Post-op Update

First of all, thank you ALL for your prayers! Carter has done so much better than we anticipated with this surgery. For those of you who weren't following on facebook, I'll start from the beginning.

We had to get up super early to be at Children's by 0530 Wednesday. Carter was scheduled to be first case at 0730.

One Day Surgery waiting area - starting to get hungry!

At about 0630, they took us to the back to change him into a gown and go over all of his medical history. Dr. Conklin came by the get another look at his little feet before he got back in the OR with him. He also went over with us again everything he planned on accomplishing in the surgery.

I'm so hungry...

...and kinda sleepy.

Anesthesia came by the check in and make sure we didn't have any questions - one of the nurses was pretty sure she'd taken care of him before :) We like to hear that before a surgery. Right around 0730 his OR nurse came to walk us to the OR, and he went to her just fine (he must've thought she was taking him to food). It made it much easier on us that he walked away talking and pointing, and not crying.

They got him to sleep with no complications, and the surgery started at 0820. Our OR nurse, Katie, was wonderful about checking in with us every hour or so. By 1100 we got a visit from the resident working with Dr Conklin, Dr Moore, and he let us know that they accomplished everything they'd planned, and that he was doing well in recovery waking up. It took him a while to wake up all the way, and they gave him some apple juice before we were taken back to PACU to see him (around 1230). Shortly after they took us back, his room was ready, so we headed up to 4West. We had great nurses, and he settled in quickly. Dr Conklin came by late to check on him and speak to us himself. Carter LOVES his doctors. As soon as he walked in the room he was smiling and watching what he was doing. Later in the evening he was a little more alert and let us play with him for a few minutes before he was ready to rest. He found his casts, finally, and was babbling about them and banging on them. He likes that stuff makes noise when he hits them.

Chillin' with his froggy friend

We had prescriptions for lortab and morphine for pain, but never had to mess with the morphine, thankfully. The lortab was strong enough to relax him and keep him comfortable but not cause him to be too drowsy or nauseous. The first night was rough... he could not get comfortable to sleep. We were trying to keep his feet elevated to reduce swelling, but he's a belly sleeper, so it wasn't happening. He was mad at his bracelets, and mad at his IV. I spent most of the night up and down with him until Josh took over at 5am-ish. Dr Conklin and Dr Moore came by early to let us know his feet looked great with minimal swelling, and told us what to watch for at home. After that they started getting our stuff together for discharge! This was by far the easiest hospital stay we've ever had. We were on the road by 0900!

Happy to be in the car - finally some good sleep!

He was much more comfortable when we got home Thursday afternoon. We were able to do his lortab less often... from every 4 hours to every 6 or more. It's hard to tell if he's actually in pain, or just irritated by the casts. We rode into town that night to get dinner, and to get him out of the house. He likes to go like his momma. Thursday night went better than expected - he slept in his bed and only woke up once at midnight, so I gave him medicine and changed his diaper, and he went right back to sleep until 7am.

Yesterday he was feeling MUCH better. He ate some oatmeal, fruit, and crackers. In the past we've had a rough time starting back on food after surgeries - but this has been a breeze. He felt like playing yesterday, so we threw the ball and played drums. He's so cute laying in the floor watching Disney Junior with his feet propped up on his monkey pillow-pet.

We went grocery shopping yesterday to get him out, stopped by Meemer's office, and later even made it to Greyson's ball game so he could see Papa and Grey.

He didn't sleep quite as well last night - he cried out a few times, but I only got him up for meds and a diaper change at 5 this morning. I put him back down and he slept until 9! He's been such a little trooper. So far today he's done really well - Josh took him running and now he's down for a nap. He figured out he can crawl with the casts... now he's unstoppable! He still gets frustrated that he can't go fast. He's figured out how to get from sitting to his belly, but hasn't figured out sitting back up yet. He'll get there soon, I have no doubt. Today's agenda includes a trip to Target, and maybe a visit to Meemer and Papa's.

Please pray that he'll continue to do well, and that he'll figure out how to maneuver with those giant casts. Pray for me, as I'll have him solo tomorrow while Josh goes to work for his last shift before he has FOUR shifts off (I'm jealous). Keep us in mind Thursday, as we go up again for cast change in clinic. I think he's going to be a booger to get those suckers off and back on while he's awake - we'll see! Enjoy this video of his first trip down the hallway post-op, and have a wonderful weekend!

Surgery #5

Tomorrow we'll be heading up to Children's bright and early! Thankfully, Carter is first case, so his surgery time is 0730. We have to be in One Day Surgery by 0530. Anesthesia called tonight and we went over his history, so we are set! C's stuff is packed, he had his last bottle until after surgery, and he's off to dream-land! I'm still working on packing, and stressing just a little bit - it's my job as a mother :) We'll be staying overnight to make sure he doesn't have any severe swelling issues, and then we should come home Thursday with two new friends - casts! I'll be updating facebook, but may be unable to update the blog as easily until we get home. Pray for peace for Josh and I, and that Carter can make it through the morning without being too hungry. Also, pray that his surgery will remain on schedule... that we don't get bumped due to an emergency. Pray for wisdom for Dr Conklin and his staff, as they've never done this tendon transfer on a child as young as Carter. Pray for C's pain to be minimal, and for us to be patient as we care for him after surgery. Pray for overall success of this surgery, and that it will allow Carter the ability to walk and continue to develop and explore the world around him.

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

Sword-fighting

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!

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

reflection

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 :)

weigh-in

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.

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