A Tiny Miracle Sent For A Bigger Purpose

HAPPY FIRST BIRTHDAY, LILLIAN RACHELLE!!

2011-03-22T12:30:00.000-05:00

Dear Lillian (aka Lilli Bug, Lilli and Nugget),

You are such a miracle from Heaven! You have survived more trials in your short life than most of us ever will. You are a fighter and have made many believers of miracles out of your life story. Seeing you grow up has been awesome! Thank you (and your mommy) for allowing me to know you. I know this year will be easier than the last and weight will be put on and more milestones will be passed! The Lord is helping you and your mommy through this each and every day!

Happy birthday sweet girl! You are an amazing source of strength to others!

Love,
Amanda

P.S. Mommy - you are such a fighter too! You have made the best out of the life which was planned for you long before your time. All of your struggles will seem trivial to seeing your precious baby girl grow. Know that you have a wonderful support system and many prayer warriors on your side. Most of us may be in the "cyber world" or wherever, but we all root for you two everyday! Happy 1st mommy day to you!!

Lillian at TCH - March 2010

Lillian at Home - 3/22/11

Time soars by

2011-03-12T08:29:00.000-06:00

Hey guys!
Well, so much has happened and
As always, I am juggling all of life and forgetting to update!
HERE we are, almost a YEAR since my miracle came to life... We have spent a total of 13 weeks in the hospital, this doesn't
Include our ER trips and daily visits! BUT WE ARE SO HAPPY AND PROGRESSING! Lillian
Had a Gtube and fundoplycation in February, and handled the surgery like a champ! Didn't need to be on oxygen afterwards or anything! We were sent home 4 days later!
She weighs 11.3 lbs, is practically rolling over, but because of her sensory issues, will NOT use her arms to help her roll! She LOVES swinging at therapy! We go 4 days a week for OT, pT, and speech. She smiles and is beginning to giggle quietly now and
Again. She splashes her hands in the bathtub and still HATES lotion.
She eats babY food more and more often (by mouth) sweet potato is her
Favorite! We are anxiously awaiting her 1st birthday on MARCH 22nd!!!
Thank you Amanda Hoyt for helping me set this blog up, I love being able to look back at the dates and see where I was at certain times...
I, have also enrolled in university of Phoenix to complete my phycology degree all online! I'm in DESPERATE need of mommy friends my age, and even hoping for some
With special needs children
So we can relate! So if you all know anyone near Houston, please let me know! I love to have company on weekends and Lillian loves
Other kids! Thank everyone who
Has
Continuously or even once prayed for us... Without God, there is no telling where we would be.

2011-02-04T22:39:00.000-06:00

Krista passed before seeing so much from Chance, but he needs to know, SHE is the reason he lived, SHE is the reason he made it as well as he is... Crawling everywhere now, almost walking!! His mom fought hard for his life...
Chance turned ONE this week... In his fathers custody, he spend a few hours at Chillis with his Grandparents who know him best.
They all have pictures of him, with him... but there are none with him and Krista.. And that is what hurts me the worst... I just feel like so many prayers should go out to my friends family... To me it still feels unrealistic, and the hardest time for me are like this, when im in the hospital, because shes the only one who could call, KNOWING what im going through, and tell me, look girl, its gonna be okay! your so strong, we are the strongest mommies! And lift my spirits just like that..

Happy Birthday Chance Hunter Adams.. sweet boy

We all miss you Krista, I hope your enjoying it up there, although, I know you must still cry with us for happiness of your son.
I wish I could raise him. And be all that you were. But the law is the law... and it has been set.
God has his plans for us all...
I know, that because Im a mess right now, this is all out of wack. but mainly, the point here is, please PLEASE pray for my Angel Krista, her family, and her son who is now in his fathers custody...

Sad Sad Day

2011-02-04T22:29:00.000-06:00

Krista was a friend of mine, whose son was in Texas Childrens Hospital, she was a single mom. Staying up here day and night. Nursing him to health the best she could. Teaching me the ropes while Lillian was in Nicu...
We spent our weekends together growing into mommies.
Talking about our experience as YOUNG SINGLE MOTHER OF CHILDREN like ours...
We had plans for Chance and Lillian to grow up together... We took them trick or treating together, shopping together... pumpkin patch together...
played at home together... They were our family...
I have a voicemail on my phone from Krista, reassuring me of the stregnth I have, she left this voicemail in November, while we were stuck in TCH. A few weeks after that, I finally got to see her... one. last. time.

We met up at St. Arnolds brewery- she texted me, sorry we are running late! I told chris to drive like speedy ganzalas! Cant wait to see you!

We drank, and laughed, played with Chance... Krista was not feeling well.

We went to eat, we all shared a big salad and some deviled eggs. Couple beers. Then we went our seperate ways. I needed to get home to Lilli, Krista and Chance went to Suzies...

I lay in the bath that night... and text Krista, "hey are you bored? come over here! we are cooking"

she said, sure, how will I get there... in the end, I had my boyfriend go get her and bring her and Chance over. ONE. Last. Time.

Krista changed outfits in the pantry in the kitchen because both bathrooms had been occupied and were STINKY! lol She looked beautiful in everything she wore, but I told her to wear the same outfit that she wore on her birthday, I thought it looked best. She went out in it... her dad picked up chance for the night...

And Krista and her date had the time of their lives at Big Texas..

She went home to her son, told her paretns thank you, that she loved them, and that this guy was great to her.

She took her son upstairs, and ultimately fell asleep at her computer that night... Im hoping it was while she was on facebook :0) writing to one of her friends about her awesome night...

Updates On LilliaN since November!

2011-02-03T23:34:00.000-06:00

Hi all,
I am sorry I havent updated in forever!! SO, In november Lillian was intubated for 5 days due to a upper respiratory infection. When they extubated her, she had a very hard time, her heart rate was over 200 for 30 mins... they were worried they would have to re intubate her... but thank GOD they didnt have to.
We slowly "thought" she was getting better.. she came home.. and a month later we were back in the hospital with the same issues. Our new pediatrician, Dr. Ramsey, who is AAAMAZING, had us stay at north cypress hospital center- and they took care of her, with antibiotics and steroids and oxygen. And sent us home on oxygen. It has now been 2 weeks and we are back in Texas Children Hospital- With the SAME ISSUES!! The good news is, Monday she is getting her G-BUTTON!!!! The final desicion that I am having to make before then, is to do a GJ TUBE OR A FUNDO AND GBUTTON... please help me with what you know :9)
She is now 10 months old, and 10.10 lbs, she is doing wonderful, almost rolling over, trying hard to sit, eating more and more by mouth on a daily basis! Thank you all for the wonderful prayers. and any advice. please, help! i know it is last minuit! Thanks so much
x0x0
Lauren and Lillian

Please Pray

2010-12-12T23:52:00.000-06:00

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.

cyfairmagazine.com

2010-12-06T23:12:00.000-06:00

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

Timing-

2010-12-06T22:45:00.000-06:00

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!

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

2010-11-21T22:49:00.001-06:00

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!
Amanda

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

Thanksgiving with meaning!

2010-11-21T22:19:00.000-06:00

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)
Love,
Me!

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

2010-11-20T15:20:00.000-06:00

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.

Love,
Amanda

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"

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

2010-11-19T21:12:00.000-06:00

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!!!!

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

2010-11-17T13:52:00.000-06:00

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!"

Update on Lillian (11-15-10)

2010-11-16T06:15:00.000-06:00

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,
Amanda

"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"

Update on Lillian (11-14-10)

2010-11-14T11:19:00.000-06:00

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.

Lillian is in the PICU at Texas Children's

2010-11-13T23:02:00.000-06:00

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.

Love,

Amanda

Lillian Wednesday (11/10)

Lillian Yesterday (11/12)

Lillian Today (11/13)

PaReNtHoOd :0)

2010-10-12T23:47:00.000-05:00

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!
x0x0

Lauren and Lillian

Swallow Study Results

2010-10-07T00:21:00.000-05:00

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!!

