Feisty Kaelyn

Kaelyn's Song

2012-01-24T19:01:00.000-08:00

Like I said in the last post, Kaelyn really is the driving force behind adopting Victoria. In so many ways. A couple weeks ago when I was really feeling like it was time, I found Victoria's song. Then a few songs later on our playlist I found Kaelyn's song. We are sure to listen to it every morning and dance around. I truly believe that bringing Victoria home to be a part of our family is part of her little sisters, "Great big plans".

Kaelyn continues to amaze us every day with those plans of hers. She has brought more love, people and life into our home and family than we would have ever had without her.

Mindy Gledhill - Whole Wide World

(If you can't tell Mindy Gledhill is a favorite around our house :)

Miracles in the Making

2012-01-22T21:15:00.000-08:00

Wow, January has been quite the month for our little family. Something is in the works here at the Bonner home, something BIG. I don't really know where to begin, I guess I'll just start where it all began, 2 1/2 years ago.

Kaelyn's birth/life has changed hearts, two of the biggest changes happened in the hearts of her mommy and daddy. When we first found out about Kaelyn's situation we were scared, we didn't feel like we were equipped to raise a child with special needs. Neither Wayne nor I had very much experience at all with anyone with any kind of special need. After 2 1/2 years with our little miracle, we feel very different about our abilities as parents. She has shown us the way all along, and taught us that we can do anything with faith in and the help of our Savior Jesus Christ.

Not long after bringing Kaelyn home from the NICU we learned about Reeces Rainbow, a non-profit organization that advocates and helps raise funds for children with Down syndrome and other special needs in parts of the world that are living in orphanages and eventually sent to mental institutions where they sit in cribs/beds all day, with very little interaction with other people. A blog friend of ours was working to adopt a little girl from Russia. From the very beginning I knew in my heart that we would bring one of those dear children home to be a part of our family. I just had faith that I would know when the time was right.

Just after Christmas I saw this special on the ABC World News tonight with Diane Sawyer. I highly recommend you watch the beautiful videos. The minute I watched these videos, my heart started to tell me something, something I didn't think I was ready to hear. Over the next week I would wake up each day wondering if I would feel the same way, if it was really time to find our other little girl. Each day it was re-affirmed through promptings of the Spirit, that yes it is time. Every question I could come up with, every reason that "logically" it doesn't quite make sense was answered with a way it would work out, or why it was right.

I was afraid to talk to Wayne about it, what if said no, what if he didn't agree? Yes, at first he was a little shocked that when I mentioned it to him a few days earlier, that I meant right now, not sometime in the distant future. But he listened, and he opened his heart, and not long after he was on board.

So yes there is a lot more to this story, and there is time to tell, but the short of it is, we are adopting a little girl from Eastern Europe with Down syndrome. We need to be really careful about how much information we put on the blog about her, so until we figure all that out we will be as discrete as possible.

Meet VICTORIA

(That is the name she was listed as on Reece's Rainbow, we don't know her real name)

We would like to invite you to follow along on this exciting journey at her blog, rescuingvictoria.blogspot.com

We will undoubtably need the prayers and encouragement of you, our friends, to help this all happen. It is not an easy task, but we feel we are up to it. We truly believe she is our little girl, meant to be a part of our family forever, and we are going to do everything in our power to get her here.

Happy New Year!

2012-01-04T15:48:00.000-08:00

We had a wonderful Christmas! Its crazy to think that it was Kaelyn's 3rd Christmas. We were able to spend Christmas Eve with Wayn'e Family. Then we went home and the girls gave us the BEST Christmas present, they both slept till about 8:30. We had breakfast all cooked and ready for us in the Crockpot, thanks to Pintrest. We opened our gifts, went to church and then went back to Wayne's parents house and had a nice dinner and got to skyp with his younger brother that is a missionary in Guatemala. Around 6:00 we got in the car and drove 2 1/2 hours to my parents house to spend a couple days. Bryn did great on her first road trip. She slept the whole way both there and back. It was a good thing because like most kids she is not a big fan being strapped down in the car seat. The holiday's went by too quickly and now Kaelyn and I have spent the last week with an unfriendly head cold. She is toughing it out much better than I. She is still very active and happy, just needs to keep the oxygen on 24/7 till it passes. It is truly a blessing that she has been able to fight this off at home and that we don't have to hit the hospital up for their high flow oxygen. Being sick is bad enough, but its much better when you get to stay at home, take lots of baths and wear your jammies and comfy sweats all day.

Kaelyn zonked out during our Christmas eve "Dunch" (It comes between lunch and dinner) We tried so hard to keep her awake until we got our check and to the car, but she just could't fight it anymore. Luckily she was strapped in pretty good. Don't worry, we didn't leave her in there long, just long enough to get a picture :)

Kaelyn and Daddy playing with their toys on Christmas morning.

Bryn has got the fist bump down...

See!

Kaelyn's never been much for watching tv or anything, but last night I put signing time on the Ipad and she stood there and watched for like 20 minutes. What a great way to sneak in some PT.

"Hey mom they are signing milk, I know that one! Speaking of, will you go get me some?"

Bryn throwing out what of her signature smiles. She love attention and will reward it with lots lots of smiles and cute little noises and shrieks.

Bryn wearing the little outfit I bought for my Brother's baby. I was certain it was going to be a girl, but I was wrong they had a little boy...so Bryn says "Thanks Quinn, this outfit definitely looks better on me than it would on you :)"

Kaelyn and I gave ourselves manicures, but she was being shy about showing it off.

Bryn testing out the Bumbo yesterday. She seems to like it. She can see whats going on much better from up there. We learned that its not the best place to hang out just after she eats though.

And speaking of eating positions, Kaelyn sure has some dandies.

Kaelyn is sure loving all the loot she got this Christmas. She is also learning one of the benefits of a little baby sister is double the fun toys and books. I just spread them all across the room and she just moves from one to the other. If it makes noise, its worthy of her time.

Her main mode of transportation these days is a sweet "surfer crawl". She has been making so much progress in the last few months. We are just in awe as we watch her explore her world and learn all sorts of new tricks.

She sure loves this dinosaur toy of Bryn's. She puts the balls in and watches them bounce around, and then hunts them down when they escape.

"Just warming it up for you sis, till your big enough to enjoy it too"

Playing the fancy new piano grandma gave her. Definitely one of her favorites.

And last but not list, a video of our mom and me dance party tonight. This particular move is the "Dizzy-mater". Its by far her favorite. (Warning: watching this may make you a little queasy, had to tape it myself)

Happening as of Late

2011-12-19T19:20:00.000-08:00

We have been doing a lot of hanging out at home these days. It's too cold to go out and we are trying to keep the girls healthy. We have been really blessing in that department lately and we couldn't be happier.

Kaelyn finally decided that holding her own bottle wasn't too bad, and she is doing great at feeding herself.

It has cut feeding time in half for mom, which is quite helpful.

I just couldn't help buying these little kicks for the girls. I have the same ones in blue.

Playing in the laundry basket. Kaelyn thought it was pretty fun being trapped in there.

Back in October Kaelyn and Wayne borrowed our friend's bike trailer and went for a ride. We'll have to get one of these some day, she had a blast. Anything to get out of the house.

MERRY CHRISTMAS TO ALL

"Dad, I can't sit up quite yet"

The girls all decked out in the Christmas skirts Grandma Amy made for them.

Bryn's Blessing

2011-12-19T18:46:00.000-08:00

Sunday December 4th Bryn was given a name and a blessing by her dad. She looked so cute in her white dress. It was fun to see all our family that were able to come and be with us on her special day. The white blanket she is laying on is one that my brother and his wife brought her from Bethlehem, the city where baby Jesus was born.

She is such a sweet little baby. I can't believe she is almost 3 months old. We are so happy to have her join our family!

Life as we know it

2011-11-29T16:11:00.000-08:00

For Kaelyn's Christmas present this year I finally got around to putting the first two years of her blog into books. I've been wanting to do this for a long time, but never took the time to get it done. Well it's done and the books are on their way. I just think it will be fun to have our story sitting on the shelf where we can read it together as a family. I'm not a scrap-booker, so this will have to do. So seeing that our posts are dwindling less and less each year, I have a new resolution to do at least one post a month, so that we will have something to put in our books at the end of the year.

Things are going really well as we are now a family of four. Those first few weeks were a little rough for Kaelyn. I didn't think she would really notice that we had a new addition to the family, but boy was I wrong. She was not happy about the loss of attention she was experiencing. As much as we tried to give her attention and loves and time, it just wasn't cutting it. It was like a flip was switched and our sweet little girl, that rarely had reason to cry, was just sad. She was really whiney and picked up a few habits from her little sister. She realized that when you cry, you get what you want. Whenever Bryn would cry, Kaelyn would join right in, and at times I couldn't help but cry too. She also started grinding her teeth way bad and hitting herself pretty dang hard with toys, so it would hurt, and she could cry. (Really sad I know)

It was then that I realized that we really did spoil her, not like we had an option...what else could we have done with our time and attention :) I also realized that Kaelyn really didn't cry for like that first year of her life. She never had a reason. We were so worried about getting her weight up for heart surgery that we never let her get hungry and she was just so easy going and chill, she just didn't cry. We knew that crying would burn more calories than anything, so we did everything we could to keep her content. I'm learning that there are times when one of my girls (or both) with have to cry, cause I am only one person and can't do it all and the same time. Last night I did manage to feed Kaelyn her bottle while holding Bryn and keeping the pacifier in her mouth so she would stop crying. Not an easy task, but I wished I had another hand to take a picture of it to show Wayne when he got home.

Well 2 months later we are all doing great and are much more adjusted, even Kaelyn. She is acting more like her happy self, which makes us all happy. She still isn't quite sure about little sister, but she gives her goodnight kisses every night, something that she won't even give Wayne and I anymore :( . She is very patient when Bryn cries now, which is such a good big sister.

Bryn is being such a good little sister. She is starting to have more awake time and gives us lots of big smiles and sounds. She is growing like a champ, at her 2 month appt. today she weighed in at a whopping 9 1/2 pounds. She was however EXTREMELY upset when they gave her the immunizations. I seriously have never heard a baby cry like she did, wow. I'm a little nervous that she has discovered she can reach such a high decible, I hope she doesn't pull it out too often.

See those cheeks, she wasn't born with those.

Smile for the camera little sis

Can I help you?

All decked out for her daddy-daughter date to the first Utah Basketball game

She was a hula girl for Halloween

Fake Smile

Real smile. Its kinda weird, Kaelyn gets "gold eye" instead of red eye in her pictures.

Hmm, wonder what that means?

Working on standing with Sally her EI lady.

We started the holiday season out with a band at the Rasmussen Christmas party. Here's Grandma Ruth with a bunch of her great-grandkids and a few grandkids and aunt Sherri.

This years line up of Great-grandbabies. Baby Cousin Quin was just a few days late for the picture.

Bryn and her cousin Evalyn with Santa. Evalyn was born on Bryn's due date.

Kaelyn on Santa's lap, I wonder what she said she wants for Christmas?

Bryn, Grandma Ruth and cousin Ava. Ava wanted Bryn to hold her finger,

something she is really good at :)

Bryn's First Photoshoot

2011-10-17T16:47:00.000-07:00

My Aunt Becky came over this morning and we did a little photo shoot of the girls. Kaelyn's appointment didn't last too long, due to a much needed nap and a little bit of a bad attitude. See below...

To be quite honest Bryn wasn't too thrilled about the whole thing either, but luckily we were able to get a few cute ones.

Don't worry, that is not real wood. They are these cool mats my Aunt has.

