tubes up her nose and tape touching her.... My poor baby. I wish my TS support moms lived closer"


"They began steroids to reduce swelling in her throat.  Gave her Ativan at midnight and we will give Methadone at 1."


"Alright so. They r only giving breathing treatments as needed, don't seem to be worried about the crud. The steroid could make them a little crazy- agitated, Ect... So not worried about that. Watching her today, may be moving upstairs in te next couple days. Which is the progressive care until where mre ppl can visit.... They are not going to go down on the flow of her oxygen just yet, maybe tonight."


"I'm so grateful for this beautiful child I have."


 "Took a break today to get my hair done and relax. I regret it. Shoulda stayed."


"She had a rough day while I was gone.  She's ok now.  Heart rate is 130 and she is sleeping now."


 "The only way I could get her to sleep was by UNswaddling and giving her silky.  This is what she did with it."


"Sleeping. She just wants to leave! So she decided to hide til it's time."

Saturday (November 20)

 "Catching up on ZZzz's"

"I'm going to f*ing punch these stupid ass uncaring nurses in their lazy ass faces. GET US OUT OF HEERREE!!! - none of this is directed Towards my Nicu nurses, I wish you could all rotate down here for me. I'd pay you out of pocket!"


"She's doing better. They just need to start weening Her oxygen now"


Friday, November 19, 2010

It's me! Updating from my phone this Friday evening!

Lillian was EXtubated yesterday(they took tubes out)
It was just another experience to add to the list, she sure hates cooperating!
Her heart rate was around 220 for an hour!! We jut could NOT calm her!!! Yesterday really broke me down. Trying to work my magic and staying strong for her wore me out emotionally. I haven't even held her today really... I attempted to go rejuvenate myself by getting my hair cut and relaxing, but I'm mad at myself for leaving because there was drama with her. Luckily my sister was here with her. With methadone and atavan her heart rate has gone down and she is getting formula in her belly again now... Hopefully only a few more days here... Thank you from the bottom of my heart for the support and prayers. God deals some pretty wild cards for us!!!!

Wednesday, November 17, 2010

Update on Lillian's Progress (11/16 thru 11/17)

Praise the Lord! Lillian is getting better!

I have the following updates from Lauren:

November 16:

"Begining weening. But nothing official. Slowly lowering vet settings. Hopefully late tonight will be off. BUT now, abnormal signs on her left lung, which was the originally undeveloped lung. They are looking into it. I have called her pediatric surgeon and her pulmonary dr to discuss and get an idea of what may be wrong. That's the days update for now!"

"I'm so glad I learned how to be my own best friend before all this...
It's the best advice I can give anyone. Because sitting up here alone is just loads of miserableness but I know how to comfort and entertain myself!!"

"She got ahold of some fingers!! And smiled at me today! I believe she's ready... She told me so..."

November 17:

"Plan is to cut feeds in middle of night, and try no vent tomorrow!"

Tuesday, November 16, 2010

Update on Lillian (11-15-10)

Lillian is getting a bit better & Momma Lauren is just hoping and praying that she gets to get extubated and gets to go home soon.

In her own words, please see below - her heart is hurting now. Please pray for her and for Lillian's health.

Thank you,

"Laying in room at Ronald McDonald house. I hate this journey I'm on right now. Dying to bring my buggy home and hold her and see a smile!!!! ... I literrally think I'm dying. Ouch"

"Okay! Enough whining for the day- gotta get out of this squeeky ass Rondald Mcdonald house bed that has now ruined my back (had to get one more complaint in) AND OFF to go see my bundle of sweetness. Hopefully doctors rounds will fill my Monday with great news!"

"Update is: no real talk about weening ventilator. They will lower settings, but, not ween off anytime soon. Giving her 7-10 days worth of meds they use for pneumonia. Lowering pain meds (which to me is good sign bc they do that in order to test her off ventilator)."

"Uugghh I want to hold her and snuggle!! This time is so much harder than before.. :-(
I need a representing doctor just for Lilli... I hate the way this Picu is run!! (said I was done whining. I lied.)"