Lauren

G.I. Update

2010-09-29T19:22:00.000-05:00

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!!
x0x0

Once Again... Askin for Help!!

2010-09-28T20:39:00.000-05:00

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!!
x0x0

Lauren and Lillian

Half a YEar!!

2010-09-27T22:25:00.000-05:00

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~

Good Lord!

2010-09-09T23:31:00.000-05:00

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!
Prayers,
Lauren

Blog Makeover in Progress

2010-09-09T13:31:00.002-05:00

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

Rounding 6 Months!!

2010-09-09T00:15:00.000-05:00

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.

x0x0

Lauren and Lillian

Trying to get Back on Track!

2010-08-01T11:39:00.000-05:00

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!
x0x0
Lauren & Lillian

Million Dolla Baby

2010-06-29T22:34:00.000-05:00

<~~ 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!

2010-06-23T23:09:00.000-05:00

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!

2010-06-21T00:18:00.000-05:00

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...

2010-06-11T13:12:00.000-05:00

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!??

2010-06-03T00:17:00.000-05:00

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

Ketchup

2010-05-31T23:06:00.000-05:00

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!

Double the fun!

2010-05-26T22:38:00.000-05:00

Sooo, lets start by saying, my grandpaw, JUST had his pace maker put in this evening, and is doing fine so far. Thank anyone who prayed :0)
At TCH today we did NOT get to see any of our nurses :0( the ones I asked for were not working today, and they wouldnt let me wonder back in the NICU to look for some... haha... Our pediatric surgeon appointment took for friggin ever, but the news showed- everything healing nicely, her heart still isnt RIGHT where it belongs, but it is working its way there, and as for the teeny tiny left lung.... itS BIG! From the front xray you can hardly see it, it still looked small, but the side xray- you can tell, its all there! Her heart just has to find out its positioning and then we will be set! So, with that, I am hoping that when we go see pulmenary drs, on the 10th, they will tell us ... NO MORE OXYGEN! THAT would be NICE! We are practicing sucking to the core now. Every feed that we can. Praying that she breaks records on this situation like she has on all others!
Also, about the occupational therapist field... im serious about looking into something more like that, its less competitive, and that will work better with my lifestyle now... so any help there... PLEAES HELP!
I love you all, and am grateful that amanda made this blog for me so I could vent and make wonderful connections with awsome people! THANKS!
x0x0
Lauren n Lillian

The year was 2010...

2010-05-25T23:30:00.000-05:00

Good Evening!
We did our part of the paternity testing today, now HIS turn to put forth some effort! Poor baby gagged on the q tip b/c I had to rub it on the roof of her mouth- very sensitive spot for her... and I do to it for 10 seconds, twice! So rediculous. In case no one can tell.. she looks nothing like me- its clear as daylight. WHATEVER! I also made a pit stop at the turner foundation and got some busy work to help out with! I am so ready to find a new crowd that can enrich our lives! We'll see how things roll out.
My grandpaw is still in the hospital, they are now talking about a pace maker in the morning... So, as far as I know that is local and not too dangerous- But needs prayers please...
After all that Ive been going through, I have been researching more into occupational therapists, and jobs that ECI offers... I am so interested in that. It seems very tight nit. You work with a specific several familiies for 3 years, teaching their children... helping them grow... I would just enjoy doing that so much, it's kind of like a child life specialst... maybe I can find something that requires less school... because lets be honest- I dont have time to be in school for the rest of my life! And these occupations would suite me just WONDERFULLY! Any advice or info?
Tomororw we go back to Lillian pedi surgeon to check her insides I guess, all the work he did from the diaphragmatic hernia... and Im going to ask about her belly button, and WE GET TO SEE OUT NURSES! I hope a few are there! Im so excited! Also- she pulled out her ng tube for the first time today! all the way out!! so I had to put it back in after a few hours... it wasnt bad this evening... And we started adding forumla to the breastmilk... I hope this helps something.... whether it be gaining weight, or holding her foods down, or something!
Thank you all for supporting me, and I am open to suggestions and options on how to do alot of these things... I love peoples opinions.
Hope you all have a wonderful night, and please say a quick prayer for my grandpaw!
x0x0
Lauren n Lilli

Loco Weekend

2010-05-24T23:17:00.000-05:00

Well! We made it! And the trip went so well! She does so great in the car, and now I know I can do it alone... She loved the outside air, I didnt try to pool or hottub just yet... that can be trip 2 to loco!
My niece haleigh finally go tto see her and held her alll day for 2 whole days. NO JOKE. Nice for me because I got some much needed sun therapy! This week is full of appointments too though, so for the weekend, Im thinking of something destressing!
Today ECI came by... it seemed pretty pointless, but they are sending a nutritionist out next week, maybe more productive steps will be taken then! Tomorrow we have to go for paternity testing, bright and early! Weds we go see our pediatric surgeon so he can look at his work I guess... I need to ask about her belly button as well though... and Thursday I talk with the lawyer again.
I was really concerned one day last week about the gbutton vs. NG TUBE ( whihc she has) , I asked for advice and did some research, and what I have found, I am convinced that I should take the harder route. Because, although it may be harder on me, and even a bit hard on her, in the long run, she will reach the level I want her at, which is sucking and eating normally. I know she can do it, and I dont want to lower my expectations of her. Now if something were to happen and she wasnt gaining or had any problems, I wouldnt resist the gbutton, but for me, now, Im going to take the long hard road. So expect lots of aggrivations sometimes! haha, no Im trying to stay positive!
I am going to start adding formula to her breastmilk... Im hoping that will thicken her up and thicken up in her belly to reduce vomiting. I have been practicing at EVERY feed a bottle or my chest... at nicht she does well on my chest so I may try that each night before I feed her. I hope I still have prayers out ther for us- Id really love for her to catch up on the sucking, thats one tube out of her nose!! and that would be AWSOME! the oxygen... that'll come in time I guess... And Im praying that her dad will see what an amazing, perfect litlte girl she is and how happy she could make his life! Wont hold my breath!
Well, Going to catch some sleep before the testing tomorrow! And then to visit the Turner Foundation! yaayy!
Thank you all,
Love,
Lauren & Lillian

We're Grateful forL

*Our big, supportive family

*Our new and old friends

*The fundraisers!

*good role models

*my angel from above, my pipsqueek!

Vaccines and STUFF

2010-05-17T23:03:00.000-05:00

I got one of her vaccines today, the other I am getting in 3 weeks. She did pretty well, they had to draw blood as wel to check for her thyroid levels. She only gained an ounce. NOT GOOD. So we are puttin her on prevacid and trying to do her feedings a little different.
I still cant stand my ob and need a new one. suggestions?
I am not looking forward to this week full of filling out papers and hawling Lillian around, but It must be done! Thursday Im hittin the road with my family, going to our ranch. So I can get aLOT of R&R. whew.
Im so glad I got responses on my feelings and opinions on vaccines! Thank ya'll!! I am going to go and try and heal myself with some chocolate milk and cuddlin up with my nugget before I lay her in her own bed!!
x0x0
Lauren and Lillian

Lonnng Trip Alone!

2010-05-16T23:15:00.000-05:00

Tomorrow I have an appointment with my ob., it will be my VERY last with her- uggh I cant stand the lady, and I plan on walking over the the hospital next door and getting all my medical records, THAT way, when drs ask me "how was this not seen? did you have prenatal care at all?" I can show them all of the ultrasound photos and info. I'd like to know for my own peice of mind too, if this could have been seen. (the diaphragmatic hernia). The appointment couldnt have come at a better time, I am starting to really feel the impact of everything that is going on in my life, and its wearing me down rather quickly! : my best friend moved to the other side of town, and I cant see her nearly as often as Im used to, in fact, because we have both been so busy I havent even really talked to her. The sad thing is, I dont have the energy to care about anyone else right now! I am emotionally exhausted from everything and especially from the child support thing. I have basically cut myself off from everyone because I have a hard time listening or asking whats going on with them, quite frankly, I dont care right now. I am very sad at how hard it is for me to leave to do anything because of the oxygen and monitors! I know it wont be forever, but right now it's killin me. Expecially because my mom is scared to really watch her unless she is sleeping.

