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. 

Amazing Day

This morning, I woke up and made some coffee. Michael was helping a friend with some carpentry stuff, about an hour away from home. I was on the couch when I noticed the coffee maker was in the process of exploding all over the counter. I thought to myself today is going to be one of those days... 

I was cleaning up the coffee mess when I heard Davis screaming in his crib. It was a cry I hadn't heard before, which scared me. I ran into the room and found him holding his NG tube- the part that's supposed to be in his stomach- above his head, and he was just wailing. He'd pulled it out on his own, and I freaked a little. 

Davis was set to eat in about five minutes, and sometimes we need to put as much as half his feed through the tube. I didn't want to put the tube back in without Michael's help, so I decided to just try the bottle and see what would happen. Well, he took THE WHOLE THING, and he proceeded to do that (without the tube) the next FIVE FEEDS!!! If you've ever dealt with the whole CDH/feeding thing, you will understand when I say that next to my wedding day and the day Davis was born, this was quite possibly one of the happiest day of my life. Of course, we may have to put the tube back in if he doesn't take a full feed, but just to know that he can do this is wonderful. It makes us feel that the discussion about another surgery for a g-tube is that much further away. 

The one drawback to not having the NG tube is administering medications. We can't just "tube it", we have to give it to him by mouth, which he isn't too fond of. Anyone have any suggestions for a good way to do that? 

Mommy Paparazzi

Davis' cousin

Everyone whisper some prayers for Brycen. Brycen is Davis' cousin and he just had his 4th birthday. He was diagnosed at about three months old with a rare brain disorder called lissencephaly. He is currently over at Mission struggling with some respiratory issues. You can visit his blog by clicking here. He and his mommy would love to hear from you.

Davis is doing well. He is starting to smile some, but only at times when we don't have the camera and it only lasts for a sec. He rarely pukes, and usually does pretty good with feeding. He can eat about 80% of his total feed consistently and sometimes he finishes the whole feed! We love our little buddy. We will repost with many new pics soon.

Mike.

P.S. We had to replace the NG tube last night. It is not a pleasant thing. Poor thing was crying SO HARD.

Eating is Hard Work!

Davis is doing so much better with the bottle. He can usually get around 50-65 cc's down before he poops out. His feeds have been bumped up to 80 cc's every 3 hours, so we still have some use for the feeding pump. We hope that as his stomach grows we'll use the pump less and less, and eventually be able to get rid of the feeding tube entirely. He's dangerously close to being able to pull it out on his own. His pediatrician reminded us that eating is the hardest work Davis has to do, something akin to running a marathon for us. If only eating were that way for me. I'd be an Olympian :)

I am constantly thinking of how lucky we are to have Davis. Reading his medical history, which they gave us when we were discharged, I am reminded of the enormous debt of gratitude we owe everyone at Duke. Their care, as well as Davis' amazing will to live, was the deciding factor in his survival. It could so easily have gone a different direction. 

My heart breaks as I report that after just under 3 weeks on this earth, Baby Maxton has chosen wings over feet. Directly after I learned of Maxton's passing, I went in the bedroom to be with Davis and just give thanks for his life. I had such a heavy sadness in my heart for Maxton and his amazing mother, Ashley. I reached down to change him and he opened his eyes really wide, lifted his arm straight up in the sky, and wiggled his little fingers. It sounds silly, but I thought maybe he was waving to Maxton. Please keep his family in your thoughts. 

Davis is doing extremely well here at home. He likes to look around at everything in and out of the house. He pretty much stays at home with one of us unless he has a doctor's visit. We did take a walk around the college for Carolyn's birthday but he was out for the whole thing. He loves his crib and his mobile which is exactly like the one Nurse Shanda let him use while he was in the hospital. Aunt Katie Grace brought it over today.

His feeding is really going a lot better. He has successfully taken his whole feed several times for us, but for most of them, he kind of poops out before he finishes. It is exhausting him to try to suck swallow and breathe all at the same time with his undersized left lung but he is doing better every time. On the last Doctor visit Davis had gained an ounce a day weighing in at 7lbs 14 ozs. We are so proud of our little turtle....

By the way, Davis misses his nurses.