We got the boot

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

(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

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!

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

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"

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!

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