So, Im ready to get this week over with, all the appointments and things, and relax a little! And I cant wait to get this child support over and done with. Its a subject that breaks my heart every friggin time I think about it. Oh, and I am going to talk to my pediatrician tomorrow about a revised vaccines schedule!

I saw this on someone elses blog- where they would write what they were grateful for at the end of it, and I am SO copying their idea :0)

<3 Grateful for:

*Gods many gifts to me, strength being one big one!

*My daughter

*My parents support

*The very few people who ask how I AM

*Friends who are considerate of what I'm going through and try to help me by getting me out of the house!

*and God :0) again.

First Night All Alone!

2010-05-14T22:59:00.000-05:00

(the day we came home!)

I cant believe it hasnt even been a full week that Lilli has been home!!! What a long week it has been... phone calls; appointments;phone calls; visitors;organizing; visitors... everything is so trial and error right now- getting the oxygen and monitor and feeding tube supplies where I need them and how I need them.
She also has bad reflux ( because of the CDH) so the positions in which I feed her in are all trial and error as well, she seems to get sick when I sit her in the little vibrating bouncer chair, and if I hang her milk too high she gets sick, but if I hang it too low it takes so long to go in that its just not realisitic.. Meaning, if I hang it at a low heighth (the milk flows by gravity) then it could take over an hour to fill her belly up, and its only 2 1/2 oz, that just doesnt seem realistic... practice and patience. Thats all I can say!

We go back to the pedi. on monday, she has to have her thyroid levels checked, I pray with alllll my heart that nothing has changed and that they are good, and she is supposed to get her 2month vaccines... I NEED INPUT HERE! Before I got pregnant, and when I was pregnant I was very weary of vaccinations- Now, Im not ignorant on the subject, I have read and read and researched. During my pregnancy I decided I would pick and choose which vaccines I got for her, and when- maybe not getting them all at the same time, or cutting the doses in half... AND NOW THE TIME HAS COME! I DO want to get the vaccines, but she has been through so much recently and hasnt even gotten a chance for her immune system to build up... I am breast feeding, which will help tremendously, but I'd just hate to get the vaccines and raise her chance for infection... I dont know- I need to pull out my books again before monday and make a decision!

She and I were supposed to go to a child support meeting Thursday, but, since her father cancelled it, we are waiting on papers to reschedule. WOW. Some system we've got! I wonder how many times this will be rescheduled... (well actually none after this one). Time for a lawyer, I dont have time to play games anymore, Im doing my best as it is, dont need one more thing nagging at my mind! I havent questioned throughout any of our journey "why", because I knew why, I knew that I could handle it, and that there was a reason and I was getting such a huge reward out of the struggle- but THIS subject, I really question WHY. Why do I have to go through this crap? I would NEVER treat anyone the way I'm being treated (or not treated)! I really wonder how someone could be so cold hearted and NOT want to be a part of this angels life. And to make us go through more crap...!? SERIOUSLY?! By the way, he's 30 years old.. should I start looking towards 50 year olds or what!?
Im finished venting now I guess- so any advice on the vaccines, let me know.. or advice on anything at that!!
x0x0
Lauren n Lilli
PS- DONT FORGET ABOUT THE FUNDRAISERS- MISSYPRISSYS BOUTIQUE HAS THE CUTEST CARSEAT CANOPYS! Thanks guys :0)

Short Update :0)

2010-05-12T17:28:00.000-05:00

Well, since we have been home I have been busy busy busy! Lillian is progressing more and more each day- just moving her arms and legs and really showing her personality more! I practice with the binki and bottle everyday, but I am not recording how much she takes out of the bottle. I just want to make sure, like they told me at the hospital, that she is enjoying the time she uses the bottle- and as soon as we get our O.T. I'll let her tell me when to start recording the milk intake from the bottle...
Next week we have an appointment EVERY day except for friday! Pediatrician monday for vaccines and thyroid check; Tuesday ECI comes to evaluate, Weds. O.T. evaluation, and Thursday PT evaluation! Poor girl is gonna be so worn out! Find clothes that fit her is soo tough! She is too big for preemie and most newborn outfits are TOO big for HER! Tomorrow was SUPPOSED to be our initial child support negotiation meeting but her father called and rescheduled it. Im fuming from my ears- how can you be so selfish and cruel to such an angel!?? HOW can you NOT want to be around to see her flourish?! So, if anyone has any suggestions on what I should do, how to get the ball rolling on child support, please let me know!
Im finishing up finals this week and still getting the hang of having all the tubes and supplies by my sides at all times... if I dont have something right next to me, and no one else is around- it is VERY difficult to get up and get it... sometimes its litterally impossible! One day I didnt have anything to hold her syring full of milk up (because we hang it and let it flow in by gravity) and so I had to sit there and hold it--- woooww, talk about patience! It takes about an hour to go in... sometimes more... Anyways, she is doing wonderful and being a sweeet litlte girl!
I am anxious to get her off this blood pressure medication too bc it makes her sleep ALLL DAY! She's awak now so we're gonna go play!
x0x0

playing with her pa-pa after a nice bath! I took out her ng tube and oxygen tube alone at home for the first time! look at that pretty face!

Lauren and Lillian

....Just in Time.... Sat. May8th

2010-05-09T06:42:00.000-05:00

Saturday! Whata Day! We got discharged from the hospital! YAY! It was a dumb process because my doctor was out of town, but we got home safe and sound! She didnt even open her eyes until we were just about home, she looked alll around the car :0) it was soo cute. I had a friend spend the night to help me just in case of anything happening last night, Kaitlin, thank goodness! I attempted to give Lillian a bath at home... so we took her off her oxygen and filled up the baby tub that has a sling in it... and sat her in it... and wam!! Her nerves got the best of her! She poo'd alll in the tub, and she was NOT happy... for a second I freaked out and told Kaitlin to go grab the oxygen tank because she was SO mad she was turning purple... but she calmed down... haha. Just so everyone knows, I have a TON of experience with newborns and babies of all ages. I love it, and I pride myself on being great at taking care of kiddos and on my "motherly instincts"... but MAN, my little girl is giving me a run for my money! :0)

I love it! We already had a few visitors, Tara and Amanda, and Rachel and she took a couple looks at them all and went right back to sleep. I know it will take a little time for eveyrthing to get figured out as far as oxygen tanks and feedings go, but so far- so wonderful! The night went pretty darn smoothly too! Thanks to the bottle warmer Tara just brought me! I had all her bottles in the room and just warmed em up, poored them into her syring and we were good to go! And she didnt even wake up when I had to pump several times! So what a wonderful mothers day I get to have with her! We are going to church with Kaitlin and her mama, and then maybe going to visit Tara and her mommy for mothers day as well! Dont wanna overdo it, but so far she's doing great, Im going by her signs and signals! :0)

Im so excited to see how life begins to work itself out now that she is where she belongs!

I am so grateful to have a daughter that amazes me daily and everything she has gone through and accomplished in less than two months of age!!! Thank you all for the support and prayers.

We love you!

x0x0

Lauren and Lillian

Bringin ya Up to date!

