Raylees surgery went well yesterday. The recovery has been a little rough though, she has acted like she is in a lot of pain. We did put her to bottle today twice and she did ok and the we were able to put the rest through her g-tube, and she is tolerating it well. We just got back to the room from visiting her and she seems to be doing a lot better tonight then she was all day so that is great. I will try and post some new photos tomorrow. Thanks for all the prayers.
Love,
Kyle & Jane

Well another week has gone by and Miss Raylee is still not eating what she should on her own. They tried pulling her feeding tube and just seeing what she would do on her own and between her reflux and her being tired it was just to much. She going to have to have surgery and it is scheduled for Friday morning at 8:00. The surgery is to fix her reflux and to put in a g-tube. The reflux surgery is called the Nissen procedure, part of the stomach is wrapped around the lower end of the esophagus and stitched in place, reinforcing the closing function of the lower esophageal sphincter. Whenever the stomach contracts, it also closes off the esophagus instead of squeezing stomach acids into it. This prevents the reflux of gastric acid. The gastrostomy tube or g-tube is an alternate way to offer food and / or medicines. It also can be used to vent your her stomach for air or drainage. They say the g-tube could be there for 5 months or 5 years it just depends on how Raylee does eating. They say some kids do a lot better when they are able to eat solid foods.

As for me the protein in my urine has started to go down on its own so we were able to hold off on the biopsy. We start a few medicines to see if we could clear it up that way. We will retest in 6 weeks and see where we are at.

Please keep Raylee in your prayers.

Love,

Kyle & Jane

Well we are back in Denver....Raylees daddy is sick this weekend so I went to see our little girl and this is what I walked in on. Is she the cutest! She is now 8lbs 2ozs. She tipped the scales at 8 lbs on Tues. I almost cried when the nurse told me, she is getting so big. After such a wonderful greeting she was pretty fussy. She is having some reflux problems, she is throwing up and is quite upset during her feedings. They started her on some meds Monday for her reflux, but they don't seem to be helping. We will talk to the doctor tomorrow and see where we go from here. She is still doing good on her oxygen so if we could get these feedings under control we could talk about taking her home with us, but for now it is looking like it might be another month or so:( Thank you for all your thoughts & prayers.

Love,

Kyle & Jane

Raylee hasn't had many changes in the last few days. Her swallow study went well. We found out that she is not aspirating, and that it is just a lot of work for her to eat from a respriatory stand point. They say her lungs are still pretty immature for her age so it is just going to take time. She is now 7 lbs 9 oz. I started to get a sore throat on wed. and didn't think much of it but on the way down to Denver yesterday it got worse and I can't go up and see Raylee. I am soo sad, but her daddy has been going up and doing her cares and bringing me new pictures. I miss her soo much, but this is good for her and her dad. Love to all!

Jane & Kyle

I am sorry it has taken me so long to update. Raylee is doing great on the oxygen. She is 7lbs 7oz and soo cute. They have bumped her feeds to 58 cc's and they are putting her to bottle twice a day again and she has taken all of her last three bottles!!! This is all wonderful news because not only is he doing good but she can go home on the oxygen settings she is on now. We just need her to start eating more on her own and then we will all be able to come home together. She has her swallow study today at 1:00. They are doing this to check for reflux and to see if she is aspirating while she is nippling. I guess they just put some stuff in her milk and they can watch where it goes. Isn't technology amazing.

As for me my doctor is still not sure what I have so I am going in for a kidney biopsy next week to see what is going on. I guess it is an outpatient procedure they take the biopsy and then I have to stick around for 4-6 hours to make sure there is no bleeding. We won't know anything for 7-10 days after that. I hope all is well with everyone. Thank you for all your thoughts and prayers.

Kyle & Jane

Well last night Raylee made it to 7lbs 2oz and tonight she is 7lbs 3oz she isn't having any problems growing! She is however having some problems with her eating she gets wore out pretty fast. They are going to do a swallow study next week to see if everything is going where it is supposed to when she is eating. The doctors will know more with the study and then we will go from there. They are going to try her on straight oxygen tomorrow and see how she does she is still on a blend where she has a pressure and oxygen right know and they want to see if she can tolerate the change. I can't believe it is October already. Thinking of you all!

Kyle & Jane