Day 19 of Life

(Sorry for not posting yesterday. Not much happened and I was tired when we got home.)

We are making steps towards going home. Lucy received her Hepatitis B vaccination today. She cried a little bit but quickly settled.

Lucy took over 80% of her feeds by mouth yesterday. At 3AM today, she drank her entire bottle. This is very good news and her keeping this up is what will get us home sooner. Because we also want to know that she knows how to breastfeed before we go home, we are going to work on breastfeeding during the day and bottle feeding overnight. For any feeding that I am at the hospital, Lucy and I will practice breastfeeding. Until I get a feel that she is taking in a large quantity, she will receive her 64ml of fortified breast milk via tube after she is done feeding. Overnight, the nurses can feed her the 64ml via bottle. Because of Lucy's meds (sodium chloride and sodium bicarbonate), she will continue to need milk via tube/bottle 3 times per day. We are fortifying the breast milk with Similac PM 60/40. This makes the breast milk higher in calories without messing with Lucy's sodium and potassium levels. The dietitian brought us the powder and the recipe today. (Another step towards home.)

One of the things Lucy must do before she can go home is pass her "car seat challenge." She must sit in her car seat for 30-45 minutes and demonstrate that she can keep her heart beating and remember to breathe. I don't think the doctors are really concerned about this for Lucy - It is just one of those things all NICU babies must do. Kris and I brought the car seat in to the hospital today, and I think they are going to do her challenge tonight.

Lucy's weight is finally above her birth weight. She weighed 6 pounds, 9 ounces today. (However, she did not have a dirty diaper before being weighed, so that 6lb 9oz counts whatever urine and stool were still inside.)

As new parents, we are learning that an uncovered baby butt is like a loaded gun - you should never point it at anyone cause it might discharge at any time. We have had a couple occasions where Lucy has taken us by surprise during a diaper change. Fortunately, in the hospital, she is in the isolette and those standing nearby are protected. At home, we are not going to have such protection and will have to use care when changing diapers. :)

Outfit changes: 2
Weight: 6lbs 9oz
PO intake: >80% yesterday
Lab values: sodium within normal limits, potassium slightly high again

Day 17 of Life

Lucy spent the day with Grandma and Grandpa Schwab again so Kris and I could get some more time away from the hospital. It will be nice when Lucy comes home because we can sleep when she sleeps.

There is a small scratch on Lucy's left cheek. We think she did it to herself with her fingernails. So, Lucy got her first manicure today. I used an emery board to get rid of her sharp little nails.

It was also bath time again today. She didn't get nearly as mad, and when I was washing her hair, she actually looked like she was enjoying it.

Outfit changes: 1 (after her bath)
PO intake: 47% yesterday
Lab values: sodium slightly low, potassium within normal limits
Weight: 6lb 3oz

Day 16 of Life

Lucy found her thumb today and was sucking it. Actually, she was just really hungry and we weren't changing her diaper fast enough.

Grandma and Grandpa Schwab came to see Lucy. They drove into Michigan from Illinois so Kris and I could take some time away from the hospital (aka take a nap).

Lucy weighed 6lb 3oz tonight. She is doing well with her bottles, and the doctors say that if she can drink >50% of her bottles, she can go home with the NG tube. We are on our way!

Outfit changes: 1 (at bedtime, into this cute little yellow outfit)

Day 15 of Life

Lucy is 2 weeks old!

Her head IV went bad today, but since she is such a hard stick, we convinced the doctors that she didn't need her 2.4ml/hr of NS. They are going to increase her feeds instead. She is now taking 64ml 8x/day. She gets some powder formula added to the breast milk to increase her calorie intake. She is also getting salt supplements 3x/day. Today, she drank about 20-40ml from each bottle. Her weight is 6lb 0oz which is what it was yesterday.

No discharge date set yet. We are hoping for sometime in the next week.

The crib and dresser for the nursery are set to be delivered next Friday. Then we should be set and have everything that we need.

Grandma and Grandpa Schwab are coming to visit this weekend. We (Jen and Kris) need some time away from the hospital and feel better knowing that Lucy will still be with family.

Outfit changes: 2

Day 14 of Life

Lucy's potassium level was within normal range today!! Her sodium was still a little bit low. The doctors think she might have pseudohypoaldosteronism.

We are working with Lucy on breastfeeding.

She has an IV in her head because her hand IV went bad.

Kris and I are finding the long days at the hospital draining, so we left early today. We took a nap and then did some grocery shopping.

No word yet on a discharge date, but the Schwab Family is ready to be together at home.

Day 13 of Life

Lucy spent the day in her pajamas. She has her IV in her hand, so it wasn't easy to get her dressed. She is receiving IV fluids to keep her hydrated and to give her extra sodium. Lucy's sodium level is still low while her potassium level is high. Because high potassium can mess with heart, Lucy had an EKG done. The doctors also ran some tests to look at her aldosterone level, and that level came back fine. Aldosterone works to keep sodium in and potassium out of the body. Because Lucy's aldosterone level is okay, they now think there might be an issue with the aldosterone receptors in her kidneys. This may just be due to the fact that she was born preterm. Until they find the answer, they are treating her with sodium supplements.

We gave Lucy another bath tonight. We also worked on breastfeeding and bottle feeding. Our little girl is being asked to do a lot!

Yesterday, I learned how to give Lucy a massage. The nurse showed me how to ask Lucy's permission and then how to use the massage to help her relax. Definitely something I enjoyed learning.

