Monday, April 30, 2012

Word Up

Carter's officially speaking! He finally picked up on a new sign, too! He'll sign and say "please" (pheeece). He also says "cracker" (kah-kuh) and "juice" (joooce). He's still signing "more", and is starting to do "more, please" together. Plus, a duck says "quack quack" (kack, kack); a chicken says "bok bok"; and an elephant says "phhhhhhhuuuuuh" (I'm not sure how you spell this sound... but this is definitely close, and by far his favorite!) He started all of this wonderfulness in the past week, and we are eating it up! To top it off, kid is chunking up goooood!

Eating/destroying a biscuit

Independent - he's getting into this "I can feed myself" stage


Please pray for Carter, as his ortho surgery will take place Wednesday. It'll be a long procedure, and we'll make sure to update as soon as he's out and doing well. Please pray that this doesn't set us back with our weight gain, and that he will have minimal pain, and great pain management. Please pray for Josh and I as we learn to lug around this child with two casts and keep him happy when he can't do the things he wants to do :) He's going to do great, because he's a trooper, and because we have amazing prayer warriors in our life!

Sunday, April 22, 2012

Meemer's Home!

Thursday afternoon I picked mom up from the airport in Atlanta. She's been in Europe for the past two weeks visiting my aunt who lives in Germany. On our way home, Meemer Billie called mom and asked "What did Carter do when he saw you?!" He hadn't seen her yet, since Josh kept him instead of making the trip, so we decided it was a good idea to catch it on camera. Here's the beautiful moment after two weeks without Meemer.

"Why's the camera out?"

"Oooh... I get it now.... Hey Meemer!!"

and then he just wanted her to play

Wednesday, April 18, 2012


I was looking through my OEIS group postings and searching for a picture to send another mom to show her on Carter where his colostomy/vesicostomy are placed... and I came across pictures from the NICU. I'm not sure if I shared many of these... he was so fragile and tiny looking! Seeing them made me want to go get him out of his crib and snuggle with him :) We've come a LONG way. To God be the glory!!

WARNING: some of these pics show blood/scars/etc.

Still in the Regional NICU at UAB. This was the day he was born. Pre-surgeries.

Post-op. Omphalacele closure/colostomy placement. I hated that vent, even if it was on room-air. Notice his colostomy output is still just blood.

Still on the vent... so this was maybe day 3 or 4? He wasn't on it very long. Finally had some meconium output in his bag. His belly scar made me so nervous. It was so angry and jagged. It's still not a pretty scar... but it's a healed wound, so I'm thankful!

Vent-free! Way to be! Just suckin' his paci. Check out that poop - and I think his mucous fistula was discharging at this time - freaked us out!!

Handsome little devil :)


Quick update - Josh took Carter to the pediatrician's office yesterday to have him weighed. He stayed pretty much the same since his weigh-in two weeks ago with nephrology. Mary Jane said she wasn't super concerned yet, and just to work on building him up to bigger amounts of fattier foods. We started adding the oil in... so far no tummy issues like we had with the chocolate syrup. He still just eats sucky at daycare in the middle of the day. We have no idea why. Maybe distraction? Who knows. ANYWAY... I caught some cute pictures of him this afternoon...

He was a little irritated, and wanted the camera - but look at those baby blues!

"How did I get down here?"

"Mom! Did you see that?!"

I took this a couple weeks ago during bath time. I thought some of you may be curious what a hole-less hiney looks like. That line is not a crack... it's his scar from his tethered cord release. Before that his lower back/butt had no indentions.

Monday, April 2, 2012

Junk Food Junkie

Today we travelled North to see our favorite nurse practitioner - Mary Jane Gillum - for a renal report card! We've been shoveling food in Carter all weekend to make up for his weight loss from being sick, knowing that he needed a decent weigh-in for this appointment. He's been eating like a champion, but it still wasn't enough to get him back up to our 21 pound high. Last week at our ortho appointment he weighed 19 lbs 3 oz (fully clothed). Today, completely nakey he weighed in at 20 lbs 3 oz. and is only in the 4th percentile for weight and height (he's 28 in tall today!) Honestly, we're just happy to still be on the charts! However, they understand that with his bronchiolitis and the weird UTI-like symptoms a couple weeks ago, it's pretty impressive that he gained over a pound in a week! As long as we can keep the boy well he may chunk up again. We were given orders to make him a junk food junkie. Anything he'll eat that's super high in saturated fats - keep it coming! Our nutritionist, Brooke, paid a visit to give us some tips and tricks. We're going to try adding 1 mL of oil per oz to his bottles, and can also add flavored syrups - hello, chocolate milk!! She said to keep carb loading him since he likes it, and add butter or oils to any veggies we may get him to eat. The higher the calories and fat content, the better! The boy is addicted to the Gerber cheese puffs, so Mary Jane suggested a Lays natural white cheddar cheese puffs that her girls like. Josh is currently a healthy eating nut, so it made him cringe. Dr. Feig encouraged us that kid's nutritional needs are very different from ours - while saturated fats make us have a gut, they provide nutrition for Carter's brain to develop! So, after we got back in town, we made a stop at Winn-Dixie for these fattening treats!

Unfortunately, they didn't have the cheese puffs, so I'll have to check Publix for those later this week. He ate spaghetti o's tonight, and loved them! Also a big fan of the mini Nilla wafers - he gets that from his Meemer! Overall, Carter's kidney health continues to be stable. His iron was down a little, so we've got to start giving him his supplement more faithfully. His potassium is still holding steady, so we're staying on the low elemental formula for now. We're so thankul that his kidney is healthy, and that all we have to worry about is weight gain. It seems like alot at times, but it could be much more stressful if we were having to deal with poor function of an organ that has no back-up plan! Please send prayers our way for C to be HUNGRY! We'll be weighing in with our pediatrician in a couple of weeks just to see if he's put anything on... if not, we've been warned that a G-tube may be in our future. As long as they're satisfied with his weight, next up will be our ortho surgery on May 2nd, then another renal check the first part of June! We're so glad that our visits are becoming more sparse, although we love everyone up there! Here are some pictures from today - Josh loves Carter in overalls, so that's what he wore today to visit with his doctor and nurse friends :)

Where'd it go?!

Clinging to dad for dear life before labs

Playing after a busy day