The stress when Norah gets sick!!

Norah woke up Sunday morning with a fever. I can handle a fever, but when she spent all afternoon sleeping then began vomiting repeatedly Sunday night (6 times over 2 hours) my radar was up and I was feeling stressed trying to decide is this just a virus or a shunt failure.

We have been blessed to not have had a shunt failure since Norah left the hospital last August. I know that at some point it will fail, that is just the facts. I also feel a constant strain/battle within between being Norah's mommy and being a RN in an ER. There are times when I want to pick her up and run to the ER, then the nurse in me say step back, look at all the symptoms what makes sense. It's a mixed blessing at times. I can remember Norah being in the NICU and getting her first dose of vanco to help prevent any infection from her incision leaking CSF. I knew she was developing Redman's reaction, yet she received two more doses with a worsening reaction before I could get anyone to pay attention. I hated feeling not in control. In that moment I didn't ever want to leave Norah side for a minute, she needed me there to be her mom and advocate. I also dislike it when staff thinks I know something because I am a nurse and don't properly explain things. This is my child, I am currently not working, the brain is processing things differently and my husband needs to understand as well.

Alright enough with my vent.

After two long days and the battle of what to do (not to mention a trip out of the country quickly appoarching) Norah's fever finally broke this afternoon. She was more like herself tonight but still tired. I pray tomorrow on the mending path.

Will this stress I feel whenever Norah get sick ever go away? I wish there was a magic button to let me know when to worry and when to just go with the flow!!

Making Christmas Ornaments

Just over a week ago Grant, Norah and I spent the afternoon making Christmas ornaments to give as presents.  We just wanted to share all the fun we had, and I think the paints will stay tucked away for another snowy day.

**To those of you that were supposed to get these on Christmas day, you get them soon. I'm sorry I left them in a box on the kitchen counter, I blame it on being pregnant.**

Christmas Celebrations

We have enjoyed celebrating Christmas, and our kiddos have given us lasting memories. Christmas Eve was spent at our house and our little family. Grant could not wait to start ripping open all of his presents and even some that weren't his. He gladly helped Norah open a few of her presents and I think that he thinks some of her presents are his - oh to be two years old.

On Christmas morning we traveled to be with Jason's side of the family. We arrived in the morning with Monkey bread for breakfast. Many gifts were shared and watching the kids' excitement was precious.

The day after was spent with a sick mommy and a sick baby Norah, ugg. Oh, and as for celebrating with my side of the family, that will be soon, as we all travel south of the border.

"Steps" in the right direction

Norah took her first solo steps using her stroller walker today. We did this a few times today and tonight she was off on her own. She's just shy of 17 months. She still isn't standing independently, but this is a huge move in the right direction. Check it out for yourself.

Can you see it? Exciting News

Did you pick up a clue in the Thanksgiving post?



Now look at our refridgerator, do you see it?

Grant and Norah are excited, as are their Mommy and Daddy to tell you all that we are anticipating the newest addition to our family in June 11, 2011!

Give Thanks

This year we are thankful for

• for our growing family. Norah is making such great progress, she amazes us daily.Grant is making great improvement with talking.  His speech has been delayed, making us worry at times. I guess he was too busy to talk.
• having jobs, especially ones that are flexible so we don't need to rely on daycare.
• the previous leads to Jason and I being able at home most of the time the last couple of years with our children, watching them grow and creating amazing memories. Jason was able to work from home and myself working every other weekend and one day of the week.
• finally finishing (or near finishing) some home improvement projects that have taken a couple years to complete.
• all the generous donations our family and friends gave us to support the Hydrocephalus Associations.
• Jason making a Thanksgiving day feast while I am working my holiday shift in the ER, I hope this shift is uneventful and I can be home on time to enjoy our feast...I let you know how it turned out.

Happy Thanksgiving to all of our family and friends, we are thankful to have you be part of our lives.

Silly Faces

Weekend Project: Backdoor

This weekend we (alright 98% Jason....I helped pick out the door, carry it and held in place for a minute) tackled replacing the back door to our house with a new door. The old door was cracked and the storm door hinge gave way to rust this week. Before the first winter storm hits, we thought we'd change the door and keep a little more of the heat inside. Grant was anxious to be his Daddy's little helper.

While his demanding enthusiasm to help slowed things down at times, we were given some unforgettable memories.

And don't think Norah didn't want in on the action as well.

We kept her on the outside of the gate and she helped me clean the kitchen.  I was happy to sneak into the basement to clean the laundry room, do some spider control and started to weed through some stuff that we need to find a new home for (preferably out of our home).

Hopefully we be able to finish the drywall and tile work in the back entry in the next couple of weeks and cross that project off our long list!!

Standing Tall

This week we finally found a pair of tennis shoes to fit Norah's tiny size 3 feet. Did you know most tennis shoes start at size 4? Her physical therapist has been wanting her in shoes for a few weeks. Hopefully Norah will gain more control over her balance with a solid shoe base. She has done a really good job leaving her shoes on her feet, and I see her cruising along the furniture with more control and a faster pace. In the next few weeks we'll see if just the shoes will be enough to get her standing independently or do we need some ankle foot orthodics (AFOs).

Please ignore all the toys under the couch, I had no idea that much junk had been pushed under there throughout the day. I had just cleaned it out that morning! I'm still learning (in denial) that with little one your house never stays clean.