She was NOT letting us take that binky away, but I think its still cute.

Original

Edited Antique Style

Edited Fade Color Style

I used iphoto to edit the pictures. It was pretty easy, thank you Steve Jobs for making the Bonner's life a little bit easier :)

Home at Last

2011-09-29T12:10:00.000-07:00

We all finally made it home from the hospital yesterday afternoon, and boy is it nice. Bryn had to stay in the nursery the whole time we were there while they got her low blood sugar under control. She was also in the isolette for temperature regulation and under the lights for a little bit of jaundice. Like her sister she got through all that in no time by being feisty when she needed to. She is quite the little squeaker, making all sorts of squeaking noises throughout the night.

Our nurse let us sneak Bryn out of the nursery to my room so she could meet her big sister. Kaelyn's still not quite sure what to think about all this :)

Daddy and his girls.

First family picture. Nice, I'm the only one looking at the camera.

Awake and ready to play...I mean eat.

Jeana's Baby picture

What do you think? Does she look like her mom?

"This place is way nicer than the hospital"

Her coming home outfit, the Utah Beanie is a tradition.

Kaelyn has been so spoiled this week. She has got to spend every morning with Daddy all to herself and a few days with Grandma Amy. Yesterday Grandma even got her all dolled up and took some glamour shots.

Little Sister Has Arrived

2011-09-24T10:58:00.000-07:00

Bryn Lois Bonner was born yesterday at 8:07 a.m. via scheduled C-section. Its a good thing because the little lady was breech, so even if I hadn't had a classical c-section with Kaelyn, and required a c-section from here on out, it is quite likely we would have needed to do one with her anyway. So once again all works out just the way it was suppose to :)

She came out at 5 lbs 14 oz, 19 inches long. My guess was that she would be 5 lbs 11 oz, 19 inches long and Wayne guessed 5 lbs 4 0z, 17 inches long...so I won on both accounts :)

Proud father of two!

I got to be the first one to hold her.

Kaelyn all decked out in her big sister outfit.

Look at all that hair. That really was a surprise. I kept picturing her with dark hair, but didn't think it would be possible.

Its like my little baby girl grew up overnight! Look how old she looks.

What a proud big sister!

This one's for you Dad

2011-09-20T22:12:00.000-07:00

My dad, Kaelyn's Poppa Paul, keeps asking when we are going to do another post on Kaelyn's blog, so here you go dad. Only 3 more days till Kaelyn is officially a BIG sister. In order for this to happen we had to make her a new bedroom so she could pass the nursery down to her little sister. I LOVE how it turned out, its exactly what I wanted. Thanks to a great husband that's willing to take on the projects I was shoveling out to him, we got it done. He did a great job with the bead board and painting of the walls. I did the interior decorating and painting of the bead board. We got all her furniture at Ikea, bedding at Pottery Barn and accessories at Hobby Lobby and Target. I now ban myself from all of those stores ;)

My Aunt has a vinyl lettering machine and let me go to town on it. Thanks Becky! (I've always wanted to put this saying up in Kaelyn's room because of this talk by President Monson. I read it for the first time the week we were waiting to find out if Kaelyn had Down syndrome. Whenever Kaelyn is sick or in the hospital I just sing that song over in my head to remind myself that she is being watched over.

The old radio looking thing on the bookshelf is her snazzy humidifier.

Taking a nap in her new big girl bed. She loves the extra real estate to roll around on. We lay her at the top of the bed and by morning she is down at the bottom. Thats why its facing against the wall, otherwise she would roll out every night.

The nursery is all ready for Bryn to move in!

On Sunday Kaelyn looked so cute I wanted to get some pictures of her, but she had a different plan. I spent an hour trying to upload the video of what she was doing, but its not working :(

32 1/2 Weeks

2011-08-26T13:37:00.000-07:00

I posted this the other day on my personal blog, and Wayne thought I should put it on Kaelyn's blog too, so here you go. Its a long one :)

Today I am 32 1/2 weeks pregnant. I couldn't tell you how many times I've said that number in the last 2 years. Many times at doctors appointments, many times to friends, family and people we meet. This is the day of my last pregnancy when little Kaelyn joined our family. As I've been getting closer and closer to this day, I've reflected a lot on that day just over 2 years ago, June 13th, 2009. The night before my best friend Jamie and her husband were staying at our house. We had dinner and for dessert we dipped about everything we could think of in melted chocolate. Then we played a crazy ping pong game where you would hit the ball and then run to the other side of the table to hit the next shot. It was fun and quite wild.

On Saturday morning I woke up with an excruciating pain in my abdomen. It really was one of the most painful things I've ever experienced. I figured it was from all the chocolate dipped junk I had eaten the night before. So I got up and took a bath hoping that would ease the pain. It didn't, it just got worse and worse. Wayne wanted to go to the hospital, but I fought him on it. I didn't want to go to the hospital for a stomachache. So we called Grandma Ruth, she is the family nurse and I knew that she would know what to do. She told us to go straight to the hospital, so we did. We also called my cousin Kristen, the other family nurse, who told us she would meet us at the hospital. Wayne got us there in record time as I just kept repeating over and over, "It hurts so bad." I literally felt like there was poison running through my body.

When we got to the hospital we went up to labor and delivery, they have a little emergency triage. We told them everything that had been going on and they ran a few tests. They could tell I was in a lot of pain, so they tried giving me a GI cocktail, a bunch of medicine that would quickly alleviate heart burn, if that was what it was. I knew it wasn't heart burn because a few days prior I had my first and only bout with it, and this was nothing like that. The cocktail did nothing so they gave me a dose of morphine and that made it bearable. They checked my blood pressure and took some labs and discovered that I had pre-eclampsia and that it had moved onto it's more serious form, HELLP. From what I understand my organs were beginning to shut down. It wasn't until after Kaelyn was born, that we realized how sick I really was, and that it was pretty serious. They did an ultrasound of Kaelyn and she was not doing well. Before then we had been getting weekly ultrasounds and they score they them based on a few different things. Even though she was not growing well, she would always pass the tests they did. This time she didn't pass. She was barely moving.

So within about an hour we had talked to a few doctors, one being the Attending over the NICU. He was very re-assuring and told us that nothing told him that our little girl couldn't survive and that they were going to do everything they could to keep her alive. The only way to treat HELLP is is deliver the baby, so they set up for an emergency c-section. I still remember laying in the bed after my second dose of morphine and just feeling almost like I was having an out of body experience. I went from feeling so much pain, not to mention the emotional pain we had been going through the prior 12 1/2 weeks wondering if our little girl would live to be born. It literally felt like I was floating, and I just felt at peace.

After they took me back to the OR, and gave me a spinal tap, Kaelyn was born within about 6 minutes. We didn't even realize she was out and passed through the window to the NICU until she was gone. They did tell us that she was breathing on her own, and just requiring some oxygen. Our little girl came into this world at 1 lb 11 oz. She fought for 32 1/2 weeks to survive in an environment that just wasn't giving her the nutrition she needed to thrive. I am so proud of her for sticking in through that, and am so blessed to be her mother.

At our appointment on the Thursday before Kaelyn was born we had decided with our doctor that we would come back in on Monday and deliver her via c-section then. She just wasn't growing and had reached the point where she would do better on the outside than in utero. The way Wayne and I look at it is, if I hadn't gotten sick, she wouldn't have made it through the weekend. She needed to be delivered then. Heavenly Father took matters into his own hands and orchestrated everything so she would live. Throughout my whole pregnancy I had been quite healthy, and had never shown any signs of pre-eclampsia or high blood pressure. It literally came on over night.

Since Kaelyn was so small, they had to do a classical c-section, where they cut the uterus up and down, rather than horizontal, like they usually do. So with this pregnancy and all following pregnancies I will have to have scheduled c-sections at around 36 weeks, because they don't want you to labor at all when you've had a classical c-section. I knew that, but I never really knew why until my appointment yesterday. My doctor explained that if I was to labor I am at risk for the scar could rupture and I could bleed internally, or the baby could come out through it and the placenta would be compromised, so it would put both me and the babies life at risk. I'm not going to lie, missing out on the final month of pregnancy doesn't sound too bad, but now that I know why I'm even more grateful for it.

So here I am at 32 1/2 weeks, with 4 weeks to go! I can't believe we are coming to the end of this pregnancy and getting ready for the arrival of our second little girl! With how low key its been this time around, it really has gone by fast for me. I've felt great throughout the whole thing. Let me tell you this nesting business has kicked in on over-drive this time around. I didn't really get to that point when I was pregnant with Kaelyn. We didn't even know if we would be able to bring her home, so I didn't feel like I needed to get anything ready. Well this time I've had Wayne painting our other bedroom my favorite color and his next project is to put up bead board and put together Kaelyn's new bedroom set, so we can move her in there and then re-distribute the baby clothes into the nursery. I've also decided to organize and purge the basement and get new carpet throughout the whole house. So yea, we have quite a bit to get done in the next 4 weeks, but I figure I've got to use this ambition while I've got it ;)

Summer Time Fun

2011-08-09T09:11:00.001-07:00

We have really been trying to live it up this Summer and enjoy being outside. Kaelyn's had a few respiratory viruses that have set her back and kept us indoors, but once she is feeling better we are out going to the pool, going for walks, riding on parade floats, family reunions, BBQ's with friends, family hikes and of course boating with Grandpa. Kaelyn loves the water and her favorite part on the boat is when we are taking off and going really fast. She just loves having the wind blow her hair all over the place. She is really working on her flexibility skills too. As I type she is laying on her tummy in the chinese splits. That is her preferred way to get out of sitting. Whatever works I guess :)

Working on her flexibility, it pretty much comes natural :)

Yep, its that time of year! Couldn't resist buying the girls matching cheerleader outfits for all the volleyball and basketball games we will be attending this year.

Working on cheerleading stunts with dad.

This one's perfected, now they are working on the "one legger".

Our family hike to Donut Falls.

During the hike I told Wayne we would need to see if they make Double Backpacks to put both girls in after the baby gets here, I could barely do the easy hike holding nothing. I guess it may be a bit easier when I'm not 7 months pregnant, but I'm still looking for a double back pack :)

Playing on the Ipad.

Does anyone know of great apps for Kaelyn on the Ipad? If so please share.

Reading stories with daddy.

Still working on eating, she likes to wear it more than eat it at this point :)

She's getting really good at Peek-a-boo. She's quite animated when she returns.

Riding on Grandma LaJean's float, she's the little one on the back riding her pink pony.

News Flash

2011-06-29T13:53:00.001-07:00

For those of our blog friends that haven't heard...Kaelyn is soon to be a BIG SISTER!! (We haven't been able to find a "big sister" shirt in 6-9 months though...go figure) We will be having another little girl around the end of September, beginning of October! We are all super excited to add to our little family!

In other news, Kaelyn's hair finally fits into a pony tail! Very monumental :)

Just in time...

2011-06-14T12:35:00.000-07:00

We made it HOME to celebrate Kaelyn's second birthday! They discharged her around noon yesterday and she has been one very happy little girl! And we have been two very happy parents. Those last couple days were really hard because she was doing so well, and we had to keep insisting that they send us home. We understand that they want to be cautious, but we understand that we are her parents and know when our girl is well and what we can handle at home. She is doing great and loving life. She got to come home and take a bath in the BIG tub and splash around all she wanted, she got to wear a new birthday outfit and jump in her beloved jumper, which she smiled the entire time. She even got to ride her new pink rocking pony and blow out the candles on her birthday ice cream. Okay, so dad had to help her with that before she grabbed the open flame. It was a great day and we are oh so happy to be home and healthy! Bring on SUMMER!

