Happy Birthday Baby Girl!

It is hard to believe, but yesterday was Raylees 1st Birthday. She is getting so big! We are now sitting up on our own and when put on all four she just looks at you and grins like " I am not going to do this, but nice try". She is still changing every day, and has a great personality. She is a very happy baby.
Raylee is eating 2 to 3 jars of baby food a day and loves banana puffs. We are still using her
g-tube for her milk, but she will drink water out of a glass (it is so cute!). She is still on her oxygen when she sleeps, but is off of it during the day. We still only have two teeth. I am not sure where the other ones are hiding. She has her 1 year appt tomorrow so I am going to ask about that. Raylee is seeing the Cardiologist from Denver in Gillette July 20th it will be the first time we haven't had to travel to them, so we are excited about that.
As for me I have another test in July for my protein. It has continued to come down and hopefully this will be the last time I have to do anything. I went ahead and had my tubes tied 3 weeks ago, as it has been recommended that I do not carry anymore babies. They have told me that what happened with Raylee will more then likely happen again and they can't promise as good of out come. I am ok with this and in a few years if we decide to have more children we will look into other options.
I hope everyone is having a great summer! We are going to have a barbecue at the ranch for Raylee July 24th at 4:00pm to celebrate the last year. If you would like to join us please make sure I have your address, or just show up! We would love to have you! Thanks for all your support over the past year.

Love,
Kyle, Jane, & Raylee

April 7th, 2010

Hello everyone. We wanted to share some new pictures from Easter! Raylee is doing well. She is changing and growing everyday. She now weighs 15 lbs and is 25 inches long. Raylee rolls over, and is very close to sitting up on her own. She is AMAZING!

We were in Denver last week for an eye check up and the doc says Raylees eyes are looking good.

We thank all of you for your continued thoughts and prayers.

Kyle, Jane, and Raylee Kay

Hello everybody! Our little Valentine continues to amaze us every day. Raylee has two teeth and loves to rub her little tounge on them. She has turned into a little thumb sucker too (it is so cute!). We went to Denver on January 18th and all of her check ups were good. She is still receiving her RSV shot every month and we have been lucky enough to avoid any sickness so far. Raylee weighs 13 lbs 8 oz and is 24 inches long. Her and her Gram are getting along well during the days and now that she is off her oxygen (during the day) that gives Grandma one less thing to worry about gettting around with. She looks even more like her daddy without her oxygen on, still acting like her mom though (thank goodness!) Parenthood is the hardest job I have ever had but the most rewarding! We are so blessed.

Happy Valentines Day to all!

Klye, Jane, and Raylee Kay

New pics!

Just wanted to share some new pictures!! Raylee Kay just loves bath time!

Happy Holidays

Our first Christmas with Raylee was wonderful and we can't wait to start the new year! I realize for some this update has been a long time coming. These days, I have a lot of things to keep up on and continue to be quite busy! Raylee is now six months and growing fast. Today she weighed 12lbs 4oz as she continues to amaze us! Raylee teaches us things everyday.....patience being one of the biggest lessons so far :)! We will travel to Denver in January to visit Raylees specialists and we pray for positive outcomes.

I have been feeling well and at my last check up my proteins continue to come down so I hope to get a clean bill of health at my appt. in January.

Thank all of you for your continued support, love and prayers. We wish all of you a Happy New Year!

Love,

Kyle, Jane, Raylee Kay

Things have been a little busier since Raylee got home. She has grown so much in the month that she has been home. We were back in Denver last week at a few check up appointments and she is doing great her last weight was 10 lbs 9 oz.. Although we are a little sleep deprived, every morning we wake up we are so thankful to have her home with us. Raylee is really starting to smile and it just melts my heart! She wasn't sure what to think of her bath when we first got home and now she cries when I take her out. Each day is busy with activity as we are all learning new things together. It is a little different then I has imagined, but I am loving it! We will check in next week I will try not to make it two.
Jane, Kyle, & Raylee

We have been home a week now and we are still trying to get a routine going. Any suggestions? Raylee would rather sleep during the day and stay up and visit through the night. So I haven't had a lot of "Blog" time. We are still waiting for Raylee's g-tube to heal so we can begin taking our baths. Raylee loves baths. We will be heading to Denver next week for follow up appt for Raylee's heart, g-tube, and eyes. We pray all of these appts go well.

We'll keep you updated as often as possible!

Love to all,

Raylee, Jane, Kyle

Guess Who's Home

Raylee at home With Daddy

Morning of discharge

G-tube

We are all home together as a family, finally! Sorry its been so long it has been very hectic getting ready for Raylees homecoming. We spent last week preparing our home for Raylee and made the trip to Denver on Friday during the storm and eleven hours later by way of Nebraska we made it! Raylee is now at 8 pounds 12 ounces and still on the shorter side at about 19 inches but growing every day. As for Kyle and I we have been home for about 24 hours and haven't slept a wink. I plan on taking a few weeks off from work to get settled in with Raylee and then after Dec. 1 Grandma Farmer will be taking off the rest of the school year to help us with Raylee. We are so blessed to have our family's! I will try to update in a few days to let all of you know how we have settled in.

Enjoy the pics, Love to all, Thanks for all of your thoughts and prayers,

Jane, Kyle, and Raylee Kay

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

We are getting closer!!!
Raylee is continuing to grow she is 6lbs 14 oz.. We are still working on the feedings. It is her last hurdle and it is a big one. She is gettting a blottle once or twice a shift depending on how awake she is. Sometimes she will take over half and other times she just gets her mouth wet. This is very frustrating because the closer we get to the end the more we are ready to take her home. I wish I could just tell her that if she we eat her bottles we could all go home together. We know it will come eventually and all we have is time so we won't rush her she has already done so wonderful on her own she will get this too. Thinking of all of you as we start a new season!!
Kyle & Jane

Sorry it has been so long. I have kinda been lazy this week! Raylee is doing well, she has been turned down a little more on her vapotherm but she is not sure if she is ready for that yet. She is working a little harder to breath so we will see if they leave her or turn her back up a little. she now weighs 6 lbs 10 ozs she is getting so big! We are still working on the feedings. She is getting a bottle once every 12 hours. She will take a full one and then only like 28-35 ccs the next time or two. Overall she is progressing well and we are so proud of her. We are hoping to have her home by halloween. No promises but that is our goal!!! Hope all is well with everyone!

Kyle & Jane

I can't believe it is already time to go home it seems like we just got here. This is going to be hard the next few weeks I hate leaving her.

Raylee wasn't sure what to think of the bottle the first time, but last night she took her first full bottle! It was so cute! She is now 6 lbs 2 oz. I love to just stare at her she is getting so big. She is starting to grow out of some of her preemie clothes.

Raylee has been opening her eyes more and the eye doctors said that everything looks good and they will be back next week to check her again. They will check her every week until the ROP is completely gone then she will only have an exam every two weeks or so until we go home!! They have turned Raylee down again on her vapotherm she is now at 2 1/2 liters. When she gets down to 1-1 1/2 liters they will switch her to low flow cannula which is what she could possibly go home on. She still has some hurdles to overcome before we can think about taking her home but she is doing amazing. We are the luckiest parents!

We made it back to Denver today. Its amazing how much she has grown in 4 days! We introduced her to a bottle today and she didn't want much to do with it. She weighs 5lbs 13oz and is up to 48cc's and tolerating it well. Hopefully in the next couple weeks we can get her to take it by bottle. The eye doctor should be in tomorrow for a check up and I am excited to see what they have to say because she still isn't opening them much since her surgery.

Thank you for all the support.