Charlotte's Page

March 13, 2012

2012-03-13T21:57:00.003-04:00

Happy Spring! We've been loving the beautiful weather and hope the "Winter That Wasn't" is over.

Since our last post Charlotte got to see her surgeon one last time (we hope). He gave her a new Mic-Key button which we found out last night is defective. The extension tube doesn't lock so it came out and pumped formula all over her and her bed in the middle of the night. We have an extra button so we'll probably need to put it in this week.

After that appointment Patrick and Charlotte met with a dietician. The dietician gave us ideas of how to increase Charlotte's calorie intake. Basically, Patrick and I cannot eat with her because the dietician suggested using whipping cream to make mashed potatoes and scrambled eggs and adding butter and oil to things. She also affirmed that ice cream is great (Charlotte loves it) and encouraged us to introduce more vegetables to her diet because we can add cheese to them (as opposed to fruit which is low in calories).

I took her to see the speech therapist this week and we decided to see her every other month instead of monthly. Charlotte's doing so well with eating that there's no reason to see her that regularly. In fact, starting tomorrow we are reducing Charlotte's tube feeds from 3 cans down to 2 cans. We e-mailed Charlotte's pediatrician and asked her to look at Charlotte's growth charts using he measurements from her visit with another doctor for an ear infection a week a go. She responded in under 24 hours and said Charlotte's growth looks great and 2 cans is reasonable. The plan is to give her two cans from 7-10 p.m. and then her time to get hungry will increase.

Time for photos...

Play-doh has been a favorite past time lately.

We got her trike out this weekend and she had a great time. Her feet just touch the pedals, and she's working on the leverage needed to propel herself forward. For now, mom and dad get to push.

The sandbox was primed and ready for sandcastle building.

Charlotte got a big girl bed this weekend! We have retired her crib and on Sunday night she slept in a twin bed for the first time. It was quite momentous because although it took 3+ hours to coax her to sleep (the idea of the new bed was exciting but bed time was a bit scary), she slept through the night, in her own bed, for the first time in about a year. I was almost alarmed when I woke up and she wasn't next to me.

Last night of course she woke up when her tube disconnected because she was all wet, but hopefully tonight she'll sleep soundly. Sweet dreams!

February 29, 2012

2012-02-29T21:42:00.003-05:00

Thank goodness for a leap year! Without it we would have missed an entire month of blogging. We've had a great month. Here are a few highlights...

Charlotte helped with some Valentine's Day baking for my and Patrick's offices. Her interest in what we do in the kitchen has increased and she regularly asks to use our little kitchen ladder to see what's going on.

Charlotte has been under the weather a couple times this month. Around the middle of the month she was so tired that she laid on these pillows or snuggled with me on the couch for an entire afternoon. We watched two movies from start to finish - so I knew she was in need of major down time.

Then last weekend our friends Andy and Robin from Madison were visiting the Twin Cities and while we enjoyed breakfast with them Charlotte was just not herself. She cried and complained that her ear hurt. While Patrick stayed at breakfast I took Charlotte to the Minute Clinic at CVS and they confirmed she had an ear infection. Within an hour she had been seen, we paid a co-pay $10 less than our regular visits, her prescription was filled, and we were home. Amazing.

The unseasonably warm February weather inspired a trip to a park in Kasson, MN while Charlotte and I visited my parents. The swings were a bit more popular, and we could tell that she is pretty fearless now (well, with an exception to the tube slides - those are pretty scary).

We finally got a snow fall! Or was it a slush fall? In any case, Patrick helped Charlotte build her first snow man. Here she is putting the nose into their snow man.

Dress up has become a popular past time. She loves tu-tus (you can see one poking out under the shirt).

Her eating has been going very well! Tonight we had spaghetti and she carbo-loaded.

And she appeared to enjoy it!

We made it to the speech therapist again this month and we're going to keep doing what we're doing. Based on our weight checks at home Charlotte has maintained her weight and even gained an ounce or two with only 3 cans of formula. Our daily goal is that she eats at least 250 calories, and she makes it most days. Next week we get to meet with a dietician to learn about ways we can increase the calories she is getting.

January 29, 2012

2012-01-29T20:26:00.002-05:00

We've had a fun week with lots of playing. Charlotte has discovered how fun dress up can be (above) and Patrick discovered that he can fit inside of her tent AKA peapod (below).

AND, the absolute mostest bestest thing in the world - she eats! Generally when daycare calls it means she's sick and we have to pick her up. Not so this week. Twice we got wonderful news that she had eaten most (half of a ham and cheese wrap) or all (spanish rice and ground beef) of her lunch and they were uncertain about starting her mid-day feed. We decided to give her half of her feed immediately after such a full lunch and then we finish it up in the evening so that she still gets a full 3 cans a day.

Her favorite foods include: pudding, goldfish crackers, breakfast sausage links, and hummus (by the spoonful). She has eaten other things as well, but these are the ones she really scarfed down. Here's some photographic evidence:

Chocolate pudding is good. Need we say more?

Forget nutrition, Charlotte even got her first taste of a McDonalds cheeseburger this weekend.

A can of formula equates to 250 calories, so our goal each day was for Charlotte to take in at least 250 calories. We thought she had done this, so were surprised and disappointed when she weighed in at 23 lbs 10 oz yesterday (down from 24 lbs 1 oz the week prior). Then, we decided it must be water weight because she's not getting the fluid from her formula. We added extra water to her feeds today and tonight she weighed in at 24 lbs 2 oz! I'll take it.

We plan to e-mail her pediatrician tonight and find out how much water we should be giving her now that she's getting 3 cans per day. The Human Nutrition class I took for a liberal education requirement did not prepare me for this situation! :)

We're hopeful that this is one giant leap toward a tube free Charlotte. By her third birthday perhaps?

In other exciting news, Patrick and I got to go on a date Saturday night. Grandpa and Grandma Russell baby sat Charlotte and she loved it. She got to stay up late, show how high she can jump, read her new book (Tickler Monster), and in general be adored. We also loved the opportunity to try a new-to-us restaurant in Uptown (and feel cool that we were going out to eat in Uptown).

January 22, 2012

2012-01-22T20:01:00.002-05:00

Charlotte has been grazing on food all day. We didn't track calories, but here is a list of foods that passed her previously impenetrable lips: goldfish crackers, greek yogurt, chocolate pudding, bread, twinkie, shredded turkey, broccoli, water, and pineapple juice.

The quantity varied for each food but we're more that pleased with her Day 1 performance. She loved the turkey we had for dinner and after eating a fair amount got a bit excited, put too much in her mouth, gagged, and vomited most of her dinner. This resulted in a new first for mom: cleaning vomit with chunks of food in it. I thought I'd be more grossed out than I was...I guess when it's your own kid it's just not that bad. In fact, I sort of enjoyed it - seeing real food in her vomit, that is.

January 21, 2012

2012-01-21T21:30:00.003-05:00

Charlotte's foolish parents are embarking on a test of her eating skills. Starting tonight we're reducing her overnight feed from 2 cans to 1 to see if she eats more as a result. Tonight she weighed 24 lbs 1 oz, so we'll compare again in a week.

This past Monday we took her in for her monthly appointment with the speech (feeding) therapist and she did pretty well. We're focusing on teaching her to chew with her back teeth and to use her tongue to move food around in her mouth. The latest strategy is a game: she chews on her straw and then we cheer for the bite marks she makes. We're most likely jumping the gun with our test but she's been a relatively good eater this week. She ate 4 slices of mandarin orange at daycare, this morning she ate about a quarter of a hamburger bun, and at dinner tonight she chewed on a french fry and ate a fork-full of mustard (num!).

We've had a fun couple of weeks! We celebrated Christmas with our extended families the first weekend in January, saw Elmo Makes Music with Aunt Kelly last weekend, and spent this afternoon with Grandma and Grandpa Distad at Sea Life.

Here's Charlotte getting excited to see Elmo Makes Music - Live! This was a great Christmas gift from Aunt Kelly and Uncle Tim. She was enthralled, only breaking her concentration to clap after each song (and occasionally during). Thanks Kelly and Tim!

Here's a shot of Charlotte and Kelly pre-show. I had the pleasure of attending with them and it was a ton of fun. There was a lot going on, so it was hard (read impossible) to get Charlotte to look at the camera.

January 5, 2012

2012-01-05T12:28:00.009-05:00

Happy New Year! We celebrated Noon Years Eve at Como Zoo and here are a few photos from the event.

Patrick made Charlotte her New Year's Eve hat. Version 1 (above) was quickly improved.

Version 2 was an original for the event. Good job Daddy!

After a countdown to Noon these beach balls fell on the crowd. Very fun! This is as close as I ever want to get to New Years Eve in Time Square; it was packed.

Charlotte was excited to get a lion beach ball even though it was purchased at the gift shop. Patrick caught a beach ball right after they were dropped but I thought it was more fun to throw the balls in the air...and it was until they had all been grabbed for keeps.

Since the New Year Charlotte has been battling illness - a fever, lots of coughing and vomiting, wheezing, and exhaustion have disqualified her from daycare for a bit. Conveniently we had already scheduled an appointment for yesterday with her pediatrician to have her g-tube site looked at because she continues to complain of pain. For the tube we have another medication that will help the stomach lining heal - we're hoping it's just irritation. If we don't see improvement by next week the next step will be an ultrasound.

For her other symptoms she was diagnosed with probably having RSV. She received monthly shots to prevent RSV for the last two winters, but now she's too old for the shots (at least to have insurance cover the very costly shots). Hopefully nebulizer and rest will help her get back on her feet - literally as she wants to lay around almost all day - very soon.

The worst of yesterday's appointment was her chest x-ray. If you haven't had the privilege of watching a toddler receive a chest x-ray here's a blog with a picture of what happens: http://matthewrachelstarch.blogspot.com/2011/03/pigg-o-stat.html - not only was Charlotte immobilized in a similar torture device, she also had a piece of black velcro wrapped around the plastic walls which just happened to be at her eye level, preventing her from seeing anything thereby increasing her fear. I've never heard her scream quite like that and was relieved when it only lasted a minute. There has got to be a better way...

Here's to hoping our family soon returns to our normal school/daycare and work routines!

December 27, 2011

2011-12-27T17:56:00.009-05:00

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?"

December 3, 2011

2011-12-03T16:17:00.007-05:00

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.

November 27, 2011

2011-11-27T22:39:00.003-05:00

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.

October 31, 2011

2011-10-31T20:34:00.007-04:00

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).

October 28, 2011

2011-10-28T22:06:00.000-04:00


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.

October 18, 2011

2011-10-18T21:35:00.003-04:00

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.

October 16, 2011

2011-10-16T23:22:00.003-04:00

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.

October 1, 2011

2011-10-01T23:57:00.004-04:00

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!

September 26, 2011

2011-09-26T21:24:00.006-04:00

Saturday was a big day for Charlotte because we turned her car seat around. She is now forward facing! Can't say we've noticed a huge difference, but she seems to enjoy the new view.

Here are a few photos we've taken over the past few weeks.

Charlotte found a comfortable place to read and enjoy the sunshine of one of our last warm summer days.

Grandpa and Grandma Russell, Aunt Kelly, and Charlotte dressed as Goldie Locks and the Three Bears for the Suds Run 5k near St. Anthony Main and downtown Minneapolis. They took second place in the parent/child costume division!

Tickle fingers...

Are going to get you!!!!

And she found her pumpkin! Grandma and Grandpa Distad had a very successful pumpkin patch this year, and Charlotte picked out her pumpkin as well as a couple for the girls who live next door to us. Halloween will be here soon. Boo!

Dear concerned Viking fans: we discovered Charlotte has grown into her hand-me-down Viking apparel, so have no fear, she'll be splitting her time between her Viking, Packer, Wisconsin, and Minnesota apparel.

9/27 addendum: Charlotte weighed 23 lbs 6 oz at the doctor tonight! She's growing!

September 21, 2011

2011-09-21T23:28:00.000-04:00

Charlotte started at a new daycare last week. We made the switch mostly for convenience but there are other things that we like better about the new place. It reminds us of Little Huskies in Houghton which we loved. Charlotte seems to like it too.

Last week I took the afternoon off to take Charlotte to a live performance of her favorite show, Yo Gabba Gabba! We took the train downtown and walked through the Nicollet Mall farmer's market on the way to the State Theatre.

At two years old, she couldn't quite grasp what I was telling her beforehand. But once we walked in the lobby and she saw the large cardboard cutouts of Muno, Toodee, Foofa, Brobee, and Plex she lost her mind a little bit. We had a good time dancing and singing along throughout the show. Luckily, Yo Gabba Gabba tends to appeal to parents of my generation as well (a lot of the music acts on the t.v. show are on my ipod already.)

The whole afternoon led to a bit of over stimulation come bedtime, but that is all part of the fun I guess.

Trying to contain our excitement pre-show

It's time to dance. Yeah.

DJ Lance says dance around...

That. Was. Epic.

Muno!? Where?

Time to rest and rehydrate.

Here is a video someone posted to YouTube from the show we were at

August 29, 2011

2011-08-29T21:16:00.007-04:00

Charlotte to Minneapolis, "I'm crushing your head!"

The last weekend of August was a great one. We kicked off Saturday morning with a bike ride to the Mill City Farmer's Market and toured the Guthrie while we were there.

Charlotte's pink eye patch is her favorite, and the only one she chooses to wear (when given a choice between designs).

The morning was extra fun because our friends joined us. Here's their little guy sitting with Charlotte. He tried giving her hugs and kisses, but she leaned away. Maybe she'll warm up next time.
The farmer's market was pretty busy. Lots of good food for eating there and for bringing home. We hope to go back again soon.

On Sunday Charlotte took her first trip to the great Minnesota Get-Together - AKA the Minnesota State Fair. It was Patrick and my first trip to the State Fair with a toddler - an exhausting yet fun experience.

When we first arrived I realized the SD card we usually use in the camera was at home, but we were in luck! Our second SD card happened to be in the camera case, and on it were pictures of our NICU stay. I'm always blown away at how far Charlotte has come when I look at pictures from then and thought I'd share a couple here.

So tiny and cute in her first dress.

Charlotte's first bottle. Oh how hopeful we were...the end was in sight, or so we thought.

And that's enough of a flash back...

The Minnesota State Fair

Charlotte met Mr. Bubble's from a distance. She was quite fascinated with him.

Here's Daddy trying to convince her that his favorite, the goats, are nice to pet.

I think she liked the hat/head band more than the actual pigs this year.

And this picture clearly states how she felt about the geese.

All in all, it was a good day.

And the medical update.

At Charlotte's last pediatrician appointment they took finger prick blood sample to test for lead. Unfortunately it tested positive, so tonight we were back to have more blood drawn. We're happy to be back home - post tears and 2 needle pokes (first try in the foot and then a successful draw from her left arm), and will hopefully know soon whether or not the lead levels warrant treatment.

Maybe the first test was a mistake.

August 24, 2011

2011-08-24T22:41:00.005-04:00

Another dress courtesy of cousin Genevieve

Yo Gabba Gabba in print form. This book cannot be within Charlotte's field of vision lest you have to read it repeatedly.

Charlotte's new puppet book

Charlotte's new tricycle

Charlotte in flight.

Hanging out on the Stone Arch Bridge

Working on her ride.

The new potty can wait. Let's get some use out of this box first.

Now that we're settled into the new place we've been able get out enjoy the rapidly dwindling summer.

Two weekends ago we wrapped up Charlotte's birthday celebrations with a trip to Grandpa and Grandma Russell's and a visit from Grandpa and Grandma Distad. Charlotte loved all the attention. It also appears that she is beginning to understand what presents are all about so Christmas should be interesting.