Kaelyn and Grandma LaJean. Grandma and Grandpa gave her the pink guitar in the back ground. It is signed by the one and only George Strait! It was auctioned off to support Primary Children's Hospital. Kaelyn is one lucky girl!

Her other Grandma and Grandpa gave her this little rocking pony (Cotton Candy-Named by Jeana).

This was definitely a "Pink Cowgirl" birthday for her.

"Cotton Candy" is very cuddly, just like Kaelyn. They make a great pair.

She'll have to grow into the hat :)

Pony Ride Footage

Got the boot

2011-06-08T20:54:00.000-07:00

Well we finally got kicked out of the ICU, thank goodness! Now she is on the infant unit, and sadly has a roommate. Not sure how that's going to go, haven't had to bunk up on the floor before. Lets hope that it's the extra motivation she needs to speed up this recovery and get home where she belongs. She is starting to act more and more like herself, which is good to see, it just breaks my heart to see her so miserable and sad. She was giving out kisses like they were going out of style today, something she hasn't done for weeks, since she got sick. I'm really praying that she is home for her birthday on Monday, the hospital is no place to celebrate such a special day ;)

Giving kisses to Mr. Froggy. He's been sick and in the hospital too, so he and Kaelyn can really relate.

All clean after her sponge bath. We finally got to update her hair style,

she was sporting the same one from like 3 weeks ago.

Still hanging out

2011-06-04T21:02:00.000-07:00

Well after a day or two on the floor, they had to move Kaelyn to the ICU so that she could go on high flow oxygen. She kept getting a little worse each day, but has stayed about the same the last couple days, so we are just waiting for her little body to kick this dang virus out on the curb. It's pretty sad to see our happy little girl so miserable, and just not her playful self at all. Thanks for all the prayers and concern.

This is how I left her tonight, sleeping in the Chinese splits...that girl.

Big Time Bummer

2011-05-30T17:57:00.000-07:00

Well....just over a month since Kaelyn's last hospital stay and we had to bring her back to the hospital. Basically the same issues as last time.....respiratory virus. When she catches these viruses she gets pretty high fevers and it's obvious that she is really struggling to breathe. Not only that, but she immediately stops being her happy self and looks miserable. It breaks our hearts to have to see her this way, but at least we know she is in a good place with good supervision. We are really hoping that she can kick this virus in a jiffy. Please keep her in your prayers.

Hawaii Trip

2011-05-15T18:14:00.000-07:00

We have been spending the last couple weeks as a family in Hawaii. It was such a wonderful trip!! I have always wanted to visit and just soak in the beauty I have seen in pictures, and that is just what we did. Let me just say traveling with Kaelyn was so fun! She did amazing on the long flights, much better than both Wayne and I. She got us all sorts of perks including a free checked bag, a free seat on the ride home and an upgrade to a suite, people just couldn't resist her cuteness. She loved Hawaii, she woke up so happy every morning just excited to see what the day would bring. I think one of her favorite parts was that she didn't need her oxygen during the day thanks to the low altitude. Here are some pictures of our little one living it up on the islands.

Enjoying the sunset on our first night in Kauai

Can you guess what we are subjecting her to in this pic?

It's a 'warrior princess' tattoo. Temporary of course :) Doesn't she look tough?

She was quite the trooper on our 4 mile hike up the Napoli Coast.

She was loving the view from Dad's chest.

Chillin' on the beach at the half way point of our trek.

She slept the way back up the trail, good choice, it was quite the climb back up the mountain from the beach.

"Really mom? Those pancakes are bigger than me!"

Getting off the plane we quickly realized that the fleece jammies she was in were no good for Hawaii.

At first she wasn't too thrilled about being in the ocean water. She gets that from her mom.

Getting all geared up for swimming in the ocean.

"Hmm, not sure what I think about this idea"

"Okay, bring it on!"

"Never mind, I changed my mind"

"This isn't too bad"

"Okay, I guess its not too bad if mom gets in too"

2011-04-27T13:11:00.000-07:00

Sorry to leave some of you hanging, we came home last Tuesday and Kaelyn is continuing to get better. She is still on a little bit of oxygen, but coming along quite nicely. Just didn't want everyone thinking we were still stuck up in the hospital. :)

Hospital Stay #3

2011-04-17T10:55:00.000-07:00

Seeing that we haven't posted anything since February would just have to mean that "no news is good news", right? Well that was pretty accurate but now we have news, so we thought we would do a post. A couple weeks ago Wayne and I went down to Moab to play in a Coed volleyball tournament (which we won!) and we left Kaelyn overnight with Wayne's mom. It was the first time we had left her (other than in the hospital of course). Well wouldn't you know that little stinker took Grandma on a wild goose chase to the insta-care and then the ER at Primary Children's. When she woke up Saturday morning she had a fever and just wasn't acting like herself. When they got to the insta-care her oxygen sats were in the 70%, so they sent them to the ER at the children's hospital. After 2 hours and Wayne talking to the doctor they were able to come home on a liter of oxygen.

The next couple of days she seemed to be getting back to herself and was only needing about 1/4 liter of oxygen. Then the following Saturday she started getting worse and more fevers and requiring more oxygen. So Tuesday we took her back to her doctor and after looking over her he sent us back up to Primary's to most likely be admitted for respiratory distress. So after 8 HOURS!!! in the ER she was finally admitted to the ICU at 1:00 in the morning. She was needing about 5.5 liters of high flow oxygen and they started an antibiotic because of a shady lung x-ray that might have been pneumonia.

6 days later she is still in the hospital on the infant unit. They decided that she did not have pneumonia, just para-flu and friend of old RSV. Just some nasty virus that takes its toll on unsuspecting little children like Kaelyn with underlying health issues. She seems to be getting a little better each day, the main thing we are here for is the high-flow oxygen. She is down to 2.5 liters, so we are getting closer to bringing her home. Once she can get down below a liter on a regular oxygen cannula we can take her home. When we got here today she was very smiley and happy, and reminded me of my cute little happy girl! She showered us in kisses, which she can be pretty hard to get some days :) So good to see. Right now she is jumping around on her daddy's lap with a big smile. Even though being in the hospital is not so fun, we are pretty blessed that this is our first time back since her heart surgery.

Now for some pictures from the hospital and fun stuff we were doing before she got sick.

Chugging down on a bottle this afternoon with dad.

Just settling into her new digs on the infant unit. Much more cozy than the ICU.

Laying around in the tiny ER room.

This was on St.Patricks day, we were trying a new hair style...Kaelyn wasn't impressed.

Kaelyn's first ride on Grandma's LaJean's rocking horse. She was loving it!

She was such a well seasoned rider, she could ride and pull

her "fish face" at the same time.

February 17

2011-02-17T23:03:00.000-08:00

Most of the country celebrates ~~Valentines~~ “Heart” day on February 14, but here in our house Heart Day is February 17^th. One year ago today we took our little girl in to have open-heart surgery. How amazing it is to look back and see how far she has come. That little heart of hers worked so hard to sustain her before her surgery, and so far it continues to thrive. We are so grateful for the amazing doctors and surgeons that did their part in keeping our little miracle here with us. So today we celebrated her "Heart-iversery" by wearing red and playing with some of her buddies.

Pictures stolen from Kristen, love that she labeled it with everyones names.

A letter to someone

2011-01-18T22:27:00.000-08:00

I wrote the letter below for a challenge I'm doing on my personal blog, and thought I would put it over here, just in case a new mamma stops by for a visit.

Dear (mother who just found out the baby she is carrying/or delivered has Down syndrome),

You don't know me, but just under two years ago, I was where you are. After finding out that our first child was going to be a little girl, we were also informed that there were complications with her heart and size. After a few tests we also found out that she had Down syndrome. Like you, I was so scared, I just kept praying and hoping that it wasn't true, that she would be "okay". At the time that meant that she didn't have Down syndrome. I was so worried about what others would think, how she would be treated differently. It just broke my heart. Then I met some other families with children with Down syndrome, and saw the beauty in their lives and their children. Many of them told me that if they could change the fact that their child had Down syndrome, they wouldn't. At first I didn't quite buy it, but I wanted to. Then my little girl was born, and fought for her life, and I knew it wasn't an accident that she had Down syndrome. It wasn't a "complication", it is part of who she is and she. is. AMAZING! She really is so special, not a day goes by that I am not amazed at how lucky I am to be her mom. One thing that the geneticist said to us while she was in the hospital really stuck out to me. He said that 46 of her Chromosomes are from us, her parents, just like any other child. The 47th is just a little something extra. That helped me to realize that she was still my baby. She has my features as well as her dad's. As the days go by the more I realize the fact that she has Down syndrome really isn't a big deal. She is who she is, and like I said she is amazing. I look forward to having her by my side the rest of my life.

So even though its scary at first, just know one day you will look back and wonder how you could have ever felt like that. I really wish every family could have a child like Kaelyn in their family, she has been such a blessing. Instead of feeling like others may pity us, like I did at first, I feel a little sorry for them, that they aren't as lucky as we are :)

Love Kaelyns momma, Jeana.

If at First You Don't Succeed...

2011-01-13T18:09:00.000-08:00

Try, try again. And again. And again and again and again.

That's kind of how I've felt when it comes to Kaelyn's eating. It took her some time to figure out how to chow down on her bottle, but once she got it, she was unstoppable. Anything to get that dang feeding tube out of her nose, right? So for about 6 months we have been meeting with a feeding therapist to help her start eating food, food. i.e. baby food. And for six month's I haven't felt like we've gotten very far. Each time when went to feeding therapy, about every six weeks, I left a little more encouraged to recommit myself and nip this thing in the bud...but after a couple of days I was back to being discouraged. You see its a very delicate thing, we want eating to be a positive experience for her, so we don't want to push her to the point of tears (where she will go). Our feeding therapist is great, has wonderful tips and ideas, but most of all is encouraging and realistic with me. She helps me not feel like such a loser of a mom. She continues to remind me that Kaelyn is actually a good eater, after all she's been through and what she has to deal with. That she likes food, it will just take a little longer to figure the whole process out. Something that is easy to forget when I see a typical baby down a jar of baby food in a matter of minutes, when I would spend 20 minutes just to get a tablespoon of food into her mouth, and for that same tablespoon of food to come right back out.

So recently I've committed to do better at taking time each day to feed her "solids". At first it seemed to get worse. She would throw her head back and forth so I couldn't get near her mouth, and then when I did get near her lips, I would have use the ~~crowbar~~ spoon to pry those little things open. However this time around I didn't give up and take a few days off. I kept going, even if it was just a few bites of yogurt.

Yesterday I was giving her some peach/mango applesauce and guess what? She actually seemed to be liking it. She stopped flailing her head back and forth and let me hold her hands so I could get it in her mouth. Then she would chomp on it a little, and the best part...it stayed in her mouth and went down her throat. In the past I've had serious doubts that she was ever swallowing the baby food. So then tonight we tried pears mixed with oatmeal, and again she ate it. She downed half a jar, which is monumental for her! It about brought me to tears numerous times. It's amazing how something so simple as eating baby food, that many parents take for granted...at least I would if I didn't have Kaelyn, can bring so much happiness to a mom. Kaelyn teaches me how to enjoy the small things in life and small things happen daily, so that makes for one happy mama. Next step I'll be waiting for is when she will open her mouth voluntarily, so I can just shovel that good-ness in.

If there are any mom's out there that has had similiar experiences with their kids, please share any good ideas/tips you may have.

"Gimmie the spoon mom, I'll do it MYSELF!"

She was not about to smile for me

The tree is up....

2010-12-01T17:02:00.000-08:00

and all the gifts are wrapped and placed beneath.

