Well, Jordin has been gradually losing a pound for the past 2 months...no gain since her hospital stay, only loss...she is now down to 17 pounds. We recieved 2 referrals today, 1 to Peds Surgery and 1 to an Intensive Feeding Program. She has poor growth and the doc said it is time we step in and put in a g-tube :o( They cannot risk her little lungs any longer. They have given her time to 'catch up' and she is falling behind even more now. This will have a toll on her lungs later in life and she needs the weight. They also said she has GERD and needs a nissan fundoplication. They will do that surgery at the same time as the g-tube.
So, within the next month, that is what we will be doing...getting a g-tube placed and having a nissan fundoplication. Fun, fun...I am SO excited...NOT!!!! Grrrrr.....
Oh, I should add that Ashlee has Hand, Foot, and Mouth Disease (HFMD) and has many sores in her mouth. She is doing okay though, just not really eating a whole lot and not drinking her Boost at all. Hoping Jordin does not come down with it...Here she is in her neb mask and wanted her goggles so the 'smoke' didn't get in her eyes! LOL
Well, that's really all I have to say right at the moment. I am just stressed out and tired and now Jordin is waking up. Will try to post news as it becomes available.
Oh the g-tube world, if you need to talk at all give me a shout! We have been dealing with a gtube with skye since she was a day old!
ReplyDelete:( Sorry you guys are facing the nissen/g-tube. Your family's in my prayers <3 There was a stretch of time when my son Hunter was an infant that we were facing the same thing - it was a weird situation all around. We ended up waiting on the nissen and his reflux went away when he was a little older (after getting his enzymes right)...but we did do the ng-tube (tube down the nose) for a few months to get him to 75% BMI, then took it out. I don't know if this is something you guys would want to ask about or not - just putting it out there. Sharing info.
ReplyDeleteCourse my son is 6 now...and we will probably need the g-tube soon, so maybe it would have been better to have just gotten it then? idk
Anyway - stay strong mom :) Your little ones are adorable <3
Grateful for sharing this post
ReplyDelete