Charlotte is starting to act her age in many respects. The most challenging is the tendency to "tantrum" at the drop of a hat. Bedtime has turned into an hour long affair with much screaming and gnashing of (baby) teeth.

We've resorted to trying to sap a little of her energy by working her pretty hard. This past weekend we hiked around the Stone Arch Bridge in Minneapolis and spent some quality time at the playground.

At Charlotte's 2-year well child pediatrician appointment tonight she measured 22lbs 9oz (5th percentile) and 32.25" tall (11th percentile).

August 11, 2011

2011-08-11T22:24:00.002-04:00

Today was an exciting day for appointments. We started off with a visit to the Ophthalmologist, and got great news. Charlotte is using both of her eyes much more evenly than she was 3 months ago, so the stronger lens in her right eye is helping! The doctor wants us to patch her eye for a minimum of 2-3 hours/day (the more the better) to force her brain to use the weaker eye.

Charlotte was quite interested in the patching concept and asked to have one put on while we were still in the doctor's office. It helped that Patrick wore one our of the clinic as well. Her doctor was quite impressed with this. Here are a couple of photos of Charlotte after we got home:

We ordered some fun eye patches online from a great website recommended by our doctor: http://www.myipatches.com/home.php. She also told us about Ortopad, which is a site that has cloth patches to go over her glasses. If she reacts poorly to the adhesive we might try those, but there's a risk that she'll be able to look around the patch, reducing the benefit of wearing the patch.

Appointment number 2 of the day was to the pediatric rehabilitation clinic where we saw a new speech therapist. We've been pretty disappointed with the feeding/speech therapy Charlotte has received since our move to Minnesota, but we felt much better after leaving today. Her first appointment was in April and we never received the promised 6 week follow-up phone call. We finally got a second appointment for today, but now we have monthly appointments scheduled through December.

The rehab clinic is inside Amplatz Children's Hospital which reminded us of Children's Hospital of Wisconsin. It made me feel a little homesick for a place with which we were all too familiar. Although we never wanted to be there we had a very positive experience, and I'm hopeful we'll feel just as at home at Amplatz soon. Or Charlotte could eat and we'll never go there again.

Appointment #3 of the day with her pediatrician was canceled because the doctor was out of the office. We went to the park with our new neighbors instead! Lots of fun.

August 10, 2011

2011-08-10T22:45:00.007-04:00

Happy Birthday Charlotte!

Wow, two years have passed. In some ways they've flown while in others it feels as though Charlotte has always been a part of our lives. I certainly cannot imagine life without her. Regardless of how many times I get up with her in the night my favorite part of the day is getting her out of her crib in the morning - she's always full of smiles and hugs.

Last year on this date she weighed 17 lbs 3 oz. Today she weighs 22 lbs 9 oz. According to my Google search (http://kidshealth.org/parent/growth/growth/grow12yr.html) kids should gain 2-5 lbs between their first and second birthday, so Charlotte is ahead of the curve!

When Charlotte was in the Marquette NICU a nurse gave me a pink beanie baby to set next to her to photograph her size. It ended up back in Houghton before her 2 month birthday, but the volunteer at the Children's Hospital of Wisconsin gift shop kindly gave me a Thanksgiving Beanie Baby to use there. It has stuck with us and tonight we took it out just for fun. Luckily she's now much larger than the beanie baby, strong enough to hug it, and opinionated enough to tell us she's not putting it down.

At daycare they made Charlotte a crown, which she loved wearing. She insisted I put it on her head before she got in her carseat and didn't take it off until she wanted to walk through my legs - the bridge just wasn't tall enough for the crown.

We've been neglectful at posting video, but here's some video of Charlotte. Her language skills are developing very quickly!

Since our last post we attended Patricks' family reunion where...

...Charlotte demonstrated her impressive pitching potential,

played with bubbles,

and got her first tattoo (temporary, that is).

We moved! With the help of about 9 amazing people it took less than 2 ours to move out of our old place and into our new. A huge thank you to those who helped us move!

After the move we had a little party for Charlotte. Here's Patrick sneakily helping Charlotte blow out her candle. Judging by her fascinated expression, the candle may have fully melted before she tried to put out the flame.

And a nice family photo in our moving apparel.

Tomorrow brings doctor appointments and this weekend more birthday celebrations. Hopefully these events will be promptly followed by blog posts.

July 23, 2011

2011-07-23T21:23:00.003-04:00

The month of July is flying by just as fast as June. Last weekend we visited my parents' for a full weekend: we checked out the animal barns at the Dodge County Fair (and may have had a treat or two before leaving), visited with my aunt and uncle from Florida, and celebrated my Uncle Lyle's 65th birthday!

My Dad surprised us all with a table and chair for Charlotte. Charlotte has been using a foot stool and plastic tote as a place to color, so she is VERY excited to have a real table and chair just for her.

Charlotte had a first last week that we aren't very excited about. For the first time she asked to watch TV - Elmo specifically. She was unbelievably clear and insistent and we complied through our shock. Here's Patrick and Charlotte watching Elmo.

On Wednesday we headed up to the University of Minnesota's Biological Laboratory and Field Station in Itasca State Park. All first-year CBS Students attend a program called Nature of Life before starting college and as a staff member I got to bring my family up for one of the sessions. While I was learning about genetics, evolution, and bacteria Patrick and Charlotte explored the park. Above is Charlotte all ready to leave our cabin for the outdoors!
We did find time to visit the headwaters of the Mississippi River together. Here I am coaxing Charlotte into the water.

And here she is with her toes just barely in the water, checking out the view.

She was perfectly happy going further into the water if Daddy held her.

There appeared to be no way Charlotte was going to let go here...but she did eventually.

Daddy and Charlotte relaxing on the rocks and investigating some rocks from lake bottom.

And in case you didn't believe me, here's the proof of our location.

Today we arrived back in the Twin Cities around noon and didn't waste much time getting to the splash park. This was Charlotte's second trip to the park and it went much better. She walked right up to the water and sat on the edge before bravely walking in up to her thighs. I think she most enjoys sitting and people watching.

Charlotte's weight is up 4 oz to 22 lbs 8 oz. We saw Charlotte's Occupational Therapist on Tuesday evening and we're continuing with sensory stimulation. Our goal is to be able to run our finger along the top of her mouth without her gagging. To be honest, I'm not sure I wouldn't gag if someone put their finger in my mouth...

She is showing increasing interest in eating, but she just can't seem to figure out chewing and swallowing. Far too often her snack times result in gagging/throwing up. Her next appointment with the speech therapist will be in early August, and I hope she provides us with some additional guidance.

Until then, we'll continue to enjoy the summer. We don't have air conditioning, so let's hope for 70-80 degree weather!

July 4, 2011

2011-07-04T22:12:00.006-04:00

This post is from me (Katie) logged in under Patrick's account.

We haven't seen a doctor since our last post (yay!), and tonight Charlotte weighed 22 lbs 4 oz. That's all for a medical-related update.

See that teeny tiny spot of red mid way up the hill? That's Patrick running the Afton 50k trail race on Saturday. The race is traditionally run at Afton State Park, but was moved to Afton Alps due to the government shutdown (and associated state park closures). The course was very difficult. Patrick had trained on the original course and had thought he could run close to 3.5 hours. The back-up course brought unique challenges (running up and down the ski hill 4 times, for example), but he pulled through with a time of 4 hours and 30 minutes.

After the race we had a nice lunch on the patio of Sail Away Cafe in Afton with Patrick's parents.

Sunday we visited my parents. Charlotte has no interest in swimming pools, but she likes playing in the water while standing next to them. She ended up wearing a dry swimming suit most of the day.

Charlotte enjoyed looking at Grandma's flowers as much as Grandma enjoyed showing her them.

Surveying the backyard for dogs who attack with their tongues.

Here's Charlotte successfully navigating the maze Grandma and Grandpa are growing for her.

And now for the Fourth of July! Happy Fourth!

We returned to Afton along with a few thousand others for the parade.

Charlotte rode in style. The carrier allowed us to easily navigate the crowds and Charlotte was able to watch the parade over the heads in front of us.

She got a flag and held onto it for most of the parade.

We left the parade before it ended so that Charlotte could run and play at the park.

Before long the parade crowd joined us on the playground and Charlotte had to figure out how to share the space.

Going...

Gone.

June 21, 2011

2011-06-21T21:59:00.004-04:00

Alas! Patrick was at Kelly and Tim's wedding this past weekend. Here he is after putting Charlotte in her dress before the ceremony started. We waited until the last minute to minimize the possibility of her vomiting on her dress before the wedding.

Charlotte hasn't been sleeping for about 2 weeks, and has therefore been pretty cranky. Tonight we took her to the pediatrician's office and learned that nothing is wrong. The doctor theorized that she might be cutting her molars. To determine this he first gave her a catheter to rule out a urinary tract infection. It was not fun, but at least now we know her ears are fine, her throat is fine, her joints and tummy are ok, and her teeth just need to cut through quickly!!!!

June 19, 2011

2011-06-19T22:23:00.004-04:00

Whew, what a whirlwind weekend! Patrick's sister, Kelly, married Tim on Saturday and their wedding was very fun. It all started Saturday morning...

Here's Kelly with hair and make-up in progress.

Mother-of-the-bride was very fashion forward with her English-style hat (it has a fancy name that escapes me at this moment). For interested parties: similar hats are available on E-bay.

First Dance!

Father-daughter dance

Charlotte was lucky enough to get some one-on-one time with the bride...

...and what better to do than lay on the floor.

Charlotte loves her aunt very much.

Mom loves Charlotte very much.

Hi's for everyone!

It seemed there was somewhere to go go go! all night long (or at least until 9:30 when Charlotte was escorted home).

Patrick was at this wedding, and I know photos of him exist, but not on our camera. Perhaps one will be posted at a later date.

We had a great time at the wedding on Saturday and had a nice Father's Day as well. This morning we enjoyed brunch with family in town from the wedding and this afternoon attended my family reunion. All in all this weekend was great with lots of time spent catching up with family. Charlotte felt a little pressure to do some growing after she saw her cousin who, at under 7 months, weighs just 1-2 lbs less than Charlotte at 22 months.

Patrick and I learned a lesson this weekend: we can no longer wait until the last minute to prepare for events. We were constantly running late this weekend and forgetting important things (camera, extension tube, wedding gift, cuff links, jewelry, etc.). I'm going to blame it on the fact that I was sick last Thursday so everything I'd planned to do was pushed off until Friday after the wedding rehearsal picnic.

Update: The no-vomit streak ended Saturday, but there were no incidents during the wedding or reception. Hopefully we can get back on track this week when life returns to a normal pace.

June 15, 2011

2011-06-15T21:43:00.002-04:00

Time has flown since our last post! On Sunday we made a trip to Duluth for a graduation party for the daughter of one of Pat's former UMD co-workers. We loved seeing our UMD friends and enjoyed a perfect summer day in the most beautiful city in Minnesota (the world?).

We enjoyed lunch at Little Angie's in canal park. We got Charlotte a kiddarita, which I think she would have enjoyed if she hadn't had a little piece of chip in the back of her throat. Instead she ended up vomiting all over, and Patrick and I shared the delicious kiddarita. In the photo above she's chewing on a cherry stem...we tried to explain that the good part was in her hand, but the stem made her happy.

We just had to take a photo in front of the lift bridge.

And Patrick taught Charlotte to throw rocks into Lake Superior.

She was very good at it.

So many rocks!

Last week Monday Charlotte saw her GI Doctor for a check-up. Dr. Erickson was very happy with Charlotte's growth. When we started seeing her in January Charlotte was in the 3rd percentile for her weight (actual age) and is now up to the 10th!

This was good news because we were concerned with her vomiting. She still vomits for no apparent reason every once in a while, but most consistently she vomits in the morning. Dr. Erickson explained that this is perfectly normal because she's being fed slowly all night, her stomach is draining slowly while she sleeps, and then she wakes up and everything starts moving faster all at once...in every direction. At that appointment Dr. Erickson prescribed a new antacid so we can be certain that when she throws up there's no irritation to her esophagus.

Knock on wood...Charlotte has not vomited since Sunday.

We've had a couple of appointments with the occupational therapist. We're introducing a brushing technique on Charlotte's arms, legs, and back to work on her sensory responses. This is in case she's not eating because of the sensory reaction. Who knows, we'll try anything. Charlotte thinks the brush tickles and she likes it. It feels like a massage to me!

This weekend is Pat's sister's wedding. We're looking forward to celebrating with Kelly and Tim (and all of their friends and family)! Pictures to come!

June 5, 2011

2011-06-05T21:34:00.008-04:00

A busy weekend at the International Children's Festival on Saturday and Minnehaha Falls and Grand Old Day on Sunday.

Let's go. I'm ready!

Relaxing on the big pillow (in a new outfit since I threw up all over mom within 5 minutes of arriving.)

Just the right size.

It's important to properly hydrate.

Mom. Baby. Charlotte.

Working the stairs.

How do I get down gracefully?

Taking a dip in Minnehaha Creek.

Charlotte does her David Banner (Incredible Hulk) walk.

May 31, 2011

2011-05-31T21:14:00.004-04:00

We hope everyone had a nice Memorial Day Weekend. Patrick got some extra sleep while Charlotte and I enjoyed spending the weekend at my parents' house. Grandma and Grandpa surprised Charlotte with a perfectly-sized play structure. She liked this swing very much because it was close enough to the ground that she was able to hop out whenever she wanted.

She loved the slide!

And definitely preferred being caught at the bottom.

She enjoyed helping grandma cook.

We visited Red Wing with my uncle Lyle and acted like tourists with one of the famous (?) Red Wing boots.

Uncle Lyle introduced Charlotte to one of his kittens, and Charlotte was very interested in petting it.

We also learned how much fun jumping on mom is.

Charlotte has been saying Daddy with increasing regularity, but in reference to me (Katie). Hopefully we can help her figure out whose who in the near future.

Charlotte has her new lens! Her right lens is significantly thicker than her left lens, but it's hardly noticeable with the thick infant frames. We decided not to invest in prescription sunglasses in anticipation that her prescription will change again in August. Charlotte is not a fan of this decision, and we've resorted to hiding her sunglasses so she doesn't get upset that she can't wear them anymore.

Now that we're in Minnesota Charlotte was evaluated by the state's birth to three program. We posted about the evaluation results a while back and while everything was pretty positive she qualifies for services because of her prematurity. We've agreed to have an occupational therapist visit us in-home twice/month, and are pleased that she is able to come after 5 p.m. so that Charlotte can benefit from her services and we don't have to miss work.

She's only come once so far and it sound like she'll try to help us with feeding and also focus on Charlotte's gross motor skills. This means fun trips to the park and practicing stairs, which Charlotte has gotten quite good at.

We haven't made much progress with feeding. We switched to the more elemental formula, Peptamin Jr., a couple of weeks ago and have seen little change. In fact, the first few days she was on the new formula her vomiting increased. She vomited twice overnight (instead of once in the morning) and also at lunch time - prompting daycare to express displeasure over the switch. Things seem to have leveled out to where we were at with the Pediasure. She still vomits and has trouble sleeping, but Dr. Erickson said it could take up to 6 weeks to see improvement. Stay tuned.

We've been having mashed potatoes pretty regularly. She also tried some BBQ sauce at a restaurant this weekend and seemed to like it. She's turning out to be quite the homestyle girl.

May 13, 2011

2011-05-13T20:50:00.005-04:00

Charlotte hasn't been swimming yet, but she loves trying on her swim suits. I'm not sure she'll ever wear this two piece outside of the house because its a bit too easy for her to pull on her G-tube, but she enjoyed playing in it. Thanks to my cousin Karen for the hand-me-downs!