Prayers for Matthew

A little boy, Matthew, who was also born with hydrocephalus is in need of some prayers tonight. He has been sick for a few weeks now with severe vomiting. I have been keeping up on his families frustrating journey through their blog. His mom, Jill has a amazing letter that she has written to families that happen upon her blog because their child is diagnosed with hydrocephalus. I find her to be a truly remarkable lady and caring mother to her children. Please send them some prayers tonight as the drive from Nebraska to Minnesota with their sick boy and find some healing answers for his illness.

Matthew 21:22 "If you believe, you will receive whatever you ask for in prayer."

Why is Norah so happy?

Norah saw her neurologist on Tuesday. We were able to finally get some insight into her MRI that she had in September. I am still going to request her medical records so I can get more information, I guess it's the nurse in me that feels like doctors are not always sharing everything with you, I have seen that practiced by some doctors. So what do we know, her MRI points towards a hydrocephalus caused by aqueductal stenosis and a chiari malformation. This may lead to more surgeries in the future. If it begins to cause problems, the cerebellum getting pushed to far into the spinal cord, it will manifest similarly to shunt failure. We will have to talk to our neurosurgeon more about this at our next appointment but that isn't until the end of January.

Overall the neurologist thinks Norah is doing great, and from her side of things she doesn't see the need to see her again. She said we are welcome to see her again in a year  for followup, but not necessary and if any concerns were to arise she would see us promptly (I think for her that would be within two months, since our appointment usually gets bumped two or three times before we can get in). Hooray, finally an appointment were we weren't referred to another doctor and we have been turned loose.

While I am excited about this milestone, part of me worries that things will change tomorrow. This is when my fantastic husband steps in and reminds me not to dwell on the what-ifs and to enjoy what we have here-and-now.

As for more Norah news, she continues to crawl and pulls herself up. She is starting to get better at cruising, but would prefer to not bend and flex her hips and knees. I am working on find a good pair of shoes with arch supports, do know how hard that is to find in a size 3. I think may end up with some mini AFOs for just her foot and ankle in the near future. Norah still prefers a bottle over a sippy cup, but we are making progress in that daily. She was just over 18 pounds at the neurologist office, I think the pediasure is helping.  Our pediasure tip: banana flavor is our favorite, and make it super cold. Norah will take the Strawberry flavor, but shows favor to banana. Her language skills are growing. It is fun to hear her trying to say words, or at least trying to match syllables and sounds. Grant has been delay with his speech so I think they will learn some things together.

Now that we are updated, time for bed :)

Halloween Fun

Happy Halloween from our little lion and tulip fairy!

Halloween brought fun memories as we took turns walking Grant from house to house in our neighborhood on Friday night. We watched him roar and learn how to say "trick-or-treat." Norah hung out at the house inspecting all the candy, making sure we were passing out only good stuff. Jason and I both agree that Grant enjoyed passing out the candy much more than actually getting his own stash of candy. I'm sure that will change by next year. I had to spend the weekend working but Jason and the kids headed out to The Boo At the Zoo. Grant was able to hang out with lion friends. We enjoyed our halloween without the trick, but plenty of treats!

Crocheted Sweater

I made my 1st crocheted baby sweater. I have made quite a few hats lately and ready for something different.
How did it turn out?

I now working on a ruffle scarf for myself, it's looking good so far. 

Bread Pudding for Dinner??

I'm a fan of bread pudding, but it has always been for dessert, never the main course. After I stumble upon this recipe, I couldn't wait to try it. I was still unsure of how it would taste, would it ruin my like for bread pudding all together?

Well it was a hit including the kiddos. The original recipe called for chopped chicken, but I had some left over turket breast that I used. I love finding ways of using leftover meats, Jason is not a fan of reheated meat.  I would highly recommend trying this with your leftover turkey from Thanksgiving.

Turkey, Mushroom and Asparagus Bread Pudding
Adapted from The Sweets Life

Ingredients:


-4 cups whole grain bread cubes

-1 onion, chopped

-1 lb asparagus, chopped into 1-inch pieces
-4 cups mushrooms, chopped into quarters

-3 cups of chopped turkey (or chicken)

-1 tbsp vegetable oil

-1/8 tsp pepper

-1 1/2 cups milk

-5 eggs

-1 cup shredded Italian cheese



Directions:

1. Place bread cubes on an ungreased baking sheet and toast at 350F for 10 minutes.

2. Heat oil over medium-high heat in a large skillet. Add chopped onion and cook until soft (approximately 8 minutes). Add the asparagus, lower heat and cover, cooking for 5 minutes, stirring occasionally. Add the mushrooms and pepper, cover, and cook for an additional five minutes.

3. Lightly grease a 9 x 13 baking dish. Spread bread cubes in the dish and top with vegetable mixture and chicken.

4. In a blender, mix milk, and eggs. Pour blended mixture over the bread. Top with cheese.

5. Bake at 350F for 40 minutes. Allow to sit for 5 minutes before cutting and serving warm.

Norah Update

Norah went to her develpmental checkup a couple of weeks ago (has it really been that long already, haven't been on top of blooging lately). Norah saw the neonatologist that has followup her since she was in the NICU, as well as a physical, occupational, and speech therapist.

Norah doing amazingly well in her cogniton placing her a 13 months, which is her adjusted age.Yea Norah!! She is delayed with her gross and fine motor skills, placed at 9 and 10 months. