Lucy's First Halloween

Lucy had a great first Halloween. But before I tell you about it, I want to share that her potassium level this past week was 4.2!!! That is a fantastic number, and we are thrilled.

The Halloween festivities began last Friday when we went to a surprise birthday party for Kris's boss. Everyone was dressed up, and Lucy wore her pea pod costume. Unfortunately, the costume was very warm and she didn't stay in it for very long. Happy Birthday Greg!

Lucy helped me carve a pumpkin on Sunday. Actually she just tolerated me putting pumpkin goo on her. I think she enjoyed the plastic bag that she was lying on more.

Kris went to San Diego for a conference this week, so Lucy and I were on our own. Once we got into a routine, we did fine. Lucy also had appointments with Nephrology and the Pediatrician this week. She got 4 shots and wasn't happy.

Our apartment had a Halloween party on Thursday night. Lucy didn't wear her costume, but she did wear her Baby's First Halloween footie-pajamas. It was fun to see all the kids dressed up, and our apartment knows how to throw a good party. On Saturday (Halloween day) we went to a party hosted by a family Lucy and I met at the New Mommies Club. We got to see all of Lucy's friends. It's amazing to see them all getting bigger and the costumes were adorable. Lucy and I dressed up as Thing 1 and Thing 2 from Dr. Seuss's Cat in the Hat. We then went to our friends', the Zwengs, house. Jeanette had a great taco/nacho dinner, and then we took the kids trick or treating. I carried Lucy in her pea pod costume, and I wasn't expecting to get candy, but one house gave Kris and I candy just because Lucy was so cute.

Boyne Adventures

The Schwab Family had a mini-vacation to Boyne Mountain, thanks to MODE (Michigan Organization of Diabetes Educators). I am on the board of MODE and had to be at a meeting on Thursday evening and then the conference on Friday. I didn't want to be away from Lucy (and Kris) that long, so they came with me.

Lucy and Kris spent the day together on Friday. They drove to Petosky and hiked up the ski hill. That evening we went to the Red Mesa Grill in Boyne City. It was recommended to us for its good Mexican/Latin food, and I would pass on that recommendation to any one in the area.

On Saturday morning, we drove to Bay Harbor and ate at the Original Pancake House. They had their Harvest Festival so we walked around that for a while.

Then we drove towards Charlevoix. We found the Bullfrog candle outlet. When we decided it was time to head back to Boyne Mountain, the GPS led us to the shortest ferry I've ever seen. The Ironton ferry only holds 4 cars and the ride took about 3 minutes.

When we got back to Boyne Mountain, we took Lucy to Avalanche Bay. This was Lucy's first time swimming, and I was very excited. Lucy didn't know what to think, but she lasted 30 minutes before she got tired. After dinner, we rode the ski lift to the top of the ski hill. We saw a deer and a skunk, and it was cold.

Our night still wasn't finished. Our next stop was at the arcade for a little skee-ball and Dance Dance Revolution.

On the way home the next day, we enjoyed the Fall colors and sunny skies. It was a great weekend, and Lucy did great the entire time.

And the potassium level is . . .

4.9!

Lucy has had her NG tube out for a week now. She kept pulling it out while at daycare, so we decided to trial her without it. The daycare has been great about encouraging Lucy to drink her bottles, and she is really starting to breastfeed well.

The nephrology team doesn't want to try weaning Lucy's sodium supplements for a couple months minimum, but at least it looks like we are okay without the feeding tube.

We will continue to have blood drawn every other week, and we follow up with nephrology and her pediatrician later this month. We are anxious to see how much weight she has gained. We know she is getting bigger, but we haven't had the opportunity to weigh her recently.

Aunt Molly's Wedding

(This is the new Uncle Kelly.)

Lucy had her first out of state trip. Last weekend, we drove to Carlinville, Illinois, Kris's hometown for his sister's wedding. We were worried about taking Lucy on an 8 hour car trip, but she did fantastic. Lucky for us, Lucy enjoys car rides. (Although she still hasn't grasped the idea of stop signs and stoplights. She gets mad when the car is stopped for two long.)

Uncle Kelsey and Great-Grandma were able to meet Lucy for the first time, and I think it was love at first sight. Everyone at the wedding wanted to see Lucy, and she did very well being passed around to family and friends. It was also nice to hear that so many of you are following this blog - it is motivation to try to post more regularly.

We are thrilled for Molly and Kelly as they start married life together, and hope that their honeymoon in Aruba is enjoyable and relaxing. The wedding and reception were lovely, and Molly looked beautiful in her dress. Thanks for making Lucy the honorary flower girl.