She's very interested in socks and shoes and loves to help us put hers on each morning. Before we know it she'll be dressing herself!

"If you're happy and you know it shout Hooray!"

Lots of teeth!

The park is a lot of fun...

...but get me out of this swing!

Since our last post Charlotte has developed a cough and increased vomiting (possibly related). We've resumed her nebulizer treatments to hopefully help her sleep more soundly, and next week we'll start the new formula.

Last week we had a follow-up appointment with her pediatrician to make sure her ear infections cleared up. She still has a bit of fluid behind her ear drum, but the doctor doesn't think it's causing her any pain. We'll be back in August for Charlotte's 2-year (yes, TWO YEAR!) well-baby visit and hopefully they'll be all cleared up by then.

We've had very little success brushing Charlotte's teeth, and her pediatrician recommended toddler toothpaste which I didn't even know existed. We bought some, it smells like candy, and now Charlotte kind of likes chewing on her tooth brush. Every once in a while I'm able to do some brushing, but we rely primarily on wash cloth chewing to clean her teeth. The pediatrician showed us a WWF-style hold that we can try, but I'm hesitant because every time we force it she vomits...a lot.

Good news! Charlotte loves mashed potatoes and gravy. She eats about a tablespoon in a sitting. It's fantastic.

And for our latest stress! Charlotte had her eyes examined yesterday and her left eye has stayed pretty stable from a -4.25 refraction to a -5.00 refraction. Her right eye, however, has changed from -4.25 to -13.50. We learned that this is not uncommon in kids who had as severe of Retinopathy of Prematurity (ROP) as Charlotte did. The ophthalmologist says this happens because the human brain is lazy (efficient) and is going to take the easiest way out. It starts to rely on the good eye and stops using the weaker eye, which decreases the vision in the weak eye. Step 1 is to get a new lens, so Charlotte and I visited Grand Spectacle last night to order her new lens.

Step 2 is to return to the ophthalmologist in 3 months to find out what's next. It seems likely that Charlotte will need to wear a patch for a few years to force her brain to use her weak eye. I have a hard time grasping what this means for her vision long-term, so I asked her new ophthalmologist to what degree I should be concerned. She said it was difficult to quantify...really any response other than - "don't worry at all!" makes me worry. She did give us a good website to review: http://www.aapos.org/terms_faqs. She said Charlotte COULD develop Amblyopia and MAY develop Strabismus. What in the world is the difference between could and may in this context?

April 25, 2011

2011-04-25T21:11:00.011-04:00

It's been a busy few weeks around here. Charlotte has continued to refine her walking skills and consequently has become much speedier. Putting her down in the grocery store is strictly at your own risk!

The weekends have been jam packed. Two weekends ago we took advantage of the free Sunday at the Minnesota Children's Museum. Katie and I had never been, but we had heard good things and the museum didn't disappoint. We were salivating at the four floors of activities and open space for next winter especially. No more cooped up feeling. Charlotte started out squealing and running over over the place. It's almost like she didn't know where to start. Eventually she wore down and by the time we got to "Our World" she was sporting a zombie stare.

After a long nap Charlotte was recharged and put on a little fashion show of the new swimsuits she received from Katie's cousin Karen. We hope that her eagerness and insistence in wearing them will translate to actually taking a dip this summer. We'll start with the wading pool at Minnehaha Park, but hopefully we can eventually take some swim lessons.

We're also working on increasing her comfort level with her bike helmet. We're up to about two minutes.

This past weekend we not only celebrated Easter, but also my sister Kelly's impending nuptials at her wedding shower in Sheboygan, WI. Daycare was closed Friday, something that we failed to realize until that week. So Thursday night we brought Charlotte to Grandma and Grandpa Russell's in Eau Claire, drove back to work Friday morning and then back to Eau Claire Friday night. Saturday we woke up early and we all drove over to Sheboygan for the shower and then back to the Twin Cities that evening. Since being back in St Paul we become a bit unpracticed at the long-haul trips that were so common when we lived in Houghton. I can't say we miss them and Charlotte concurs.

Friday evening Charlotte made her first attempt at dying Easter eggs. And by first attempt I mean sticking her hands in the dye and staining her hands so that she looked jaundice for the next two days.

On the health front, we've continued to try to massage Charlotte's daily feeding plan to not only promote her growth, but to also encourage some hunger cues so she might make more serious attempts at eating. And we've had some success. She seems more comfortable eating small amounts of food. The other day she actually came into the kitchen and pointed earnestly at a box of blueberry granola. The blueberries are freeze dried and it seems to be the food/texture she is having the most success with. Overall we're still dealing with very small amounts of food and sometimes she goes a little far and throws up, but the overall trend is better.

We met with the specialists at the Fairview Feeding clinic for the first time a couple weeks ago. It started off a little slow with the occupational therapist as Charlotte is a little shy around strangers at first. But by the end of the appointment she was running around the room and acting silly. It doesn't appear that we will have to see the occupational therapist at the feeding clinic anymore because Charlotte doesn't really have any sensitivities to textures. But the new speech therapist had a lot of good information and we look forward to continuing to work with him. Right now our goal is that within the next six months we will replace a portion of her tube feeds with oral feeds. It seems like a tall order, but if we can get Charlotte's vomiting under control and continue on working with her every meal anything's possible. If there is anything we've learned over the past couple of years is that things can turn quickly, both for the better and the worse.

A couple days after the feeding clinic Charlotte had a GI appointment with Dr. Erickson. Since we're still seeing some vomiting and some other possible signs of a milk allergy, we're going to try a different formula that is more "elemental" with the milk proteins partially broken down. There really isn't a downside to trying it outside of the smell which will probably get old pretty fast if she continues to throw up.

Other than that, Charlotte continues to enjoy her time at daycare. The nights are getting better gradually. She'll sleep in her bed for at least a portion of the overnight, but we still usually end up bringing her into bed around 2-3a.m. Katie and I each get sleep on about six inches of the bed as Charlotte tends claim a lot of territory. I tend to get kicked in the face a lot. Her feet are cute, but that's not usually my first thought at 3a.m.

Charlotte in her Easter dress.

April 10, 2011

2011-04-10T19:48:00.002-04:00

Last weekend we learned Charlotte makes a very cute chicken. We had fun at the Minnesota Zoo with some friends and their daughter who is just one month older than Charlotte. It was striking to see how much better their daughter walked than Charlotte - she looked like an old pro while Charlotte is still a bit stiff-legged.

We went to the zoo to see the baby farm animals. Charlotte was a bit hesitant with the goats but did feed one a pellet after I shoved her hand toward its mouth. :) She pet the baby pig without any prompting, but baby pigs are pretty adorable.

I can almost say Charlotte's vomiting has subsided! Over the past week she threw up at most once/day. On a related note, her eating has increased slightly. She is not interested in taking food on the spoon but she loves feeding herself. She has learned how to eat puffs, bits of banana, and small pieces of pasta. Tonight she chewed on an apple but I'm not sure how much she actually ate. She also drinks out of her sippy cup pretty well (though her favorite thing to do with her sippy cup is drip the water all over herself and the floor). She has her first feeding clinic appointment since our move this Thursday, and we're looking forward to some new insight.

She has become very interested in her feeding tubes, and regularly wants to chew on an extension set. I'm worried about the plastic breaking off in her mouth so pulled out a nuk last night and she even chewed on that. When we left CHW the nurses gave us a handful of nuks that she never used, so I'm glad she's finally, at age 20 months, finding a use for them!

Charlotte's silk pink elephant pajamas were inherited from her cousin Genevieve. They're 18 month size but still too big for her. We let her wear them to bed one night last week because she loves feeling the fabric, but she had a tough time walking around in them. The leg fabric kept getting under her feet and causing her to slip.

Today I took her to the park and she loved it. Last summer she was very timid and did not want to do much but play with sand box toys. Today she crawled through a tunnel, took multiple trips down the slide, and even smiled on the swing. It was hard to get her to leave!

She's gaining weight! Last Sunday she weighed 20 lbs 6 oz and today at 20 months she's up to 20 lbs 8 oz.

The order of this blog post is a bit chaotic, but on Saturday we went down to the Gopher's TCF Bank Stadium to watch Grandma and Grandpa Russell finish Goldy's Run. It was our first trip to the stadium and very fun to walk around on the field. It was especially eventful because we met a couple who reads Charlotte's blog and recognized her from the pictures we post here. Which brings me to something I've been thinking about lately...

We started this blog while Charlotte was in the hospital as a way to keep our family and friends informed about how she was doing. At the time we assumed the day we brought her home would be a clear break from the NICU, she would be a completely healthy, normal baby, and we'd have no use for the blog. Instead we brought her home on a feeding tube and have kept on blogging to keep those who choose to follow updated on how she's doing.

Another reason we maintain the blog is because we hope it might help other parents who have a preemie or a baby on a g-tube. We've read many blogs about other kids/families who've had similar experiences as us. Their blogs are comforting to read and have helped me to stay optimistic and hopeful.

Lately I'm feeling conflicted. Part of me wants to keep the blog going until she eats, but we don't know when that will be. Another part of me worries about who is reading the blog and if posting her pictures in such a public space could put her in danger. But the couple we met on Saturday were very nice and we appreciated that they continued to show interest in Charlotte's progress even after all these months. Maybe I'm being paranoid...I do watch a lot of Law and Order SVU. Thoughts anyone?

April 2, 2011

2011-04-02T22:12:00.003-04:00

Charlotte's first pig tails! Perhaps mom needs to practice making a straight part, or perhaps this is her stylistic expression. The world may never know. :)

Charlotte likes putting mandarin orange slices in her mouth. In the words of Charlotte, num num!

Charlotte had a fun day with Grandma and Grandpa Distad while Patrick and I had lunch with some friends. It was quite the relaxing Saturday.

March 29, 2011

2011-03-29T21:32:00.003-04:00

Happy Birthday to Patrick! Sorry, I didn't take any photos today, but I have things to write...

Charlotte gave Patrick the best present ever and nearly slept through the night last night for the first time in over 2 months. She woke only twice and just needed some pats on the back to fall back to sleep. It was fabulous.

We had a fun and delicious evening - Pat's sister Kelly made a cheesecake that we got to enjoy with her and Tim. Charlotte also learned about Cookie Monster and had fun saying "num num" along with a recording.

In other exciting news, we may have found a way to curb Charlotte's vomiting. I got to speak with a GI nurse on Monday who suggested we change up our feeding plan to dilute her formula throughout the day with water, rather than giving her all 300 mls/day of water straight overnight. This would reduce her feeds from 30 cals/oz to 25 cals/oz, making them slightly less dense.

Then this morning when I explained the new plan to her daycare I learned they were already doing this. They had mistaken Patrick's directions on how to start her feed and rather than using the water to clean out the bag, they were just mixing the water and formula. This was very exciting because we've been puzzled as to why she throws up less at daycare than at home. So far so good, and I'm hopeful we can once again feel comfortable without a burp rag in arm's reach.

March 27, 2011

2011-03-27T22:49:00.004-04:00

We've had a great couple of weeks and weekends since the last post!

Charlotte got her first pony tail. It didn't stay in long, but it sure was adorable.

Patrick and I both had the Friday after St. Patrick's Day off of work, and with 40-50 degree weather we acted like it was summer! We found the pictured bike trailer at Capital Deals in St. Paul. We got the trailer and a bike helmet for Charlotte at less than half the cost of a new trailer (I love a good deal!). While Patrick ran I biked and pulled Charlotte along. It was fun to do something together as a family, and Charlotte did great for her first trip out! Hopefully we'll take lots of trips this summer.

Last weekend was a big race weekend. Patrick ran the Lake Johanna 4 miler on Saturday and the Human Race 8k on Sunday. He did great, and I only wish the weather had been better. Charlotte was snuggled in tight, but it was rainy and cold. She didn't quite get to see Grandpa Russell finish because she got too cold and we had to go home early. Maybe next time!

Today was very relaxing. Pat's parents came over to watch Charlotte, so we could go out for dinner to celebrate his upcoming birthday. It was pretty awesome to be able to enjoy a meal at a real restaurant and not have to worry about keeping Charlotte entertained and happy. We even took in a movie, Paul, and enjoyed it very much. Charlotte had a great time too playing with Grandma and Grandpa.

Charlotte received her last Synagis shot for the season and was evaluated by Minnesota's birth to three program. We're very happy with the results. She was average on all scales for her corrected age and not too far behind for actual age. She's a bit behind (12 months) for gross motor skills but way ahead (21 months) for fine motor skills. A surgeon perhaps? Concert pianist? No pressure, baby girl. :)

Her weight has been fluctuating. Last weekend she weighed 20 lbs 2 oz but then today she was back down to 19 lbs 13 oz. Her vomiting has decreased in frequency but increased in volume. She now vomits about 2-3 times/day, but it's unbelievable sometimes how much comes out of her little body. We have calls into her GI Doctor hoping for some guidance. She was on vacation last week, so hopefully we'll connect with her early this week. Luckily the ear infection seems to be gone. Charlotte's sleeping a bit better, and that's great for all of us!

Hard to believe April is just around the corner! April showers bring May flowers. Please.

March 16, 2011

2011-03-16T21:10:00.004-04:00

We had the best weekend we've had since moving back to MN! It was so fun. Saturday we rested since I still had a cold, which is now almost gone (yay!). Sunday my parents visited and we all went to the Como Park Conservatory for a little break from winter. Charlotte loved it - I'm not sure she can even remember summer, so she thought the leaves hitting her face were pretty funny.

Here she is with Grandpa and Grandma Distad.

Fun with Dad! It looks as though she wet her pants here, but unfortunately that's not it. She had a pretty big throw up, but luckily she was wearing a cute vest that was hit the worst and we were able to remove it.
I love this picture! Charlotte did a lot of walking at the conservatory and we've noticed a huge increase in the amount she walks since. We think her confidence level went way up because she had so much space to move around.

And, Charlotte loves to splash so this rain/evaporation exhibit was right up her alley!

We've had our fair share of visits to her clinic lately. She just can't shake her ear infection, so when round 2 of antibiotics wasn't working the doctors prescribed her with antibiotic shots. Tonight she received her second shot, so hopefully her infection clears up. Charlotte generally doesn't let us look in her mouth, but all the screaming she did post-shot allowed me to see that she's getting her molars! Now we're not sure if she's crying because she's teething or because she has an ear infection. I hold out hope every night that she's going to sleep through the night. It's gotta happen!

Tonight was an exciting visit to the clinic because there was a set of preemie twins in the waiting room and the little boy had an NG Tube. His parents were both nurses and said that putting an NG tube in a baby is much easier than in an adult (yeah, if you're heartless...just kidding). We didn't get to chat long, but their little guy has oral aversion similar to Charlotte. I felt bad telling them that she has a G-tube, but I hope he starts eating sooner rather than later. One thing I miss about Houghton is that here we don't know any other parents who've had a micro preemie. It was nice to have a little community of families who'd had similar experiences.

Charlotte's weight is up! This past Sunday she weighed in at 19 lbs 13 oz.

The U is closed on Friday, so Patrick and I both have a 3 day weekend! Friday is a big day for Charlotte. Minnesota's birth to three program is coming over to evaluate her for services and she's getting another synagis shot. Sunday is a big day for Patrick - his first race since our move back to MN. The weather sounds fabulous, and I'm excited to get outside and cheer with Charlotte.

March 6, 2011

2011-03-06T22:15:00.004-05:00

It's been a while since our last post, but we've been busy fighting germs. Charlotte was hit hard in mid February and had to stay home from daycare for two days due to a fever and vomiting. It was pretty stressful, not only because Charlotte was sick, but because Pat and I are both new to our jobs and hated missing days already. On the plus side, I got to stay home and snuggle with Charlotte for two days and Pat for an afternoon after daycare sent her home.

