Trying to get Back on Track!

Hey! I havent posted in awhile.... just got off schedule and have been going non stop! Im sure everyone with kids understands these moments! Lillian is SLOWLY gaining weight... not yet 8 lbs... but almost there.. 4 months old :0)
I am in SERIOUS need of PRAYERS! We need her to get some sort of sucking/swallowing down! In 2 months, we go BACK to the GI doctor and if she has not made progress, we will begin planning a Gbutton surgery- I DONT WANT THIS! I dont want to put her through another surgery, I dont think she is ready for that and I have faith that she can suck a bottle!! If anyone has or knows another child around this age with turner syndrome, PLEASE let me know :0) Id like to know if any of the slow weight gain is normal!
Other than the weight gain, she is doing AWSOME! Lifting her head and working those little hands! Always sucking and chewing her fingers :0)  We saw her daddy twice last week, while we were in San Antonio visiting my sister... The visits went awsome and all I can do is pray that he WANT to be involved, its so hard not to love her after youve met her!! He said a few things that make me smile everytime I think of it.. just talking about her sweet little noises she makes and how they could never get annoying... I THOUGHT, I KNOW!! So, hopefully he realizes he's really missing out, and the only way to fix it is to get involved.
Our week is full of doctors appointments again! Im wondering how I can get all my doctors to talk to one another and come up with a "plan" for Lillian, goals and such... Im still learning...!
I hope everyone is doing wonderful, and enjoying summer!
x0x0
Lauren & Lillian

Million Dolla Baby

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

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

Weight Weight WAIT!

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

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

x0x0

Sorry!

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

Please be careful...

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


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

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

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

Thank you!
Amanda

WENS the DAY over!??

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

Ketchup

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!

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...

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

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

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!

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!

(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)

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

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!

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!!!!

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!!

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!!

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?

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