"I just looked thru allllll my friends on Facebook with kids Lillis age or younger, and.... Lilli is not like them. And that's hard. I hope you all know that that is hard for me. Bla"

Sunday, November 14, 2010

Update on Lillian (11-14-10)

So far, from what I know today, Lillian might be extubated on Tuesday.
Here are a few pictures from today.

Thank you for your prayers.

Be on the lookout for the latest issue of Cy-Fair Magazine. An article features Lillian's story.

Saturday, November 13, 2010

Lillian is in the PICU at Texas Children's

Friends & Family,

Lauren wanted me to ask you all to pray for Lillian.  She has been in the PICU at TCH since Thursday night.  I will try to update as we know more.

On Wednesday, Lauren took Lilli to her pediatrician. She put her on breathing treatments, antibiotics and had her blood drawn because she's been wheezy. She got worse overnight and very lethargic so on Thursday, Lauren decided it was too much.  She took her to a free standing ER and they called the pediatrician and she had her admitted to Texas Children's. Lillian was taken by ambulance to TCH.

At 3:10 on Friday morning, Lillian was sedated and intubated because they couldn't calm her breathing.  She also had a higher than normal temperature, high blood pressure, low 02 levels and high white blood count.

On Friday at 6:15 pm, Lillian’s blood tests had been run, X-rays complete and an EKG done.  All came back more or less "good". The doctors assume she caught a virus and just couldn't handle it with her tiny body. She is fighting hard. She is still completely sedated and intubated.

At 9:00 am today, Lauren was told that Lillian is running a higher temperature.  She feels awful because she slept all night.  Doctors are trying to say that her temperature is up because she is under her blankey, but Lauren knows what her normal temps are and they are not 100-101.

At 10:00 am today, we found out from Lauren that she is looking at another 10 days in the PICU. Lillian’s temps are higher; she has lots of phlegm, and dry diapers. They can't decrease the ventilation settings at all today because she isn't tolerating it well.

Please continue to pray for this precious baby and her mom. 



Lillian Wednesday (11/10)

Lillian Yesterday (11/12)

Lillian Today (11/13)

Tuesday, October 12, 2010

PaReNtHoOd :0)

Lillian has her 3rd ear infection! Hoping we dont get another for a LOONG time, they are already concerned with putting tubes in her ears! Everytime she seems to get an ear infection, she also seems to have crazy horrible mucus in her chest and tummy. Feeding her baby food by mouth is practically impossible because there is so much thick mucus, she throws up and coughs non stop!!
Yesterday I finally had enough of doing this "alone" and got on to my pediatricians nurse, I completely broke down like a nerd and said that someone needed to help me figure out what the HELL is going on so we can make some progress! There are so many LITTLE things, that they add up and stress me the hell out! Like, the mucus, because its slowing down the feeding process, which in turn is keeping the ng tube in, which in turn makes them tell me I need to to GBUTTON!! And her eye, for the last several months, gets soooo swollen and the top lid overlaps the bottom and it just looks CREEPY! I have had several people ask me if she is okay... Doctor originally said it was pink eye, BUT ITS NOT PINK EYE! I know that much!! Ugh!
She has 3 teefers now :0) shes getting so big, physical therapy has really started to help us as home! She is getting sooo strong!
Im still wainting on SSI info in the mail, going to make yet ANOTHER call to them tomorrow. Along with TxChildrens because I called to speak to a manager the other day about switching renal doctors (they said I couldnt do that) and its either that or I leave TxChildrens... so.. if he doesnt talk to me tomorrow, ANY SUGGESTIONS ON RENAL DOCTORS?
I am also in search of Single Mom groups, single parent groups or parents with special need groups, or SINGLE PARENTS WITH SPECIAL NEEDS hahaha- anything!! I need to make new friends and get out there and talk to people who know what Im dealing with! I have been getting upset at how people will go gah-gah over my close friends baby, and completely ignore Lillian... I remind myself all the time that it is because they are fearful, but, facts are facts- they ignore, and we suffer! Im going to start THANKING people for asking! Nothing better than little kids saying "whats in her nose?!?" haha, I love it! I just want to like, thank these young children for asking and talking to us!! hahaha, NOW THATS SAD!
I have also learned that I give off a very stubbornly independent vibe :0) OOPS! Workin on that one...
She is making awesome progress, she LOVES music, which I have known from day one :0) ANYONE that has my blood AND her dads blood is BOUND to have a passion for music :0)
I am still searching for roommates or housing options, I love my parents for all this support, but, I feel like I need to move out to become who I want to be! I wont go anywhere sitting under their roof! I WANT to be able to do this myself... ..... ... Im sure I'll regret saying that someday!
I hope everyone has a marvelous night. Happy Hump Day! THAT much closer to the weekend!
Lauren and Lillian