2010-05-07T08:55:00.000-05:00

Hey!
Well, Lillian did NOT get to come home yesterday :0(
Her blood pressure is not under control yet and they need to watch it and keep tweeking the medicine bit by bit. I was disapointed, and angry. I told the doctors, you have been watching her blood pressure stay the same ALL week, and you wait until the day before she was supposed to be discharged to tell me that she's not. So Weds. night I had planned on "rooming in" - they have rooms, just like hotel rooms, they bring you food and everything, and you and your baby stay a night together before going home, to make sure there are no questions about any machines or anything. I had that all planned out and told Lillian I was gonna stay with her and then we'd go home! And they cancelled it... cuz I wasnt gonna be able to go home. So I went up to the hospital and slept with her in the recliner all night.. or attempted to- much easier to take naps than sleep there for a night! The night nurse made me a sweet birthday card FROM Lillian and it said something like- Mommy, Happy birthday, I cant wait to play with you today! I know you are sad because I cant come home, but I am worth the wait, I promise! I love you soo much Mommy, Happy Birthday.... OH MY GOSH, I CRIIIEEED and cried! It was the sweetest thing ever. I KNEW I chose her for a reason! What a big heart she has :0)
Oh my gosh, I just deleted 3 more paragraphs I had typed,... grrr. Anyways, I am not retyping all of them, but want to say thank you for the birthday wishes, and prayers.
I'll keep everyone updated as best I can!
Love,

(nurse snapped our picture while we slept)

Lauren and Lillian

We Did IT!!!!

2010-05-04T00:51:00.000-05:00

God is truly amazing. He has brought my angel SO far within these 6 weeks, I never thought this would happen so quickly. From not knowing at all whether my baby was even going to live at all, to going through the thoughts in my head (because of doctors) of whether I would even want her to live through a life *thank God I did not have to decide on that*, to having my beautiful baby COMING HOME WITH ME THIS THURSDAY! Wow, so many people have really touched my heart during this that I thank God every night(if I dont fall asleep randomly) for all the amazing people in our lives, or that arent EVEN in our lives!

So yes, this Thursday, my 24th birthday I'll be bringing Lillian home. I am kind of nervous of how I will work out a schedule for the two of us and nervous about how she will handle coming home at all- just all the excitement and new things, but I really hope in the long run it is best for her to be here. Im hoping that I made the right desicion about not getting a G-button for feedings and that she will really thrive here at home and accomplish bottle feedings soon. I'd hate to have to bring her back to the hospital and have another surgery done! Today my mom and I did our infant CPR certification, which TCH does for free for families before they leave. And I applied my 4th NG tube, and I got it down now! I am filling up with sooo much information that Im scared I'll forget it all, but they will be putting it all on paper for me and helping me a little bit by making doctor appts for me to follow up this first time... I have to find a pediatrician by Friday, I am hoping for one in a Texas Childrens center near our house, that coresponds to TCH downtown, or a pediatrician who is very familiar with Turner Syndrome. Either one would be nice. I did her bottle feeding today and I just love the OT that we have. I am always asking her if she can do outpatient for us.. wish she could.. She is so loving with Lilli and she constantly assures me, it doesnt matter how much she actually drinks, just that she is trying and ENJOYING the time with the bottle. :0) She's so good at her job!

I think I have a final tomorrow in my class... but Im not even sure... hopefully I can do it online if I do because this week is way to busy for me to drive out to the woodlands for class. I am still working on making sure things are together at the house for Lillian. Home Health care people have to come by the house.. I have lots of Dr's appointments to make, get in contact with ECI- (early childhood intervention) and make appointments for them to come out to the house and assess her and see what types of help we can get to come to our house for her. And of course on top of all this important info, I've got to deal with child support crap. :0)

As long as the week goes smoothly and she keeps up the healthy work she's doin and gets to where she belongs *home with mama* then I will be JUST WONDERFUL!

Thanks again for all your prayers.

x0x0

AM Rounds!!

2010-05-03T00:46:00.001-05:00

Cant wait to make it to rounds in the morning so I can meet the new Dr. and tell him to get me OUT of there! Ive asked all the questions I can think of each day, several times... Im just ready! And so is she!!
I cant wait for her to see the world!! ahhh!
I had an emotional day, there was another baby boy on ECMO, he was on for a long time, but they noticed bleeding in his brain- ( its scary becasue they checked that daily with Lillian as well, luckily none was ever noticed..) so they had to remove the ECMO and when they did, he had a stroke, and there was unfortunately no brain activity. I cried over that, and then today they had to tell the parents about making a desicion on when to stop supporting his life. It crushed my heart. I am so grateful to God and the prayers I got that Lillian got through all that... and safely! They always told me about the side effects or possibilities over and over of the ECMO... its just so sad that this family has to go through it. My prayers are with them all, and I hope you guys can too.
Lillian is doin good, it felt so real today when several nurses came to say goodbye to us when their shifts were over- bc they wont see us again... Im sure I'll come visit, and have lots of questions! Yesterday my grandpa and sister and niece came to visit Lillian! She loved it!! She had just gotten a bath and all dressed up and she just loved being in their arms!!
Not much more updates tonight, but im exhausted and tomorow is a big day-- CPR! and NEW DOCTORS! wooo!
x0x0

The Ball is Rollin!!

2010-04-29T22:51:00.000-05:00

Lillian passed her "car seat test" and so did Mommy! WOOHOO~ haha, I had to learn how to install the car seat base correctly and securly and then Lilli had to sit in the car seat buckled in (in the hospital) for around an hour-since that is the duration it would take us to drive home. They monitor the babies to make sure their vitals dont go crazy or anything like that- she just slept the entire time, of course! They started her blood pressure medication today as well, not too much of a difference in the blood pressure- hopefully they dont have to increase the dose. They drew blood this morning and found THYROID ABNORMALITIES! Go figure. Seeing I have Graves disease and she has Turner Syndrome I figured she couldnt get away from that one! They are having an endocrinologist come talk to me and check her out soon. Most of these doctors are doctors she will need in the future in relation to Turner syndrome, so at least I am getting a feel for a few of them now, maybe I wont have to search for ones by myself later down the line!!

With the bottle today she only took 2 cc's... but she's got the sucking down! Just gotta coordinate the breathing and swallowing with it. As far as the nursing goes, she was a little more interested today than she has been, but still didnt do much of anything other than stare at me :0)

I got tons of info today and began to schedule my cpr class that they will make me take as well! It seems like it is all coming together vvveery quickly... This weekend I plan on making sure everything is clean and organized and that I have everything I need/want in order before her home arrival!! Gonna try and squeeze in a pedicure seeing the 2 weeks in a hospital for myself and the 6 or so that ive been in tch for her hasnt done the best things for my skin- it SO dry in the hospitals!! And I surely wont have anytime for one when she arrives home, I know it'll be tough getting used to the oxygen and feeding tube here on my own! Travel will be limited until Im comfortable with it all...

Startin to become so real and scary, I still am in shock that I even had a baby! Anyway, counting down the days and soon the hours! Thank you for being there for us!

Lauren and Lillian

what IS the date today anyway?

