Tuesday, December 27, 2011

December 27, 2011

Merry Christmas! The last few weeks have been filled with holiday fun. We kicked off the holiday season the weekend of December 10 by making cookies with Grandma Distad.

Charlotte's favorite part was rubbing the flour around and brushing a little (ok, a lot) onto the floor.

Merry Christmas! We celebrated early with Charlotte and she is now a culinary queen. Here she is posing next to her kitchen with her chef hat.

Charlotte proceeded to get sick the week before Christmas. She was coughing, vomiting, and sleeping in excess. I stayed home with her on Monday, on Tuesday she went to bed at 5 p.m., and on Wednesday she fell asleep at daycare while all the kids played loudly (they called us to pick her up). Luckily she slept until 2 p.m. on Wednesday and woke up with enough energy to travel to Eau Claire for the traditional dinner with Santa (and, most importantly, Grandma and Grandpa Russell).

The holiday excitement escalated when she got to see the big guy. This was as close as she'd get. At least she thanked Santa for the cookie!

Posing in front of the Fanny Hill Christmas Tree. Everyone is looking at the camera and even smiling!

Charlotte got to try her hand at cookie cutting and decorating again with Grandma Russell. A messy, but fun, venture.

Christmas Eve! Grandpa Russell hand-crafted this barn for Charlotte. The trip to Michaels: $5.26, Popsicle sticks: $4.99, hot glue gun: $8.99, this picture: priceless (please note: prices are completely made up).

Charlotte now poses for pictures and then runs to see herself on the camera screen. She rarely poses long enough for the picture to be taken, however, and you can see here she's just starting to run toward me.

Christmas morning came awfully early, so that Charlotte could open her gifts from Santa before we headed off to Grandma and Grandpa Distad's. Love the bed head! Here she is with the magnifying glass she received. She thought it was hilarious.

A tractor for Christmas! She may live in the big city, but at least she'll know what a tractor looks like.

And no Distad family Christmas would be complete without a child playing piano. We enjoyed being serenaded by Charlotte's playing and singing this year.

Here, Charlotte is posing with her new Bitty Baby. There is no need for us to by extra outfits, however, since it appears that Charlotte's preemie clothes fit just fine. It's hard to imagine, but the above outfit was too big for Charlotte at one point. Look for Charlotte in the next People's "Who Wore It Better?"

Saturday, December 3, 2011

December 3, 2011

Yesterday's surgery went well and Charlotte was discharged this afternoon at 2:30 p.m. So, so good to be home. Just one night in the hospital was longer than any of us wanted to experience; as we packed up to leave Patrick joked that it almost felt as good as the day we took her home from the hospital (after a 94 day inpatient stay). I'm including a few pictures from the past couple of days. Warning: I'm including a picture of her surgical wound, so don't scroll down if you'll be queasy.

The surgical waiting area is full of toys. Here's Charlotte moments after we arrived as she moved frantically around the room checking out all of the toys. After we waited here for a couple of hours the toys lost their novelty and she was ready to get going.

Here she is changed into her hospital clothes. We love the Family Life Specialists at Amplatz. Before her surgery one of the specialists brought her a baby doll with a G-tube and a bag of medical toys to play with. Then, on Friday night when her IV lost the vein another Family Life Specialist used an iPad with very cool apps (animal noises, music, fireworks, etc.) to distract her. She didn't even fuss, and I know we would have had to physically restrain her if it'd been just the nurse.

Here she is a few minutes after we got to her inpatient room. She was wiped out. We knew she was going to be just fine when she was up for giving high-fives to Grandma and Grandpa Russell as they finished their visit.

And here is the surgeon's work. Her original G-Tube site was just above and to the right of where you can see the Mic-Key Button. We're happy the surgeon was able to do this laparoscopically through her belly button. Before the surgery he said there was a good chance he would need to make an incision if there was extensive scar tissue internally, and that would have meant an extra scar.

Another note, our surgeon said it is rather unusual that a G-Tube site needs to be moved. He said in his career he's only performed a couple dozen of these procedures and never on any of the tubes he placed initially (surgeons are known for their modesty, you know... :p). He seemed to imply that the surgeon who placed it initially had created too much tension between the tube and the stomach which caused the tube to migrate up toward the ribs. He planned to leave as little tension as possible.