Charlotte shared her germs with me and Patrick, but as of this weekend we all feel pretty good! I'm just happy to be able to swallow and stay awake past 8 p.m. Woo hoo! :)

Charlotte loves to climb! Here she is scaling the nordic track.

Here's Charlotte on the day daycare sent her home. When I walked up the stairs she was sitting in the chair reading her books. So sweet, but strange to see her happy just sitting.

We've been doing lots of this. At all hours of the day.

Go Gophers!
Patrick has been letting Charlotte play with his keys. They've ended up in the toilet once, and I'm just waiting for them to disappear altogether. :)

Charlotte's eating is back to water only. We've slowed her pump rate significantly hoping that she'll stop throwing up again, but so far no luck. She did much better today, though, so maybe we're getting back on track. Time will tell.

As per GI instructions, we've been tracking her weight. It's going in the wrong direction, but with the sickness hopefully behind us she should start gaining weight.
2/12: 20 lbs 0 oz
2/20: 19 lbs 12 0z
2/28: 19 lbs 12 oz
3/6: 19 lbs 8.5 oz

February 14, 2011

2011-02-14T20:31:00.002-05:00

Happy Valentine's Day! Hope everyone was able to do something sweet for another person (or the reverse) today. Patrick started his new job today and now we're having a quiet evening of laundry and Harry Potter. Charlotte and Patrick are both sick, and I'm crossing my fingers that I won't catch their cold (although Charlotte's tendency to cough in my face makes this unlikely). I was a bit relieved this weekend when Patrick developed a sore throat because it answered the question we've had for the past week and a half as to why Charlotte wasn't sleeping. Perhaps it's partially the transition, but we're sure it's mostly because she's got a bug.

I took a few pictures of Charlotte as we played on Sunday. Saturday we took a trip to the MOA, and it wore Charlotte out. Sunday we decided to keep her home and let her get some rest and start recovering.
And she walks!!! She took her first steps last Thursday, February 10 (her 18 month birthday) for Patrick. So far she's probably taken 5-6 steps in a row, and she has started standing without support much more frequently. I'm trying to get video of her walking, so hopefully soon.

She knows where her socks go! When she tries to put them on it reminds me of Peter Pan trying to stick his shadow onto his feet.

And here she is telling me our photo shoot is over by giving me the camera lens.

Last week Charlotte had her first appointments with her new GI Doc and Pediatrician. We think we're going to be happy with both. Her GI Doctor is very proactive, or a J on the Meyers-Briggs for those of you familiar, as opposed to the laid back "art of medicine" approach we were used to with her last doctor. For example, this new doctor told us with an air of certainty that Charlotte was allergic to dairy products and that's why she threw up so frequently. How incredibly frustrating because we asked our previous doctor about this and he said this wasn't the case and left her on the dairy-based formulas. Who knows if she's correct, because if Charlotte had an allergy, she has outgrown it.

Also, our past GI doctor told us to relax and stop weighing Charlotte and that it was ok she hadn't gained weight because she had gained weight faster than we wanted to. Well, new doctor, new philosophy: She wants us to weigh Charlotte weekly and she wants her to get 4 cans of pediasure per day instead of just 3.

Charlotte loves her scale and thinks it's a fun chair. On Sunday she weighed 20 lbs 0 oz.

Charlotte's pedatrician also seems very nice, and my favorite thing about her is that while she's only in clinic 2 days/week, she has some evening availability. Charlotte's next appointment is at 6:45 p.m.! So nice to miss a little less work for appointments. Oh, and we can e-mail her!

One frustration we've had with the new doctors is their insistence that we're being too tentative with Charlotte's feeds. We feed her at a rate of 125 mls per hour and have been slowly increasing. They think we should be able to bolus her feeds in just a few minutes. Well, we tried this weekend and she threw up everywhere. It was so sad, and just a reminder that doctors don't know everything (almost everything, though!). :)

To be fair, this weekend wasn't an entirely fair test. Apria had some issues verifying our insurance last week and didn't get us Charlotte's monthly refill order before the weekend, so we ran out of the Pediasure Enteral Formula on Saturday. Our GI Clinic told us that the flavored Pedisure in the store is the same stuff, so that's what she's been getting. Since we started the flavored formula she hasn't eaten anything by mouth, so I wonder if the "flavor" is upsetting her stomach. Our regular formula should arrive tomorrow or Wednesday.

February 6, 2011

2011-02-06T15:52:00.002-05:00

Charlotte is ready to cheer on the Packers.

February 1, 2011

2011-02-01T21:21:00.004-05:00

We are feeling very grateful because Patrick has a job! Back in December he interviewed for an Executive Accounts Specialist position at the U and on Friday they offered him the position. It's exactly what he wants to do, and he's excited to start on Monday already! With both of us working full time Charlotte will be in daycare all day (instead of half-days like before). She started today with a half day, and seems to have done ok. I think it'll be an adjustment for us all.

Charlotte has been picking up lots of new information lately! She now loves to push her push/walking toys up and down the hallway, crawls onto the seated position of her scooters (but doesn't yet know how to move herself), and understands more verbal information as well. She knows what "brush your teeth" means (and only recently really started letting us brush her teeth), and she now says "up" to be picked up. A couple weeks ago she learned "uh oh" and says it anytime she throws something onto the floor or if her pump alarm goes off.

Recently Charlotte's eating took a nose dive and she was barely taking water anymore. The past few days things have improved and over the last 24 hours she's eaten almost an entire container of stage 1 baby food and loves to eat water on her spoon. If only one could survive completely on water, she'd be all set.

We are happy to be completely unpacked and the owners of a new-to-us recliner. Because we lived on campus at Tech we had very little furniture of our own. Now we have two chairs in our living room, which will be good enough until we find something more permanent.

Oh apartment living. We like our new home, but our neighbors have made things more interesting than we'd like. They apparently view the police as a conflict-resolution resource and, in the two weeks we've lived here, have called them twice. The second time the police arrived was this past Saturday night. I was unpleasantly surprised by them as I exited our basement (external door) to a flashlight being shone in my face. They assumed I was the person who had called, but after figuring out I wasn't involved in a domestic dispute they told me to go upstairs and lock the door. Lovely. I would laugh, but today I read about a domestic disturbance in Zumbrota, MN that resulted in a shooting death. We're hoping they move or break up.

To emphasize the positive - yay Patrick! We can't believe how fortunate we've been. Life is good.

January 26, 2011

2011-01-26T22:14:00.002-05:00

We're in Minnesota! We've been without Internet, hence the lack of blog activity, but we couldn't live without it and as of this morning we are online!

The move went great, thanks to our friends in Houghton and the Twin Cities. I was a bit worried about Patrick being stuck unloading the entire U-Haul by himself, but that wasn't the case and everything was in our new apartment in under an hour.

Michigan Tech was nice to us up until the end and let Charlotte and I stay in an on-campus guest room (as opposed to our empty apartment), so I got to sleep on a bed! A minor glitch: we had so much help moving that Charlotte's travel bed was loaded into the U-Haul and on its way to MN before I realized it. Luckily one of my former co-workers was able to bring me a toddler bed for her to sleep in. Yes, Charlotte slept in a big girl toddler bed and she did amazingly. The first night she crawled out once, but otherwise she stayed in bed and slept. She and I arrived in MN on Monday the 17th as planned.

My new job is great. I think I'm going to love it! Every once in a while I'll get a little nostalgic and miss Houghton, but then something cool will happen like my parents came up on Saturday just for the afternoon to help us unpack, or Patrick's mom is coming to help with Charlotte this Friday...things we may have taken for granted if we hadn't lived away for a while.

We've been busy unpacking and haven't taken any pictures of Charlotte! I can't believe it. We're close to being box-free, so photos will come soon. Just this week she has started taking a few steps while holding on to one hand! Her first step is just around the corner.

January 13, 2011

2011-01-13T23:34:00.003-05:00

Charlotte sported her new shades on our tour of Wisconsin last week. Her GI doctor in Milwaukee thought her virus may have "tipped the apple cart" and she was just taking longer to recover/regain her ability to not throw up. I wish he could wave a magic wand (it would make the trip feel much more worthwhile), but this week she's been throwing up less, so we think she is getting better.

It's been over one year since Charlotte's G-tube was placed. I remember thinking she'd have it for a couple of months at most, but here we are! The morning before her surgery I took a bunch of pictures of her without any tubes, and now I almost don't even see the tube when I look at her. In any case, here's one of her tube-free photos:

We had a nice Christmas with Pat's family, and then made our last trip "home" to the UP! Our last week at Tech has gone quickly. Today was my last day of work, and it was pretty sad! I'm definitely excited about my new job, but Tech is pretty special. Where else can I go outside in January and find 50+ students cheering on broomball games while groups of students are all over campus making forms for the month-long statue building? Patrick will wrap up his position at the library tomorrow, and then it's time to go!

Charlotte wore her Michigan Tech dress to my going away party. She was very timid around all the unfamiliar people, which meant I got to snuggle with her. :)

Here's Charlotte's post-bath hair. I love how it sticks up all over!

Saturday we load the U-Haul and Patrick will head out that afternoon. He's meeting some of our friends in St. Paul to help unload the truck. Unfortunately, I'll miss unloading the U-Haul because Charlotte needs her Synagis shot on Monday. We tried scheduling an appointment in the Twin Cities, but no one was willing to order her the shot without first establishing as her primary. This process would have taken about 3 weeks, and she needs the shot on Monday. Maybe Patrick will have everything unpacked by the time we arrive! I can only dream...

January 3, 2011

2011-01-03T22:08:00.003-05:00

Welcome to 2011! I hope the new year brings happiness and good health to you and your family!

On Sunday we enjoyed having the Jenson's and Vendlinski's over. These families also had micro preemies and provided what I will term supportive outreach while we were in the NICU. I still remember how stunned and grateful I was to receive a package from a complete stranger at Charlotte's bedside in the Marquette NICU. Lindsey Jenson had sent a care package with reading materials and Charlotte's first preemie clothes - a red and white dress and a pretty pink hat. Then, while we were in Milwaukee the Vendlinski's were in town for a marathon and they took us out for dinner where we met their preemie twins turned perfectly health toddlers. Since then we've met for the occasional dinner in Houghton (including another mom who wasn't able to make it on Sunday). Anyway, they're good people and their blogs are linked to the right.

The students are gone for winter break, so we were able to take advantage of the ballroom in our building and let the kids run around. Here's a rare moment when they were all standing still after Patrick turned off the Vikings game for a bit of Yo Gabba Gabba.

Willow and Charlotte looking pretty serious.

Catherine, Willow, Charlotte, and Lewis. I took about 5 or 6 pictures and this might be the only one where they're all looking in the general direction of the camera. :)

Charlotte may not be looking at the camera in this one, but at least her glasses are on!

Charlotte has discovered the empty cupboards resulting from our packing. Who needs pots and pans when cupboards are such great play spaces?!

I mentioned in my previous post that Charlotte has been throwing up again. She has lost about one and a half pounds as a result, so Patrick and I have started thinking it might be best to return to the GJ Tube. Today we called CHW to find out what Dr. Stephens thought, and he is very opposed to this backward step and considers it a last resort. Since she has lost weight he, of course, wants to see her in clinic. So, we'll be making one more trip to Milwaukee on Friday. Unless Charlotte stops throwing up, and that's what I'm hoping for!

December 31, 2010

2010-12-31T23:19:00.002-05:00

Happy New Year!

2010 was our first full year as parents and it was full of joy! Charlotte is quite the crawler, she giggles regularly, and loves to snuggle. I am grateful she's our baby girl.

She was a good sport at Christmas and happily wore her Santa hat.

Gift opening was more fascinating than exciting, but still fun!

Cousin Blake and Charlotte at Christmas. Look at those cute smiles!

It seems we take 2 steps forward only to take one backward. Charlotte's ear infection has returned, so she's back on antibiotics. She is throwing up regularly again as of about 2 weeks ago. We think (hope!) this is related to her cold and that once she shakes that the throwing up will subside again. The worst part is that any progress we'd made with her feeds has been lost. She's barely interested in water these days.

For now, though, I'm focused on ringing in the new year! We opted to stay in rather than celebrate with friends to allow Charlotte to rest (she hasn't had a good nights sleep in over a week, so let's hope tonight is it). However, it looks like I'll be the only one awake in our household when midnight rolls around. I'm looking forward to our last New Years in the eastern time zone. Next year we'll be back to watching the ball drop at 11 p.m...I really don't mind going to bed at 11 p.m.! :)

December 22, 2010

2010-12-22T22:19:00.005-05:00

Merry Christmas! Our holiday vacation had a rough start, but things are already looking up.

Charlotte went home sick from daycare last Friday after she threw up, and she then developed a fever and bad cough over the weekend. On Monday Charlotte's pediatrician prescribed nebulizer treatments twice daily for 2-3 months. At first Charlotte was very resistant to the nebulizer (screaming, pushing), but she's pretty ok with it now. We've noticed that she falls asleep much more easily, so it's definitely helping her breathe more easily.

Last winter Charlotte received Synagis shots to prevent RSV. This winter we weren't able to get them for her because our insurance would only cover them if she was being treated for her Chronic Lung Disease. Well, the nebulizer counts as treatment, so Charlotte will once again be protected from RSV.

Then, we made what we hope is our final trip to Children's Hospital of Wisconsin in Milwaukee on Tuesday! Let's back up a bit...In late November we decided to remove Charlotte's GJ Tube (because she'd stopped throwing up - yay!), and put in the Mic-Key Button G-Tube again. We were able to do this ourselves at home, but we've been concerned because the tube itself (the hardware) has been leaking. We tried putting in our spare Mic-Key button, but it also leaked. We finally called CHW on Monday and Charlotte's nurse wanted to see her right away, so we drove down first thing Tuesday morning. Here's a picture of Charlotte barricaded on our bed while we finished getting ready to go:

Nurse Amanda had never seen a G-Tube leak like this before, so she deduced we must have received a faulty batch of Mic-Key buttons. She ordered up a new button and we haven't had any problems since. After leaving CHW we did a little shopping at the mall and as we left the mall we decided to drive to Eau Claire Tuesday night instead of waiting until Wednesday morning. The trip went smoothly except for a stretch of icy roads from Wisconsin Dells to Mauston, WI along which we saw 20+ cars and 3 semis in the ditch. It was all worth it though to wake up and not have to drive this morning!

Let the holiday celebrations begin! Tonight Grandpa and Grandma Russell took us to have dinner with Santa at Fanny Hill. Patrick went to this when he was a kid, so it was extra special to bring Charlotte. Here are a few photos from the evening:

Let's Eat! Wait, why is my shoe on the table?

Santa was a bit scary,

but better at a distance.

She loved it! She met Frosty and Rudolph!

Have a very Merry Christmas!

December 18, 2010

2010-12-18T18:49:00.004-05:00

Boxes? A UofM penant? Yes, we are returning to Minnesota! We'll be moving the weekend of January 15, so if you'd like to help us load or unload the U-Haul, please let me know. Your help would be appreciated! :) Oh, and there'll be pizza or something in it for you!

I am looking forward to joining the College of Biological Sciences in Student Services as an Academic Advisor. I interviewed on December 10, and so got to experience the 5th biggest snow storm in Minnesota history. My flight was canceled due to weather in Chicago, so Patrick and Charlotte drove down with me (two drivers is always nice), and rather than returning on Friday night or even Saturday morning we ended up staying until Sunday...and still hit blizzard conditions in the UP. Oh yeah, the interview. It went well! The Student Services staff seemed great and I'm looking forward to working with them.

