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