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!


Amanda Hoyt said...

As I said in my email a bit ago, this post had me in tears, girl! You and that little baby of yours are so special to me, you really have no idea!

Anyway, I just wanted you to know that I’m thinking of you and what you had to decide on your own yesterday and man are you strong! I wouldn’t have been able to make that kind of decision on my own.

Big hugs and hope to see you in a a bit!

Kahla said...

She is beautiful and I'm definitely bow shopping before Sunday! Sending lots of P&PT!

Lauren and Lillian said...

Thanks guys! Im so bummed the bow raiser is up tomorrow!! eek!