Lucy also had her first fundraising walk the weekend before. The three of us joined my colleagues, patients, and others passionate about finding a cure for diabetes and walked in the JDRF Walk for a Cure. It was a little bit chilly, but Lucy didn't seem to mind.

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.

Good Day (It's Amazing What Sleep Can Do)

You know the sleep that is so deep that when you wake up you don't know where you are, what time it is, or even what day it is? That is the kind of nap I got yesterday. Lucy cooperated and we both took a 2 hour nap. I slept through phone calls, my alarm clock, and when I woke up at 2PM, it felt like it was 8AM after a full night's sleep. Lucy also took her feeds smoothly overnight, so I got >1 hour of sleep between each feed. While I am still tired, I didn't feel like I was going to fall asleep in the shower today. (That almost happened yesterday!)

Main Dish Kitchen is one of those places that you can make your meals ahead of time, freeze them, and then thaw and cook them as you need. I also like Dream Dinners, but Main Dish will prepare the meals for you which is what I wanted. I went over yesterday and picked up 10 different meals. The first one that we ate last night was good, and it was a nice change from the frozen chicken nuggets and tater tots.

Early On is a program that "assists families with infants and toddlers, from birth until they turn 36 months or 3 years of age, who may be experiencing delays in their development or if they have a diagnosed disability". Because Lucy was premature, she would qualify for any services she may need that they can offer. With Lucy still struggling to eat (especially breastfeed), I submitted a request for an evaluation. The intake coordinator and a physical therapist came by to evaluate Lucy today. She was wide awake and did really well. They were impressed with what she can do and said her feeding issues will probably just resolve with more time and practice.

Lucy went to the ENT doctor today and had her frenulum snipped. It was a very, very quick procedure. The doctor took two cotton swabs with lidocaine and put them on either side of the frenulum to numb it. We then gave her some sucrose. The doctor used a metal piece (kind of the opposite of a tongue depressor) to hold the tongue up and then he simply used a small scissor to snip the tissue. It bled a little and we gave Lucy some more sucrose, but she quickly recovered. We've only had a couple feedings since then, so it's too soon to notice a difference, but I do see that her tongue can come further out of her mouth.

She and I then went by my work to see my coworkers and then to our New Mom's Club. I enjoy going to the different community groups. I learn so much and it's nice to see other moms going through the same thing as Lucy and I. Tomorrow is a La Leche meeting and on Friday I plan to go to the Breastfeeding Cafe again.

Because Lucy's potassium was 5.6 on Monday, we increased the amount of potassium-removed (via Kayexalate) milk. We will wait until next Wednesday to get more blood drawn. If her potassium is still 5.6 or lower, we will then wait until her next clinic visit (August 24) for more labs.

Lots Going On

So motherhood has been keeping me busy and tired which is why posting has become a sporadic thing. I will try to recap the events of the last couple weeks.

I found a New Mom's Club through the Lamaze Family Center. It meets on Wednesday afternoons and there are other new moms and babies that are Lucy's age.

Lucy accompanied me to a post-Camp Midicha meeting. Camp Midicha is the Michigan diabetes camp sponsored by the American Diabetes Association. I have gone the last two years to volunteer as medical staff, and I was planning on going both weeks this year. The camp director knew I was pregnant and was going to make accommodations to make it easier on me. Evidently, Lucy didn't want to go to camp because she was born the Friday that I was planning on going up to camp. It might have worked out for the best though because camp had a flu outbreak!

Lucy started kayexalate. Kayexalate (Kionex) is very hard on baby's stomach so we don't actually give it to her. We take 300ml of breast milk and add 1 tsp. of the Kionex. After one hour, we decant off the milk and throw out the potassium sludge. We then give that low-potassium milk to Lucy throughout the day. We are continuing her sodium supplements.

Someone gave Kris the great idea of taking Lucy's picture each week during the first year. Then at the end of the year, we will have 52 pictures to document her growth and development. I loved the idea and have been doing it so far. On the Babies 'R Us website I found a measurement blanket. I tried finding the blanket at a local store, but I couldn't, and I finally ordered it from the internet. Lucy doesn't enjoy being left on the floor for a picture, but it works out because she kicks her legs out and we can see how long she is.

Grandma (GM) and Grandpa (GP) Liedl came to visit again. They drove out from Minnesota on Monday, June 26 and stayed until Thursday, June 30. It was mutually beneficial. I got to sleep more and they got to spend time with their first grandchild. They helped by feeding her and cuddling her and cooking. My mom made lasagna, jello salad, ranch dip, banana and pumpkin bread, and pasta salad. All of my favorites!