He somehow managed to use the same stomach hole, which is why we were able to leave the hospital early this afternoon instead of late tonight or even tomorrow. We are very happy with our surgeon and hope he's as knowledgeable as it seems.

Charlotte's evening nurse brought her a wagon, so we spent a lot of time walking around the halls like this. This picture is from her first ride when she was exhausted, but when she perked up she enjoyed pointing and saying "that way" and "more walk" when we tried to return to her room.

She was tired, but not too tired to pass up an opportunity to play with toys! There was a great play room on our floor that she enjoyed a couple of times. It's staffed by volunteers, and I'm sure many of those volunteers are the budding health professionals I advise at the U. I was happy I didn't recognize anyone as that may have been awkward.

Day 2! There was only room for one of us to spend the night with her, so she was happy on Daddy's shoulder when he returned to the hospital this morning.

Relaxing with some Dora.

And here's a picture of my own budding health professional (maybe?). Or, I guess any profession that involves gloves. She was pretty excited about them.

Time to go home! We expect her to have some pain and discomfort for the next couple of days, but it should lessen and be gone completely.

Hospital trips do not get easier. The hardest part is giving her up to the surgical staff - I think I'd even rather being the room during the surgery. This time we were able to be in the room when she first opened her eyes, which was easier than last time when we walked in and she was crying in a nurse's arms. She seemed comforted waking up to familiar faces despite being in pain. We're just glad it's done and we hope this is her last surgery. Ever.

Growth progress update: At her pre-op appointment on December 1 Charlotte weighed 24 lbs 7 oz and was 33.5 inches tall. 

Sunday, November 27, 2011

November 27, 2011

Where has November gone? Time flies when you're having fun, I guess! Here are some photos from the past few weeks and of course, a medical update.

Charlotte got some fun dress-up clothes from our very kind neighbors, and she can now dress as the princess she is.

All ready for bed with a book, her PJ's, and Fraggle.

Here she is on Thanksgiving morning! Charlotte's G-tube site has been causing her pain for a while now and TV serves as an effective distraction/alternative to pain medication. One of her favorites is Annie, which you may recognize on the TV.

Move over Thanksgiving, 'tis the season! One of the benefits of working in higher ed is a 4-day weekend for Thanksgiving. We had a lot of fun including a trip to the MOA with Grandma and Grandpa Russell and decorating our 8-foot Christmas tree. We learned that 8 feet of tree looks pretty manageable outside. Inside, well another couple of inches and we'd have replicated a scene from National Lampoon's Christmas Vacation. It fits just perfectly.

Only a couple of ornaments suffered at the hands of Charlotte, but nothing a little super glue couldn't fix. She loves the tree lights!

Charlotte's G-tube starting causing her pain a few months ago and we started by treating irritation on the skin and granulation (skin-like buildup around the tube site) and also by giving her a few rounds of antibiotics to rule out infection. As the pain steadily increased our pediatrician referred us to a surgeon to see what might be causing the pain, and we learned last week that because she has grown since her G-tube was placed in January 2010, the tube is now rubbing against her rib.

This Friday she'll undergo her second G-tube surgery to have the tube site moved away from her rib. While we're not looking forward to another surgery we're hopeful that Charlotte will be pain free for the holidays.

Monday, October 31, 2011

October 31, 2011

Happy Halloween!

On Saturday we kicked off Halloween weekend with pumpkin pancakes and pumpkin carving.

We were happy the Behlings were able to join us, and here are Broden and Charlotte posing in front of our carved pumpkins.

The best part of carving pumpkins? The hand washing that followed.

After the morning's excitement ended Charlotte decided to read her baby a story in her tent.

Introducing Charlotte as Punk Pirate

Our evening started at the playground...

...where Charlotte was fine playing but burst into tears when it came time for a group photo. We think she gets so excited to see our neighbor girls that she can't help but cry.

After this photo we took Charlotte to the Halloween party at the University of Minnesota's president's home. The house is beautiful, but Charlotte was clawing to get away from Goldy (s0 no mascot photo this year).

Friday, October 28, 2011

October 28, 2011

Getting some air.