Thursday, October 7, 2010

Swallow Study Results

Well, my computer has been broken for a week... SOOO glad to get it back :0) sadly, I would feel lost without an iphone!!
Today we went to Tx Childrens, all day, and had Lillian swallow study done- everything went WELL!! The only concerns they may have is that she have acid reflux, which they thought months ago, but I thought it went away... so we will see, they may want to put her on prevacid... but she really doesnt throw up much anymore...
I am really working on moving out, I think it will be best for me, my parents, and Lilli! So, hoping to find a roommate(s), and when I start recieving SSI, Lillian will qualify for a home nurse full time..which will help me a TON, not only emotionally, but to get things finished, and possibly get some classes in!
Other than that, things are going smoothly, her dad has been alot of help to me recently-- so that is good for us :0)
anyways, thats all for now! thanks for all the support and prayers!!

Wednesday, September 29, 2010

G.I. Update

Our Gi appointment went great today. I appreciate our doctor so much! She talks to me for at least an hour! She is not UNsatisfied with Lillian progress, and says, she is just going to be a petite little girl...
She suggested that after the swallow test we have next week, if it shows that Lillis is asperating, THEN I may want to really consider a GBUTTON- because that means, more than likely, it will be awhile for Lillian to get all her nutrition by mouth, although she is eating baby food. Milk and other liquids will be tough to get in her, and GBUTTON is just longer term than her NG tube. She weighs 9.01 oz today!!! And that is even though she has been spitting up/throwing up and diahrea for the last few days!!
I had someone ask me today "she was born with teeth?" lol im assuming because she was so small, i had to explain she is 6 months old! I showed up to my endocrinologist today and was told my appointment was yesterday!! DAMN! Well, there is a first time for everything... I am usually so on top of appointments... guess its mommy brain- and Im sure its here to stay! Im hoping to start getting to church on Sundays on a regular basis with a friend of mine who's son was in the NICU at the same time we were... Im definately tiring myself out, but at the same time... I dont know exactly how to "get a break" or what type of break I even need.... I feel like a change is needed and just dont know what!
A good hearted single man may work!! Hahaha! No, but really... any takers?
Hope you all had an awsome wednesday! Almost the weekend!!

Tuesday, September 28, 2010

Once Again... Askin for Help!!

Happy Tuesday, almost Wednesday!!
I got a phone call explaining that Lillian HAS BEEN APPROVED FOR S.S.I.!! I am SO excited about that, I am hoping for some help there. I was once told, by ECI, that by being approved for SSI, you are automatically approved for medicaid. Anyone know if I have to apply for medicaid still?
Also, any other programs or help for children with disabilities? I love getting advice from other parents and help from all around, it is all useful in some way or another..
Tomorrow I go in to MY endocrine doctor :0(   BLA. I have Graves disease, and it went into remission before I became pregnant but after Lillian was born, it struck again! So, Im sure this means MORE MEDICATIONS in our house, ugh, this time for me... After that we have her OT appointment, and then GI appointment. And Friday we go to get her eyes checked, when she cries, one of her eyelids seems to water more than the other, and swells and overlaps her bottom eyelid... its rather creepy!! Last time we saw him, he said it was probably pink eye... well, its been 2 months, ITS NOT PINK EYE!! Im sure its just a stye or something, but they have to check her vision anyways!
I am thinking about looking into going to see a therapist myself soon too if there are any suggestions there! hhahaha- just one more appointment to add to our books. May as well take advantage of this free time while Ive got it, before school next semester!
Also looking for somewhere for Lillian AND myself to get baptized soon!
Oh, other than all the boring things, she is starting to "coo" more and more, today at therapy she was all smiles and talking in her girly little voice sooo loud, it was too cute. She has some BIG top teeth coming in! Definately my fault :0( rabbit teeth! Still cute as ever though!
Ill let ya know how the GI doctor goes... Thanks for keeping up- and every prayer counts! Thanks for them all, and ALL the advice!
Have a Great Wednesday!!
Lauren and Lillian

