Apr 30, 2009

Water Baby




Davis loves baths, and usually he takes one in his whale bath tub that Kristen & Noland got him. If we have a lot of time, we'll float him around in our big kitchen sink instead. He loves the water and is so sweet kicking and splashing around. 

Tomorrow is Davis' cardiology appointment. I think everything will be just fine but, given everything he's been through, I will admit I'm a little nervous. Keep your fingers crossed that he passes all the tests with flying colors. 

I'm writing an article about our experience with CDH. It's my little way of hopefully raising awareness about this condition that robs so many families of their children. I'll post it here when I'm finished for feedback. 

Apr 21, 2009

sad day

Today I learned that Baby Kaden has died. Hearing that another baby is gone, I just feel such despair. Life is so fragile, so precious. We are amazingly grateful that Davis has done so well. But it seems like almost all the babies that have been born since have not been as fortunate. Baby Joseph, Maxton, Addison, Kaden... all of these sweet little souls are gone, and their parents are left with broken hearts and empty cradles. It doesn't seem like the survival rate is even 50%; it seems so much less. I hope we live to see the mystery of CDH solved. Even one more family having to go through this nightmare is too many. We will be holding Davis extra close tonight. 

Apr 19, 2009

Quick Davis Update


Picking Azaleas with Daddy


Davis Loves Being Outside



Davis Meets Jake the Dog... he wasn't impressed


Just a quick post... Davis has had a little bit of a runny nose and a tiny cough. We're trying not to freak out too much and just watching it very carefully. For most kids, a little cold would be nothing. For CDH babies, it can be a very big deal. Hopefully Davis will kick it in no time. If it gets any worse we'll give Dr. Wells a call. 

Little Jaime Trost decided he wanted to be born early! His blog is here if you want to stop in and show them some support. Baby Kaden continues to hold his own... we pray for him and Baby Jaime every day. Both Kaden and Jaime's mothers checked in with Davis the whole time he was in the hospital. They are great moms and we know their little ones will be just fine. 

Apr 13, 2009

Little darlin'



Looking a little scared but you can see his scar healing...


With Uncle Jordan...


Thinking about Smiling for Daddy


Davis continues to be the joy of our lives. He still eats 100% from a bottle (take that NG tube!) and still needs prilosec for reflux. We discontinued the nebulizer because it caused a nasty case of thrush that he's still recovering from. The thrush made him averse to eating, so it seemed like the bad outweighed the good with the nebulizer. He's been smiling a lot more and has started to coo a little. I think he gets cuter every day... 

We have an appointment with the pediatric cardiologist next week to check on a few minor heart issues. Because his heart was compressed for so long, one side is somewhat stronger than the other, which I guess could be a problem if it doesn't improve over time. We hope and expect that it will.

Please pray for the Kuehl family. Their son Kaden is a CDH baby fighting for his life as I type this. I do have some happy news! I meant to post this a while ago, but Davis' NICU roommate Nicholas is at home and doing well with his parents. He went home with a lot of equipment and monitors, but we bet that, like Davis, he'll make rapid progress now that he's home sweet home.

Apr 6, 2009

Swing = Love

Davis had a baby shower on Saturday. It was so nice- I can't even describe the amazing amount of baby gear and sweet little clothes Davis ended up with. I have to post a picture of the cake, which was so incredibly cool! He got lots of great stuff, but there are a couple things in particular that he absolutely LOVED- especially his new swing. I never imagined a baby could like anything so much. 

The swing has been particularly convenient in that Davis has been miserable with a nasty case of thrush these last few days. We think the thrush came from using the nebulizer for breathing treatments. Dr. Wells prescribed some new medications for the thrush, so we hope it clears up in the next couple of days. Last night, he cried more than I've ever heard him cry... thrush stinks. 

Apr 2, 2009

"Perfect"

Crashed out on Daddy...


Being a Rock Star is so Tiring...




This is my big sister Catherine, Davis' aunt. She came to visit earlier this week and, while she could only stay a little while, we were so glad to see her. She is beyond amazing and we love her so much. I wish Davis could grow up closer to her so he could just absorb all the love that she just radiates. We miss her already :)

Davis had his first follow up appointment at Duke this week. We drove down after work on Monday and stayed at Parker's House for his Tuesday appointment, which lasted for SEVEN HOURS. That's right, SEVEN HOURS! It was nice to see everyone but we were pretty frazzled by the end of the day, and then we had to drive the five hours home. We had hoped to be able to stop by and see our nurses, but Davis was so hungry and upset we had to wait until next time. We hope to plan several days for these travels in the future as it is just a lot for little Davis to deal with. It was so strange to go back to the hospital and walk through the NICU doors, except this time we had Davis with us. 

Besides a little anemia and some mildly decreased pulmonary function, things are looking "perfect" according to Dr. Benjamin. When she said perfect, I had to ask her to repeat it... it just sounded so nice! We've started Davis on a nebulizer w/ albuterol and pulmocort to try and help those airways expand a bit, and he's on another iron supplement for the anemia. We are now feeding him at will rather than a strict 3 hour schedule schedule... so far, so good.