Every year, I walk for either the JDRF (Juvenile Diabetes Research Foundation) or the ADA (America Diabetes Association). Last year, I was a Team Captain for the University of Michigan's JDRF Team, and I plan to do it again this year. Last Wednesday was the Kick-Off lunch. I took Lucy because I knew that I would see a lot of my patients and that they would enjoy seeing my beautiful girl. They Kick-Off lunch always does a good job of raising excitement and motivating everyone. If you are interested in supporting Lucy and I, you can visit my walk site.

While we were at the kick-off lunch, Lucy's tube fell out. She was nursing, and I think some of the milk got underneath the tape holding the tube. The tube simply slipped out and hit the floor. We decided to see how she would do without the tube. Unfortunately, the nephrology team really wants her to have 180ml/kg/day and Lucy was only able to take about 2/3 of that. So, the tube went back in. :(

On Friday, I took Lucy to the Breastfeeding Cafe at the Center for Childbearing Years. Oddly, there seems to be a lot of tongue tied babies these days. When a baby has a short frenulum, it is hard for them to breast feed because they cannot get their tongue out far enough. The lactation consultants in the hospital had made a comment about Lucy's short frenulum but we hadn't planned on doing anything about it. However when the other moms were discussing it and the lactation consultant said again that it might be affecting Lucys ability to breast feed, I decided to make an appointment with the ENT (Ears, Nose, Throat) doctors. We will go see what they have to say this coming Friday.

Lucy went with me to a wedding on Friday evening. Ginny is a friend from my knitting group, and she and her fiance, Jeremy, had a beautiful wedding and reception. Lucy did wonderful and did not make a peep during the ceremony.

Lucy's weight has been increasing as it should. As of today, she is up to 3.935 kg which is 8lb 10oz. Her potassium levels have been 5.8 (07/22), 5.1 (07/27), 5.6 (today 08/03).

Lucy is supposed to have "tummy time" any time she is awake. Unfortunately, today's tummy time turned into nap time. :)

Week 2 at Home

I have not been posting daily because the daily routine isn't very exciting. We feed Lucy approximately every 3 hours, change diapers as needed, and grab some shut eye.

On Monday morning we had an appointment with the nephrology team. The appointment was in the same clinic where I (Jennifer) work, so it took a little bit longer because everyone wanted to see our cute girl. Nephrology is very happy with Lucy's weight gain. She is now 8lb 3oz and 19 inches long. Her sodium supplement treatments will continue and we will use her labs as a guide. If the potassium level is okay, we will do weekly labs and monthly clinic visits. Unfortunately, on Monday, her potassium was back up to 6.0. We went to the lab this morning, and as I am typing this, the results are not back yet. In previous posts, I had mentioned the use of sucrose for pain relief in infants. Many people have asked me about this. This explanation is a bit medical, but the general idea is that sucrose (sugar) acts as a pain medication in infants.

Monday afternoon, the moving people from the furniture store came back out to fix the crib drawer. If you look closely at the nursery pictures, you may notice the drawer under the crib. The finish does not match the rest of the crib. That is because the drawer didn't fit properly under the crib so Kris and I turned it around until it could be fixed. Evidently the wheels were the wrong ones and they made the drawer too tall, preventing the drawer from fitting under the crib. Now that the wheels are fixed, the furniture in the nursery is complete.

Yesterday the nurse from Michigan Visiting Nurses came out to the apartment again. To help Lucy progress with her feedings, she suggested that we give Lucy the bottle every other feed and let Lucy breastfeed the other feeds. That evening, I gave Lucy a bottle with 80ml of milk. She drank the entire thing (but it did take her an hour to do it). She did just okay with breastfeeding later that night. Then this morning at 1AM, I got up to feed her. I gave her another bottle with 80ml and not only did she drink the entire thing, but she was still hungry! Lucy spent the next 2 hours nursing off and on and we didn't get back until 4AM. This must be that 6 week growth spurt. Today, Lucy has been doing good with the bottle. She isn't finishing the entire thing but that may be because of the sodium supplements. The milk must taste very, very salty.

I took Lucy to my knitting group last night. It was her first time there and everyone was excited to see her. We also got a wonderful surprise. The knitters made a blanket for Lucy. Everyone knit one strip and then the strips were assembled into a blanket. Lucy's name is on one end of the blanket and the initials of everyone who knit a strip are on the other end. To make it even better, the blanket was knit with my favorite yarn. It really is an incredible gift and I am extremely grateful. (The blanket is also cat approved.)