Of course leaving is bittersweet - we'll be closer to family, friends, and medical care, but we're both leaving jobs we enjoy, and we'll miss all the great people we've gotten to know here. However, any doubts we had about leaving Houghton were erased when approximately 2 hours after I accepted the position Patrick received a call inviting him to interview for a position at the UofM. This is a job he says is exactly what he wants to do, so I hope it works out. If not, we both feel a bit more confident he'll be able to find something sooner rather than later.

The past couple of days we've been busy on the Internet looking for a 2-bedroom apartment and also researching our daycare options. If anyone knows of an apartment near the UofM (Highland Park, south Mpls, around the U) please let us know. Or, if you have daycare recommendations (or warnings) please send them our way!

Charlotte's language skills are developing! While she's not a big talker yet (she was saying "hi" for a while and she's pretty good with "dada"), she knows how to hug (see photo above) when we say "hug" and she blows kisses when we say "kiss". She's also learning where her (and our) noses are!

We're still trying to turn her into a winter lover, but it's going to take some time. We got another sled that supports her and helps her sit. She cried pretty much the entire time we had her in the sled.

Well, I'd better get back to packing and gift wrapping! We'll be in Wisconsin and Minnesota for Christmas, and we look forward to celebrating the holidays with family.

November 29, 2010

2010-11-29T23:43:00.002-05:00

Hope everyone had a great Thanksgiving. We had a fun weekend and took quite a few pictures!

Charlotte had fun with Grandma and Grandpa Russell. Here she is watching a video of herself. At what age is Narcissism no longer cute?

AHHHHH!!!! (says Charlotte the dinosaur)

Hanging with Daddy.

We got outside for a few minutes, but Charlotte was not a fan. Pretty sure she just didn't like being bundled up.

She couldn't even sit up! Here she is closing her eyes just hoping it'll be over soon. Maybe next time will be more fun!

November 23, 2010

2010-11-23T22:22:00.004-05:00

Charlotte's glasses arrived today! She seems to have adjusted to wearing them pretty quickly. Here she is outside the vision clinic with Patrick.

As you can see, winter arrived in Houghton last night!

November 22, 2010

2010-11-21T21:58:00.006-05:00

What a fabulous weekend! Patrick had a great trip to the JFK 50 mile in Maryland with his friend Andy. I knew he was feeling good when he called me to let me know he'd slept from 12:30 a.m. to 8:10 a.m. the first night. He then rewarded his well-rested body with a punishing 50 mile run, which I'm sure he'll post about in detail on his running blog: theunforgivingminute.blogspot.com. In short, he finished in 6 hours 26 minutes for 9th place - go Pat!

While Patrick was off partying it up at places like IHOP and historical Gettysburg, I was enjoying every second of my first extended weekend of single parenthood. Charlotte and I started off the weekend with Friday morning appointments at Children's Hospital of Wisconsin before heading off to Grandma and Grandpa's house in Minnesota.

Charlotte's developmental appointment brought only good news. No concerns, and her report card is below. In italics on each line is how this visit compared to her last visit in May.

Age from birth date: 15 months, 9 days; 9 months 4 days
Age from due date: 12 months, 10 days; 5 months 21 days (One thing I love about CHW is that they are not afraid to use her adjusted age for developmental milestones. You may notice the growth information from her pediatrician appointment a couple of posts ago is comparing her to other 15 month olds which just doesn't make sense).

Growth Progress:
Weight: 20 lbs 1 oz (45th percentile); 14 lbs 7 0z (25th percentile)
Length: 27.5" (10th percentile); 24.5" (10th percentile)
Head size: 17.75" (57th percentile); 16.5" (45th percentile)

Bayley Test Scores: Age Equivalent
Cognitive (Play skills): 15 months; 7 months
Fine Motor: 15 months; 6 months
Gross motor: 11 months (because she's not yet walking - still normal range though); 6 months
Receptive Language (Understanding): 9 months; 4 months 10 days
Expressive Language (Talking): 10 months; 6 months

Her receptive and expressive language skills are a bit behind, but the therapists were confident she'll be talking and understanding in no time and did not recommend any additional therapy. After the developmental appointment we saw GI and have started slowly transitioning Charlotte's feeds back to her G-port, so the food goes into her stomach instead of her intestines. Hopefully this goes well, but if she starts throwing up again we'll go back to the J-port. So far so good!

We had lots of fun at Grandma and Grandpas! I took a few photos:

Charlotte got to do whatever she wanted, including emptying drawers.

She's learning to help with the dishes!

Grandma introduced Charlotte to the piano, and she loved all the buttons!

And, Charlotte had a nice time playing and reading with Grandma and Grandpa. Sad to leave, but Christmas will be here before we know it!

Today we met with Charlotte's speech/feeding therapist and are going to start thickening pureed foods using rice cereal. When she took an entire container of apple sauce I was ready to pull out the feeding tube and be done, but that's just not how it works. Slow and steady.

We're all home and happy to be together again. Patrick and I don't have any separate trips planned, so hopefully we'll be able to relax a a bit with two of us to watch with Charlotte. Everyday she gets more and more fun to play with! So full of laughs and smiles. :)

November 17, 2010 - She Eats!

2010-11-17T17:38:00.002-05:00

Charlotte has discovered the joy of food! Today at daycare she ate an entire container of stage 1 baby food, apple sauce. Wow, what a difference not throwing up can make.

For weeks in the NICU the nurses told us that she would just start eating out of the bottle one day, and they were right (just off on the timing and we skipped the bottle).

November 15, 2010

2010-11-15T21:22:00.001-05:00

Charlotte has made significant steps with her feeding. This progress correlates with a decrease in vomiting. Over the past week she has basically stopped throwing up, except for first thing in the morning when she wakes up and even then it's less than we've seen in the past.

This afternoon I met with the representative from Early On and Charlotte's teachers from Little Huskies. Early On reminded me of something I'd nearly forgotten: when we started with the practice feeds back in January we would simply touch a dry spoon to Charlotte's cheeks and lips. Now she takes water like a champ! Little Huskies has had amazing success feeding Charlotte, in large part because Charlotte is a social butterfly and loves doing what the other kids are doing. Last week they took a video of her feeding practice and we're posting it now because we just got permission from the parents of the other kids in the video. They're pretty fun to watch.

During this afternoon's meeting we developed goals for Charlotte. Over the coming months and within a year we want her to:
Walk independently
Start babbling more consonants than the "la" and "da" we hear regularly now
By next November develop a vocabulary of 10-20 words
Eat a cracker (within 3 months)

I'll definitely talk with the specialists in Milwaukee about these goals, but it was fun to set them. During the meeting I was reminded about how lucky we are to have Charlotte at Little Huskies. Not only has the social aspect been great for her development and happiness, the staff are phenomenal.

November 14, 2010

2010-11-14T16:05:00.003-05:00

Last year this time we were adjusting to having a baby at home, and believe it or not an entire year has passed. Charlotte came home from the hospital on November 11, 2009 and while some parents remember taking their baby home from the hospital as a time of anxiety/nervousness, we recall a sense of liberation and joy. The pictures on this post were taken the morning of November 11 shortly after she woke up.

She had her 15 month pediatric appointment on 11/11 and everything went fine.
Height: 28.5"; 7th percentile
Weight: 19.95 lbs; 10th percentile
Head: 45 cm; 25th percentile

About a week ago Charlotte had a developmental follow-up with Early On, Michigan's birth to three program. They didn't have any concerns outside of her not eating. We go around and around with this conversation, but they want her to see a speech therapist in the UP. We are fine with this and would love her to have some additional help, but we also insist they communicate with her therapist in Milwaukee to ensure some consistency. We'll be seeing Early On again tomorrow, so I'll see if they followed up with Dr. Arvedson.

Last weekend was a trying one for Patrick and Charlotte. I traveled to a conference in St Louis Saturday through Tuesday. Late Saturday night Charlotte started throwing up bile and stomach juices constantly - every 10 minutes all night long. Finally about 5 a.m. Patrick turned off her feed and she settled for a few hours, allowing him to get a couple hours of sleep. Of course he woke up to happy playing sounds coming from the crib only to find Charlotte thoroughly enjoying playing in her own diarrhea and throw-up.

Later that morning Patrick took her to the ER at Portage Health since the throwing up had resumed with her feeds and her cheeks had broken out in a rash. She was diagnosed with Fifth Disease, also called "Slap-cheeked Syndrome". There wasn't much treatment besides letting her rest and trying to get her fluids through her tube. Charlotte started to recover slowly throughout the day on Monday, but about mid-morning Patrick started to feel the effects of a stomach bug coming on. While Charlotte was at daycare he spent the afternoon sleeping and throwing up. Luckily Charlotte was starting to feel better and slept most of the night, although she still couldn't be fed on her regular schedule.

And just so I didn't feel left out I managed to spend Sunday night sick as well and had a relapse later in the week after I got back. Hopefully we're done with the "sick" thing for a little while. Of course, with Charlotte in daycare it shouldn't be too long until we all get the illness-du-jour.

The weekend has been great. Pat's sister, Kelly, visited from Minneapolis and we hope she enjoyed her visit because we sure did.

Tomorrow we're back to work for a three-day week until we head off to Milwaukee on Thursday. Thursday evening Patrick will fly to Maryland for the JFK 50 miler - his first time away from Charlotte since she came home (a well-deserved break). Charlotte and I will have a busy weekend with 2 appointments on Friday and then a trip to see Grandma and Grandpa Distad in Minnesota.

November 2, 2010

2010-11-02T20:12:00.002-04:00

We had a great weekend in Eau Claire celebrating Pat's mom's retirement and birthday! Charlotte loved seeing family and playing with them. Charlotte even dressed up for Halloween (against her wishes) as Tinker Bell. It took her a few minutes to adjust to her costume, but she eventually stopped trying to pull it off.

There is a possibility that Charlotte uttered her first word tonight! When Patrick came into the room she pointed at him and said "da da". Now, she babbles pretty regularly and da da da da da is one of her favorites, but this time just seemed different. We'll see if she does it again!

October 27, 2010

2010-10-27T23:36:00.004-04:00

Happy Halloween! A bit early, but we're celebrating all week. We carved Charlotte's pumpkin tonight since we're heading to Eau Claire on Friday for the weekend.

All ready to clean out the pumpkin!

Perhaps she'll be ready for some pumpkin pie by Thanksgiving! It was pretty hilarious to see her nearly chomp on this huge piece of pumpkin. I see this photo as evidence that the GJ Tube has been a success; she is willing to explore with her mouth and hopefully that'll turn into swallowing and eating at some point.

We made it to Marquette and back yesterday in the "land hurricane" (I don't think it was an official land hurricane yet - it really wasn't bad at all). Charlotte was prescribed glasses. She is nearsighted with a refraction of -4. The doctor didn't think they were absolutely essential until she starts walking, so we're not rushing to fill the prescription. Soon, though, some adorable pink, purple, and/or sparkly spectacles will join Charlotte's wardrobe.

October 22, 2010

2010-10-23T21:02:00.003-04:00

We couldn't have asked for a more beautiful fall! The colors were incredible, and now that the leaves are on the ground Charlotte has had lots of fun with them.

Last week Sunday - Wednesday I went to a conference in Washington DC. This was the first time I've been away from Charlotte for more than one night and it was hard on both me and Patrick. My first night away Charlotte was up from 2:30-4:30 throwing up, so Patrick was extremely worn out from the beginning. Luckily the nights/days following were better. Charlotte got to go to daycare full-time for the three days I was gone, giving Patrick time to run and accomplish miscellaneous tasks while a single parent.

I did get to Skype while I was gone, and I've never had such a desire to hug my laptop! Without trying to give Charlotte a complex, I brought her back a "Future President" onesie from DC. No pressure. :)

Today we made a trip to the pumpkin patch, and Charlotte investigated this pumpkin at great length before deciding that it was the one.

While there we got to see a pumpkin catapulted over a field. Patrick and I thought it was awesome, but Charlotte was more interested in watching the people around us. Maybe next year she'll be watching the right direction when the pumpkin launches.

Tuesday we head to Marquette for Charlotte's eye exam. We're looking forward to finally knowing more about how good her vision really is. There's a chance she could leave with a prescription for glasses. If she does, her daycare told me this week to call them before we order any glasses because certain clinics in the area are willing to donate frames to Little Huskies when a child needs glasses to prevent the other kids from wanting to pull them off of her face (I'm sure she'd do enough of that herself). Just the latest reason we love Little Huskies.

Friday, October 1

2010-09-30T22:42:00.013-04:00

Fact: this week has not been boring.

Between 11 a.m. Monday and 11 p.m. Wednesday we made 2 unexpected trips to Children's Hospital of Wisconsin after Charlotte's GJ Tube came out. Monday morning it came out when Charlotte crawled across the living room before Patrick could move her pump bag and the weight of the bag pulled it out. We returned to Houghton at 12:30 p.m. on Tuesday, dropped Charlotte off at daycare before even going home, and received a call from her teacher at 3:50 p.m. that another child had pulled out her tube. Lovely!

Luckily CHW was amazing as usual. She received a low profile GJ Tube, so now she has a port similar to the Mic-Key button. Charlotte's GI Doc, Dr. Stephens, and Speech Therapist, Dr. Arvedson, both gave up their lunch breaks to see Charlotte while we were in town on Wednesday (saving us a planned trip at the end of October). Both were pleased with how she's doing. Her weight gain has been faster than ideal, so we are changing her feeds from 24 cal to 22 cal/ounce.

In order to give this newly mobile baby some additional freedom (and hopefully prevent tube issues) we're going to increase her feed rate to give her some pump free time during the day. Currently she receives 40 mls/hr over 23 hrs/day. We're going to increase 45 mls/hr with 3.5-4 hours off and if that goes well to 50 mls/hr with 5.5 hrs off and potentially even 55 mls/hr with 7-7.5 hrs off.

Weight: 19 lbs 9 oz (she lost some weight over a couple days without eating regularly)
Length: 27 inches

Our second trip to Milwaukee inspired the interventional radiologist to investigate alternatives to us driving there for every tube issue and had some potential success - a doctor in Marquette is willing to try to place the GJ Tube if it comes out again. Yay!

On to other, more fun things:

Charlotte has become a busy girl. Now when we Skype with grandparents it's a family affair. Patrick or I move the laptop, Charlotte crawls after the laptop, and Patrick or I follow along with her pump bag.

Charlotte can now pull herself up just about anywhere (couch, crib, against a flat door, etc). Here she is in her big girl PJs. Yesterday we put a crate down on the kitchen tile and Charlotte stood up and used it as a walker to get around. She seemed a little surprised each time it slipped forward a few inches, but she would steady herself and walk her little legs right back up to it.

She's full of smiles!

Last week Monday - Wednesday the Hoenisch's visited from Madison. It's great to see Andy and Robin and so fun to watch Calvin and Charlotte together.

Then this past weekend Grandpa and Grandma Distad visited from Minnesota. Charlotte loves the extra people to play with and we even took her to the park. She's not a fan of the swing, but she enjoyed standing and talking to another baby she met there.

We got a new travel bed for Charlotte (just in time for our trips to Milwaukee I might add). Charlotte slept comfortably in the Peapod Plus, a little tent that folds up nicely, is light, and can be used on the beach for shade during the summer. It's also fun to play in.

September 6, 2010

2010-09-06T22:33:00.003-04:00

Charlotte had lots of fun this weekend with Grandma and Grandpa Russell who visited from Eau Claire.

She showed off her new love of climbing. On Friday she started moving from her knees to her feet when pushing off of objects about the height of a large CD case. This is now one of her favorite things to do.