2010-04-28T22:46:00.001-05:00

Today was a VERY LONG, and GREAT day!! The kidney specialists came in to see Lilli today, to see what could be causing this very high blood pressure she is having... and... they found no answers- which I am glad there is nothing wrong with her kidneys, but... frustrating doesnt even begin to describe the feelings when you have seen soo many doctors that just say, " Well, we'll TRY this.." ahh! So they put her on high blood pressure medication to be given 3 times a day, and we have to check her blood pressure before each dose. I hate her having to get more medication- right now she is on a multivitamin, the tiny bit of morphine, and lasiks to help her pee... not bad, but I just hate the thought of a baby having to be on high blood pressure meds!! If it helps her... then I guess I gotta get over it! She had another nurse that we havent seen in awhile- since right after she came off ECMO, and the nurse was so happy to have her again, and she held her throughout the day :0) - she's gonna be awfully spoiled, but she deserves it!!
I scheduled my "car seat education" for tomorrow at 3- they have to sit her in her carseat for an hour (bc that is the duration from the hospital to our house) and just monitor that she is stable and okay to sit like that. They also hook it in my car for me and adjust the straps and things...
Home health care came in today too!!! This is the people that take care of all the oxygen and tubes and machines that will be needed for us at home! They confirmed our address and told me how the process will work... Ah! So exciting and makes it all so real! SHE WILL BE HOME NEXT WEEK!!
Now I just have to sign up for the infant cpr at the hospital which they make me do before I go home! And they will also have me do a "room in" experience- where I stay the night in the hospital in a private room with Lillian and they monitor me to make sure I do everything correctly!
I asked who the doctor is that will be starting Saturday, because the team changes- and they said Dr. Spears- and the fellow walked by and said "If you want to get out of here, he is the discharge doctor!" , I asked what he meant and he explained- " He is the guy to have if you want to get your baby home, Im not just saying this to please you, but he likes to care for them, and send em on their way" - so I asked, well did ya'll choose him for me? or .. is this a coinsidence- and he laughed at me, he said "no we cant CHOOSE your doctors... haha" and walked off. Wow, what a miracle! I am so glad I am getting this doctor, there is no reason for her to be there and I know he'll just take a look and send us on our way! Thank GOD...
I got lots of good smiles out of her today, and we gave her a quick sponge bath this evening and... she is just such a good girl! Her cry is the sweetest thing you have ever heard, I cant help but smiling when I hear it because it took her over a month to make any noise at all! Its the sweetest cry in the world, and she is so good! She only cries when she is getting her diaper changed or having acid reflux or something is making her uncomfortable.. hope this lasts!
She also had her first bottle feed today! She took 4 cc's, but for her first time- thats pretty good! She's got the sucking down, now she just has to put it all together! She is already doing better at the nursing as well, practice makes perfect!
Sooo- we'll see how tomorrow goes with the car seat test! Thank you all for your prayers... Thank God for this sweet little girl and the progress she has made!
Love yall,
Lauren and Lillian

5 oclock rounds...

2010-04-27T23:36:00.002-05:00

Hey!
Thank you God for all the wonderful work you have done through my daughter!
Sunday AND today I had nurses that helped with Lilli when she was on ECMO, and they love her, Im sure they say that alot.. but I choose to believe it. Each of them was just SO suprised at how far she has come- they didnt just mention it once, but constantly throughout the day! Madonna was our nurse today and just kept saying "I cant believe she is sucking!!" and " I cant believe she is on full feeds already!!" - Madonna was the nurse telling me before: "Now dont be suprised if she throws all this food up or if it all comes up when we check for residuals... many CDH babies just cant handle milk for awhile.." - but IT NEVER HAPPENED THAT WAY! We tried nursing again today but Lillian was too worn out from the O.T.(occupational therapist) coming right before we tried to nurse...
O.T. worked with her and was also suprised at her grasp on sucking over the weekend, she WANTS a binki now and she will suck away! She has a hard time holding it herself, but man she tries! Mary is my occupational therapists name, and she would get Lilli to take the binki, and once Lilli would suck, Mary squirts a tiny bit of milk in the side of Lillians lips... If Lillian isnt sucking well she chokes... but if she is, it brings the milk to the back of her mouth and she can swallow.. sometimes its a little slow, sometimes she does great... but it just takes practice! Tomorrow Mary is starting bottle feeding with a slow flow nipple, I am anxious to see how it goes! And I will start trying to nurse once a day for 5- 10 mins. She is on a roll and I am determined to help her avoid another surgery and NOT have to get a gastric tube in her stomach. We arent giving up on this sucking!
Her blood pressure is still pretty high, they have done a urine analysis and there was 2 plus blood in it... DUNNO WHAT THAT MEANS! But that is a very small amount. They also did an ultrasound on her abdomen to check for any clotting and nothing showed... So tomorrow they are having a Kidney specialist come see her- Im not sure what this doctor will do or can do... but hopefully nothing serious is going on and her blood pressure is just high from morphine weening... WHICH, morphine is now only being given once every 12 hours... each time they ween it the first day seems pretty tough for her. I can tell her color is pale and she is sweaty and very irritable, it kills me that she has to suffer that way, but Im glad she didnt have to endure any pain through all the other crap she was going through.
I am still set on having her home next thursday.. if everything is okay with her kidneys. Tonight in the rounds at 5 oclock Rachel and I were sitting there talking and the group comes by and says " Lillian Flournoy, former ECMO baby, left side diaphramatic hernia, is on full feeds, q 12 on morphine, should be home by next week.." Rachel, at the top of her squeeky little lungs yells "WHAT? CAN YOU SAY THAT AGAIN!!??" And the Dr laughed and said " She should be home by next week. Moms birthday is next thursday the 6th right? So thats what we're aiming at" ... :0)
When they told me they would help me get her home by then.. I didnt believe them, why would MY birthday be of any importance in this situation? LOL (by the way, its rude and your totally not suposed to speak while the doctors are doing their rounds...) but it sure was good to hear THAT!
I am imagining our life out and how wonderful it will be, but then I think about how much I will really miss these nurses I have had... How do parents do this part? I LOVE my nurses- they saved her life, and took care of her FOR me, when I couldnt, when I was helpless! Im already preparing myself for the strange feeling I know will come with leaving there- no beeping, no other cries, the smell, hearing the dr's constant updates... kinda scary to leave all that! I cant imagine how tough it must be for families that have been there for months on end! God Bless them...
Please keep Lillian in your prayers for a healthy report on her kidneys!
We love you all,

Lauren and Lillian

April 26th

2010-04-27T00:11:00.001-05:00

Woke up early today to get to TCH before the doctors did their rounds on Lillian. When I got there she was in her swing, it was feeding time.. they had the feed in a large syring hooked on a machine so it timed her for an hour to eat it... We have moved up from this stage and because some of the nurses DO NOT pay attention, they do things WRONG. Was it damaging, no. But confusing to a child who doesnt know how to eat already- YES. I was frustrated from that second on. We do her feeds by gravity, more like a bottle would, we hang them up and let them flow into the tube- it is a little more tough for her belly to handle, but she has been doing fine with it. Anyways, then during rounds I had to ask the new resident to SPEAK UP- acting like she was hangin with a pack of mice!! My attending told me she thought it'd be a couple more weeks, and I said, well.. bad new Dr. Chan- it will be done and we will be out by next Thursday, I hope your willing to work with us... otherwise Im running with her!!! All she does is lay there and eat, and sometimes swing, it is NOT good for her development and you can tell she is ready for more. By this time at home she would be laying on her tummy, hearing baby music, grabbing toys, looking at so much stuff, hearing dogs bark, feeling sunshine, experiencing the world and surely that will help her develop better. I could truly understand if they had a reason, and they clearly did not. New team comes monday and they're going to want to keep her to make sure shes okay. Well, hi, Im mom, I know best, you guys did great work and now SHE'S OKAY! Thank you so much, We'll be leaving now! haha, thats how the conversation will go. Whew. Other than that, I bought her some outfits that will fit so she doesnt have to wear the same ones over and over in the hospital.. I spent time with Tara and her daughter and I just cant wait til Lilli grows a little and they have play mates! We have been patient and done what we needed to do, now we're ready to do what we want to do :0) go on walks, meet my dogs! swim, listen to music, watch cartoons, sit in all her jumpers!

Thank everyone for supporting us. I hope I am doing all the right things, I am hoping to get an email back about doing some work for the turner syndrome society, since my child will have it forever, and I could use a small income right now while I keep going to school! I would LOVE to meet other parents who have these struggles, advice and know what to prepare myself for! Hopefully Ill hear more soon!

Love you all,

Lauren & Lilli

Sunday Fun-Day!

2010-04-26T01:26:00.001-05:00

havin dreams of kissin her mama!
Today was the first day for her to wear pants! haha, they are the ONLY pair of newborn pants I have too.. And that precious shirt is from her best friends mommy- TARA! :0)

Tomorrow the doctors change again... ONCE A MONTH! So my nurse, thank GOD it I had the nurse I love most today, we made a list of things I need to do and ask and update the doctors on so that we can get the HECK out of there... Otherwise, they would wait until THEY knew my baby and felt okay with sending her home. and that is NOT OK. Times on my watch now and I want her home and she's ready! If I knew how to upload the videos off my iphone to here I would... ah! She was so wide awake today and just smiling and looking at me and playin with her tounge! Getting better and better at sucking! I knew she'd do this.. Her blood pressure is still high so they are checking her kidneys tomorrow to make sure there is no clotting around or near them. It may just be a withdrawal from morphine. Other than that, I asked if I could do "non nutritive" feedings.. that is where I go pump and then come back and practice breast feeding with her, and that way since she cant swallow correctly just yet, she wouldnt have milk squirting down her poor throwt. Its to the point where when Im up there, I feel like I should be packing her stuff and litterally carrying her out with me... everything is getting frustrating and thats how I know its time. Even laying in the recliner is irritating, cords gettin caught in stuff, lights goin on in off, babies crying, my neck is killing me.. ect ect ect! Then the nurse came up to me one day bc I had Lillian lying on my chest and we were sleeping and she said, Ms Flournoy, your fixing to drop her.. and lifted her up and put her in a different position.. UHHH hey lady, Im no dummy! She was laying on my boob... not goin anywhere!!! grrr, It's just time for us to be home unless they are going to do something with her, you can really feel it when you stay there that she is done with the place. Maybe she knows she needs a little more work, but that up there they arent giving her what she needs. Layin in one bed all day staring at the same ceiling must be misserable!
Changing the subject- her dad called me today and informed me he moved to San Antonio today. Awsome. So... that Attorney General Letter thats on its way is going to get sent to you HOW? Oh, cool, Ill have to contract them AGAIN and sit on hold for an hour and wait until they decide to RESEND another letter to your new apartment. sheezuz. What. A. Winner.
Time to work on awsome homework- LIKE THATS THE FIRST THING ON MY MIND! PAH!
Im doing this all for Lillian...
we will be seeing everyone very soon!
x0x0

April 24th

2010-04-24T23:55:00.000-05:00

Today was such a GREAT GREAT day. The morphine is now being given every 6 hours and Lillian is handeling it well, they are concerned with her high blood pressures- so monday they will do a scan of her kidneys to check for clots. But if nothing is present, then it is just a sign of withdrawals from the med. She has been practicing sucking with her occupational therapist and they use the binki or finger to get her to suck, and then they squirt a very little ammount of my breast milk from a syring into her mouth while she is sucking... then the tough part is the swallow. But she has the hang down of the suck, just gotta get that swallow... and then make sure she's breathing!! and THEN no more nose toob!! I am trained and learned how to go home with an NG tube, and I WANT TO. Today Lilli sucked on her binki for a min. or more without any help or hands on it! Shes ready for the real thing... I cant wait to get her out of there and be with me! She swung in the swing Mrs. Amanda brought her :0)
She loved it... and today Her Auntie Rachel got to hold her for a long time! Yesterday, Auntie Kaitlin held her for a long time too! She's a popular little pip squeek! She has so much love its just wonderful! Im sure she'll be a spoiled little nugget! I love all my support!! Thank yall!

The 22nd, "My birthday is in 2 weeks"

2010-04-23T10:31:00.000-05:00

NO MORE PICC LINE!! Yay! Now I can just pick her up and change her diaper and have fun with her without worrying about the needle in her leggy!! It was such a good day, I was up at TCH for even longer than normal, I got there pretty early and I grabbed my pillow out of my locker, layed it on my lap and spawled Lillian out on it :0) Time for the real world little mama, cant be swaddled forever! She didnt hardly flinch, just layed there all sprawled out and slept while I read all the information I could on Turner Syndrome that Amanda brought me :0) (LOVE YOU!) Once you think youve read it all... there are always more concerns and new findings... but like I've said, we are ready! In one of my classes last semester we were asked this: " Handicap- Blessing or Curse?" (Lillian isnt handicapped) but my answer was yes, even then. All that has happened is a blessing, some things in disguise, and others are clearly a blessing. It has brought my family and friends together, I've made NEW, amazing friends throught this, she will be able to take pride in her life story without having to wait until she is 30 years old! There are so many reasons I feel so blessed that this happened to ME, but I dont want to get emotional...
My birthday is MAY 6TH. That was 2 weeks from yesterday. And I will guarantee that my daughter will be home on or before then. I told her and told her several times, you need to accomplish THIS, and you need to do it in your own time, when you feel good enough to, and God will help you... But now that she has been there a month, now that I can see in her eyes she is strong, I have been telling her the past week or so- you need to come home SOON, 2 weeks max- She's been there long enough, and I feel like now we need EACH OTHER and NOT the doctors...
So just keep waiting... I'll let you know her discharge date next week... PROMISE you.
DONT FORGET- the bow fundraiser ends SUNDAY! Go check out the site, they are so cute, surely you know SOMEONE with hair to purchase one for! ALSO- the teddy bear fundraiser is still up, so go check em out, they make awsome gifts!
Love,
Lauren & Lillian

ApRiL 21st

2010-04-21T22:52:00.001-05:00

*** This song isnt as meaningful as the one that used to play, but I LOVED it while I was pregnant, I like to change the words up a little and fit them to me :0) and Lilli must like it to because when I sang it while she was on ECMO and pretty much totally unresponsive she would wiggle more then any other time :0) ***
Today I felt like I had to make my first BIG desicion for Lillian~
This morning as I was trying for the 3rd stinking day in a row to find jeans that FIT other than maternity ones.. I got a call from the doctor and left the store to answer it, they explained to me, they didnt want to take out the PICC line (which was supposed to be taken out this past monday) because they wanted to see if I would consider getting Lillian a G-button (gastric feeding). This is a surgical procedure and they would keep the PICC line in so they didnt have to re-do a new iv. Right now Lillian is being fed through a nasal gastric tube, its very small, and has to be changed every 30 days, but you have to be careful with it to check that it is in place in her stomach and that she hasnt wiggled it or pulled it out of place...
My daughter is a month old this week and has 2 MAJOR surgeries preformed already... and now they are wanting to do a 3rd? That means she would have to be RE-intibated, put on more meds to be put down for the surgery, when she STILL is coming OFF of morphine... but, is this something that will help her? Does she need this to eat? It is more permanent than the N.G. tube... but they havent even given her a chance to really learn sucking out of a bottle! As well as she has fought through everything else, all the obsticles she has soared through, how the hell do they know she wont be chowin down bottles the second they TRY it. Well anyways, I asked the pro's and con's and decided NOT to get a G-Button... the nurse told me most parents will get a G-button because they dont want to deal with or learn the procedures/precautions and whatnot for a nasal gastric tube.. Well thats selfish to me.. If I can take her home with that, and practice bottle feeds and sucking daily and nightly, IN HER OWN ENVIRONMENT, and she catches on even after a month- I HAVE SAVED HER A SURGERY! She can have this NG tube for like 6 months if need be, and if I see she just isnt going to take a bottle, THEN I can bring her back and get the Gbutton procedure done. But she'll suck, she's a smart girl and as soon as they stick a bottle in her mouth rather than a dumb pacifier, and she gets a little milk, it will reinforce her, and she'll suck! I just KNOW IT!! ughhh
So- today I was taught how to insert the NG tube through her nasals and how to check that it is in her stomach, NOT her lungs or any other strange places, and a couple other need to know things. I chose to just watch and only perform certain things today, NOT insert the tube into her nose yet... THAT will be a nerve racking day- after watching I feel much more comfortable b/c she didnt gag or squirm tooo much.. but scary still! I cant give dates, but my baby is coming home verrryy soon! I dont care what it takes, I want her here if it's safe enough and I just know she can progress more here than there! She hasnt even seen sunlight! I cant wait... ! Thank you all for all the donations and love and spreading the word! Also- PLEASE, check out the 2 fudraisers going on- they are posted below- one is bows and the other teddy bears! Purchase some pretty bows before sunday and 50% of the profit will go to Lillian.