The cats (Umi is the grey one and Luna is the black one) have been doing very well with the new baby. They have approached her to sniff her, but they pretty much leave her alone. If Lucy is screaming, they simply get up and leave the room. They also appreciate all the new napping places - the play mat (see below), the baby bath, etc.

Progress (or maybe not)

Lucy went for another blood draw today. The staff in the lab is beginning to know us well. The phlebotomist got the blood on the first try and it flowed beautifully. Lucy did fantastic even without sucrose, so Kris and I treated ourselves to coffee and donuts at the coffee cart. The result came back as 4.9. That's the best she's ever had. We will see Nephrology on Monday, so until then, we will just keep things as is.

When Lucy was first in the hospital, Kris decided he wasn't going to shave until she was discharged. Since things are looking good and the hot weather outside was making things uncomfortable, Kris decided to shave. I think Lucy will appreciate not getting the scratchy kisses from her daddy.

Yesterday I went to a New Moms Club. It was nice to get out and meet some other moms with babies Lucy's age. It was at the New Moms club that I learned about Baby Pictures at the local Showcase Cinema. Once a month the theater plays a fist run movie but makes the theater baby friendly. The lights are left on low, the volume is decreased, and there are extra baby changing stations set up in the theater. Today's movie was My Sister's Keeper, and I was going to go, but since Ms. Lucy decided to not go to sleep until 3AM, I decided that a nap would bea better use of my time. Maybe I'll go next month.

Lucy's NG tube has two ports that we use to connect the syringe with her feeds. The ports are getting stretched out and the syringe is starting to fall out while her feeds are running in. This leads to a mess in her pack 'n play and Lucy not getting her volume of fluids. I was waiting for Lucy to pull out the tube herself before I replaced it, but she is being so good about not pulling it out.

So, we decided to take the tube out to switch it. While it was out, we decided to see what she could do on her own with breast feeding and the bottle. Unfortunately, Lucy didn't do fantastic. She nursed a couple of times for a short time but I couldn't get her to take a full bottle. So not only was Lucy not getting her fluids, but she wasn't going to get her medicines. We put the tube back down the left nostril. Lucy wasn't thrilled, but she did great.

Our friend Jeanette and her 19-month old son came to visit today. Ben was more interested in our cats, their toys, and our TV remote.

We gave Lucy her first full bath today. She wasn't thrilled, as can be expected. Although Lucy is nice and clean and smells good after her bath, it seems that everytime she gets a bath, she pees, poops, and/or vomits all over herself within a couple hours.

Life at Home

So it's been a while since I posted because we are trying to get used to life at home as a family. The doctors discharged us on Saturday afternoon. Lucy went home on Amoxicillin (for the possible UTI), iron (just to supplement her diet), and sodium bicarbonate and sodium chloride (for the pseudohypoaldosteronism). She is also getting at least 560ml of breastmilk per day which is a lot of fluid.

On Sundy and Monday we didn't do much. Slept in, changed Lucy's diapers, and fed Lucy. The nurse from the Michigan Visiting Nurses came to see how Lucy was doing. Lucy had her vital signs checked and everything is okay.

Sunday was also Lucy's 1 month birthday. Our present to her was no pokes. It was the first day since she had been born that she wasn't poked for blood or an IV.

On Tuesday, we took Lucy in for a blood draw and to see her pediatrician. Lucy's potassium was elevated again at 6.1. Luckily, the doctors asked us to just increase her sodium supplements rather than be readmitted into the hospital. We will have blood drawn again tomorrow and we have an appointment with Nephrology next Monday.

We also took her out to eat for the first time. Lucy slept through the meal like a good little girl.

Lucy's weight is 3.505kg = 7lb 11oz.

Back to UMHS

So this week too has passed in a blur. And not because we're at home adjusting to life. No, we are back in the hospital. I apologize for not posting this earlier, but I've not had computer access.


We went home on Sunday afternoon around 2:30 in the afternoon. It was really great to be home. It was a long night with very little sleep. Between getting up every 3 hours to nurse her, give her the feeds through the tube, and pumping (a total of 90 minutes every time) and not being able to fall asleep because I was constantly listening for Lucy to wake up, it was a long night.

On Monday morning, we went to the local clinic to have Lucy's blood drawn. Of course, the clinic did not have the lab slip, so it took a little time. Unfortunately, they had to poke Lucy twice so she ended up with matching pink bandages on her arms. Daddy also made sure that Lucy got a sticker. (I will post pictures later.) Kris then spent a couple hours at the hospital pharmacy trying to get Lucy's prescriptions filled. There was issues with her insurance and then it turned out that insurance didn't even cover her prescriptions.