Charlotte took another trip to the beach! Here she is with Grandma Russell. Next summer we're going to get her a beach bucket and scoop set, but for now a plastic cup and spoon will have to do.

There's no better way to end the day than reading stories with Daddy.

Charlotte keeps growing! This morning she weighed in at 19 lbs 0 oz. At this rate she'll have no problem clearing the 20 lb mark necessary for a low profile tube by October when we return to Milwaukee.

Perhaps I'm feeling optimistic, but today Charlotte gave me reason to be hopeful that eating is in her future. At daycare Charlotte has been tasting pear juice without too much resistance, so Patrick and I decided to pick up some stage 1 pear baby food this afternoon and Charlotte ate it! We've tried apple sauce and mushed bananas in the past and she would tolerate some on her lips, but she didn't really swallow much. Today I put the baby food in her mouth and while she didn't ask for more, she did swallow it. We also bought stage 1 sweet potatoes, carrots, bananas, and apple sauce so we'll see how she likes those.

She is such an awesome baby! We are so very grateful every day.

August 30, 2010

2010-08-30T22:12:00.004-04:00

Since our last blog post I've been an absentee parent, only coming home to sleep a few hours before hurrying back to work for new student orientation. It's exciting to have all the new students back on campus, but I'm very happy to have spent this evening with Charlotte! I missed her (and Pat) very much!

While I was working Patrick took Charlotte on a tour of the Keweenaw and snapped the above photo. So beautiful! That same day he took Charlotte to see her first triathlon, but unfortunately it was a bit chilly for her to be out too long.

It looks like she enjoyed the time she was there, though. Here Patrick caught her mid-clap. She's started clapping pretty frequently now, and that's been fun.

In addition to clapping, Charlotte has developed many new skills over the past couple of weeks. She first crawled while skyping with my parents; Patrick would pull the computer away and she would crawl toward it. For a while the laptop was the only thing motivating enough to get her to crawl, but that's quickly changing.

She can sit up from lying down completely on her own. It's amazing how coordinated she's become in a matter of days. She is able to pull herself up onto her knees and I'm sure it won't be long until she's able to get up onto her feet.

Since Charlotte can now sit up independently and is starting to pull herself up we lowered her crib tonight. Here she is checking out her new digs.

Such a sweetie! I love seeing her smile and here you can see her teeth! She had about 4 last I checked - two on top and two on the bottom.

The last weight I could find in her blog was from July 30 when she weighed 15 lbs 15 oz. Today she weighed 18 lbs 14 oz. Wow. This is faster weight gain than is recommended for infants and we keep waiting for it to level out, but so far, each day we're shocked at the new number on the scale. Charlotte's pediatrician recommended we feed her less per day, but the dietitian at Children's Hospital wasn't concerned. It's tough when you have to choose whose advice to follow, so we've decided to relax a bit with the amount of time Charlotte is on her pump. Rather than rushing through feed changes to make sure she's being fed for 23 hrs/day we give her a few extra minutes tube free to play and bathe.

The new tube has helped Charlotte to throw up less, she now only throws up 3-4 times/day and it's a small amount of bile. We do about 3 fewer loads of laundry per week and have plenty of extra burp cloths. Yay!

Charlotte loves daycare! At first she wasn't quite sure how to react to the other kids but now she enjoys watching them. She still doesn't like when they touch her (one girl in particular was fascinated by Charlottes hemangioma and wanted to poke it) or play too close but when we dropped her off today she was very interested in what the other kids were doing, so I'm sure she'll be joining in soon enough.

It's a good thing she likes daycare because she already got her first cold. It was pretty nasty and even gave her pink eye (who knew! Not all pink eye is contagious, it can be caused by a cold.). Her nose is still runny today, but she's back to her cheerful self. We're glad she's building up her immune system but are bracing ourselves for a long winter of runny noses.

August 11, 2010

2010-08-11T17:53:00.007-04:00

With drilling going on across the hall, Charlotte got an early birthday wake-up call yesterday. That made for a cranky morning. But after a long mid-day nap she was ready to celebrate and entertain!

Katie spent the previous couple of days baking and frosting cupcakes to bring to our respective workplaces. Charlotte and I dropped some off at the library and then visited Katie at work where she got some more birthday gifts. Here she is sporting the stylish wear her babysitter Andrea gave her:

Then family from Florida and Minnesota visited. We all went out to dinner (Charlotte brought her own) and returned to eat cupcakes....or whatever you would call this:

Last week Charlotte got a new, smaller/lighter feeding pump. We still had to use the bag from her Joey pump, but today she got a stylish new accessory:

Infinity doesn't seem like a good name choice. Enteralite Temporary inspires more confidence.

I make this look gooooood.

It's much smaller and compact than her other setup which we hope will help as Charlotte becomes more mobile:

What you don't see in that last picture is Charlotte tipping over backwards soon after it was taken. So we're not quite there yet, but soon!

Tomorrow is Charlotte's first day at daycare, a milestone we've anticipated and dreaded at the same time. But Little Huskies has pretty much won us over already. Today I took Charlotte there for a short while to show the staff how her pump worked and other general care instructions. I know we're paying them, but we are appreciative that they are willing to take her in given that she requires a little more attention than most of their charges.

One of our main concerns is her tube getting pulled out by inquisitive little hands (other kids and hers). But they let me know that they purchased little backpacks and tubes for all the kids to have in order to downplay Charlotte's curiosity factor. Like I said, we're paying them, but that is over and above and I think it makes going into this much easier knowing there is that support there.

August 10, 2010: The Good

2010-08-10T08:12:00.012-04:00

August 10, 2010
Acutal Age: 12 Months
Corrected Age: 9 Months
17lbs 3oz

Happy Birthday Charlotte! Enjoy your new enteral feed pump!

It's a party!

Who needs gifts when you've got wrapping paper!

Did somebody say cake?

Oh, that's what you meant by cake. No thank you.

Non-eating can be a stressful business.

@#&%$!

Sitting on great-grandpa's lap is a good place to be.

Working on my wave. Sort of half-hearted in this picture.

August 10, 2010: The Bad

2010-08-10T05:16:00.010-04:00

August 10, 2009

In our experience* these are essential terms for new parents to be familiar with during the first year:

Complete blood count (CBC), ventilator, continuous positive airway pressure (CPAP), nasal canula, peripherally inserted central catheter (PICC), pulse oximeter, Methicillin resistant Staphylococcus aureus (MRSA), contact isolation, pulmonary hypertension, bronchopulmonary dysplasia, retinopathy of prematurity, nasogastric, gastronomy, gastrojejunal, stoma, enteral feeding, Mic-Key button, foley tube, emesis (mucho grande), grams in an ounce (~28), milliliters in a fluid ounce (30)

*experience not typical. Consult a neonatologist before using any of these terms.

We'll save the trite "oh how the time flies" and "what a year it's been" and just cut to the chase: the past year has been a grind, pure and simple. It has been long and difficult and to have made it through without suffering a nervous breakdown or divorce is a minor miracle. And marking a year on the calendar represents a little less of a milestone given how far we have to go.

That's not to say we feel sorry for ourselves in any respect because, first of all, Charlotte is amazing and worth every 12 hour drive and late night puke-fest. And also being in the NICU as long as we were, we saw how truly bad things can get and we didn't even approach it. Not even close. We brought Charlotte home and that is a gift that some NICU parent's don't get.

It's just the relentlessness of the past 365 days that has worn us to the bone. The feeding schedule. The pumping schedule (I'll defer to Katie on that one). The doctor schedule. And those are just the planned items. Being constantly aware of where the feeding tube is every time we pick up Charlotte is one of those sneaky things that drains a little bit of mental energy without really being conscious of it.

But Katie has developed an excellent assessment tool for us to take anytime were feeling stressed and trying to cope: The Side of the Road Test. In the darkest hour (usually around midnight on US 41 between Crystal Falls and L'anse) if we can ask ourselves "Would I be happier to leave Charlotte on the side of the road and drive off?" and answer "No", then we pass and move on. We've passed easily to this point.

It's hard to say how different things would be if Charlotte had been full-term. We've obviously had some things to deal with that full-term parents don't, but it seems a lot of it is relative as well. If Charlotte hadn't been 1lb 7oz and on a ventilator for weeks and so on and so on, wouldn't we just be stressed about other things like sleeping through the night or...as I'm typing I just realized I have no idea what sorts of things "normal" parents deal with. But I'm sure whatever there is, it is stressful because it's your child and tallying up who has had it harder is just semantics and a waste of time.

However, with all of that, I do think it is time to consider the real possibility that Katie or I violated some sacred burial ground.

August 2, 2010

2010-08-02T21:04:00.006-04:00

"Why can't they just say, 'go to this place, and here is the treasure; spend it wisely'?"

The above quote is from the movie National Treasure and mirrors our exasperation in regards to many things in Charlotte's short life, from the night she was born onward. Why can't anything work properly without requiring calls to on-call medical staff and midnight drives?

We thought we were playing it safe after her initial GJ procedure by staying in Milwaukee overnight and checking out of our hotel at the last possible moment in order to ensure that all was well with the new tube. We talked to GI before we left and got the okay to occasionally vent her G-tube port to give her a little relief. Everything appeared to be in working order.

Our drive to Eau Claire to celebrate her first birthday was uneventful, save for the usual Wisconsin Dells insanity. However as early on as Friday night we began to have minor difficulty keeping her pump bag hooked up to her GJ tube. We would occasionally check her tube only to find her soaked and the pump disconnected under her onesie.

The issue got progressively worse over the weekend to the point that Katie would watch the tube disconnect as she was holding Charlotte while she was sleeping. We tried tape and twist-ties to no avail. The tube would just disconnect a few minutes later. Sunday morning I woke to find Charlotte and her bed soaking wet. She hadn't gotten fed all night.

It was at that point that Katie got on the phone to Interventional Radiology at CHW and we received the lone medical bright-spot of the weekend, the on-call nurse Sue. She listened to Katie describe what was happening and diagnosed a clogged tube. After three days! She had us try using soda water to flush the tube and that helped somewhat, but it wasn't long before the back pressure pushed the tubes apart again. Sue gave Katie the bad news that it was time to come back to Milwaukee. Katie said she sounded sincerely sorry, in our experience an unusual show of emotion from on-call medical staff. Sue did all the leg work to make sure the on-call doctor and another nurse would be there when we arrived.

We packed up with great haste and left my parents house in Eau Claire around 10:00. With a lone stop back in the Dells, we arrived back at CHW (cringe) at 2:45 and were greeted by Nurse Sue, Dr. Johnson and Nurse Chris. Dr. Johnson concurred about the clogged tube and Charlotte went back under the fluroscopic x-ray.

The first task was to confirm the current tube was clogged. Due to Charlotte's small stature, her current tube was the smallest they could go, 6fr. Typically the smaller the tube the more easily it can get clogged, a minor inconvenience for a family living in Brookfield. A nightmare for a family living in the UP. Dr. Johnson indicated that there was some blockage, but not necessarily enough to cause the issues we were having. Then we went over the various ways to tighten the connection of the GJ and the pump.

No solution presented itself, so it was decided that we go with a one-size larger J tube, 8fr. Apparently it is rare for an 8fr to clog, especially given that Charlotte is not on any sort of crushed medication.

This post is too long already, so the medical team did their thing, Charlotte got the new tube which seems to work (and has an adapter on the end that holds her pump connection great - where was that on the other one!), and we got on the road around 4:45p.m. arriving back in Houghton at 12:30a.m. She is back on her 23 hour/day feed and we're ready to be done traveling for awhile.

Through all this, the driving especially, Charlotte was amazing. She had very few fussy moments and bounced back after her second GJ procedure in four days pretty quickly.

But of course, that can't last long, and tonight Katie noticed that her gastronomy site is infected. Dr. Colleen at Portage Health (another call to an on-call physician! our raison d'etre) will see her tomorrow, but doesn't seemed too concerned.

Tomorrow we'll post some pictures from her birthday get-together. A much happier post guaranteed!

July 30, 2010

2010-07-30T09:56:00.006-04:00

And the Grastrojejunal Tube is in place! It has been a pretty stressful 24 hours, so to start the blog I'm posting a fun bath photo from earlier this week. Look how much hair she's getting!

Yesterday we departed Houghton at 7 a.m. EDT and ended Charlotte's feeds at 9 a.m. CST in preparation for her 3 p.m. procedure at Children's Hospital of Wisconsin. At around 11 a.m. she woke up from her car nap and was the happiest, most content baby we have ever, ever seen. It was absolutely delightful. She stayed awake for the rest of the day (a first!) and played happily in the car and then in the hotel room when we arrived around 2 p.m.

Then we, being the cruel parents she has every reason to believe we are, took her to the Radiology center at CHW for her GJ Tube. This was supposed to be painless, but then we've heard that before.

Only one of us could be in the room with her during the procedure so I stayed while Patrick went to the waiting room. The Physician's Assistant performing the procedure had never seen an AMT button before and struggled to remove it. Another doctor made an attempt and just as their frustration was becoming clear and they were leaning toward calling GI to come remove it, it came out with one hard tug. By this time Charlotte is screaming with tears rolling down her face and I'm trying so hard not to cry (the PA said if we couldn't handle it we should both be in the waiting room so I had to look tough).

Of course placing the GJ Tube didn't go smoothly either. For some reason they had difficulty pushing it in but eventually everything was in place. In all, the procedure probably took no more than 15 minutes. When Patrick came back to the procedure room he surprised Charlotte with a balloon! She loves these balloons - so fun to play with. Here they are with the balloon back at the hotel:

We thought the GJ Tube would externally look just like the G Tube, with a low profile button. When we arrived the PA told us she had to be 20 lbs to receive the low profile version and since she's only 15 lbs 15 oz (almost 16 lbs!!!!) she got a bulky piece of hardware.

The picture above shows the material they gave us to wrap around her belly and keep the external portion of the GJ covered, away from prying, pulling hands.

And here is what we see of her GJ Tube. The round disk should be kept flush with her skin and just above it is a black mark so we can monitor if the tube is being pulled out of place. As you can see, there are three ports.

BAL. is the port used to inflate the balloon which holds the GJ in place. We are never to touch it because we would have no way of knowing if the placement is correct. Only Radiology can do this.

Gastric empties directly into her stomach. We won't use this port unless we are told to vent her G-tube and let the gastric juices out.

Jejunal empties directly into her intestines and this is where we hook in her pump to administer her feeds.

An up close view of the entry point which is often compared to the holes many people have in their ears for earrings.

Here she is all hooked up! The pump is now running at a rate of 45 mls/hr. She's yawning (not crying) in this picture.

I spoke with the Dietician at the GI Clinic this morning and she is decreasing the volume of Charlotte's feeds from 1050 mls/day to 805 mls per day. So, we'll be feeding her at a rate of 35 mls/hr 23 hrs/day. We need to flush the tube with 10 ccs of water every 4 hours to prevent it from getting plugged. If it does get plugged, get this - we can try to clear it with coke! If that doesn't work we'd need to bring her back to CHW for a fresh tube - not an easy thing for us to do in Houghton, but it'll happen if it needs to.

Last night was a rough night. Charlotte probably slept a total of 4 restless hours. I'm currently waiting on a return call from the GI Nurse to find out if we can do something to make her more comfortable.

On a side note, I've been told more than once since having Charlotte how lucky I am that she was premature and I didn't have to get so big and uncomfortable with my pregnancy. I want to let everyone know that having a premature baby is in no way a good thing. Having a premature baby that we got to take home is very much a blessing but I would trade any amount of pregnancy weight for a full-term, healthy baby. Even now it's heartbreaking to hold her hand and hold her down while she screams during procedures and last night to hold her for hours while she cried out of discomfort and threw up stomach juices. But again, the blessing is that we get to hold her and love her and know that things are going to get better, 20 years from now these will all be distant memories.

