Another Visit from Grandma & Grandpa Liedl

Lucy's grandparents came to visit again last week. With my part-time work schedule, I had a long weekend, and it's likely the last long weekend in a while. So last Thursday, my parents drove through northern Minnesota, across the Michigan Upper Peninsula, and down to Ann Arbor. They said the leaves were just starting to change.

My parents spent the next three days loving on Lucy. She showed them smiles, giggles, coos, and some cries.

Lucy rolled over for the first time. She went from belly to back, turning to her left.This is Lucy, tired after rolling over.

Lucy's daycare had a pancake breakfast to raise money for the Big Heart, Big House run this weekend. We were able to show my parents where Lucy spends her days.

We also went to watch the University of Michigan Marching Band rehearse. The MMB rehearsals are open to the public every afternoon, and it was a treat to watch. They were preparing for the Michigan v. Indiana game the following day. (Michigan won that game. Go Blue!)

Of the last 3 days at daycare, Lucy has gotten her NG tube out on all 3. Twice she pulled it out by herself, and yesterday, it came out when she vomited. Poor thing - we keep putting it back down when she gets home.

The JDRF walk to raise money for diabetes research is this weekend. Lucy, Kris, and I will all be walking. If you want to donate a couple dollars, you can visit http://walk.jdrf.org/walker.cfm?id=87389592.

Place Your Bets

Lucy has discovered that she has fingers. Unfortunately, her cute little fingers are just the right size to get under her NG tube by her nose. She pulled the tube out once last week at daycare and she got it halfway out last night. So, how often to you think Lucy will pull out her tube? Daily? Weekly?

Things That Start With "S"

While I haven't been posting, I have been making notes about things to post. Turns out most of those things start with "S".

The first one: smiles. Lucy has started giving us lots of smiles and happy sounds in the last couple weeks. The smile starts out small and grows into a big one, and if you are lucky, a happy shriek or coo accompanies it. I am trying to capture the smiles on video. They will be on Facebook.

The second S: sweat test. Lucy had a sweat test to determine if her PHA (pseduohypoaldosteronism) affects just her kidneys or if it involves multi-organs. This test is the same thing that they do to determine if someone has cystic fibrosis, but that is not what we used it for with Lucy. The first part of the test involved apply two electrodes to each of Lucy's thighs. One of the electrodes had a chemical that causes the skin to sweat, and when the current is applied, this chemical is pulled into the skin. Then very thin filter paper is placed on the skin to absorb the sweat. When enough sweat is collected, the lab analyzes the salt content in the sweat. Lucy's sweat test showed that she does not have the multi-organ variation of this disease. This means that she will most likely outgrow the PHA and her sodium supplements in the next couple years. :)



We had blood drawn this week for another potassium level. To weeks ago, her potassium level was 4.9. Then on Thursday, it was 6.2, a lot higher than it should be. Since there is no reason her potassium level should be going back up, we went to have it redrawn today. 5.3! Yeah!
Lucy is doing very well with her neck strength and holding up her own head.

I got crafty and decided to further decorate the nursery. I bought the letters of Lucy's name and I bought scrapbook paper. After tracing the letters onto the scrapbook paper and cutting them out, I decoupaged the letters using Mod Podge. I am very happy with how it turned out.

Lucy has been growing out of a lot of her clothes. So this leads us to the next S: shopping (kind of). We received a lot of clothing at my baby showers, and we packed up the items that were too big. I went through the drawer of the 3-6 month old clothes and picked out the ones that I think will fit her now. She is getting a whole new wardrobe without even entering a store!

Kris and I took Lucy to the Dexter Cider Mill today, and while we were out, I commented on how I was in a good mood today. Kris reminded me that it is probably because I got a good amount of sleep last night. And that is my favorite S: sleep. Lucy slept from 11PM to 4AM and for those 5 hours, I was in dreamland.

Lucy's least favorite S is the next thing: shots. She had her well child exam last week and had to get three immunization shots. Lucy actually slept really well for a couple hours after the shots, but then she cried/screamed for 1.5 hours. She spiked a little fever and finally fell asleep. We're all glad that she doesn't have any more shots for another 2 months.


Our final S is: stain removal with the sun. I've read that putting baby clothes in the sun helps to remove baby poop stains. I was doubtful and figured it was just working by fading the clothes. However, I gave it a try, and it works!!! One of Lucy's diapers leaked onto a cute footie pajama outfit. The poop stain did not come out in the laundry, and I didn't realize it until after I had dried the outfit. I put it out on our patio to get a little bit of sun, and the stain disappeared from the side that was exposed to the sun. I turned it inside out, and the stain disappeared completely. After I did some more reading, I read that the reason this works has something to do with bilirubin. Great trick!

I started back to work part-time this week. I am working 3 days a week for 3 weeks and then I'll be back to full-time. While Kris and I are at work, Lucy goes to daycare at Gretchen's House. We've heard many good things and so far we have been impressed. They are more than willing to work with Lucy's NG tube.

As a reminder, I put more pictures on Facebook because they are easier to upload there. We hope that everyone is doing well. Take care, enjoy the fall weather, and check back for more updates.

A weekend outdoors

We went to my department's picnic this weekend. The picnic was at Independence Lake County Park. There was a lot of kids and everyone had a good time. It was a bit windy and it was too cool to swim or play in the splash play area, but at least the rain went away. Lucy threw up on one of my coworkers. (Sorry Christine!)

We also walked to the library today. Lucy has been to the library before, but it was our first time walking there.