Oh wait thats Kaelyn, and I have a feeling she will spend most of the season under there. Last year she loved the lights of the tree. She could just stare at it all day long. This year is no different, except she's mobile now and can place herself in the best position to get a nice head scratch on the tree limbs.

Happy Holidays from the Bonner Family!

(This is as close as we get to a christmas card)

The Sympathy Cry

2010-11-16T10:24:00.000-08:00

Kaelyn has started to do the funniest thing the last couple weeks. The other day I was watching my friends little guy and he started crying while I was feeding Kaelyn. Out of no where she breaks into the saddest cry, like we just tried putting an IV in her. (Thats when she gets the maddest). After I picked Mason up and calmed him down Kaelyn was just fine again. Then she did it again Sunday and today when her friend Seren cried. Its hard for me not to laugh because Kaelyn literally NEVER cries, unless serious pain is inflicted, like at the hospital. I guess this is a glimpse into her personality, she doesn't like to see her friends sad. She's already got their backs and will not rest until they are happy.

She also LOVES the jumperoo. She will jump forward and then swing backwards. It actually looks pretty fun, I'm wishing they had one in my size. A couple days ago she jumped herslf right to sleep.

Kaelyn got a sleep study done a couple weeks ago. It showed that she has Obstructive Sleep Apnea and will need to sleep with oxygen at night indefinitely. Nothing we can't handle, just as long as we put the O2 AFTER she goes to sleep.

How she could sleep with those all over her is a mystery to me.

Lately she has been venturing out on her own, she made it to the tile the other day and decided to snack on it.

Then she decided to go to her room.

All dressed up and ready to cheer our Cottonwood Colts volleyball team on at the state tournament. She did great "enduring" 8 straight hours of volleyball.

She's one proud fan.

All dressed up for the U of U basketball game. She loves going to those with her cousins Kinzley and Melea.

Trick or Treat?

2010-10-31T19:38:00.000-07:00

This year Kaelyn was definitely more interested in doing some of her TRICKS, rather than trying out any of the treats. She was not impressed with the Butterfinger I tried letting her taste.

Trick #1 - Puffy Cheeks

(Cousin Natalie is not quite sure about this one)

Trick #2 - Pouty face

(Shouldn't it be the other way around? The nice pink kitty afraid of the scary lion?)

Trick #3 - The Standing Raspberry

(With a little help of course)

Trick #4 - Unmasking Spiderman

(Kaelyn's costume is actually Jacksons first Halloween costume. He was nice enough to let her borrow and girl-i-fy it)

We had a fun time trick or treating around the neighbor with not one, but two Spidermans and the cute pink kitty. Kaelyn was so comfy in her costume that she took a "lion" nap half way through it. As you can tell from the pictures, she forgot all about the roaring she's been practicing lately and decided that Lions do lots of raspberries instead.

October happenings

2010-10-24T17:42:00.000-07:00

Kaelyn was quite the trooper on our 5 hour slot canyon hike. She took two naps. That is her on her dads back. We were down near Page, AZ at Lake Powell.

Posing with Uncle Travis, Uncle Will (Wayne's brothers), dad and mom.

All bundled up in the Monkey towel aunt Wendy made her. She is under strict orders from her cousin Mckinley to ONLY use this towel at bath-time.

Kaelyn all geared up to go to her first Utah Football game with her Dad.

All the cute kiddos at the Playgroup we went to on Thursday. Kaelyn is sitting next to her buddy Porter. He wanted to wrestle earlier and she was all for it!

Sneak peak of her halloween costume. As you can see she has really been working on her ROAR!

Picture This

2010-09-17T21:26:00.000-07:00

What do you get when you take the cutest little girl to a photo shoot? $300 worth of pictures because you LOVE THEM ALL! Enjoy, we sure do.

We're Here!

2010-09-14T08:57:00.000-07:00

Yikes! Somehow August came and went...and we've been doing some serious blog slacking. We just got over that nasty cold thats been going around. I don't recommend catching it. Of course that took us in for Kaelyn's second trip to the E.R. We tried to just go to the ped, but he didn't want to take any chances and make sure it didn't go into her lungs. She had a nasty fever and was not acting like herself. When she sleeps her O2 Sats are dropping into the 80s. We are hoping that is because of the cold, but for now she has to be on oxygen when she sleeps. Other than that, things have been pretty low key around here, not much to report. Wayne and I have been playing lots of outdoor doubles volleyball and Kaelyn has been our biggest fan.

Hanging out in the E.R.

Kaelyn got to spend last Saturday with Grandpa Bonner while mom and dad played volleyball, lucky girl!

Playing with the Rasmussen Cousins. Carson & Jackson were sure to put barricades and cones

between the girls so Kaelyn didn't roll all over Natalie.

The whole gang, I took all four kids with me to a Cottonwood volleyball game, it was quite fun

hauling in 2 babies. Luckily the boys are great helpers!

All bundled up to go with mom and dad to play volleyball outside.

We are finally going to get some professional photos taken of our little munchin on Friday, (Thanks to the Story family), so I'll be sure to post those when we get them.

Accessories and Tricks

2010-07-15T22:36:00.000-07:00

Kaelyn has been very productive this summer. Below are a few of the things she's been doing.

A girls got to have her accessories, right?

She got her ears pierced for her birthday.

Mom's had fun painting her toenails

Glasses - she's not too excited about them, but I'm sure that will change when she realizes she can see better. People ask how we keep them on her...we don't. If we're not holding her hands, she's taking them off, and then banging them around. Thank goodness for the 1 year warranty on them, I'm sure we'll be using it. We also get asked a lot about how they knew she needed them. I'm not exactly sure but they dilated her eyes, and then held different lenses up to her eye, and based on how her eyes reacted to them, he saw she was near sighted.

Now to the tricks

Kaelyn has been figuring out this sitting up business. She sat up for five minute sessions a couple times while her mom did Yoga the other day. It must have been a fun sight to see so she didn't want to miss any of it. Notice the boppy behind her to help out when she tires out.

"Look at me, I'm a champ"

"You want some of this?"

Smiling for the camera

And last but not least, the newest daddy/daughter circus act.

Summer Time

2010-06-30T17:28:00.000-07:00

Kaelyn and I have been taking advantage of the warm summer weather. We've been hitting the pool at least once a week. She was really enjoying it yesterday. We went to the pool with the big slide with our cousins and had a great time.

Ouch that sun was making it really difficult to smile for the picture

Kaelyn its safe to open your eyes now, you're in the shade

Kaelyn dressed up in her Baseball watching gear.

We had a good time watching Carson and Jackson tear it up on the tee ball field.

Birthday Girl

2010-06-16T18:28:00.000-07:00

Of course Kaelyn had to match her cake and decorations.

Blowing out the candle. (She might have had a little help from mom)

Wayne and the kids helping her open her presents.

Kaelyn's Birthday Cake

The middle layer had a Oreo frosting filling

I made Marshmallow Fondunt to cover her cake, it wasn't

too hard, but took quite a while to do it all.

Kaelyn didn't eat any of her cake, but she had a taste of the cookies and cream ice cream.

She wasn't quite sure about it ;)

Kaelyns 1st, of many, trips out on Grandpa's Boat

"This green thing is eating my head!"

In a years time...

2010-06-14T15:07:00.000-07:00

Kaelyn has grown from 1 lb 11 oz, 13 inches long to 14 lbs 8 oz 26 inches long

(and went from the length of 2 spoons to the length of at least 5 spoons)

Dad's wedding ring went from fitting around her wrist to barely fitting around 2 fingers

She went from sporting this little number as a beanie to wearing it as her birthday party hat!

*Birthday party post to follow.

2 New Joys

2010-05-29T20:04:00.000-07:00

So, this past week we have discovered two new things about Kaelyn. First, she loves swimming. Second, she has the cutest giggles in the whole wide world. We were up in Midway for a work retreat at the beginning of the week and took Kaelyn swimming for her first time. She has always enjoyed bath time so we figured she would like swimming as well. No doubt about it, she had tons of fun, as you can see in the video below.

(The scream at the end is her happy scream. You'll see another one in the next video)

Second, I was just playing around with her the past couple of days. We have a new trick where she actually gets excited for me to start kissing her cheeks. It's been a lot of fun and then today she did this. We almost died because of how cute it was.

(the very best giggle is at 1:00)

Kaelyn has an announcement...

2010-05-12T16:37:00.001-07:00

NO MORE OXYGEN!

She's been off the stuff for FIVE days now, and couldn't be happier. Her mom and dad better start lifting weights now that they don't have to lug the tank everywhere they go.

Become as a little child

2010-04-26T21:17:00.000-07:00

Kaelyn posing for her first "Glamour Shot"

(taken by Max's mom Kristin)

Last Sunday we took Kaelyn with us to Stake Conference. Now that its warming up and most of the bugs are passed, we feel like she can come with us to church now. I've been waiting along time for these days. (When I was a kid and would lay my head on my mom's lap during church, I would dream of the days I had a little one and could bring a blankly and treats to church) A couple rows in front of us I noticed a cute little girl, around five years old was watching Kaelyn for most of the 2 hour meeting. As the meeting was coming close to ending I noticed she was telling her mom about Kaelyn and her mom took a quick peek and smiled. Next the little girl was asking her mom about the stickers and oxygen tubes on Kaelyn's face.

When I saw her doing that my heart sunk a little. The thought came to me. "that must be why she was staring at Kaelyn so much." I was a little let down, but moved on quickly and kind of forgot about it. Of course this little girl proved me wrong. Right after the meeting she came back to me and said, "You're little baby is so pretty", then she shyly went back to her mom after I said thank you. I was awestruck, I can't tell you how good that made me feel. It proved to me that we do need to be more like little children. Yes, they are going to have questions about Kaelyn, and that is okay, they aren't trying to be mean or point out what's different about her. Most the time they genuinely want to learn, and what a great opportunity to teach them. But just like the little girl on Sunday, they will end up teaching us.

I just love this picture of her, check out the new hairstyle she has been sporting this week ;)

(Picture also taken by Max's mom - @ our fun play date)

Kaelyn's first ride on the Carousal at the zoo.

My Little Friend Maker

2010-04-23T09:25:00.000-07:00

A few weeks ago Kaelyn and I spent the day watching some of the girls I coach in high school play in a club volleyball tournament. Kaelyn was such a good sport, she was totally content hanging out in the gym all day, which is good because that is about all we know how to do in our family. We had such a good time watching the volleyball, but also making new friends.

I decided that one of Kaelyn's talents is making new friends. We made a couple of new friends with some of the other mom's there watching their daughters. One offered her extra chair to us and kept checking on us to see if we needed anything. Others made sure none of the stray balls hit us while the teams warmed up. We carried on some great conversations about volleyball, Kaelyn, their daughters and just anything else that came up. This little girl is helping her shy momma come out of her shell and enrich her life by meeting new people. If it was just me sitting there, I wouldn't have talked to anyone except the girls I knew. Thanks Kaelyn, you're helping me become the person I want to be, one day at a time :)

First Golfing Trip - She loved cruising in the cart

"Ah mom, what was that? You're suppose to hit the ball!"

Yay for Summer Clothes!

Happy Easter

2010-04-04T13:32:00.000-07:00

We hope everyone is having a wonderful Easter holiday. We are so grateful for this holiday and especially for our Savior who suffered, died and was resurrected so that we can have eternal life. It is because of Him that we can be together as a forever family. This knowledge brought us so much peace and comfort one year ago, when we weren't sure what the fate of the little girl growing inside of me would be. We are so grateful for every second we have with Kaelyn. She has brought so much happiness and love into our lives. We are grateful for all of the wonderful parents and children we have met since her birth, that have shown us the way. Thank you for helping us through those tough days and for rejoicing with us through the wonderful days. One thing we've learned in the past year is that there are amazing people out there, willing to share their love with complete strangers. "To mourn with those that mourn and comfort those who stand in need of comfort".

Good Night

Blog Awards

2010-03-28T20:58:00.000-07:00

Okay so in the past few months we've been given a couple of blog awards and I am finally getting around to posting about them. Thanks to those who gave them to us, that is really nice of you all.

Way back in January Kristin over at http://twodogsandafish.blogspot.com gave us the Happy 101 blog award and then last week Tracie at http://thevelander4.blogspot.com gave us the same award and wrote some really nice things about us. Thanks so much ladies, it definitely makes us feel good that you think our blog is spreading happiness. That is definitely what we want this to do. Kaelyn makes us so happy and we want to share that with the world.

Here are the rules for the award:
1. Copy and paste the award on your blog.
2. Name the person who gave the award to you and link to their blog (or hyperlink).
3. List 10 things that make you happy.
4. Pass the award on to other bloggers and visit their blogs to let them know.

10 things that make Kaelyn happy

10. Lots of kisses on her little chubby cheeks. That is one of the only ways we can get her to giggle.

9. Her bottle. She is such a better eater since her heart surgery. Everyone said she would be but we didn't want to get our hopes up, but its true. She drinks her food about 5 times faster than she did before.

8. Her bath time! She LOVES her tubby tub tub. She likes to splash and get mamma all wet, especially on the days that she is actually dressed and not just in her jammies.

7. Her Glo Wormy doll that cousin Nick gave her. It is definitely her favorite toy. If she is crying she will stop immediately if we squeeze his tummy and his face lights up and plays music. She even gives him kisses.

6. Balancing on daddy's hand.

5. Cuddling with Daddy and Mom. She is an expert cuddaler.

4. Volleyball/Basketball games. She loves to look up at the big lights on the ceiling and smile. Her favorite is the Huntsman Center's crazy ceiling.

3. Making funny faces, i.e. Elvis lip, fish lips, and grandma denture face to name a few.

2. Swinging while mom runs on the treadmill.

1. Making everyone that she meets smile. She loves to show off her tricks when we take her out. Making fun faces and sounds and whatever else she can think of.

We would like to give this award to...

Erin, Matt and Ellie at http://thematterinlife.blogspot.com/

Vandi at http://vdubsblog.blogspot.com

The other award we got was the Beautiful Blogger award from Alaina, Beau's Mom at http://alainakylestevenson.blogspot.com. Beau was born a few weeks before Kaelyn and was in the NICU while Kaelyn was. He is such a cutie and Kaelyn totally has a crush on him. Thanks so much for the award!

The Rules:
1. Thank the person who nominated me for this award.
2. Copy the award & place it on my blog.
3. Link to the person who nominated me for this award.
4. Share 7 interesting things about myself.

5. Nominate other blogs.

Seven Interesting things about the Bonner Family

1. We love to play sports, that is how Wayne and I spend most of our free time and Kaelyn will be right there with us. Some of the things we do together are volleyball, tennis, snowboarding, wake boarding, golfing, ping pong, basketball, softball, pool, bowling...okay I think you get the drift.

2. Wayne plays the guitar and Jeana plays the piano.

3. We like to watch Lost, The Office, Psych, American Idol, the Cosby Show.

4. We have been married for 4 years, 9 months and 5 days.

5. We work for the same Non-profit company. (Yes we get paid)

6. We don't have Cable television for the first time in our marriage...because we didn't have to pay for it before :)

7. We love being parents so MUCH! Kaelyn is the best!

Yikes that was hard, and sadly some of those aren't too interesting, but its the best we could think of :)

We would like to pass this award onto;

Sunny at http://downtolife.blogspot.com

Rebecca at http://astirringlife.blogspot.com

Polly and Kristen at http://sheisourangel.blogspot.com

9 months

2010-03-18T20:23:00.000-07:00

I can't believe this little girl has been around for 9th months! I guess its true what they say, "Time flies when you're having fun". Kaelyn just gets cuter and cuter every day. I can't look at her and not smile, its just impossible. She is doing so good. We have taken out her feeding tube, turned down her oxygen, moved her into her own room and gone for our first two hour walk in the sunshine. Life is bliss here at the Bonner house! Now for the pics.

"Hi everybody!"

She has the tastiest fingers in the town.

Sporting her St. Patricks day outfit.

She sure loves her bath time.

Enjoying a Sunday nap with dad.

Enjoying a Sunday nap by herself.

First night sleeping in her own bed.

Check out that curl on top her her head.

Drum Roll Please...

2010-03-03T16:45:00.000-08:00

WE ARE HOME!!!! As we speak Kaelyn is nestled quietly in her boppy, having lots of sweet dreams I'm sure. A little while after we got home Wayne asked her if she was "pumped to be home" and she gave us two of her biggest smiles yet. We are all so glad to have her heart surgery behind us and ready to move on from here. Thanks for all your kind words and prayers, that is what got us through all of this. Kaelyn is absolutely amazing, she endured so much these past couple weeks. We're so proud of her and so grateful to be her parents.

I've been thinking about an experience we had while I was pregnant with Kaelyn and I wanted to put it down on her blog so I would remember it. After it was evident that Kaelyn was going to be spending some time in the NICU because of her condition, we set up a consultation with the University of Utah NICU. We met in a conference room with a doctor and he went over everything that was going on with Kaelyn. One thing he said really stuck out in my mind. He said, "You're daughter will not be the same person she would have been if she had Down syndrome alone. The issues with her heart and growth really complicate her situation". He tried not to be too negative and at one point advised us to be "cautiously hopeful" about how things would turn out. He was really kind and compassionate, but it was the first time Kaelyn's whole situation was put together like that and it was really discouraging for us. I spent most of that night in tears and at one point said to Wayne, "She just has too much stacked up against her". I really felt like she wasn't going to make it, it just seemed too impossible.

Now as I look back over the past year I am in absolute awe at my daughters life. She has beat some serious odds, just the fact that she survived 32 1/2 weeks in the womb on very little nourishment is truly a miracle. She was only half the size she should have been due to poor blood supply through the placenta. People often comment, "I don't know how you do it" or "I could never do that" in relation to having a child with special needs or in the NICU for over 100 days or taking her to get open heart surgery. One night while I laid in bed when Kaelyn was still in the NICU I thought, "If this is what it takes to keep this little girl here, it is worth it and I can do it". There have been some really hard days watching her little body fight to survive, days when I thought it was too much, too hard and not fair. How grateful I am that Kaelyn kept fighting and continues to fight. She never gave up, never gave in, even when it seemed impossible, she came through. Teaching us how to persevere and continue on this miraculous journey she is on.

Though it may be true that she is not the same girl she would have been without all these health complications, that really doesn't matter. She is Kaelyn and she is amazing. She will do things at her own pace and that will be just perfect. The fact that she won't be walking or talking at the age of most kids doesn't hold a candle to the milestones this little girl has reached. She has already proven time and time again that she knows what she is doing.

Some "Pre-surgery" bath time pictures

I just love this goofy face she pulled

Last night she was begging us to take her home

Sitting in that hospital room was quite boring

Kaelyn's first wagon ride out of Primary's.

Sweet dreams in her boppy.

(You can see half of her scar)

We got the boot

2010-02-27T15:49:00.000-08:00

Finally, we've been kicked out of the PICU. Yesterday morning Kaelyn was transferred to the Children's Surgical Unit (one step closer to the door home). Overall she's been doing very well. She did catch a bit of a cold/fever bug, as of yet not RSV, so we're hoping she can get over that stuff. Also, when they pulled out one of her IVs the artery that it was in clotted. So now our little one has to get a shot every 12 hrs. to thin out her blood until the clot breaks up. The poor thing. Other than that, she's doing great. Everything with her heart has worked out fine, gratefully. It's just kind of funny that her heart is doing so great but it seems like she just keeps getting beat up by something else. Lots of nicks, scratches, and sores, but nothing our feisty little one can't handle.

Thank you so much to everybody for keeping us in you thoughts and prayers. None of us could have made it through this experience if it weren't for ya'll.

Couldn't Resist

2010-02-22T17:01:00.000-08:00

(click to enlarge)

Ok, the nerd in me (Wayne) is finally out. I found this really cool piece of software that makes these collages super easily. Then, with some fancy photoshop work, I made it look as shown above. I thought it was pretty cool so I had to publish it.

Kaelyn has been doing pretty well. We've had a couple of setbacks but nothing major. Yesterday afternoon they took her off the ventilator and put her on CPAP which is pretty common. They also pulled out two of her chests tubes because they weren't draining any more, but then liquid started to gather around her lungs. So, today they had to put one back in. We were worried that they would have to put her back on the ventilator but it turns out she handled the procedure like a champ and her oxygen saturations have improved a lot since the new tube was put in.

Update - Day 3 Post-Op

2010-02-19T15:20:00.000-08:00

Kaelyn is doing pretty good. Yesterday she developed an arrhythmia (her lower chambers were not pumping) in her heart, so they had to use the pacers that they had set up to her heart. They said that is pretty common with heart surgery and that it is usually related to swelling in the heart that disrupts the conduction pathway. Thankfully it went away today and now she is off the pacers and her heart is doing all the work by herself.

She is still on the ventilator and it sounds like she will be for a few more days. She has been a little more awake and alert but they are trying to keep her comfortable. People keep asking how long we will be in the hospital, but we don't really know. It really just depends on how she does so we are just taking it one day at a time :)

She certainly is a little fighter, my hero. I'm so proud to be her mother (Wayne is so proud to be her father, too [added by Wayne during the proof read]). Thanks again for all the love, support and prayers. They have helped our little family more than we will ever know. The other day I was out on a run and I had the thought, "I hope in the next life I can look back on the last year of our life and see all the angels and family members who have passed that were helping our little girl through all this." I know she is in good hands and I also know that Heavenly Father is close by. When we first found out that Kaelyn had Down syndrome I read a talk by a leader of our church about children with special needs. He quoted a hymn that I have grown to love and often repeat the first line. "Dearest children God is near you, watching over you day and night." My plan is to make a cute saying board with that on it and hang it in Kaelyn's room. It has brought me so much peace and comfort through all of this.

Also I read this little story the other day and I just thought it was so cute.

"Sister Seamons also told of a particularly humorous event that happened when Brad was a young boy sitting with his parents at a ward banquet with the bishop and his wife and their precocious seven-year-old son Jake. At a certain point Jake looked at Brad and said, “Hey kid, you look kind of funny, what’s your problem?” Jake’s parents, of course, were mortified, but Brad’s mom intervened assuring them that it was all right for him to question Brad. This time Jake asked his question a little more quietly, “Well, what is your problem?” Brad looked squarely at Jake and said, “I have Down Syndrome and Heavenly Father knows it—what’s your problem?” Everyone at the table melted into laughter and Jake replied, “Well, if Heavenly Father knows about it, it must be cool!”"

I just love that. Heavenly Father DOES know it and is well aware of the needs of His little ones.

Oh Happy Day!

2010-02-17T14:28:00.001-08:00

So, we're out of surgery and so far everything is going very well. The estimated length of the operation was 4 to 6 hrs. and it ended up only taking 3. What a relief to not have to wait as long as we were expecting. For now, Kaelyn is just hanging out. They will keep her sedated and comfy for the next day or so and also keep her on the ventilator until they feel that she is ready to do it on her own. The big thing will be to keep her heart from working too hard too soon so that the sutures don't get harmed.

