My Little Corn Cake

Norah successfully received a batch of her stem cells today! The idea of having stem cells infused seems so big and grand. So for the infusion to take about 10 minutes, it just doesn't seem right. Yet for a ten minute infusion, there are hours of waiting before the infusion for the cells to be defrosted. Then, after the infusion, another few hours of observation and IV fluids. It all adds up to a long, but exciting day filled with possibilities for Norah's future.

Norah was enjoying all the extra attention up until the tourniquet was placed on her arm, and she was held down to place an IV. From that moment on, she was hysterical until the infusion was complete despite Trey, the music therapist trying his best to keep her calm and relaxed.

When she was all done she was spoiled with some great Mommy and Daddy cuddles.

I don't know who was more exhausted Norah or her parents. 

Norah shows off her wounds from the day.

Now Norah is chilling in her crib, smelling up the hotel room. The stem cells have a preservative added to them called DMSO. When the cells are thawed and rinsed, not all of this is able to be removed. So once the cells are infused into Norah, the DMSO is excreted through her skin. Since the DMSO is corn based, it has that scent to it. We are affectionately calling Norah our little corn cake. We are so thankful that we are able to give Norah this opportunity ad pray the stem cells find their was to her brain over the next 3 to 6 months (that's the amount of time it take to get there, talk about a scenic route).

Exciting news, Norah has enough stem cells left for a 3rd infusion if we decide that she needs it. Even if she doesn't receive another infusion right away, it's nice to know she'll have those cells still available.

Thanks to Dr. Kurtzberg and all the staff at Duke, you have been so wonderful and helpful.

Stem cells

Time for Norah's stem cells!!

We'll update later.

Off to Duke

Jason and I brought Norah to North Carolina this week. We are here for a second time for a cord blood infusion  for Norah for her cord blood we saved at birth. We were here in early September for Norah first infusion. After that infusion, Norah perked up and just came alive. We have watched her achieve more than some doctors thought she would ever do and just want to give her the opportunity to become her best.

Norah and her daddy, cuddling while we wait.

Today we went to Duke University Hospital for Norah's screening and checkup. Norah weighed in 15 lbs 4 oz, she hasn't gained any weight from last weeks appointment. I'll just hope this scale is calibrated lighter and maybe she has gained a little weight. Then time for her blood to be drawn, my least favorite part of our day. Six tubes of blood needed to be drawn, yikes! After the phlebotomist looked for his spot, I switched into nurse mood. I held my little girl down like I hold down babies in the ER when I have to start an IV or draw blood samples. First stick, blood returned immediately, yeah! That was until the tube was filled and the next inserted, at the moment I saw Norah's vein blow, bummer. He left and found the lead phlebotomist to draw Norah. After several minutes of looking and warm packs applied to one of her ankles, here comes the second poke. After one repositioning of the needle, the tube quickly began filling, yeah getting another person to look and that took her time was a good thing! As soon as the tube was switched, Norah's vein blew, not again. You can see how the rest of the lab draw went. At one point I had to stop myself from grabbing the syringe trying to adjust it for the phlebotomist knowing that's how I would do it. Four pokes later, with only four of the tubes filled, we were sent home with one unhappy little girl and knowing more pokes will happen tomorrow to get an IV and the rest of the blood.

Norah was much happier after eating and a nap

Tonight we are praying that Norah infusion goes well tomorrow. We pray that her stem cells will continue to heal her and help improve her development.

Goal: Gain Weight

This is Norah's goal. I wish this was my goal, I sure I could achieve it without difficulty.

We went for Norah's 9 month checkup on Monday. Dr. Andy says Norah is making excellent progress. Our concern is Norah's weight has dropped below the 3rd percentile. She's currently 15 lbs 4 oz.

What to do, what to do????

I am still breastfeeding Norah, and still prefers nursing over bottle feeding. In the past when there was concerns about her weight we tried adding high calorie formula to a bottle of breastmilk once a day. That just lead to a cranky, gassy baby spitting up all over Mommy and Daddy. I have always ended up back letting her nurse on demand for a long as she wants. I spend alot of my day sitting in a chair, nursing Norah and feeling like I am neglecting Grant. Grant often comes and cuddles with Norah and I while she's nursing. It's fun bonding time.

Now that she's eating baby food, previous to the appointment Monday, Norah was eating baby food twice a day with rice cereal mixed in. Now we've stepped it up. Norah is eating cereal twice a day with purreed baby food, and veggies with rice or pasta mixed in, once. We are also giving her finger foods to start eating. Sunday, Norah ate her first pancake, she loved it. I think she prefers finger foods more that the mashed up goodies she usually eats.

Norah's little personality really shines when it comes to eating. If she doesn't like, it's not going in her mouth. I often try tricking her into eating vegetables which she dislikes the most. One bite of something she likes will get her to open her mouth for the next bite where I sneek in a bite of veggies. Norah usually goes for this long enough to get an once of food in.

I received some great ideas from one of the girls on the babycenter message boards that I think we are going to try......I hope it works.

Happy Mother's Day

Happy Mother's Day to all the wonderful mommy's out there especially my mom. I am blessed with a wonderful mother. I don't know how I would have survived this last year without all her love and support. She has made many extra trips to Milwaukee to help take care of Grant while we went to many doctor appointments before Norah's arrival. She stayed wth us once Norah was born, so we could spend more time at the hospital.

Thank you for all that you have taught me, and all the love and suppoort you have given me. I love you.

Celebrating Grammy's Birthday

Today we celebrated "Grammy's" birthday, Jason's mom. Grant and Piper, Grant's cousin, are playing with each other more everytime we get together. Grant had fun vacuuming Grammy's floor, I hope he countinues loving to clean in the years to come but I have a feeling that it will change when he gets older.

It was strange to be at Jason's parents' house with most of their belongings packed away. They are in the process of moving to Florida to retire, and their house is "staged" to sell. We hope for them it sells soon. For us, we'll miss having them just a hour away.

We ate lunch at Friday's. It's strange to see how much our family has grown. When Jason and I first began dating (11 years ago!!) and we would go out to at, we would be seated at a booth or small table. Now it's four tables slide together. I'm used to seeing this site when we go out with my famiy, but today is was strange to see this big table set up for the Zehrung clan. It's nice to all be together having fun.

Happy Birthday and Happy Mother's Day Trish!

Catching Up

Here's what's up!

1. Prayer requests!! One for Emerson, the son of my friend Victoria, who lives down the street. He began having siezures this week and has a cyst on his cerebellum. Second for Cayman. I have been following her family blog since I found out Norah had hydrocephalus. She's sick and needs our prayer.

2. In just over a week Jason, Norah and I will be headed back to North Carolina. We are going to Duke to have Norah's stem cell infusion for a second time. We believe this has helped Norah's developement and pray that this second infusion will spark new milestones for Norah. Grant will get to stay home with his Granny watching him.

3. Grant has some new backyard toys and LOVES to play with them. Thanks to Grandma and Grandpa Zehrung for the Cozy Coupe! I am having a hard time letting my little guy be more independent and explore. Will I ever feel like he's old enough to go play in the yard by himself? Man if I'm struggling with this, I can already tell that the first day of school is going to be a tough one and it's years away.

4. Happy Birthday to my Mom and Dad, and to my Mother-in-law! I can't believe you all share a birthday. I hope you all enjoyed your day.

5. Norah is getting closer to sitting independently every day.  On Tuesday we sat out with our neighbors for awhile and Norah sat on her own for 5 minutes. She hasn't repeated this accomplishment, but I know she can do it. I love that spring is here.The warmer weather allows you to reconnect with your friends and neighbors after hibernating all winter.