We love ya'll!

April 19th ONE MONTH!

2010-04-19T22:30:00.000-05:00

ONE MONTH OLD & ONE MONTH DOWN IN THE NICU!

Lilli didnt get her picc line out today like we hoped, tomorrow for sure! She is at full feed on the tube, so they will start working more and more with bottle feedings! I just want to take the time today to thank Amanda Hoyt for setting this all up for me, and for everything she has done. I am so excited to get more information on Turner Syndrome, which she emailed and pretty much got me! I didnt know Amanda at ALL before this, never met, never crossed paths at all, and she is a true blessing, an angel to me and Lillian..

Also, anyone reading this that has skin... should go look at my mary kay website- there is a link on the right of the blog- I can help you with anything you need or want, just ask! I am LOVING the new cheek glaze, and creme highlighter! Just so ya'll know :0)

Thank you for all the support, when I have a better update I will let you know!

Lots of Love!

April 18th

2010-04-19T01:20:00.000-05:00

FIRST:
Thank EVERYONE FOR DONATING! I AM recieving it, but my bank account has to be verified through paypal and it takes a few days... then it will show up at the bottom of the blog how much has been raised! I really appreciate it... it will help her future beyond belief!!

Today, I completed ALLL my makeup homework for school that I had missed since I was put on bedrest, I did laundry... LOTS of it, and when I went to see Lillian tonight- SHE HAD NO TUBES IN HER MOUTH!! They moved the feeding tube from her mouth to her nose to help her digest a little better and now we can practice sucking more! I LOVE seeing her face, she was so awake tonight when I was there, I love it, we just sat and relaxed and talked about how she has to be a sweet little angel and come HOME on my birthday... (MAY 6th). Tomorrow (actually today, monday) she has been in the NICU for a month. I can hardly remember the first two weeks...
It is definately time for her to come home, now that she is more alert I hate her having to just lay there and look at hospital crud!
This next week is going to be so interesting because so many new things will happen with us... she will get her PICC line out tomorrow, and start taking her morphine by mouth, which she is almost done with anyways!
She is having her lungs and spleen looked at tomorrow as well- just to make sure things are going okay...
Other than that, the therapist will practice alot more with her on sucking and taking a bottle... and I should get an update for our goals for the week tomorrow!
I have lots of new pictures uploaded if you visit the FLICKR stream at the bottom right...
Thank you all, we are so blessed and couldnt feel more loved...

~Lauren and Lilli~

FUNDRAISER for Lauren & Lillian (through L.R. Beary)

2010-04-18T18:28:00.004-05:00

Please note that there is a fundraiser going on NOW at http://www.lrbearyfundraising.com/ for Lauren & Lillian. The sweet owner, Laura, let me know that for as long as we want the fundraiser to run, it will and for each order that is placed that mentions "Lauren & Lillian" at check-out, she will donate 50% of the profits to our sweeties LouLou & Lilli Bug!! http://www.lrbearyfundraising.com/LaurenLillian.html

Thank you to everyone who has begun to follow, has read Lauren & Lillian's blog, donated, prayed, sent her an email, posted a comment or even thought good thoughts for the ladies. You will never know how grateful they truly are!

Love,
Friends of Lauren & Lillian

April 17th

2010-04-17T21:50:00.001-05:00

Lillian is doing SO wonderful! Today they reduced her morphine a little more- she is now at .03, last saturday she was at .1!! She is up to 30 cc's on her feedings and they give it to her over a 30 min. session, but she seemed to have so many belly aches today that they may be switching it to 45 mins...
She got a bath today, the first one I got to see!! She HATED it, but that is because the nurse was a bit rough... only because the other nurses had been so gentle that they hadnt cleaned her well... she was getting VERY VERY stinky... but I thought it was rude to say that about my own baby!! Once she settled down I dressed her up in a precious shirt that my friend Tara made for her! She got so many compliments, seriously, random parents came over talking about how pretty she was and how cute her outfit was!!
Tonight they are letting the TPN run out (vitamin supplement) and then they can take the PICC line out on monday and the morphine and other medications will have to be given orally..
Im so proud of her! I am still worried about her right eye... it hardly opens ,,, no one else seems to be worried, but I dont want the left eye overcompensating for the right eye! We also have to really start workin on sucking techniques- she is a stubborn little mama! But I talk to her and tell her that when she is ready to come home she has to know how to suck breath and swallow! I practice when Im laying with her, but I hardly know what Im doing!
Other than all that, I am trying to finish school, I was given choices: drop, take the grades I had before I had the baby and use that as my final grade, OR makeup homeworks and turn them in. its about 4 in each class... and thats what I am gonna do! or TRy!
All these need to be done before Tuesday or Thursday! eek! I worked on a few while the nurse did Lillis assessments and she slept. Then Lil and I got a recliner and her soft green blankey and a big blanket for me and layed ourself out and got nice and cozy for several hours! (Til pumping time again)...
Wish Us Luck with Lilli's sucking therapy so she can be free of tubes and just on a bottle!
Then we need her lungs to be pumpin good! and her splean to be okay... they are coming to look at it monday... Ill keep you updated- lord knows this info changes each day!!
God Bless You All for supporting me. We are 2 VERY lucky Ladies
LaUrEn & LiLLiAn

April 16th

2010-04-17T00:15:00.000-05:00

Lillian is slowly being taken off of her morphine drip, which she has been on since the night she was born. Today, they decided to take it even more slowly than before, and having to give her Ativan during the day as she gets upset and uncomfortable. I HATE that ativan, Im glad it's helping her feel better, but she just lays limp when she has taken it. Today she and I laid in the recliner for 3 1/2 hrs together, we both snoozed a bit together.. Her oral therapist came in as well to teach me how to work with stimulating Lilli's mouth muscles. She taught me some neat techniques and Lilli sucked a little bit but we need MUCH more work! If she can get this down then we can get the feeding tube out and we can be ON OUR WAY HOME!

Update from April 15, 2010

2010-04-15T16:48:00.000-05:00

Lillian was starting to be weaned from her morphine after doing so well after her surgery (on April 7th) but then she started showing signs of withdrawal (not good for her tiny body and conditions). It hurts Mommy Lauren to see her sweet girl in pain. The doctors and nurses put the morphine levels back up to the levels they were at the day of the surgery. She still must have pain because when I went to visit today, Lauren said she was in pain. She cried out for the first time while I was there - the sound was very quiet, but broke our hearts none the less. Poor baby. Please cover this precious baby and her mommy in your prayers.

Update from April 14, 2010

2010-04-14T11:37:00.000-05:00

God is SOOO Good!
GOD seriously is working a miracle with Lilli! She is getting her ventilator tube out today!
Please continue to pray for healing to be done in this little one's body.

Update from April 13

2010-04-13T12:24:00.001-05:00

Today Lauren went back to school for the first time since being put on bedrest. She had a full day of errands after that and then she went to visit her sweet baby Lillian. For the first time ever Lauren was allowed to dress up Lillian (she was not required to be naked!). Instead of trying to put on an outfit that must be all snaps (because they can't pull much over her head), Mommy wrapped Lillian in her 100% organic bamboo silk blankey! Lillian opened both eyes up and loved her blankey!!! Later in the evening, Lauren tried one of the button down sack dresses on Lillian and she hated it.

Update from April 12

2010-04-12T12:17:00.003-05:00

Lillian had an MRI of her brain today. We are waiting for further genetic testing because of abnormalities found. Please continue to pray for Lilli Bug.