Day 12 of Life

Lucy took THREE bottles today for us. We needed to show her what to do and reminder her to keep going, but she did it. That is a huge step towards going home. Hopefully it will continue. (I had to leave tonight and don't know how she did with the rest, but I have confidence in her.)

We are still trying to figure out what is messing with her sodium and potassium levels. Endocrine does not think it is CAH and we didn't have a chance to talk to Nephrology. Guess we will see what tomorrow brings.

Outfit changes: 1

Day 11 of Life

Lucy had a busy day today. Because some of her newborn screening labs came back screwy, she is being worked up for congenital adrenal hyperplasia (CAH). Now this is a bit odd/ironic because the doctors who are looking into this are the ones that I (Jennifer/Mom) work with. At least I know Lucy is in good hands.

Part of the workup included drawing labs, giving a medication, and then drawing more labs. So, Lucy has another IV in her left foot. While all of those lab results are not back, the preliminary ones are looking good.

Lucy's sodium level has been low and her potassium level has been high. This could be explained by the CAH, but since it doesn't seem that she has CAH, the nephrology (kidney) doctors are now evaluating her. Tomorrow morning, Lucy will have more blood work drawn and they will collect a urine sample for more info.

Bottle feeding is still not going well. One nurse did get Lucy to take half of her bottle, so we will continue to work on it.

Lucy got another bath tonight. She sure does get mad. The picture to the right is during her bath. She had cried so much that she was just exhausted.

Outfit changes for the day: 2

Day 10 of Life

Happy Father's Day daddy!!!!!

Momma has decided that it is time for me to get out of my PJs and start wearing some real clothes. I surprized her by only getting two outfits dirty.

I got my first piece of mail yesterday. It was from the insurance company telling me that my stay in the NICU was approved. That's a good thing.

Still working on feeds. Not vomiting up all of my meals, but some spit up. Also not interested in the bottle and prefer to take the feeds by tube.

Day 9 of Life

Today was a big day. I got to meet Uncle Mike. He drove down from Milwaukee to see me. (Actually he game for the Brewers vs. Tigers baseball game.) Daddy (Kris) went with him.

You may also notice a couple pictures of me without my nose tube. No, the doctors didn't discontinue it, I decided to pull it out myself. I got my little finger between my nose and my tube, and voila! I got it out. Unfortunately, mommy and the nurse put it back down my nose before my next feed. The doctors say I might go home with the tube in place to help me eat and grow. If that is the case then mommy and daddy will have to learn how to take care of the tube, so this was just practice.

Auntie Mary left this afternoon. She had to go back to Chicago, but she really didn't want to leave.

Mommy and I kangaroo'd today for over an hour. It was nice and cozy and mommy even fell asleep for a little while.

I got another bath today. Mommy had to do it herself since Daddy is at the baseball game, but she did okay.

Tomorrow we are looking forward to celebrating Daddy's first Father's Day.

Day 8 of Life

I am starting my second week of life. I am having difficulty with my feeds. I either fall asleep while trying to eat and/or I vomit my food once it is done. Since I cannot tolerate the volume, but I still need the extra calories, the nurses are adding Human Milk Fortifier to my food. Mom (Jennifer) calls it my Crystal Light On-The-Go packets.

Daddy learned that emesis means vomitting. And mommy did not get poop or vomit on herself today. She is learning to do the diaper changes faster!

Mom and I did some Kangaroo Care today. Mom thinks it is the best thing ever and looks forward to kangarooing for several hours each day.

I was very awake for my 6:00PM feeding.

Day 7 of Life

My mom and dad can hardly believe that it's been seven days since all of this started. Time flies when you are having fun!

I took all of my midnight and 3AM feedings by bottle. It seems that I must be a night owl. My mom and I are still working on breastfeeding. I just get so comfy when she holds me that I fall asleep instead of eat.

My hearing test was today. I passed with flying colors. (See picture.)

The doctors say I might go home by Monday. Mom and dad better get my stuff ready. They still don't have a crib or dresser/changing table, but they do have a bassinet.

Aunt Mary is coming to visit today. She is driving in from Chicago and will spend a couple days with all of us.

Day 6 of Life

I am doing good today. The doctors have discontinued my antibiotics and my IV feedings, so I don't have an IV any more. My "trip to Florida" with the bilirubin lights is done. I still have the tube that goes down my nose to my stomach, and I have to wear the monitors, but that is it!

Mom's coworkers came to visit today. I think they were excited to meet me and I even opened my eyes a little bit for a little while. My mom (Jennifer) sure does appreciate their support.

The doctors say I might go home in another 7-10 days. It is really up to me to decide how I want to do with my feedings. I am offered a bottle every 3 hours, and what ever I am too tired to drink, they put down my tube. Mom and I are working on breastfeeding. I still have a lot to learn.

My mom and dad are doing good. They are getting sleep at night and feel good. They know that everyone is rooting for us and appreciate everyone's thoughts and prayers.

Day 5 of Life

This is my fifth day of life, and so far things are going okay. My bilirubin level is still high, so I am "going to Florida" and going to have to spend more time under the bilirubin lights.

I am doing well with feeding. The doctors and nurses say that they wouldn't really expect me to use a bottle until I was 35 weeks old, but I am surprising them and taking the bottle already. If I am too tired to drink, they put my meals down the tube in my throat. And because I am doing so well with eating, the doctors are going to discontinue my IV feeds.

All of the tests for infection have come back negative so far. I am going to get off my antibiotics soon!