A big thank you to everybody who has gone out of their way to keep us in their thoughts and prayers the past couple of days. We are certain that has helped Kaelyn and us make it through this week.

I also thought it would be fitting to include a video clip from one of Jeana's favorite movies.

And now, enjoy some pics

Resting up for her big day

"Dad, you're squishing me!"

She was so hungry this morning she needed both her thumb and the binkie.

Her PICU setup.

Tomorrow's The Day

2010-02-16T14:26:00.000-08:00

Well, it's officially slated. Surgery tomorrow morning at 8:00 am. We had a pretty good visit at the hospital today and everything looks good. We also got to talk to the surgeon, Dr. Kaza, for a bit and he described exactly what he will be doing tomorrow. It'd be pretty difficult to explain over the blog, but if you want a description in person, I would be more than happy to give you one.

After talking to Dr. K, Jeana and I both feel really good about his skills and know that our little angel will be in good hands. Thank goodness there are people out there that are willing to dedicate their lives to helping our littles ones have the best life possible. We have been so lucky to have good doctors and nurses and also a great pediatrician.

Please keep Kaelyn and us in your prayers as we are about to undergo the scariest experience of our lives. We have faith that all will go well, but still, the thought of open heart surgery on our little 8 month old is a bit frightening.

No, We're Not "Hanging In There"

2010-01-22T16:03:00.000-08:00

Don't be alarmed. Allow me to explain the title of this post. Over the past few weeks Jeana and I have had a few people tell us to "hang in there." After talking to them about Kaelyn, and them noticing that she needs oxygen and has a feeding tube taped to her face, they decided to say goodbye by telling us to "hang in there." We know that they are being nice and want to wish us well, but we are just confused at what exactly they mean by "hang in there." Hang in there to what? We are living the dream! Sure Kaelyn has some needs that others don't but that doesn't mean that we aren't happy, or that having her is a constant struggle. I'm sure that anybody that has had a child with special needs knows exactly what we are talking about, but for those of you that don't, perhaps a little bit of background will help you understand what we mean. Here goes.

Jeana and I tried for a while to get pregnant, so you can imagine the exciting joy we felt when we finally found out that we were expecting Kaelyn. At the 20 week ultrasound we found out that Kaelyn most likely had one of three things. Trisomy 18, Trisomy 13, and Trisomy 21. We were told that Trisomy 21 is also known as Down Syndrome, and that the other two are almost always fatal. In less than 10 mins. we went from being super excited that we were having a baby girl to devastated that she might not even be born alive. We decided to do an amniocentesis to find out exactly which of the three she had. Of course, the results didn't come in for a week. So, that week was a bit of a struggle and, in complete honesty, we were hoping that she would have Down Syndrome and she did.

Throughout the rest of the pregnancy the outlook for Kaelyn kept getting gloomier and gloomier. There were times and discussions that Jeana and I had to have that no parent should ever have to have. So, you can imagine the intense joy that we felt when Kaelyn was born alive and doing quite well. Sure she was 2 months early, weighed just over 1 1/2 pounds, had a major heart defect, and had Down Syndrome. But, none of that mattered. Our baby girl was finally here.

Then we spent 3 1/2 months in the NICU. What a ride. We are both big fans of roller coasters but the NICU coaster isn't one that were running to get back in line to ride again. So, you can imagine the wonderful joy that we felt the first day we were able to bring Kaelyn home and have her with us all day.

Since then, things keep getting better and better. Yes, she had the swine flu, a couple of colds, ear tubes, and will have open-heart surgery in a month, but none of that matters. We are living the dream! So, when people tell us to "hang in there" we get confused. Kaelyn never has and never will be a trial. We know there are more ups and downs to come, but we look forward to those moments of joy that will follow each one.

Now, enjoy some new pictures:

Loving daddy's kisses

"Where's my chips and salsa? I'm ready for the game"

"Just checking myself out on mommies computer"

Baby picture of Jeana

"So what do you think, do I look like my mommy?"

"Please mom, no more pictures"

Yes, we're still here, and doing great!

2010-01-10T18:40:00.000-08:00

We all had a wonderful Holiday and are now back into our daily routine. Kaelyn learned lots of new tricks the last couple of weeks. It started with a cute little noise she would make with her tongue. We tried to catch some video footage of it, but she was being camera shy. Then a couple days later she mastered the roll onto her stomach. She's decided that tummy time isn't so bad if it's her choice to do it. She's working very hard to get back on her back, and will conquer that in no time. She's also doing much better with her head control and sitting up with assistance.

Last Sunday we were able to bless her. It was so fun to see all our family and friends that came to support us. She looked just to cute in her dress. There is a cool story behind her blessing dress. One of our blog friends is adopting a little girl from Russia that has Down Syndrome. She is 4 years old and if she didn't get adopted soon, she would be put into an institution for the rest of her life. Her new family is working hard to get her here so one of the things they are doing is raising money. It's VERY expensive to adopt and even more because its international. A month or so ago they held an online auction and someone had donated the most beautiful white dress, and it was just Kaelyn's size. We were so lucky to get it for her special day and its even more special because its helping to bring a little girl home to her forever family.

We got a call from the children's hospital on Wednesday to schedule Kaelyn's heart surgery. We were pretty surprised, we didn't think it would happen so soon. It is scheduled for February 17th. We are both excited and nervous. We know she needs it, and will do even better once she gets it, but its still very scary. Luckily we are blessed with a number of new friends who have had the same or a similar surgery, and they are doing great.

Now to the main event. For my birthday my Mother and Father In-law gave me the coolest gift. There is a man in their neighborhood who is a composer and writes custom lullabies. They had him write one for Kaelyn. It is just beautiful, and couldn't be more perfect. We finally got around to putting it to pictures of her life so far. Enjoy...(Click on the picture to view)

From Feisty Kaelyn

Here is Wayne and Kaelyn's new circus trick. (Click on the picture to view)

From Feisty Kaelyn

3rd Time's a Charm

2009-12-22T05:00:00.000-08:00

Kaelyn finally passed her newborn hearing test! Yippie. I guess that makes having the swine flu worth it, because her tubes made all the difference. I think she just wanted to give her mom and dad a very nice Christmas gift, which she did. We heard back from Cardiology yesterday and they have decided to hold off on surgery for at least another couple pounds since she is quite stable. She will have another appointment in January.

She also had her 6 month check up last week. She is measuring 11 lbs 9 oz and 21 1/2 inches long. If you didn't notice she is a shorty. On the Down Syndrome growth charts she is about 65% in weight and 10% in height. She had to get 5 shots and was not happy about it! But I'm pretty sure no kids are happy about their shots.

We wish you all a Merry Christmas and a Happy New Year! We are headed out to my parents house for Christmas. It will be fun for Kaelyn to spend her first Christmas with all her cousins on my side.

Happy 6 Months Little Missy

2009-12-13T10:49:00.000-08:00

I just realized its been three weeks since we posted, time sure flies when you are having fun. We've done lots of fun things the last few weeks. First, Kaelyn made her first trip out to my parents house in Neola. Its about 2 1/2 hours from where we live. She did great on the drive, she just hung out with mom in the back seat on the way, and then slept the whole way back home. She got to meet lots of her cousins and great aunts and uncles. I took the camera but of course forgot to take pictures.

Then the next week she got to meet her Great-Grandma & Grandpa Hall. I wasn't there for the event but Grandma Hall was sure to let everyone know that Kaelyn liked her the best :)

She does look pretty happy in Grandma Hall's arms.

Last week we took her to the live nativity they do at a Stake center in Draper. It was really amazing, I would recommend it to everyone. Just a few tips...Dress warm (like long underwear, gloves, beanie) and get there at 5:00. We didn't do either and we were wishing we had. We were there right at 6:00 and it took 2 hours to get to it. Luckily we had bundled Kaelyn up so good she was sweating.

I took this picture at the nativity and it looks like a painting or something because I couldn't use my flash. I love how Baby Jesus is just glowing.

Tuesday Wayne and I had a meeting at work we both had to attend so she had her first whole day baby sitting adventure at Grandma Bonners. Of course she started it off with her first MAJOR blowout. And of course we didn't pack any extra clothes because she has never done that before. Luckily Grandma had some jammies she could wear. Other than that and unhooking the syringe while milk was going in her feeding tube, it was a success.

On wednesday we went to the Utah basketball game with Wayne's brother and family. Kaelyn really enjoyed herself. There were so many lights in the stadium she didn't know which one to look at. She also got a new Utah Utes beanie because she has out grown her pink one.

Then on friday we had another cardiologist appointment. Things still look good with her heart, and she has reached the 5 kilos they wanted her at to do surgery. Our cardiologist was amazed that she has gotten there so fast. She came home from the hospital weighing 5 lbs 14 oz and is now 11 lbs 4 oz. They are going to talk about her at the Wednesday conference and then we may be doing surgery sometime next month. I can't believe this day has already come. We're excited to get her heart repaired, but scared to do the surgery. Our little girl has already come so far, I'm sure she'll do awesome.

After her appointment we were able to meet Kristen and her parents. Please include them in your prayers, we need to get her home before Christmas so she can enjoy the holiday's in the comfort of her own home.

On the Up Swing of Things

2009-11-19T07:30:00.000-08:00

Kaelyn seems to be fighting this flu bug off like a champ. Did we expect anything else? The last 3 days she has just seemed more like herself, not sleeping and coughing so much. Wayne and I have managed to stay healthy too, we started on tamaflu right off and then both got our vaccines.

We have already noticed a big difference in Kaelyn since she got her tubes put in. She has started making lots of fun noises. We get such a kick out of her. She does this thing where she stares at the ceiling and just giggles and smiles. We follow her eye line and try and figure out what she's looking at...just the ceiling or the light. We figure she's looking into heaven and seeing something or someone we can't. I'll post a video of one of her laughter sessions for your enjoyment. She's having one right now as I type this, so fun:) She also loves to play with her hands and is working hard to roll over on her tummy. Her head control is getting much better, her and daddy do all her exercises when he gets home everyday.

Thanks for all your prayers and concern for our little one. We head to the pediatrician today to weigh her and start the RSV shots. The shots will be so nice to have to help protect her through the winter. Let me just say, our Pediatrician is amazing. He was Wayne's growing up. We go in every week to weigh her and do a quick check up, and he doesn't charge us for it. Also while she's been sick he calls us regularly to check in, even on Saturday morning. It feels like she is his only patient. Its so nice having someone so concerned caring for our daughter. Now to the good stuff, pics/vids.

Sporting the beanie "Classy Grandma Chelsea" made me.

"If you can't tell I'm working on chunkin' up these cheeks"

Family Photo Opp
(Mom totally dressed like me, I was dressed WAY before her)

Just looking too cute

It's confirmed

2009-11-14T12:59:00.000-08:00

Well darn it, the one thing we tried so hard to keep from getting to Kaelyn found her at the hospital. Our little girl has the H1N1 flu. As scary as it is she is doing pretty good. She has a cough but her fever went away and she's doesn't seem too miserable. We're sure this flu is no match for our mighty warrior. Please help us in praying that she'll be over it in no time and that it won't send us back to the hospital where she can catch something else.

Yikes...

2009-11-12T10:02:00.000-08:00

The tubes went well, and we were back home Tuesday morning. However, Kaelyn didn't have enough time at her old stomping ground (The hospital), so we went back yesterday and checked out the E.R. (I have a feeling we are going to know this hospital like the back of our hand.) We think she picked something up at the hospital while we were there because she has a cough, and then yesterday afternoon spiked a fever and just wasn't acting like herself. I called the Pediatricians office and they sent us to Primary's ER so they could run tests on her to see if she had an infection. After six hours we found out that her blood gases looked good, her white blood count wasn't elevated and her urine wasn't infected. We're still waiting on the results of the mucus test to see if its the flu.

Luckily she was doing much better so we were able to come home. Her temp has come down and she just looks a lot better. We will check in with our Pediatrician today. Whatever it is, lets hope our little trooper can fight it off. She's sleeping lots and taking Tylenol. Here are some pictures of our little sweety in her E.R. Suite.

Snuggling with Daddy

Just completely zonked by the end of the whole the ordeal.

(She sleeps in the strangest positions)

11/08/09

2009-11-08T13:25:00.000-08:00

Kaelyn apparently isn't too fond of the number 8, because at her check up this week she is already at 9 pounds! I've been at state volleyball the past two days and I REALLY notice how big she is getting because I haven't been with her all day. She is getting the cutest little creases in her wrists...I LOVE those. She is still fitting into most her newborn clothes, but that won't last too long.

We also had a Neo-natal follow up at the health department and met with a number of different specialists. Everyone thought that that she looked well, especially since all she has been through. She was a very good girl for the VERY long day we had. The only time her feistiness came out was when the eye doctor help open her sleeping eyes and put the drops in them to dilate them. Man was she TICKED, and she let him know it.

Tomorrow we head up to the children's hospital to get tubes put in her ears. She failed the hearing test in her left ear twice so we saw an ENT and he saw some fluid in her ears, so the tubes should help with that and hopefully she can pass her hearing test. We have to stay up there over night so they can keep a close watch on her and make sure she comes out of the anesthesia without any problems. Its a little scary going back there for the night, but lets just hope everything goes well and we are back home Tuesday morning.

Please pray for our dear friend Kristen and her family.

*Thanks to our friend Dari for the Utah bear. Love it!

And the scale says...

2009-10-29T20:11:00.000-07:00

Kaelyn is doing AWESOME! We went to the pediatrician today and our little 1 pound 11 oz micro-preemie baby weighs 8 POUNDS-6 OUNCES!! She has been packing on the pounds like no other. She has almost gained 3 pounds since we brought her home....just over 1 month ago. They weren't kidding when they said she would do better at home. We're so glad she was able to get well enough to make that happen.

We also met with Early Intervention today and she said Kaelyn looked AWESOME! She has made progress in just two weeks since we met with her the first time. We're working on strengthening her neck muscles, so tummy time. She doesn't absolutely love it, but she's a great sport. We're also working on getting her to follow things with her eyes. She is sleeping really well, she'll eat her bottle at 10:00 pm and then sleep till 6:00 when I wake her up to feed her. I give her 2:00 am feeding via gavage. That way I don't wake her up and she can get her much needed rest.

As far as her heart goes, she's doing really well. Her oxygen needs have not gone up at all and she's even on less oxygen at home than she was in the hospital. We will be back to the cardiologist in a few weeks. They want her to be at least 12 pounds before they do her surgery, but if she continues to do well they will probably let her get as big as possible....whatever that means. :)

So I have a funny story. A lot of the time when I try to get her to look at me she will look away, and when I try and get in her view she continues to turn away. Its a fun little game I play and it always makes me laugh. So last night I was getting ready to go to bed and Wayne was like, "Ah, get that" as he pointed to something under my feet. The look on his face told me it was a critter, so I totally flipped out and then looked down and saw a big BEE on the floor right between my bare feet. I hopped around like a crazy lady and then finally killed it with my shoe because Wayne was sitting on the floor holding Kaelyn, so I knew I had to do it. So after I got my wits about me I look up and of course she is staring at me with this look on her face that said, "Really mom, really?" In which I replied, "Little Missy, you're not suppose to see me like that...now you know what a sissy I am". Needless to say it was a pretty entertaining night here at the Bonner house.

P.S. There are lots of new pictures on the picasa page. I just have to take pictures of her in all her cute outfits since we don't get to go out and show her off.

Here's what 8 lbs - 6 oz looks like.

Check out our matching bracelets Polly made us...she thought it was something to suck on if you can't tell

Notice anything different? She got to go without oxygen while mom changed her stickers. Her eyes just get bluer every day!

Perfection

2009-10-21T13:19:00.000-07:00

I borrowed this from a blog friend. It brought tears to my eyes.

"As a small group of political and church leaders look on,

Jesus lifts a mentally handicapped child out of her high chair, kisses her and sits her on his knee. He dips a crust of bread in wine and feeds it to her, morsel by morsel.

As he does so, Jesus says:"I know what you are thinking. You need a sign. What better one could I give than to make this little one whole and new?

I could do it; but I will not.

I am the Lord and not a conjurer.

I gave this mite a gift I denied all of you -- eternal innocence.

To you she looks imperfect

But to me she is flawless,

Like the bud that dies unopened or the fledgling that falls from the nest to be devoured by ants. She will never offend me, as all of you have done.

She will never pervert or destroy the work of {my} hands.

She is necessary to you.

She will evoke the kindness that will keep you human.

Her infirmity will prompt you to gratitude for your own good fortune...More!

She will remind you that every day I am who I am, that my ways are not your ways and that the smallest dust mote whirled in the darkest space does not fall out of my hand...

I have chosen you.

You have not chosen me.

This little one is my sign to you.

Treasure her!"

The Sunday after our 20 week ultrasound, after we knew that there were problems with our baby, but before we found out it was Down Syndrome and a heart defect, I prayed so hard that everything would just be okay. That there wouldn't be anything "wrong". In church that day one of the speakers talked about the women with the issue of blood that touched Jesus's robe, and was healed. I remember feeling like I had enough faith for my daughter to be healed. After we found out for sure it was Down Syndrome, and let it settle in, I knew everything would be okay. I had the thought that she wasn't just okay, like I had prayed, but she was perfect. She has already taught me more about life and love than I had learned in the first 25 years of my life. I am so thankful that I am so blessed to be her mother, what an honor.

Kaelyn

2009-10-16T19:24:00.000-07:00

Okay I guess I need to clarify a little more on how to pronounce Kaelyn. Its like Caitlin, but without the T. The biggest thing is there is not a pause between the Kae and the lyn. The emphasis is on the A not the Y. Hope that helps :)

Whats in a name?

2009-10-14T12:59:00.000-07:00

I've been tagged by a couple friends to do this post, so I better get it done. It was to write about how you came up with your children's names. So here's a little background. I've been coming up with names for my daughters since elementary school. I had a little yellow piece of paper in my desk where I would write them. At the top of my list was ALEKSEIA. I came up with it when I was 12 years old. I was watching the 1996 Atlanta Olympics and my favorite male gymnast, Aleksei Namovth (SP) was competing. He was Russian. So I decided I wanted to name my daughter Alekseia, after him. Of course the first time I hung out at Wayne's house I saw a picture of his niece and nephews, and his niece's name was Alexia. I remember thinking, "Dang it, if I marry this guy I won't get to use my favorite name". Don't worry, I have another use for my favorite name, it will just have to wait. It was a price I had to pay to marry THE MOST AMAZING GUY in the WORLD! Well worth it.

So now to Kaelyn. For the longest time I couldn't remember where I came up with it. It has been our number one name for a few years. Then it came to me after I was tagged for this post. When I was in College I was a nanny for a 15 year old girl and a 12 year old boy. It was the best job ever! We just hung out every day and I trucked them to all their soccer practices and games. One of the girls good friends at the time was Caitlin. Also at the same time I was coaching club volleyball and there was a girl that played for our club named Kayla. I love that name, I still think about using it for a daughter but then I have to remind myself that its way to close to Kaelyn. So one day I was sitting in a college class doodling my future children's names (does anyone else do that?) and I combined the two names. Kaelyn - Pronounced Kaelyn, NOT Kae-Lyn. I figure if we wanted people to say it right we should have spelled it with an I, but I just thought a Y was more feminine.

Kaelyn's middle name is Ruth, after my Grandma Ruth. She is the most amazing person I know. A little story about how we decided to use her name. March 11 we went in for our 20 week ultrasound. That is when we found out that Kaelyn had a heart defect, fluid on her brain, was measuring small for her age and most likely had something genetic going on like Trisomy 21, 18 or 13. That whole experience completely caught us off guard and was one of the hardest days...up to that point...we had ever experienced. I could barely talk on the phone to tell my mom what we found out, my heart was broken. I had seen Grandma Ruth a few days before and told her that I would be calling her to let her know if we were having a boy or girl. Of course after all that I didn't feel like talking to anyone. I found out later that while my Grandma was working in the temple, at the very moment we were in the hospital, she had a strong impression that something was wrong and put our names on the prayer role. After a few days and me never calling her she started to get really worried. My dad came over to visit her and she told him that she knew something was wrong and that she wanted to know what it was. It was just so comforting to know that Heavenly Father was watching out for us and got the prayers rolling right off by letting Grandma know we needed help. After I heard that story and had talked to my Grandma, I knew we needed to use Ruth as Kaelyn's middle name.

Then a few weeks after Kaelyn was born I looked up the meaning of her name. It is "Pure Friendship". I thought that was just perfect for our little girl. Already at 4 months old her life has brought more friends to us than we could have ever imagined. Thank you all for your support and love. We are forever changed by your kindness.

We're still here :)

2009-10-08T18:45:00.000-07:00

We are still loving life. Wayne went back to work this week so its just been me and the little lady during the day. I even got really brave today and gave the her a bath all by myself! She wasn't as pleasant as she was when we tag team it, but it worked. We went back to the cardiologist Monday and they said her heart is looking just fine. She's also been putting on the pounds....or ounces I should say. She now weighs 6 lbs 10.5 oz! We even weighed her twice at the doc today to make sure. She sleeps A LOT...from about 12 am - 11 am...I wake her up to feed her a couple times. She's definitely a night owl like her Dad. Now for the pictures.

Little missy scrumptiously clean after mom's solo bath.

This is our little buddy Jaxon and his mom. He was Kaelyn's first roommate at Primary Childrens. They brought Kaelyn the SWEET deluxe swing below. She loves it!

Cousin Mckinley had never seen a baby girl swing before so we just had to show her.

She likes to squirm on daddy's chest, proof on the next picture.

Check out her cute cupcake bow, Max's mom Kristen made it for her.

Now THIS is the life

2009-09-28T20:00:00.000-07:00

We have just been enjoying every single minute with Kaelyn home. She is such a sweetie, only feisty when she needs to be, like when mom changes the stickers on her face that hold the oxygen in her nose. She is just so chill. She would be sleeping through the night, but she is on fluid restriction because of her heart so we have to wake her up and feed her every 3 hours. She loves to snuggle, snooze and just take in this whole new life at home. One of her favorite places is Daddy's chest and he loves it too. We went to her first pediatrician check up Saturday so they have a baseline to go on. We go back tomorrow to meet with our actual pediatrician. He was Wayne's doc as a kid and does a lot of work with children with special needs. He actually isn't accepting any patients right now, but after hearing Kaelyns situation he was more than happy to take her. He will definitely be a great resource/advocate to have for our little girl.

We also took her our for a quick jaunt around the neighborhood. She was loving it at first, but then got sick of the stroller, so we hurried right home. This little girl definitely has us both wrapped around her little finger.

Ahh...this is nice

This is what I woke up to Friday Morning

After bath time

Living it up in my super cute bouncer

Game day gear...GO UTES!

They better not play like they did last week!

My game day blanket with all my stats.

Out and about

Faster Daddy, Faster!

All dressed up and ready for the doctor

We're Home!!!!

