Monday, April 25, 2011

April 25, 2011

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

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

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.



Charlotte's Page Copyright 2009 All Rights Reserved Baby Blog Designed by Ipietoon | All Image Presented by Online Journal