Home and Happy

Davis came home yesterday evening and seems to be on the upswing. His fever is gone, his fontanelle is back to normal, and he can tolerate some formula. He's lost weight and still isn't eating nearly enough, but we feel like he's on the mend and going to be a-okay. He's back to his smiley-little self... after these last few days, it's nice to see.

Visiting the healing hotel

Just a quick update... it's about 1 am on Tuesday night, and we're in the hospital. Davis wasn't feeling well today - vomiting, no appetite, coughing, fever - so we took him to the doctor around 4ish. We called our pediatrician later because he couldn't eat at all, and because his fontanelle (the soft spot on his head) was swollen and hard. He's on tamiflu and tylenol. We think this is just a precaution and will be nothing, but given his history we don't want to take any chances. Will update as soon as we know something...

Rice cereal, sitting up, & exersaucer!

First Day at the Pool

Busy Weekend!

Davis with cousin Katie and Uncle John

Family Photo outside Duke

Davis in the ICN Waiting Room...

Jes with Katie and Carter at the PRF Reunion

4 Miracle Babies and 1 Amazing Couple

This has been one busy weekend! We drove to Raleigh for the Parker Reese Foundation reunion. We are so glad we went. It was amazing to see all the little miracle babies hanging out together, and even better to see the look on Jes' face when they were all in her lap. Parker's legacy is so evident in the lives of Davis, Bodee, Katie, Carter, and so many others.

Then, we made a stop by the Duke ICN to say a quick hello to Davis' nurses. We missed the Duke reunion so we knew we were in big trouble unless we brought Davis by for a visit. He got to say hi to Carolyn, Shanda, Lindsay, Heather, April, and a few others... we didn't get to see everybody, but we'll be back soon.

Lastly, we stopped by to stay the night with the Trefneys. Little Elizabeth and Katie (his cousins) were so excited to see him. They were so sweet, holding Davis and petting his head.

Now we are home sweet home and miss everyone already... but are so exhausted, we will surely sleep well tonight (as long as Davis does, that is)...

We Love Daddy

Happy first Father's day, Michael. You have been an amazing father since the day I told you we were going to be parents. You are the heart and soul of our family and we love you so much!

Tummy time isn't so bad...

Davis is out and about....

Aside from the many trips to both grandmother's houses we have only recently decided to take Davis out into the big world! His debut was the White Squirrel Festival here in Brevard, NC on Memorial day weekend. It was a great festival and Davis was out for about an hour and a half. Brevard is such a small town that Davis ran into his pediatrician on the street. Dr. Wells was really glad to see Davis tolerating the outing so well. He did not cry once around all of the loud music and all of the people. He seemed to enjoy it. It was a real treat to look out from the stage and see my son and beautiful wife there. It was his first show! 

We are currently trying to cram a follow-up visit down to Duke into our schedules. From here, it is easily a five hour drive! Hopefully we can get "clinic" on one day and follow up with the surgery team the next day. Our last clinic visit took well over seven hours and we drove home that night..... This time we will space it out over several days.

Davis is eating remarkably well. He will eat four ounces in one sitting over fifteen minutes! I remember starting with 10cc's and that was a task. He is still on Omeprazole (Prilosec) and it is hard to find a pharmacy here that will compound the medication so Davis can drink it. We found a pharmacy an hour from home that can do it. He recently had to have the dosage adjusted for weight gain. Dr. Wells said that reflux could become worse for Davis between 4-6 months of age, which is now. He rarely pukes, but we can tell he does reflux. It is painful to him. Hopefully the meds keep it under control.

Sorry for being blog slackers!!! We are working on it. Hopefully these pics will make up for it.

-Mike

P.S. Davis is learning to speak his own language, knows how to play Mommy and Daddy by fake crying, puts everything in his mouth, and is generally being cute all of the time.

Big Smiles

Because of Parker...

Three years ago today, Parker Reese Singletary was born. She lived only one day, but her life has made an incredible impact on our family. We firmly believe that Parker saved our son's life. 

Because of Parker, Jes (Parker's mother) felt inspired to form the Parker-Reese Foundation. We met Jes before Davis was born, and she convinced us to at least tour Duke, just to see what they had to offer. On Jes' recommendation we did just that, and fell in love with the team there immediately. We knew they were the doctors who could give Davis the best chance at life. 

If it hadn't been for Jes, we would never have looked into Duke. 

If it hadn't been for Duke, Davis would not be alive today. 

If it hadn't been for Parker, none of this would have happened. 

Thank you, Parker. We never met you but we love you. 

This kid is awesome!

Davis continues to make amazing improvements at home. Pushing for an early discharge was absolutely the right thing for us to do. When we first took Davis home, we would sometimes struggle to get him to take even 5 cc's from a bottle. Yesterday, in about 15 minutes, he ate 3.5 ounces (that's over 100 ml's) and was hungry for more!!! 

He's growing and progressing so fast. Davis is our first baby so I am completely astounded at how quickly he is changing. He is talking to us a lot more - cute baby babble- and smiling like crazy. He has learned how to hold a toy for a longer period of time. Everything he grasps now goes straight into his mouth. He needs a lot of stimulation, and loves to hang out on the porch and listen to the birds chirp. He is just the coolest kid ever. 

Parker Reese Foundation Needs You!

I think many of you know of the Parker Reese Foundation. They provide a beautiful, peaceful home for CDH families traveling to Duke for medical care, and they ask absolutely nothing in return. They are amazing. 

The financial burden of CDH is something people don't often discuss, but it is very real. Our medical bills are... well, let's not even go there! There is so much stress in fighting the CDH battle. As if knowing your child may not make it isn't enough, families often have to move far from their homes, families, etc... in our case, we moved 4 hours away to get the best possible care for Davis. It was tough. Lucky for us, we never had to think about where we would stay or how we would pay for it. Parker Reese Foundation took care of everything for us. 

The Parker Reese house is on a peaceful old dairy farm about 15 minutes from the hospital. It is so serene and quiet there. They allowed our families to stay there, too, which made a huge difference for us! It became our second home. I cannot say enough good things about Parker Reese Foundation. 

Now, they need your help. For just $16, you can sponsor a family staying at Parker Reese House for one night, and you get a t-shirt! If you can give more please do. Email info@theparkerreesefoundation.com to help babies like Davis and their parents. Please help! I don't know what we would have done without these guys. Thanks everybody :)

"freakin' awesome"

Just a quick update on Davis' cardiology visit yesterday. Dr. McGovern said (and I quote) that Davis was "freakin' awesome." He was so impressed with his progress and not concerned about anything at all. We'll still go back in a couple of months to be extra careful, but we are so happy that our little man got such a fantastic report card! Go Davis! 

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. 

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. 

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. 

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.

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. 

"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.