Charlotte's GI doctor got back to us with the biopsy results from her procedure last week.  Nothing appeared out of the ordinary.  Although it would be somewhat of a relief to have some ailment to blame for Charlotte's vomiting, it's better knowing that she is an otherwise healthy child with no serious medical conditions. She just needs what Dr. Wu used to call Vitamin T(ime).

Last weekend we got out to enjoy the waning fall season.

Tuesday, October 18, 2011

October 18, 2011


Here's Charlotte sporting a new hairstyle during her bath. This photo gets to be included in this post because we had to use antibacterial soap the night before her procedure.

She was a champ today! She didn't fuss during her vitals, even when her blood pressure was being taken, and she bounced back after just a short while in the recovery room. Her GI doctor said everything looked normal and we'll get the biopsy results by the end of the week. The doctor was even nice enough to brush Charlotte's teeth while she was anesthetized. She vomits when we try to brush her teeth, so once was better than never!

Here she is with the pillow she got in the recovery room at Amplatz Children's Hospital. The hospital staff were great and made her feel very comfortable! She has never been interested in sleeping with a pillow but refused to even read bedtime stories tonight without holding her new pillow.

We let Charlotte watch Yo Gabba Gabba today as a reward for doing so well. Here she is doing a dancie-dance.

Sunday, October 16, 2011

October 16, 2011

Charlotte will be happy to see October come to a close. Earlier this month she developed the worst diaper rash her daycare provider had ever seen, and it was that statement that inspired me to take her to see a doctor. While at the doctor we learned that indeed her diaper rash was bad - so bad it was as though her skin had been burned - but that's not all, she also had a double ear infection and she was wheezing. So, the last few weeks have been filled with prescription butt paste, 2 antibiotics, and the nebulizer.

Despite all of this Charlotte has been absolutely delightful. She is incredibly resilient, and it's that resiliency that we know will carry her through the scope she is undergoing on Tuesday. Her GI doctor has decided that vomiting at this point is not normal, so it's time to take a more scientific approach. We'll finally get to learn if her esophagus is irritated by any allergens or if there truly is no explanation for her vomiting.

On a lighter note, we had a great weekend. This morning we enjoyed Target Free Sunday at the Children's Museum (thank you, Target) and yesterday Grandpa and Grandma Distad took us to the Apple Orchard.

It'll be fun to see how much she grows over the next year!

Charlotte was nice enough to ride the Apple Train with Patrick so he wouldn't be scared.

Charlotte's first hay ride! It was also my and possibly Patrick's first hay ride.

A pumpkin for my punkin'

We survived the corn maze!

Please send positive vibes Charlotte's way on Tuesday. We arrive at the hospital at 6 a.m. for the 8 a.m. procedure which should take only 10 minutes. Hopefully she wakes up from the anesthesia easily and we're home by late morning.

Saturday, October 1, 2011

October 1, 2011

Twin Cities marathon weekend! Patrick isn't running the marathon due to a painful hamstring, but he was able to run with Charlotte in her first Toddler Trot!

But first, an adorable picture of Charlotte from the morning of the race. She pulled out this quilt and requested to be covered up by saying "cover!" and running to the rug and laying down.

This is the quilt I made Charlotte while she was in the NICU. The March of Dimes has a staff person at the NICU who planned activities for parents and quilt making was one of the best because it gave me something to do at Charlotte's bedside. I also got to imagine with the other moms that one day our toddlers would cuddle up with the quilts we were making, and now I feel very blessed that it's a reality.

We had a great time at the Twin Cities Family events this morning watching Charlotte run her first race, the Toddler Trot.

Go, Charlotte, Go!

Proud Daddy with Charlotte and her medal. She loves wearing Patrick's medals around the house, and she's excited to now have her very own.

Charlotte had a big cheering section this morning: Grandma and Grandpa Russell, Grandma and Grandpa Distad, and Uncle Dan (and of course mom and dad).

We don't have many pictures of the three of us, so a special thanks to Sonja Decker for taking this one after the race.

How sweet is this photo? We were happy to run into Sonja, Kira, and Evan after the races, and Charlotte loved playing with Evan.

Just in the last few weeks we've noticed that Charlotte has become very interested in playing with other kids. Tonight at the playground she was ecstatic when other kids arrived at the park and goodbyes lasted until we were out of sight of the park. So fun!

Good luck to all the marathoners tomorrow, we'll be cheering!



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