2009-09-24T20:36:00.000-07:00

Kind of a surprise, but we are home!!! We had set a tentative discharge date for Saturday earlier this week but were trying to keep it cool so that we didn't jinx ourselves. Then on the way in to work this morning we called to check in on Kaelyn and they told us that we were going home this afternoon. SWEET!!!! The craziest thing is, if you would have told us two weeks ago that we would be going home today, there is no way that we would have believed you. But, after 104 days in the NICU, we are home and it is one of the happiest days of our lives. For those of you that have gone through a NICU experience you know exactly what I am talking about, for you others, it's just an incredible feeling of joy and awesomeness.

Waiting for Daddy to bring the car around with our FAVORITE nurse Jane

Walking to the car with all our loot, you accumulate lots of stuff over 3 months!

Chilling on the ride home.

"We're home, get me out of this thing!"

First family photo at home.

Daddy and me just hanging out.

Mom's been waiting to put this flower on my head for months!

Our BEAUTIFUL little Kaelyn!

100 Days and Counting

2009-09-21T22:04:00.000-07:00

Yesterday was Kaelyn's 100th day in the hospital. It's pretty crazy to think that it has really been that long. Kaelyn is still doing really well and progressing everyday. We are hopeful to get her home very soon, but we don't want to say too much cause we don't want to jinx ourselves. She is taking almost all of her food through a bottle, is on a whiff of oxygen, and slowly but steadily gaining weight. We would just like her to be gaining weight quicker.

Stay tuned for the good stuff.......we hope.

She wasn't quite sure how she felt about the stretch pants until...

she saw how stinkin cute she was in them

Kaelyn praying that she will be home soon

9-15-09

2009-09-15T08:48:00.000-07:00

Kaelyn has had an AWESOME week. All the IVs are out, her oxygen needs are still down, she's in a crib, she got her first REAL bath, she's back on full feeds and has started drinking part of them from a bottle! Today she drank 3 FULL BOTTLES! That is huge for a little girl that hasn't had anything to do with drinking a bottle in the first 3 months of her life. She is such a champ. They compare drinking an ounce of milk for these little ones to us trying to down a gallon of milk.

And last but not least...we have finally heard the "H" word, Home! Its the first time in our venture here in the NICU that it's been thrown out there! At this point the only thing that is keeping her at the hospital is eating. Due to her heart and also down syndrome, eating from a bottle is A LOT of work. (We'll show you some proof) We talked to the doctor yesterday about doing a G-Tube ( tube that they put through her tummy) so we can take her home sooner. That way we could continue working with her on bottle feeding, but still be able to supplement her with what she doesn't finish, because our biggest goal is to get her to about 12 pounds so she can have her heart surgery. Wayne and I really liked that idea, any thing to get our little girl home sooner than later. She would most likely need to come home on oxygen too, so they have changed her over to the type of oxygen that she would come home on and she's doing well with that.

We still don't know when the day will come that we can bring her home, but at least the ball is rolling in that direction. Now for your viewing pleasure, pictures and video clips of Kaelyn doing all her new tricks!

Make sure to get behind my ears

Ahh, now this is nice, I've been waiting for this moment my whole life

Come on in, the waters great!

Look at my tidy bed, you should have seen it a week ago.

Boy this eating stuff is a lot harder than it looks

Sleeping in my Big Girl Bed

Watch closely, I tried to slip right out of mom's hands

This is the second time mom tried to feed me, after about a minute of sucking I was out cold

9-10-09

2009-09-10T11:07:00.000-07:00

This last weekend was pretty scary for us. Saturday night when we left the hospital Kaelyn was looking pretty good and they were hoping to extubate (take her off the ventilator) Sunday and put her on a high flow nasal cannula. Then Sunday morning we got a call from the Nurse Practitioner and the Doctor (Its never good when the doctor calls you). They were concerned because her blood gases were worse than before and she was really swollen, which meant she must have a worse infection. Also the PIC line in her arm had a pretty bad reaction and so they had to pull it out. They were also quite concerned because she was not coming out of sedation AT ALL. They had decreased the amount of sedative she was getting and it wasn't making a difference. So yea Sunday was pretty scary. Just when we thought things were looking up they seemed to be taking a turn for the worse. So they got her going on some more antibiotics, ran more tests to see if she did have an infection and we just waited.

Thank goodness our little girl came through, Monday was a completely different day. She looked amazing! Her swelling had gone way down and she was OFF the ventilator. Her oxygen requirements have continued to stay much lower since the balloon was done, which we are so grateful for. The best part was we finally got to hold her, it had been over a week. They also started her back on feeds, while all this was going on she was just getting nutrition through an IV. She started at 6 ml/3 hrs, when she left the U she was up to 42 ml/3 hrs. They start pretty low and then work up to where she was to make sure she can tolerate it. Nothing has shown up on the tests so they don't know why she was so sick. We're learning that there are A LOT of unknowns in the medical world, even with how far we've come in the last decade. Today is her last day on antibiotics, thank goodness - poor little thing has gone through 14 IV's, a Pic line and an arterial line in 9 days! She is such a trooper though, way tougher than her Mom and Dad. We got flu shots the other day and we could barely handle that.

The other day I read an article given by one of the leaders in our church. He said something that hit both Wayne and I strongly. There were times this past week that I just plead with God to fix things, because it seemed as though we were going to lose our daughter if He didn't do something right then and there. I just kept praying, "God I know you're here, I just need to see you" over and over again. This quote has helped me as I look back on what we went through and has brought us both comfort.

"Whenever these moments of our extremity come, we must not succumb to the fear that God has abandoned us or that He does not hear our prayers. He DOES hear us. He DOES see us. He DOES love us. When we are in dire circumstances and want to cry, "Where art Thou?" it is imperative that we remember He is right there with us -- where He has always been! We must continue to believe, continue to have faith, continue to pray and plead with heaven, even if we feel for a time our prayers are not heard and that God has somehow gone away. He IS there. Our prayers ARE heard. And when we weep He and the angels of heaven weep with us. - Jeffrry R. Holland"

As I wept for my little girl, it was such a blessing to know God and the angels of Heaven wept we me...I didn't feel so alone.

Through all this Kaelyn has still managed to put one weight, she's now 5 lb 10 oz! (And thats after the 300 gms she lost due to all the swelling)

Now for pictures of our little sweety and her simple nasal cannula and feeding tube!

Looking up

2009-09-05T11:12:00.000-07:00

The balloon is working. Her oxygen needs went as low as 27% yesterday! We haven't seen numbers like that in well over a month. She is almost completely off the Nitric and they are weaning her off the Ventilator. The cardiologists are hoping this will do the trick and buy her enough time to get to the size she needs to be to get the full repair on her heart. Thanks for all your prayers, once again they worked :)

In the darkest moments of our lives, it can be almost impossible to see the light. Just believe it's there, and in time it will illuminate your whole soul. - Jeana

Oh yea...Wayne totally designed/created the background on Kaelyn's blog. He's pretty amazing, all the way around.

The Results Are In

2009-09-03T18:12:00.000-07:00

It looks like things might be on the up for Kaelyn now. The doctor that worked on Kaelyn said he was able to balloon open the pulmonary artery enough that he thinks it will make a difference and hopefully buy her some time. Depending on how things go, she may still need the surgery we were planning on for today. We really have no idea when or if that will happen for sure though. The doc. also said that Kaelyn did really well during the procedure and that she will need about a day to fully recover. We are so happy that things went well as we needed some good news to start coming in. Hopefully the snowball effect will kick in and more and more good news will keep coming. Thank you so much to everybody for pitching in on the praying. There is no doubt in our minds that it helped Kaelyn, and us, get over this step.

No Surgey But Yes on the Cath Lab

2009-09-03T15:49:00.000-07:00

It is now 4:45 and Kaelyn was just admitted to the
Cath lab. They are going to try and balloon open her pulmonary artery. If that doesn't work they will then try to put a stint in her PDA. More updates to come in a few hours.

No Surgery Today (9-3-09)

2009-09-03T10:32:00.000-07:00

First, and foremost, thank you everybody for your prayers and concern. It appears that there won't be a surgery today. They found out this morning that Kaelyn has an infection. She has been on antibiotics since yesterday morning so we are glad that they got on it so quickly. We really don't know when they will reschedule the operation. She may go to the Cath lab today, though. If she does, they said that they will try to open up her pulmonary artery a little bit. So that's where we are for now. Thanks again everybody.

9-2-09

2009-09-02T23:33:00.000-07:00

We got transferred to PCMC fairly smoothly yesterday. Kaelyn apparently wasn't too happy about the move. About an hour before they transferred her, her oxygen saturation dropped really low. Her little heart has been working so hard the past few weeks that it just needed a break. Kudos to her for fighting so hard for so long. After what seemed like forever the transport team showed up and then they put Kaelyn on a ventilator and got her on her way. She needed to be on it for the lab anyways, but still, we wish it didn't have to happen the way that it did. It was pretty scary but in the end things are ok.

Well.....no Cath lab today. The cardiology team did another echo on her this morning and decided that they could see what they needed and that the Cath lab wasn't necessay. So, what did they see you might be asking. Well, they saw that her PDA is totally closed and that is most likely what has been causing her increased oxygen needs. What does that mean? It means that she will be having surgery tomorrow afternoon. Some of her blood labs aren't exactly where they want them and they are worried that she might have an infection. If she does, surgery will be on hold until she gets rid of it. If she doesn't, tomorrow is the day. We should know late tonight or early tomorrow morning.

The surgery won't be quite what we expected though. It will be a shunt connecting a vessel from the aorta to the pulmonary artery. This should increase the amount of oxygenated blood that gets sent out to the body. The part that isn't what we expected is that they will open up her chest instead of going through her armpit. That was really scary to hear but we heard it from the actual surgeon and the more we talked with him the better we felt about the procedure. Thank goodness there are doctors that can fix these types of problems. We'll keep you updated.

We'll leave you with some pics tonight as a pre-game celebration. Tomorrow the University of Utah has their first game of the season. We were going to dress her up in her U attire tomorrow but probably won't have time to, so we did the best we can. Enjoy!

Did you see her red bow?

9-1-09

2009-09-01T06:47:00.000-07:00

Well, back to Primary Children's Hospital we go. Kaelyn will be transferred back to PCMC today so that she can have surgery tomorrow. The cardiology department finally decided that it was time to get her in the Cath Lab in order to get a better look at her heart. They will run a catheter up into her heart from the groin and get some measurements and stuff. Then, if they think that she needs a shunt, to increase bloodflow to her lungs, they will do that at the same time. We have been told that it is a very routine procedure but it's still a bit scary.

We really enjoyed being back at the U hospital and are going to miss it. Kaelyn made some good progress while there. She got up to about 5 1/2 pounds, started wearing clothes, and got out of the isolet and into an open warmer. The only bummer is that her oxygen needs never got to where the doctor's wanted them, no matter what they tried. And believe me, they tried a lot of different stuff. So, in a way, it's a relief that finally we will get a good answer about what is going on with her oxygen needs.

Jeana and I were talking last night about how hard it is to know that our little girl has to lay in a bed all day and only gets out when we are there holding her. On Saturday, I was there alone for 4 or 5 hrs and got to hold Kaelyn the entire time. The nurse just kept saying how cool it was that Kaelyn was doing so much better while I held her. Honestly, of all the things I've done in my life, that time with her has to be one of the best. Even though I was sitting in a hard plastic chair the entire time, I had so much fun looking at her and holding her. I guess what I'm trying to say for those of you that have kids is, don't take for granted the fact that you can hold them any time you want. Show them your love and squeeze them as often as you can, without embarrassing them of course.

Please pray for Kaelyn. We know it helps.