Tonight was a big night Raylee weighs 5 lbs. She is getting so big! They turned her pressure down a little on her vapotherm today and she is handling it well. They are talking like we will be going up to the graduate NICU at the end of the week.

We are so blessed! Love to all.

We tried to do another video since there really hasn't been many changes to report, but Raylee wasn't really having any of it. I went ahead and shared it with everyone anyways. I will try for some more photos tomorrow. Hope all is well.

Love,

Kyle & Jane

Raylee is now 4 lbs 10 oz. She is getting big! Her preemie clothes fit her pretty good now. She is looking so cute in them! She has been turned down a little bit on her vapotherm. She is taking it slow, but she is doing good. She is still maintaining her temperature and is digesting all of her food. She is still on the third floor. They say that they want her to be closer to 3 liters to move and she is at 4 1/2 so it might be coming soon. We will keep you all posted....

There hasn't been many changes in the last few days. Raylee is still on Vapotherm and doing ok. They haven't been able to turn her down on it but that is ok it will come in time. She received some blood today because her level was low and she had been requiring a little more oxygen in the last few days. She looks like a little tomato when she gets the blood but it is a good look compared to her pale little self.
When Kyle got back yesterday he was surprised to see how much she had changed in 5 days. She is so much more alert without her CPAP mask on. It is hard to leave her after her cares when she is still awake and looking around, so I am usually standing there for a while until she closes her little eyes. She is growing everyday and her nurses are still mentioning the graduate nursery. They are talking like we might be going up in the next week. I guess that is a step closer to home and we are ready for that so we will see what the next week has in store for us.

Kyle & Jane

Vapotherm

Raylee was able to get her CPAP off yesterday and she is now on vapotherm!! She is loving it so far. She is really looking around now. It is so cute! She is now up to 4lbs 2 oz.. She is changing so fast. I can't wait for her dad to get back tomorrow and see how much she has changed since Monday when he saw her last. She is still tolerating her feedings well and every time I change her diaper it takes at least two, we are working on that! They have talked about moving her up to the graduate NICU. Up there you can spend more time with them so that is exciting but we are not ready to leave the wonderful nurses that we have grown to love. They assure us that it won't take long to adjust, but I am not sure about that. She still has a long way to go before we are all home, but everyday she amazes us with her progress. Thank you for all of your thoughts and prayers.

Love,

Jane & Kyle

My second bath!!!

Raylee got a little break from CPAP and her lip has duoderm on it to protect it from the tape.

Today was Raylee'e second bath! It was not her favorite thing of the day, but she smells much better. Kaele gave her a little break on her CPAP and she loves having that off her head. Hopefully in the next few weeks she will be able to go to vapotherm which should be a lot less irritating. She is still in her big girl crib and maintaining her temperature. They have upped her feedings to 35 cc's and we are able to hold her twice a day now!! We have been dressing her the last few days and she sure looks cute! She is even starting to fill out the preemie sleepers! She has reached 4 lbs and is starting to get a little chubby and we love it!!!

Till Saturday..........

Love,

Kyle & Jane

It has been a big day! Both of Raylee's Grandmas got to hold her today!!! They were both smiling ear to ear. Raylee was moved into a big girl crib today also. As long as she can keep her temperature maintained she gets to stay in it, but if she doesn't she has to go back in her isolate.

Raylee's dad went home by him self to do some work around our house for when she comes home, and he is already missing her. I am pretty sure she already has him wrapped around her finger. It is so cute!

We think of all of you often. We are so thankful for your support. Your friendship has made all the difference in this journey.

Love to all,

Jane & Kyle

Not many changes is the last two days. Raylee is now 3lbs 110z. She is doing everything she is suppose to. She is on full feedings, breathing on her own(with cpap), digesting her food and maintaining her body temperature. Its making her very tired so she has been sleeping a lot. Grandpa and Grandma Materi were her for a couple of days and they couldn't believe how big she is. Grandma Farmer will be here on Monday and we will see what she thinks.
More soon.....

Today was a big day, Raylee had her first bath. She tolerated it pretty good. They just put a bunch of blankets in a little tub and you leave her swaddled and take out one extremity at a time soap it up and rinse. We put her in a little outfit after her bath just so she could get the whole bath and get dressed concept!

