December 31, 2010

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

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

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

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

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

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!

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

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

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

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

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

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

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

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

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.