Monday, September 27, 2010

Half a YEar!!

Happy Half a YEAR to my little chicken nugget!!! My computer has been broken and I finally got it back today! I feel like I have so much catching up to do, emailing doctors and ssi people and crap! And telling yall that lilli is pushin 9 lbs still and has 2 TEETHERS!! She is cooing more and more each day... Her neurologist said she is far behind... well no crap... ALREADY KNEW THAT!!!
The paper work for her growth hormones is going through... I will have to administer those nightly in her thigh... I will go through a training course.... I should just become a damn nurse now. ugh.
I went to school and found out that after my internship next sememster, I can get a job at any drug abuse or substance abuse or rehab place... then I have 10 classes til my assosciates... so... not too bad.
We have Lillis GI appointment weds. its pretty important!!! Im interesteed to hear what she says... I know Lillian hasnt gained the appropriate weight, but she is eating baby food by mouth!!! ah! Im going to be a wreck! We were in san antonio over the weekend and saw her daddy. She is so special to him, and I know that when she grows up, they will have something special im sure... she already reminds me of him... and not just her looks!

Ill catch up more when Im not so rushed! Thanks for all your support! I hope everyone is doing good, I really do!! Love~

Thursday, September 9, 2010

Good Lord!

What a day! All these teeth hurting my baby are really starting to hurt me!!!
I'm sooo exhausted of the crying. Besides all that, the antibiotics she's on are not doin a tummy well!! Having some pain :-(
Lucky us, Lillian was in a wonderful mood for our Cy Fair magazine shoot. They came brand took our pictures- I had such a hard time with acting serious! We got it done though, and I think it'll be out in November!
Thanks forkeeping up with us:) people on here have truly restored my faith in humanity, and god!!!
We have some pretty critical appts Monday! I'll let ya know!

Blog Makeover in Progress

Please pardon the dust...this blog is under construction for a few days.
We hope you are all doing well.
Friends of Lauren & Lillian

Rounding 6 Months!!

I havent gotten to write in a lonnng time! Im so thankful people still care. Im sorry.
But, on the upside, doctors appointments have NOT slowed down! hahaha! Still daily, if not, weekly for sure! She is doing wonderful! A mear 8.2 lbs!! She eats baby foods by mouth and takes 3 1/2 oz thru the NG tube. We LOVE our O.T. today Lillian did outstanding... and just smiled at her the enitre time they worked together. I hope it only gets better and better. She was diagnosed with SPD, sensory processing disorder, and we are still getting used to that, but, its just another small thing to add to the current list, and I can just see that this list will not last forever! Shes so tough. She is smiling. She has her first bottom tooth. She love this rain stick we have, and she loves green beans! She loves to be out and about with mommy, much more fun to her than sitting at home with all her plain toys, even though we are overloaded on those. She is just interested in seeing the world for now I guess! We are recieving child support bi weekly from her father, and he "tries his best" to be involved. And thats good enough for us. We have plenty keeping us busy! Today I went to school to talk about my quickest way out of there! And, I will need to sign up for the internship again next semester, get it, work 17 hrs a week there, and go to class once a week, I may also do an online class. And then, I can file for my CI- counselor intern status. And Ill have My LCDC certificate and Ci status. Then while I am completing the 10 courses left on my associates degree, I will file to do the state licencing exam for counseling... not sure what all that means yet... haha, one step at a time though! So, keep your eyes and ears open for substance abuse conselors, or anything related that I could get my feet in the door!
Also, Cy-Fair Magazine is sending out a photographer here tomorrow! We will be in the fall or holiday issue, not sure what its called, it will be out in November sometime! Our picture and story! So, Spread the word!
One more note- I am dying to put together a 5k fun run for CONGENITAL DIAPHRAGMATIC HERNIAS- any help, please please email me!!!
Thank you guys for reading and praying.
Our life is run so smoothly by the prayers through God.
Lauren and Lillian