July 18

2010-07-18T19:59:00.000-04:00

Another beautiful day on Lake Superior. After a week of 90 degrees in Minnesota it was a bit of a relief to come back to highs in the 70s (no break from the humidity however).

Charlotte has been so happy during the day this week. She plays for long stretches of time and is scooting around on her butt. No crawling yet though.

The trade-off has been some pretty intense nights. Between teething and stomach discomfort Charlotte has been protesting at pretty regular intervals overnight . We're interested to see what effect the GJ tube has. The longer continuous feeding regimen didn't pan out. She threw up just as much only smaller amounts, more often for 20 hours per day. So we're back on 2 hours on, 1 hour off until she gets the GJ on 7/29. Never thought I'd say I'm glad we're back on 2hours on, 1 hour off.

Getting less sleep overnight has meant that Charlotte sleeps a little later in the morning which mom and dad have both appreciated. After a relaxed morning we headed out with the intention of going to Hungarian Falls, but as we drove someone nodded off in her car seat and so we kept driving north for awhile, arriving at Seven Mile Point on Lake Superior.

July 11, 2010

2010-07-11T23:06:00.004-04:00

We had a great vacation. Charlotte saw both sets of grandparents and met many of my aunts, uncles, cousins, and second cousins. It's so nice to finally feel free to take her places without fearing every cough/sneeze and without pushing hand sanitizer on everyone within arms reach of Charlotte.

We are happy to have arrived home safely and are getting back into our routine. Here are a few pictures from the week:

We visited Oxbow Park with my parents, Aunt Mary, cousin Karen, and Karen's 3 kids. The weather was perfect (some might say it was hot) and the day was lots of fun.

It was impossible to get a picture with all 4 kids looking at the camera, but this was pretty close.

Children of the Corn? No, just Charlotte's first time seeing a corn stalk!

Charlotte isn't quite sure what to think of grass, especially damp grass. Though she is quite skilled at not touching the grass with any of her limbs - look at that balance!

"He loves me, he loves me not..."

She wants to crawl, and is so close! Good thing she's not going anywhere too fast because our apartment is not yet baby proofed. We're slowly but surely packing up all of our books and bookshelves so that she won't pull them down on top of herself when she does become mobile.

Here's a picture of Pat going against doctor's orders. :) Charlotte loves to stand and she's pretty good at holding herself up against the couch. However, the developmental doctor, Dr. Bear, strongly advised us to not hold her up with her weight on her legs. Her philosophy is that babies have so many stages to go through (sitting, crawling, then pulling themselves up, then walking) and we don't want to encourage her to skip them. We follow the rules most of the time, but sometimes it's just fun to see her stand up...and she loves it!

A day late, but here is Charlotte's 11 month photo! What a great 11 months it has been - and almost one year! We feel so blessed to have such a fun, happy little baby. Sure she has a feeding tube, but she is so easy to take care of. She's just a happy girl...except for an hour or so before bed time during which she experiences the "unhappy hour" (thanks to the Hoenisch's for that term, I like it). Oh, and she's getting her first tooth! We can feel it when she bites our finger, and just this morning we could see where the skin is starting to break. I was beginning to worry she might be limited to jell-o forever!

We have an appointment with Radiology at CHW to have Charlotte's G tube converted to a GJ tube on July 29. At first we wanted to put it off until September and hope she would start keeping her food down, but it's just not likely and we hope getting this done sooner rather than later will make her life more pleasant and make her want to eat by mouth. In addition to concern about her weight gain, the GI doc's decision to move forward with the GJ tube was precipitated by the speech therapist putting a bit of applesauce on Charlotte's lip. Charlotte immediately threw up without even touching the applesauce with her tongue or the inside of her mouth. Who would want to eat when their gag reflex is that strong? Definitely not Charlotte.

July 6, 2010

2010-07-07T00:27:00.002-04:00

No new pictures, but I wanted to type up a blog about Charlotte's appointments in Milwaukee today. She saw Dr. Arvedson (speech therapy) and Dr. Stephens (GI).

Charlotte impressed Dr. Arvedson and took water from the spoon like a pro. She even took sips out of a plastic cup but threw up as soon as applesauce was introduced. Dr. Arvedson said we should try to stop feeding practice before it gets to that point but she'd wanted to push her a bit and see what she'd do. She also advised we give Charlotte flat suckers, pretzel rods, and whole pickles to put in her mouth. I'm looking forward to seeing what she does with them.

Dr. Stephens has joined Pat and I in the 'Concerned about Charlotte's Lack of Weight Gain Camp' and wants to take some steps to reduce the amount she throws up.

Her measurements today were:
Weight: 15 lbs 6 oz (6.985 grams)
Length: 25.2 inches (64.1 cm)

Dr. Stephens is recommending we replace Charlotte's Gastrostomy tube with a Gastrojejunal (GJ) Tube, and he placed the order for a GJ Tube so that we can come back as soon as we'd like to have radiology put it in. The GJ Tube will bypass the stomach and deposit feeds directly into the intestines, theoretically preventing Charlotte from throwing up. A picture of a GJ Tube can be seen here: http://www.mountnittany.org/assets/images/krames/115616.jpg

Once on the GJ Tube Charlotte will need to be on continuous feeds, meaning she'll be connected to her pump for most of the day. Currently she is connected 14 hours a day - 2 hours on, 1 hour off from 4 a.m. to midnight at a rate of 70 mls/hr. Now, we're going to reduce her rate to 60 mls/hour over 16 hrs/day starting at 5 a.m. and ending at midnight. We'll be playing with the timing and feed rate over the coming weeks and hopefully she'll keep more of her feeds down.

We're happy the medical part of our vacation is over and we can relax and enjoy the beautiful (and humid!) summer weather.

July 4, 2010

2010-07-04T23:02:00.005-04:00

Vacation time! We arrived in Eau Claire late Wednesday night to start our vacation. We enjoyed spending time with Pat's parents and Charlotte got to take her first sink bath. Judging by the smiles on her face, I don't think she missed her whale tub too much.

We had a very short visit with my cousin Heather's family in Cadott. For whatever reason Charlotte's pump didn't charge properly the night before and it wasn't until we arrived that the battery died, preventing us from starting her feed. So, we quickly returned to Eau Claire and plugged in her pump. Lesson learned: we will always bring the pump charger with us just in case.

Saturday morning came early and we left Eau Claire at 4:30 a.m. for Afton, MN for the Afton 50k Trail Run. Patrick made me proud and dropped out when he felt the heat getting to him; perhaps a decision made easier since he has his sights on future races and didn't want to delay his training. Charlotte enjoyed the race and even got in a nice nap!

That afternoon while Pat went to a Twins game my parents picked up Charlotte and me and brought us to Kasson for Charlotte's first trip to Southeastern Minnesota.

Happy 4th of July! Charlotte showed us a new first today, she smiled for the camera. Really hammed it up!

Immediately preceding this photo was a very serious face until she saw the camera pointed in her direction.

Say Cheese!
So tired. Goodnight.

June 20, 2010

2010-06-20T22:34:00.009-04:00

We're back in Houghton after a fun-filled Grandma's Marathon weekend in Duluth. The weather was beautiful (except for the headwind per Patrick) and we enjoyed spending the weekend with the Vendlinski's (a family from the UP who had preemie twins - I neglected to ask permission to post pictures of them but their blog is http://vendlinskilife.blogspot.com/). This is our first trip since Charlotte was born that did not involve a medical visit - woohoo!

Patrick ran the marathon and here's Charlotte waiting for him to come down Superior Street. Run Daddy Run!

This is Patrick coming up on the last turn to the finish line.

This year was a bit different than past years in that our night was not spent at the tents. We did, however, visit a park where Charlotte sat in a swing for the first time.

She thought it was pretty awesome.

Then we all went for a hike in Chester Bowl. Patrick had fun showing the Vendlinski's some of his favorite Duluth running trails and reminiscing. Patrick and Jim hiked these ski hills after running the marathon and half-marathon - very impressive.

On Sunday we visited the Great Lakes Aquarium in Duluth; Pat had fun feeding the fish - he tried to make it look like he was getting the food for the twins to feed the fish...but really, he probably enjoyed it even more than they did. :)

Charlotte was especially fascinated with the bubbles in the fish tanks, and it was fun watching her eyes follow the fish, turtles, snakes, and birds. Next year this time she'll probably be talking and running around, which I'm looking forward to, but today was sure easy with the Baby Bjorn.

Spending the weekend in Duluth reminded us of how much we love it! We enjoyed visiting friends and learning that many people still read this blog - we thank you for your support! Hopefully we'll be able to return to Duluth for a weekend this fall...and maybe be reminded of some of the not-so-nice weather we've experienced in Duluth. :)

Happy Father's Day to Patrick! He's been through some big changes this year and has handled them all in stride. I doubt many dad's are thrown up on as much as he is, but as long as he keeps running races he won't run out of clean t-shirts!

June 16, 2010

2010-06-16T16:57:00.005-04:00

10 Months (7 months corrected)
14lbs 10oz

June 10, 2010

2010-06-10T12:19:00.003-04:00

Much like eating by mouth and not spewing all over the place, sitting IN her chair is WAAAAY too conventional for Charlotte.

May 23, 2010

2010-05-23T15:36:00.003-04:00

Today we beat the heat in Houghton by driving down to White City Park on the southern shore of the Keweenaw. It was nice and quiet and even a bit chilly with the breeze off Lake Superior. For a short time a bald eagle perched on the breaker wall near the lighthouse. Charlotte's first taste of the big lake (from the beach anyway).

May 16, 2010

2010-05-16T11:43:00.002-04:00

Charlotte has her first report card and it's on our fridge! We are so proud of how she's doing.

She had 3 appointments which turned into 4 at Children's Hospital of Wisconsin on Friday, May 14. The first of which was her Neonatal Developmental Follow-up appointment where she was evaluated by occupational therapy, physical therapy, and speech. They gave us all sorts of information:

Age from birth date: 9 months 4 days
Age from due date: 5 months 21 days (this is the age used for all categories below)

Growth Progress:
Weight: 14 lbs 7 0z (25th percentile)
Length: 24.5" (10th percentile)
Head size: 16.5" (45th percentile)

She is growing! We learned that when a baby eats the nutrition is first distributed to the brain and head for cognitive development, then to length, and lastly to weight. It makes sense then that her head size is basically normal for other babies her age but she's still behind in length and weight.

Bayley Test Scores: Age Equivalent

Cognitive (Play skills): 7 months (AWESOME!)
Fine Motor: 6 months
Gross motor: 6 months
Receptive Language (Understanding): 4 months 10 days
Expressive Language (Talking): 6 months

She's meeting and exceeding expectations in all categories except receptive language. The therapists said, though, that at her age there are so few skills on which to judge this category it's easy to get a low evaluation. They really look for her to be responding to her name, which she doesn't. So, we're going to do our best to not call her sweetie, baby girl, etc. in an effort to teach her her name - Charlotte.

In order to make sure her receptive language deficit isn't a hearing issue, she was sent for a screening and passed with flying colors. It was very neat to see how they do the hearing screenings. Charlotte and I went into a sound booth while Patrick and the audiologist went into an attached room. She sat on my lap while sounds were played from speakers to our right and left. When she looked toward the sound a little cartoon character would light up and shake to reward her for responding to the sound.

Charlotte met with Dr. Arvedson again to evaluate her eating progress. She was impressed by how far she's come (these are tiny, tiny steps not noticeable to anyone but Dr. Arvedson we feel). We received the go ahead to introduce flavors and textures to Charlotte. While at the appointment Dr. Arvedson put some applesauce on Charlotte's lips and Charlotte wasn't too pleased. Charlotte won't be taking anything significant by mouth - if she takes a drop of water and swallows it we are delighted, but we hope she starts to enjoy different textures and tastes near her mouth. Dr. Arvedson told us about one baby who liked pickle juice of all things.

Finally, Charlotte visited the GI Clinic for a check-up on her G-tube. No big news here. They would like us to try increasing the rate at which she eats. Right now she receives 125 mls every 3 hours at a rate of 65 mls/hour. They would like to see her rate at 85 mls/hour with the goal of at some point administering her feed in under an hour. A faster rate allows us more freedom (and Charlotte as she becomes more mobile), but we need to make sure she can keep most of her feeds down.

We had some fun on this trip, too! On Thursday we traveled to Milwaukee, making 2 pit stops. We visited Mom and Pop Place in Neenah, WI. The store is owned by a high school friend of Pat's and although we missed seeing her, we had fun looking at all the baby toys and items. I was excited to find a car adapter for my breast pump - no more need for batteries while we travel! We also stopped to visit a mom and baby who were in the NICU with us. It was fun to visit and see how baby Alexya is doing.

My parents surprised us with a visit in Milwaukee! Here are some pictures of our visit with them.

All the fun wore Charlotte out! On our way back she slept solid from Milwaukee to Green Bay, the longest she's ever stayed asleep in the car!

May 10, 2010

2010-05-11T05:53:00.003-04:00

Charlotte turned 9 months old today (6 months corrected) and celebrated by showing off her rolling skills. She has been rolling over periodically over the last month, but today it seemed like every time I put her on her tummy she ended up on her back soon after. At first she seemed confused, but now she appears to like it.

We're on an every-other-day schedule around here with regard to keeping feeds down. One day Charlotte will do really well, hardly throwing up at all. The next day it seems like she doesn't keep anything down and I'm doing a load of burp clothes and scrubbing the carpet constantly. But she is gaining weight slowly but surely so some things have improved.

We all head back to Milwaukee on Thursday for another round of appointments on Friday.

May 5, 2010

2010-05-05T22:36:00.004-04:00

Charlotte's first non-medical trip was busy but fun. We spent 5 days in Eau Claire visiting Pat's parents as well as a few other friends. The photo above was taken on Sunday at the Eau Claire Marathon. Patrick was a spectator for Charlotte's first marathon experience, and while it was fun to watch with him, we hope he'll be back to running very soon.

FYI: There is no large outline of the state of Minnesota at the rest area on I94. Patrick found this sign that served to mark Charlotte's first day trip to Minnesota on Monday. Charlotte met Pat's past co-workers from the UofM, got to visit Kurt at TC Running Company, went for a walk with Aunt Kelly and Cousin Tank, and had dinner with some friends from UMD. All in all, a busy day.

Walking around Lake Nokomis with Kelly and Tank.

Tim and Kelly became homeowners this year and we were excited to finally see their house!

It was fun to see friends, and hope it won't be as long this time before we're able to visit again!

Our little vacation was fun, but I think we learned about Charlotte's limits. We pushed her pretty hard and traveled like we used to before we had a baby. We'll probably take things a bit slower in the future because even Pat and I were relieved to arrive home tonight.

This trip did include a quick medical detour. On our way home we stopped by Marquette for Charlotte's eye appointment. She is near sighted and will require glasses, but not until she starts moving independently. Maybe in 6 months, we'll see! As the doctor said, all the things that "matter" (retina, etc.) look good, so that's a relief.

April 24, 2010

2010-04-25T00:42:00.002-04:00

When Charlotte smiles nothing else matters.

April 18, 2010

2010-04-18T13:50:00.003-04:00

Charlotte has started gaining weight again! She's up to 13 lbs 14 oz as of today. We believe the improvement to be a combination of her new G-tube and her new feeding schedule. We're now feeding her at a rate of 60 mls/hr every 3 hours. Meaning, she's being fed for 2 hours at a time with an hour break. At night she gets a 4 hour break. She still throws up, but not as frequently and rarely to the point of dry heaving.