Yesterday she was moved out of her isolation room to a shared room. We now have three other babies in with us and they are all smaller than Raylee. It is a little weird to see the 1 lbs 6 oz babies and think that we were there 7 weeks ago.

They took Raylees central IV out today and she is now line free except for her little feeding tube down her throat. We are hoping it stays that way. All and all she has had a good couple of days she is up in her oxygen tonight but she has had a pretty big day so that's ok. She is also on the lower end of where they want her glucose to be so they're watching that. They took her off continuous feeds and put her back on full feeds over 2 hours and then a 1 hour break. We will see how that goes, she might have to go back on continuous to regulate the glucose.

Today has been a good day! Raylee is still on CPAP and doing well. They are starting to wean her off of her pain meds that she has been on for 4 1/2 weeks, so they have to take it slow. When that's done they will be able to take her central line out. I was able to hold her again today and we are still doing the kangaroo holds (which is skin to skin I forgot to tell everyone that and they are wondering why Kyle has his shirt off in the picture....oops!). I can't wait until I can hold her in my arms and just stare at her. We tried to take some comparison pictures to show everyone how much she is growing. She is 3 lbs 8 oz and 15 3/4 inches long. Hope you enjoy!!!

Love,

Kyle & Jane

We were able to hold our little one for the second time today!! She is sooo precious. She has been on CPAP for over 24 hours today. This means she no longer has a tube down her throat for the first time in her little life. CPAP is a little mask that goes over her nose and keeps her lungs open and she does the breathing. She was really fighting her tube yesterday so they decided to give it a try and so far so good. As you can see above it is not the prettiest contraption but she is liking a lot better then the tube, so that is wonderful.

The hospital staff here is phenomenal. We are so lucky to be here and have this care for Raylee.

We are so grateful to you all! Thanks for praying for our little miracle!

Well yesterday was our 4 year anniversary and I was handed the best gift ever, our daughter!!! I was able to hold Raylee for the first time yesterday and it was spectacular!! I held her for 2 1/2 hours. While we were gone yesterday she had a bad spell with her oxygen and they decided to try her on the conventional vent, and she is doing great!! This is a wonderful thing because on the other vents we were unable to hold her. Since she is doing good on it Kyle was able to hold her for 1 1/2 hours today. It is a wonderful feeling being able to hold her after so long. Yesterday was also her first sponge bath. Kaele (one of her wonderful nurses!) said she did great except for when she went under the armpits. Raylee wasn't a fan of that...who really is?

Some not so good news is that Raylees glucose is low and they are not really sure why, so they are still looking into that. It seems like you always have some bad news with the good.

We miss all of you..Keep praying for our little girl!!!

Well Kyle and I made a huge decision and decided to come home for a day and try it out. It has been very nice so far ( and being able to call the nurses repeatedly while we are here!) It also has given us time to think of all the support we have received. We are overwhelmed with everything that our friends and family have done for us. Also the support of people that don't know us! It continues to make us ask ourselves " How will we ever express the gratitude we have, so people know how truly thankful we are?" Any ideas??
Raylee is having some new meds. They are going to give her 4 doses of steroids to help her lungs so that hopefully she can move to the conventional ventilator ( which means possibly holding her!!) and get her over this hump she has been stuck on. They gave her her first dose at 2 so hopefully we will know if they are helping by tomorrow. Watch for results!
Love,
Kyle & Jane

We have met a new milestone Raylee is now 3 lbs 1 oz and 15 inches!!! She is still tolerating her feedings well. They bumped her to 24 cc's today. They are taking her off her sedation drip, so that is exciting..( I think?) She is still on the Oscillating Ventilator which moves her body a lot so I would think the sedation would help with irritation from that, but it turns out I am not a doctor! They have talked about giving her an eye exam this week just to see if there is any damage from being premature or from being on the vent for so long.

Our little girl amazes us everyday. She is such a little fighter. We still have not held her so that is hard but I am sure that day is coming soon....I can't wait!

The diaper pictures are a request from my cousin to see the size of her new one it is still hard to tell though. The sizes are preemie XS and preemie S. Some day we will graduate to newborn!!

There hasn't been many changes in the last two days. They have bumped her up to 22 cc's on her feedings. She was 2 lbs 15 oz last night so maybe when we go in tonight she will be 3 lbs!! No new pics sorry if I get some tomorrow I will get them posted. They say stable is good so no news is good news. Your prayers must be working! More soon.....