Lucy is still working on holding up her head and remains a bit of a bobble head. She has smiled and is definitely more interactive with us. We have an appointment with Peds Endocrinology tomorrow and we will see what they have to say about her renin and aldosterone levels being normal now.

I will be heading back to work in September. Lucy will be attending daycare at the University of Michigan Health System Child Care Center. I will start by working 3 days a week for a few weeks, and then I will have to go back to my 40 hour schedule.

Starting the Week with a Bang

Lucy had a very full Monday. We started out getting her blood drawn for labs. It only took one poke!!

Next Lucy had a VCUG (voiding cystourethrogram). This procedure is used to see if a patient has urinary reflux. Turns out that Lucy does have urinary reflux bilaterally. When the kidneys make urine, it is supposed to flow into the bladder and stay there until urination. However, with urinary reflux, the urine goes back up the ureters from the bladder into the kidneys. This can cause urinary tract infections and other problems. Fortunately, most infants grow out of this problem, but until then, Lucy will have to take antibiotics daily. We will have a kidney ultrasound every 6 months, and we will repeat the VCUG in 1.5 years. As it seems with all of Lucy's medical problems, not the worst thing ever, but still another thing to add to her list.

Our nephrology appointment went well. The lab results showed that Lucy's potassium remains at a good level (5.3mmol/L). This means that we will just continue on with her sodium supplements and kayexalate milk and high fluid requirement. We will have more blood work done in 2 weeks and another nephrology appointment in 2 months.

Lucy continues to do slightly better with breastfeeding. We are going to keep plugging away. She is growing very well. Her weight is 10lb 2oz and she is just shy of 21 inches long. She's actually starting to grow out of some clothes!

Meeting More Family

Lucy met her Aunt Molly and soon to be Uncle Kelly this weekend. Molly is Kris's sister, and she and her fiance drove up from Illinois to meet Lucy. It was a quick visit - They were only here for a couple hours on Saturday afternoon, but Molly just graduated with her bachelor's degree and starts a new job on Monday. (Good luck Molly!) They are also in the middle of planning their October wedding and moving into a new apartment.

Aunt Molly and Uncle Kelly came at a good time. Lucy was awake and very interested in meeting new family members. She also enjoyed hearing Kelly say that the pictures did not do her cuteness justice. We all went to Joe's Crab Shack for dinner, and Lucy slept through the entire meal.

Today Kris, Lucy, and I went to The Little Seedling. This is the store where I bought my Moby wrap for carrying Lucy. The store had a "Baby Wear" class where we learned other ways to use the Moby wrap. It was a good class but Lucy didn't last the entire time. I think she was tired, hungry, and overwhelmed by all the people.

Lucy has also become a night owl. She sleeps from 11PM or Midnight until 2-4AM. From then on she thinks it is party time. It has taken over three hours to get her back to sleep the last couple nights. Hopefully this is a short-lived routine.

More daycares to visit this week and more mommy groups to hang out with. Hope everyone has a good week.

Sleep Deprived = Easily Amused

We bought Lucy one of those aquariums for her crib. It has 4 different songs, 3 different nature sounds, and has lights and bubbles and fish that move around. However, as Lucy is just now starting to look at things and watch them, Kris and I are getting more entertainment out of the aquarium than she is. Late at night, as I am feeding her, I find the soothing sounds putting me to sleep while she remains wide wake. This version also came with a remote so that you can turn it on from across the room and not have to go over to the crib where the baby may see you. Turns out that the VCR remote also can turn the aquarium off and on - the aquarium is not haunted, broken, and I'm not crazy (all initial thoughts when it was mysteriously turning off and on). Finally, the soothing sounds can be relaxing when I need to take a break. I really, really needed a nap yesterday, but Lucy was not cooperating. I finally got her to sleep but she was laying in the pack 'n play in the living room with the aquarium and I didn't want to move her to the bassinet in the bedroom where I wanted to lay down. So I set up our new baby monitor next to her, and as I fell asleep I listened to the aquarium through the monitor. Overall, a great purchase.

Lucy's potassium level on Wednesday was 5.4. We are very pleased and will not have to do blood work again until Aug 24 when she sees the doctors again. We continue to give her the sodium supplements and remove the potassium from the breast milk with the kayexalate.

I have to give a big thank you to the librarian at the Traverwood branch of the Ann Arbor library. I had accrued some late fees from books that didn't get returned on time when Lucy was born. I went to the library yesterday to pay my fees, and because I didn't want to be judged as a bad library patron, I casually explained why the books didn't get returned in time. The kind librarian waived the fees for me. Unexpected but greatly appreciated. Another reason why libraries are my favorite places in the world.

I've started to look at day cares for Lucy. I know that eventually I will need to go back to work, and someone will need to watch Lucy. I went to see one (Child Time) this week and I have appointments at the University of Michigan's day care and Gretchen's House next Monday. I wasn't sure if they would willing to give Lucy her feeds through the NG tube, but it doesn't seem to be an issue. They all say I just need to teach the day care teacher how to use the NG tube.

Lucy and I took my car in to be be looked at earlier this week. (It was making a noise when I turned left.) Because it was so warm outside, I knew both Lucy and I would be uncomfortable with her in the Moby wrap, so I decided to put her in the stroller. We walked around Arborland shopping center to purchase a couple things. Lucy didn't do so well in the stroller (or maybe it was the heat). She was fuzzy a good portion of the time and while I know that other people know that babies cry, I still feel bad when in a public place with a crying Lucy.