She recently started pushing herself up during tummy time and before I knew it I'd taken 40 pictures of her this morning. Here are a few.

April 13, 2010

2010-04-13T23:19:00.003-04:00

What a week of travel! Last Wednesday we departed Houghton for La Crosse, WI. On the way stopped by Pat's parents' home in Eau Claire to pick-up Charlotte's baby jogger. We'd been waiting until spring and for Charlotte's neck strength to develop before purchasing any type of stroller, and the time has come. Pat's sister was kind enough to pick it up from the REI store in Bloomington and give it to their parents for storage until last Wednesday. Charlotte likes it as long as she's moving and tends to fall asleep for most of her time in it.

We were in La Crosse Wednesday - Saturday. Charlotte doesn't mind hotel stays, especially when we bring her favorite items from home: her musical, light-up ring stacker and the boppy. I attended a conference while my parents visited and spent time with Pat and Charlotte. On Saturday Pat's sister drove down from the Twin Cities for the afternoon and that evening Charlotte met our friend Cara. Charlotte just loved all the visitors!

Before leaving La Crosse on Sunday we decided to take a tourist's detour up Granddad's Bluff. Quite the view and a nice opportunity for a family photo (with us facing into the sun, hence all the squinty eyes). We headed to Milwaukee on Sunday and enjoyed dinner with the Mehls. Now that its April we're loving taking Charlotte out and being less germaphobic.

Monday we returned to Children's Hospital of Wisconsin to see the GI Specialist. Our scheduled visit wasn't until mid-May, but Charlotte has been vomiting large, concerning amounts. She stopped gaining weight about 2 weeks ago, leveling off at 13 lbs 9 oz, so the doctor and nurses thought we might try a new button.

The Mic-Key button, which she had before, has a balloon which is inflated inside the stomach to hold it in place. Her new button, the AMT button, has a smaller "mushroom" which holds it in place. The Mic-Key button was nice because in March they gave us extra buttons and supplies in case it should come out, we could replace it ourselves at home. The AMT button can only be removed and replaced by a doctor and its more painful for Charlotte. Case in point, prior to the tube insertion Charlotte was smiling and talking to the nurse, which she continued even as the Mic-Key button was removed. As soon as the nurse began pushing the AMT button in Charlotte's face showed feelings of betrayal and she just screamed. Her little tears are just heartbreaking! We hope the smaller mushroom will take up less space in the stomach, resulting in fewer episodes.

Because we live pretty far from CHW and we can't just go back in a couple days if things don't work out we asked lots of questions about what else could be the problem. Other options included a GJ Tube which would bypass the stomach and empty directly into her lower intestines. This is not ideal because we want her digestive system to continue working as normally as possible and because this tube would require a very slow feed rate, meaning Charlotte would be attached to her pump 14 hours a day. Other approaches would be more invasive with pretty serious complications.

It has only been a couple days but we haven't seen much (if any) improvement with the AMT button, but are hoping things improve as she gets older. We'll continue to watch her weight very closely to avoid serious nutritional deficits.

The best part of our trip to CHW was running into a friend from the NICU. It was also nice to see other parents with kids of all ages feeding them through tubes in the waiting room. After this trip we've decided we need to get Charlotte outside and are going to try to be comfortable with stares and questions as we feed her in public places. We apologize now for any floors or furniture she throws up on. We'll clean it up to the best of our ability. :)

While there the speech therapist made time in her schedule to see Charlotte. We are to continue introducing positive experiences with a the spoon (dry, then with a drop of water, then with a drop of milk) for about 5 minutes, 3 times/day. The therapist was confident Charlotte would not be throwing up like this when she goes to school, so that was good news. We hope she'll be eating normally by then too, but slow and steady wins the race (as per the speech therapist who reminded us of the tortoise and the hare).

After riding in the car from Milwaukee to the UP Charlotte wanted to drive the last leg of our trip. We strapped her in to the driver's seat but she was much more interested in the seat belt than the road, so we had to put her back in her car seat. We'll try again in about 16 years.

Note: No children were harmed nor cars turned on in the taking of this photograph.

Here is Charlotte's traditional monthly photo. This one is for 8 months, even though it was taken 3 days after the 10th. We were on the road for the 10th and forgot the beanie baby at home. However, we know her weight hasn't changed so its pretty accurate. Her 8 month weight: 13 lbs 9 oz and length: 22.75 inches.

April 4, 2010

2010-04-04T19:46:00.004-04:00

Happy Easter! Charlotte's first Easter was lots of fun. We took her to church this morning and she was wonderful. She fell asleep during the first hymn and didn't wake up again until after the sermon. Even then she sat quietly and chewed on her toy.

This afternoon a few people from work came over for Easter Dinner. It was fun to have visitors and Charlotte got to meet baby Maddy (the baby who was born on Thanksgiving day). She's not overly interested in other babies yet, but she stared a bit.

March 30, 2010

2010-03-30T20:39:00.006-04:00

The weather is turning towards spring in the Keweenaw and hopefully that means we'll be able to get out with Charlotte more frequently. We should be in possession of our new baby jogger in a week.

Of course, we have to play "Beat the Clock" with any adventures since we are still held hostage by Charlotte's feed schedule and propensity for large emesis (sounds so much better than vomit or puke). Whoops, there comes some more now...

She has had more bad days than good in recent weeks. She frequently throws up full feeds as she is being fed or when we're holding her afterward or when we put her down in her crib or if we put her in her swing or if we lay her on a blanket or if we open a can of pop or if...

But if you disregard the eight hours a day we're feeding her, she is the happiest baby in the world. In fact frequently she will look up from her puddles of emesis, smile and immediately start babbling. In the last few days she has really mastered sitting up and continues to get better at manipulating her toys. She has the most fascinating conversations with them.

Yesterday was my birthday and we took Charlotte to the Library restaurant. She's now been out to eat 3 times and has been quiet and happy each time. Let's hope this streak continues through this weekend when we plan to take her to church for the first time.

March 13, 2010

2010-03-13T17:02:00.006-05:00

Last Saturday Charlotte watched her first race! Patrick ran in Stevens Point's Bock Run, his first race of the year. Shortly following the race Charlotte's G-tube came out again. It had been loose since her trip to the Houghton ER, but we were hoping it would last until her Tuesday appointment. No such luck. We went to the Steven's Point ER and they were able to put in a Foley tube but directed us to the CHW ER. CHW did not disappoint, the G-tube was reinserted within 2 hours of our arrival.

We'd planned to spend Saturday night in Madison visiting the Hoenisch's but since we were at the CHW ER, we spent the night in Milwaukee (we recommend hotels.com as they were very accomodating, allowing us to cancel our Madison hotel reservation at the last minute without a fee). We did make it to Madison on Sunday and met baby Calvin for the first time. He was born on Charlotte's due date, 11/9/09, so it was fun to see them side by side. He is a cutie!

Sunday afternoon we arrived in Chicago so Katie could attend the NASPA conference. Everything went pretty smoothly, although a baby definitely makes traveling a bit more complicated. While Katie was at the conference Patrick took Charlotte to 3 appointments in Milwaukee on Tuesday:

Speech Therapy: We are going to start introducing pleasant experiences with the spoon. This means rubbing her cheek with the spoon and allowing her to lick it. We give her a drop or two of water and of milk, but no food yet. No sense rushing things!

Surgical F/U: Everything looks good with the G-tube! We're going to get a couple of extra Mic-Key buttons to have on hand should we have any issues in the future.

GI: Charlotte did her thing and threw up during her GI appointment. We're glad they were able to see how much she really throws up because they agreed this is an issue but they weren't sure what the cause is. They recommended trying to give most of her feeds overnight while she slept at 47 mls/hr from 9 p.m. - 7 a.m. and then feeding her 3 times/day at 90 mls/feed. We tried this a couple of nights but her sleep is restless with the pump. She rolls back and forth all night, throwing up periodically. This restless sleep resulted in a very crabby, sleepy baby during the day. SO, we've given this up for now and are returning to our every 3-hour feeding schedule 5 a.m. - 11 p.m.

On Wednesday we stopped off at CHW for Charlotte's final appointment with the developmental specialist. She's right on track for a 4 month old. Photo above taken 3/10, Actual age 7 months; 12 lbs 15 oz; 22 3/8 inches. While there we swung by the NICU to visit the March of Dimes Family Life Specialist, Melissa. It was good to see her and we were lucky enough to see one of Charlotte's favorite nurses, Michelle, too.

From Milwaukee to the UP we drove through dense fog and were relieved when we arrived safely in Houghton.

So far this weekend has been pretty low key, which is exactly what we needed!

March 5, 2010

2010-03-05T14:22:00.002-05:00

As of her appointment yesterday, Charlotte's vital measurements (weight and head circumference) are officially "on the curve" for her actual age of 7 months. She is at the very bottom of the ranges, but she has made a lot of progress.

March 1, 2010

2010-03-01T18:41:00.003-05:00

Yeah I'm sittin' up. Big whoop. Wanna fight about it?

I'm totally gonna puke on this guy.

Does this scale make me look fat?

Is it over yet?

We're holding out hope that our trip to Milwaukee next week will lead to some answers/solutions to the volumes of vomit we've grown accustomed too recently. Dr. Colleen recommended we ask about "nissen fundoplication", a procedure to curb reflux (GERD).

We need to start making a list of questions to ask when we go back. Right now we have four different appointments scheduled for our trip: surgery follow-up, gastroenterology, speech therapy, and six-month developmental. It should be a full day. And since Katie will be at her conference in Chicago all-day, it will be just me and Charlotte driving to Milwaukee, hanging out at the clinic, trying to get feeds in and driving back through Chicago rush hour. Good thing there is a whirlpool at the Sheraton.

But somehow, in spite of the incessant throw-up, Charlotte continues to gain weight and remain playful. She is working on consciously forming sounds and has really gotten adept at lifting her head while on her stomach. She also gets pretty ornery if we aren't allowing her to sit upright. So much to see there is. Can't waste time cradling.

February 23, 2010

2010-02-23T22:58:00.003-05:00

Getting ready for a walk on Saturday. This past weekend was pretty low key and the weather was great - 34 degrees. So nice to get outside with her.

She's such a great baby. This is how I found her after she'd been napping for a couple hours. Just waiting patiently for us to come get her...perhaps she thought if she cried we might try to start her feed early. :)

February 15, 2010

2010-02-15T20:27:00.000-05:00

TGIM! Not as catchy as TGIF, but thank God this weekend is over.

At 3:20 p.m. on Saturday Patrick went to lay Charlotte in her crib and in the process got the G-tube extension set caught between his body and her crib, pulling the Mic-Key button out of her. As he tried in vain to stop her stomach contents from gushing out I started making phone calls. We had been warned that should the tube come out we would have 2 hours to get her help or the hole would close.

The on-call pediatrician happened to be Dr. Colleen and she thought the surgeon in Hancock wouldn't want to touch it, so we hopped in the car for Marquette. About 5 minutes into our trip while I was on hold with the Marquette NICU Dr. Colleen called back and let us know they could insert a holder in Hancock so that we would not be as pressed for time.

Once we arrived in Hancock we learned that they were going to put in a Foley Tube, which was supposed to be good for at least 2-3 weeks. They said Marquette didn't have anything but the Foley Tube either, so it saved us a trip. Before we left our pediatrician let us know that the x-ray showed the doctor had placed the tube so deeply that it emptied into her intestines, bypassing her stomach. However, she didn't think it would be a problem. It was.

That night Charlotte started throwing up vibrant, green bile. I called the on-call pediatrician at 1 a.m. and she said to pull the tube back 1 inch. Then she called back in the morning and said to pull it back even more because she was concerned the balloon on the end of the tube might be causing a bowel obstruction. We did all of this but then realized before her noon feed that the tube had gone back into her stomach. Rather than guess at how far we should pull it out, we decided to take her back to the ER.

First, I called the on-call general surgical resident at Children's Hospital of Wisconsin and they asked why they hadn't put the Mic-Key button back in. I wasn't sure so they called the ER in Hancock and talked to the doctor about how to put it back in. When I got to the ER the doctor took another x-ray and told me the Foley Tube was in the right place and we didn't need to take it out unless I wanted them to (apparently green bile and diarrhea were of little concern). I wanted them to. Charlotte got her Mic-Key button back and we are all much happier!

In between our trips to the ER Charlotte got to hangout with Pat's parents. It was nice to see them, but too bad their weekend here turned out to be so stressful. We left Charlotte with them for about 2 hours on Saturday night and went out for dinner and bowling. This was our first time leaving Charlotte with anyone besides a nurse. I think we were both in a bit of shock from the afternoon's events but it was nice to get out for a while.

While all of this was pretty terrible, it's nothing compared to what others are going through. Our thoughts and prayers are with the Hoenisch's as Calvin was admitted to the hospital last week with a lung infection. We wish him a speedy recovery and look forward to meeting him this spring.

We are very grateful for Charlotte's respiratory health and hope the end of cold/flu season comes quickly.

February 11, 2010

2010-02-11T22:13:00.002-05:00

Today's 6 month well baby visit was a pretty big event! The pediatrician Charlotte has been seeing was out of town so we saw Dr. Colleen. She was great, actually sitting down and talking with us over growth charts and feeding information (as opposed to rushing through the visit and being vague in response to our questions). This doctor does not accept the wait-and-see approach with her feeds, emphasizing that things will get easier and that this is not permanent.

Colleen is a D.O. and specializes in Cranial Manipulation. Her own children were 27 week twins and her daughter's feeding issues were corrected by this practice and she was then inspired to become an expert in this area herself. I've been Googling Cranial Manipulation and its validity is questioned for use in adults because the skull is no longer very malleable, but hopefully it works for Charlotte. It's very low risk - she'll basically be receiving weekly skull massages.

She also clipped the skin under Charlotte's tongue. Charlotte was tongue tied (the skin under her tongue was attached to the tip of her tongue), preventing her from having full mobility with her tongue. This should not have prevented her from eating out of the bottle, but did prevent her from nursing. We still won't push nursing unless she shows interest. It's not something Patrick or I have been devastated I can't do, so we'll just follow Charlotte's lead. The tongue-tied issue is something doctors have noticed and thought wasn't an immediate concern. We'd been told she may need to have it clipped if she were to have speech difficulties later on, and we're just glad she had it clipped now so she won't remember the procedure.

Charlotte screamed for most of this appointment with the cranial manipulation (not painful, she's just very sensitive), the tongue clipping, and then 4 shots. Poor baby! It was a tough way for her to start the day.

February 10, 2010

2010-02-10T11:40:00.002-05:00

August 10, 2009

45 minutes old
1lb 7oz

February 10, 2010
6 months actual/3 months corrected
12lbs 0oz

February 6, 2010

2010-02-06T22:41:00.003-05:00

Charlotte got to experience fireworks for the first time tonight. We got all packed up and headed down to the library for a great view (and a warm one too!) Bright lights are definitely high up on Charlotte's list of likes. And only one fountainous vomit episode and it all ended up on mom! A good time was had by all.

February 4, 2010

2010-02-04T20:56:00.003-05:00

It's Winter Carnival time at Michigan Tech and we've had lots of fun sharing the festivities with Charlotte. Last night was the all-nighter and Charlotte took part in the fun until nearly 10 p.m. - what a night owl! She was wide awake when she got home, as you can see from the video Patrick posted yesterday.

Today we went back out as a family to see the finished snow statues and they were quite impressive. Charlotte slept through most of our walk, but it felt good for us all to get outside for a bit.

Last weekend we had brunch with the Vendlinski's, a family from the area who had preemie twins, and it was fun to see them. Their kids are standing and walking and starting to talk - wow. This was Charlotte's first opportunity to see other kids and hopefully she'll pick up their eating habits.