Sunday, August 1, 2010

Trying to get Back on Track!

Hey! I havent posted in awhile.... just got off schedule and have been going non stop! Im sure everyone with kids understands these moments! Lillian is SLOWLY gaining weight... not yet 8 lbs... but almost there.. 4 months old :0)
I am in SERIOUS need of PRAYERS! We need her to get some sort of sucking/swallowing down! In 2 months, we go BACK to the GI doctor and if she has not made progress, we will begin planning a Gbutton surgery- I DONT WANT THIS! I dont want to put her through another surgery, I dont think she is ready for that and I have faith that she can suck a bottle!! If anyone has or knows another child around this age with turner syndrome, PLEASE let me know :0) Id like to know if any of the slow weight gain is normal!
Other than the weight gain, she is doing AWSOME! Lifting her head and working those little hands! Always sucking and chewing her fingers :0)  We saw her daddy twice last week, while we were in San Antonio visiting my sister... The visits went awsome and all I can do is pray that he WANT to be involved, its so hard not to love her after youve met her!! He said a few things that make me smile everytime I think of it.. just talking about her sweet little noises she makes and how they could never get annoying... I THOUGHT, I KNOW!! So, hopefully he realizes he's really missing out, and the only way to fix it is to get involved.
Our week is full of doctors appointments again! Im wondering how I can get all my doctors to talk to one another and come up with a "plan" for Lillian, goals and such... Im still learning...!
I hope everyone is doing wonderful, and enjoying summer!
Lauren & Lillian

Tuesday, June 29, 2010

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!
Lauren & Lillian

Wednesday, June 23, 2010

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!

Monday, June 21, 2010


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

Friday, June 11, 2010

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!

Thursday, June 3, 2010

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
Lauren and Lillian

Monday, May 31, 2010


Lilli loves her Haleigh! Sitting by the pool!

My Nephew with Lilli
Haleigh, my niece, loving on Lillian
So those are some pictures from our first weekend out of town! She is just comin around each day more and more, I love it! Her personality makes me laugh, espesially when its just she and I- she's funny, but I think only a mom would say that!
I had a bbq this weekend and i had several people over and there were 2 other babies here! It was so much fun, I was nervous but went with the flow, Lillian is healthy and theyre babies are healthy so we did it! I loved it, we drank, ate, played board games, played with the babies- this is just the begining of my new life... so crazy! I havent been able to stop stressing though about work. I need to make money, and I would hate to give up on school... but I already have my cosmetology license.. soo I COULD go to a nice salon and do hair- I only use Aveda products- WOULD YOU GUYS COME IN AS MY CLIENTS? I could do that to make some money and get Lilli and I started on our own, and finish school later...
What are your suggestions? As far as school goes, I am close to my assosiates, but definately would need my bachelors and that'll take another 2 years, and a child life specialist takes a masters degree... COMMENTS, SUGGESTIONS!!! hahaha
I hope that everyone had an amazing memorial weekend- God Bless our troop, and all the past and present and future soldiers in america :0)

Oh ya, Lilli has an appt with her Renal dr's tomorrow- the blood pressure meds... I hope they cut em off! and then the next week is pulmonary! ahh! reallly hoping oxygen comes off!!!
Talk to you guys soon! Have a wonderful week!