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.

Day 22 of Life

Lucy is 3 weeks old!!! And still in the NICU. . .

Her potassium last evening was 7.6. This morning it was 6.3. Better but not good enough to get us discharged. The doctors went up on her sodium dose again, and we will see what happens tomorrow morning.

Luckily, I did finish Lucy's outfit for tomorrow. I am going to post a picture on Facebook early tomorrow, so you can see the cutest girl on the 4th of July.

The good news is that Lucy's crib and dresser were delivered today. We have been waiting for several weeks for it to be delivered. I had been washing baby clothes and blankets and storing them in a suitcase to keep the cat hair off them. This evening, I was able to put them in the dresser and get the nursery organized. Now all the nursery needs is a baby!

Day 21 of Life

Sorry for not posting yesterday, but I was in bed and asleep by 7:30PM and forgot to post. We had a lot of discussion with the doctors today regarding the discharge plan.

The nephrology doctors would like to see her potassium level stable in a safe range before discharge. However, before today, no one had said how many times the potassium needed to be in the safe range. Today, they said it needs to be there twice. Unfortunately, her potassium went back up to 6.6 mMol/L today. It had been 5.5 yesterday, and the doctors want her to be in the 5's. So they increased her dose of sodium chloride. We started the increased dose at 3PM today. She will get the second increased dose at 9PM. Then she will have a set of labs drawn at 10PM. Her second set of labs will be tomorrow morning. Please keep your fingers crossed that her potassium levels come back in the 5's!!!!!!

MedEquip is a medical supply company. They brought our supplies Lucy's NG tube for home. We have a scale for daily weights and the tubing and containers for the feeds. We will also have a nurse from the Michigan Visiting Nurses come out daily for 5-7 days to help us. Kris and I are doing more of Lucy's NG care - including inserting the tube ourselves today. If you notice in the pictures, the tube is now in her left nostril. Kris and I both practiced inserting the tube and we were both successful. As you can imagine, Lucy was not thrilled to have both of us sticking a tube down her nose.

Lucy continues to work with me on breastfeeding. She does decent when she is awake, but she doesn't always work with our schedule and is frequently sleeping during feeding time. Overnight, with the nurses, she is doing well with the bottle.

Our little girl is as cuddly and cute as can be. She curls up and reminds me of a bowling ball. Kris and I are starting to compete for time holding Lucy.

I have almost finished Lucy's Fourth of July outfit. Since she wasn't supposed to be born until later this month, I didn't buy her a July 4th outfit. Earlier this week, I started crocheting a little red, white, and blue dress. It is almost done, and if we go home tomorrow, it will probably be her going-home outfit as well as her outfit for Saturday.

It was bath time again tonight. Lucy's lungs sure do get a workout during bath time.

I will post more as we hear it. In the meantime, thank you for all your support. Please keep your our Lucy in your prayers.