Thursday, April 29, 2010

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

Wednesday, April 28, 2010

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

Tuesday, April 27, 2010

5 oclock rounds...

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

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

Monday, April 26, 2010

Sunday Fun-Day!

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!

Saturday, April 24, 2010

April 24th

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!

Friday, April 23, 2010

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

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!
Lauren & Lillian

Wednesday, April 21, 2010

ApRiL 21st

*** 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!

Monday, April 19, 2010

April 19th ONE MONTH!

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

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~

Sunday, April 18, 2010

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

Please note that there is a fundraiser going on NOW at 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!!

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!

Friends of Lauren & Lillian

Saturday, April 17, 2010

April 17th

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

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!

Thursday, April 15, 2010

Update from April 15, 2010

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.

Wednesday, April 14, 2010

Update from April 14, 2010

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.

Tuesday, April 13, 2010

Update from April 13

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.

Monday, April 12, 2010

Update from April 12

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.

Sunday, April 11, 2010

Lauren & Lillian - The Beginning

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.