Still in St.Louis

Chillin' in the bouncer

Hello friends,

We were told the other day that we would be going home today (Sunday) but now it looks like we may be here until midweek or later. We had a doctor come in this morning and agree with us that it would be easier to put a G tube in than go home with the NG tube. The G tube is a feeding tube that goes directly into the stomach and has a little "button" in which we feed her through. NG (nasal gastric) tube is a tube that goes through the nose, down the throat, and into the stomach. This tube is taped on the face and is a pain! LOL Lila hates it and has been crying nonstop since they put it in. She also likes to pull it out, which is really gross. We had a NG tube in Louisville since we were unable to feed her because A. she was on her stomach for 2 weeks after the myelo closure and B. because she didn't (and still doesn't) have a gag reflex. Lila fussed and cried when she had the NG tube then too. Daniel and I really don't want her to have any feeding tube but it is obvious that she needs one in order to gain weight and grow as she should. The NG tube works for a lot of kids but it's just not working for Lila. Hopefully the doctors will be able to talk tomorrow and figure out a plan. We have a surgery scheduled for Wednesday to take the stint out of her bladder, that was placed in when she had her kidney/bladder surgery. Lila has been gaining some weight and is taking some of her bottle by mouth. She LOVES her colorful rings and her new toys that Uncle Jack, Aunt Brenna, Gigi, and Great Grandpa delivered on Friday! We are really missing everyone at home and can't wait to get home! The nurses tell us that they can tell that we are definitely pro's at this hospital thing. LOL we brought our own sheets, blankets, and pillows with us! We also brought a cooler with water and brought a BIG bag of snacks. Oh, I almost forgot! Daniel wanted me to tell everyone to be careful when using hospital bathrooms.....you WILL get walked in on by cleaning ladies if you take to long! LOL it's been a long week but hopefully we'll be home soon! Thanks for all the prayers and as always, keep em' coming!

Love,

Alyssa, Daniel, and Lila