Lauren & Lillian - The Beginning

2010-04-11T13:48:00.024-05:00

When Lauren found out she was pregnant in 2009, she began to plan for her beautiful bouncing baby to arrive on April 10. She'd always wanted to be an "organic mommy" - one who uses cloth diapers, breastfeeds, makes her own baby food, etc. She was going to have to do it alone without the father of the baby in the picture. While living with her parents she'd have to make do with whatever help they could lend but she planned to do as much as she could on her own. When she found out her baby would be a girl, she named her Lillian Rachelle and began planning her girly wardrobe, nursery and life.

On February 25, Lauren was put on bed rest for high blood pressure and protein in her urine. She showed signs of preeclampsia and her OB wanted to protect her body and her baby from harm. A few weeks later, on March 11, when Lauren was 36 weeks and Lilli was measuring 4 pounds and 6 ounces, her doctor put her in the hospital for monitoring of her preeclampsia. On March 14, Lauren missed one of her baby showers because she was in the hospital.

Finally, after 10 days in bed at the hospital, Lauren was induced on March 21st (with Cervadil). At noon on March 22nd, the Cervadil was taken out and Pitocin was started. At around 1:30, Lauren was 1 cm dilated. By 5pm, Lauren's blood pressure had risen too high - a C-Section had to be done. They started the C-Section at 5pm on March 22 and Miss Lillian Rachelle Flournoy was born weighing 5 pounds and 1 ounce!

The C-Section ended at 7:16 pm but Lillian had already been rushed to the NICU at Texas Children's Hospital. Lauren's health declined once again and she had to endure a blood transfusion at around 9:40 pm on March 22. Not only did Lauren not get to see or hold her baby but she was near death and found out that her child was very sick also. At 3 am on March 23 doctors told Lauren about her newborn baby's condition (she had a diaphragmatic hernia - her diaphragm did not form during development which allowed all of her abdominal organs to push up into her chest cavity whereby impeding proper lung formation), Lillian was put on an ECMO (or heart/lung machine) while in the NICU to help her breathe. Her heart was in distress and her breathing was labored. On March 23, Lauren got a CT scan to make sure she had no more internal bleeding. On March 23, Lauren was told that Lillian also has a condition called Agenesis of the Corpus Callosum (Lillian is missing the section in the middle part of the brain that connects the left and right sides to each other). On March 25, Lauren's hemoglobin levels were tested once again and she was deemed well enough to leave the hospital to go see her baby girl down the street in the NICU at TCH.

On March 26, Lauren was told that Lillian also has Turner Syndrome. We must point out right here that when baby Lillian made it to birth with both Turner Syndrome and a diaphragmatic hernia, many MIRACLES happened. Lillian is the only child on record (per Texas Children's doctors) to ever be born and have both conditions. Most fetuses that have Turner Syndrome (98%) pass away through miscarriage.Lauren was also told that because of having Graves disease herself, that the chances of her ever having a baby were 2%. Having Lillian on the opposite side of town from where we live, and it just so HAPPENED that we were on the same street as Texas Childrens Hospital.. 1 of the 100 facilities in the USA that works with ECMO machines... which Lilli needed to live that night truly makes a whirlwind of miracles.. LILLIAN IS A TRUE MIRACLE AND SHE IS A BEAUTIFUL MIRACLE AT THAT!! :) Because Lillian is considered the sickest baby at Texas Children's right now, Lauren has a standing bed on the floor of the NICU in the Ronald McDonald House room. Lauren has only stayed a few times because it is too quiet and no one is around. She says that no one stays the night to visit their babies that are in the Level III NICU (which is strange because these are the sickest babies...very strange). She doesn't know why but when she's there (which is almost all the time) no other parents are there. She is not comfortable sleeping in the bed there since her C-Section is causing her problems so she's had to be driven to and from NW Houston to The Med Center on a daily basis. On March 26, Lauren was told that Lillian's heart was ok although it was pushed to the right side of her chest due to the diaphragmatic hernia. The doctors began speaking to Lauren about upcoming surgery to repair the hernia so that Lillian's abdominal organs could be put into the right place in her body. On March 27th, the morphine drip for Miss Lillian was reduced (yay!). On March 28, doctors determined that Lillian's blood was not clotting properly. They did reduce the settings on the ECMO from 100% down to 80% and Lillian began sucking on her binky! :) On March 29, Lillian was successfully taken off of ECMO to see if that would help with her bleeding problem. They were able to weigh her and due to all the swelling (from not urinating), she weighed 7.5 pounds. On March 30, Lauren began to get an infection of her C-Section. She went to the doctor and had to be away from Lillian for several stretches at a time and missed her so much. In the meantime, on March 30, Lillian got a PICC line and the doctors switched meds to see if that would help her urinate. On March 31, Lillian lowered her morphine, got off 2 meds and urinated a little!! She opened her eyes and stared at her mommy for the first time and cried a little bit (because of all of the tubes, Lauren cannot hear the cries much - they are muffled - she so wishes she could hear Lilli's cries!) On April 1, Lillian got off all of her meds except for one that helps her urinate (and morphine). Doctors are still talking about surgery for the hernia and hope to do it very soon. On April 2, Lillian begins to lose a lot of her fluid and is very ready for surgery. Doctors think that maybe early the next week it can happen if she continues to lose fluid and if her heart stays strong. Since Lauren is pumping her milk all night every night (and during the day at the hospital), she calls the nurses in the NICU whenever she can to check-on her precious Lilli Bug. She hopes they don't get annoyed but knows that they better get used to her calling!! During a visit to the NICU on April 2, Lauren's hematoma under her C-Section incision began to bleed - all over the NICU!! Lillian's primary nurse helped Lauren and took her to St. Luke’s hospital ER (right next door) where they could fix her up quickly. Luckily she got help when she did or she might have had more problems. While there, Dr. Jen Arnold from "The Little Couple" on TLC, reached out to Lauren to check on her and baby Lilli. On April 4 (Easter), although the nurses told Lauren to stay home and rest after her ordeal on the 2nd, Lauren knew she couldn't miss seeing her sweet Easter Lilli! She saw her and kissed her for a few minutes. On April 7, at 9:06 am, Lillian got wheeled into surgery for her diaphragmatic hernia. Unfortunately, Lauren was on the NW side of town when she got the call even though the doctors and nurses promised her that they'd call her before they prepped her so that it would give Lauren enough time to get to the Med Center before the surgery so she could kiss her baby before surgery. Lauren was not happy but the waiting game had begun. She was driven to TCH by her parents to wait for the 3 hour surgery to be over and to get news that it'd been a success. At 2:47 pm, Lillian came out of surgery and the doctors said that it was successful.

On April 8, Lauren was finally told by her doctor that she could begin to drive again. This was such happy news for her - now she could visit her baby whenever she wanted (not having to rely on parents or friends to drive her 30 + miles one way)...On April 10, it was Lauren's BEST DAY EVER! She got to hold her Lilli Bug for the first time ever! Also, she got to change Lillian's diaper for the first time! Lillian also got to eat Momma's milk (just 6 cc's) for the first time ever!!

Lauren hopes for more good days than bad. She's a positive person, but as the days have turned to weeks and Lillian turns 3 weeks old tomorrow (April 12th), Lauren has begun to think about the future and what it might hold. She planned and dreamed about her future with Lillian. Now she doesn't know what to think. She's not sure how long her baby will be hospitalized. She's not sure what the future holds for Lilli with her medical conditions and needs. She's not sure who in the world would employ someone like her when she's got to have a flexible schedule to care for her precious daughter. And, right now she's still in school (to become a Child Life Specialist). How will she be able to concentrate and finish her degree while going back and forth between NW Houston and the Med Center to visit and take care of her baby in the NICU - ALONE? All Lauren wants is to take her sweet baby home to live as much as a normal life as possible. Hopefully with help from God, friends, family and maybe even some complete strangers, she can try to live out that wish.