We all then went to the pediatrician. This was just the standard follow up after being discharged from the hospital. After the pediatrician, we went back to the pharmacy to finish the prescription fiasco.

Around 5PM, we got a call from the Nephrology nurse. Lucy's potassium from that morning had come back at 6.0. The doctors wanted to redraw it to confirm, but by that point, all the outpatient labs were closed, so we had to go to the Emergency Department. As we were packing up our things to go back to the hospital, Lucy pulled out her NG tube. We keep warning her that if she pulls it out, we were going to put it back down, so that is what we did. We arrived at the ED around ED at 7PM. They did and EKG on Lucy which was fine, and redrew her blood. The potassium was 5.9. Because the potassium was right on the border, the doctors gave us the option of being admitted that night or rechecking the potassium in the morning. Kris and I didn't want to get stuck bouncing back and forth, so we decided to just stay at the hospital.


We didn't get admitted back to the NICU, but rather they put us on a general pediatric floor. (It's the same floor where my patients are admitted when they get diagnosed with diabetes, so I know a lot of the staff up here.) On this floor, there are 2 patients per room, but we were fortunate to get a room by ourselves. It was nearly 3AM by the time were able to go to bed.

Since our admission we have been watching Lucy's potassium levels. Every time we get close to being discharged, the potassium level spikes back up. The doctors have been increasing both her sodium chloride and sodium bicarbonate levels. They also gave her an IV bolus and one dose of Lasix. Lasix is a medication that makes you pee. And Lucy did pee. When I got up to change her diaper in the middle of the night, she had soaked the diaper and all the bedding under her. She was swimming her own pee!

That same day, Lucy's white blood count came back high, and she was acting very tired and lethargic. Because there was a concern that she might have an infection, the doctors decided to work her up to rule out an infection. Lucy had another lumbar puncture (she had one soon after birth), blood cultures drawn, and urine collected. The nurse put a urine collection bag on Lucy but with the Lasix, she peed so much that the bag fell off. In order to give her IV antibiotics, she got another IV placed in her forehead. Also with that blood draw, she hit the limit of blood they are allowed to take from an infant in 24 hours. Needless to say, it was a rough night.

Lucy's potassium levels have been good for the last few days. If that continues, and once we get the cultures back and do the antibiotics, we will go home again. We were only home for 29 hours the first time, so our goal will to be at home for longer than that.

Lucy is still working on breastfeeding, so we are using her NG tube. (She is starting to wake and is due for a feeding, so I am going to wrap this up.)

Although we have a lot going on, we are celebrating that Lucy has been with us for 4 weeks. She will be one month old on Sunday. She is gaining weight appropriately, still has her gorgeous hair, and is the cutest baby in the hospital. I love watching her hands and face.

We appreciate all that everyone has done for us and for the prayers that we know are being said for Lucy.

Going Home

We are home!!!!!! Lucy's potassium was 5.8 today, and the doctors agreed to discharge her. We have to go back tomorrow morning for another set of lab work and then she has an appointment with the pediatrician in the afternoon. Also, the hospital's outpatient pharmacy was closed today since it was Sunday, so we have to get those meds filled tomorrow. The inpatient pharmacy sent us home with enough doses to get us through the night.

On our way out, we had to stop by Big Bird for a picture. Big Bird is the mascot of C.S. Mott Children's Hospital. If you are ever lost in the hospital, just ask someone where Big Bird is, and you'll be able to find your way.

Life at home is an adventure so far. Everything that we do has a new perspective to it.

Day 23 of Life

Happy Fourth of July!

Lucy's potassium was 5.2 this morning. If it continues to be that good tomorrow, we will be able to go home.

We are still working on feeding. The doctors are concerned because she is not taking >50% of her feeds by mouth. However when they do their calculations, they are doing it for the 24 hour period. Since we are working on breast feeding during the day, that automatically hurts her numbers. I keep trying to point out that they need to calculate it using the number of bottles, not the number of feeds. The good news is even though Lucy is taking in a lot of fluid, she is tolerating it. She is also doing well with breast feeding when she is hungry and awake.

Lucy's belly button stump fell off last night. (You can tell I am a first-time mom because I am sorry that I missed that little event.) She has also grown out of the newborn size diapers and is wearing size 1 now. Her weight today is 6lb 15oz. The doctors are pleased with her growth.

Please keep your fingers crossed for a good potassium level tomorrow. Hopefully I will be posting tomorrow with an infant in my lap in the comfort of my own living room.