Monday, April 25, 2011

April 25, 2011

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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.

Sunday, April 10, 2011

April 10, 2011

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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?

Saturday, April 2, 2011

April 2, 2011

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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.

Tuesday, March 29, 2011

March 29, 2011

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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.

Sunday, March 27, 2011

March 27, 2011

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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.


Wednesday, March 16, 2011

March 16, 2011

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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.

Sunday, March 6, 2011

March 6, 2011

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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

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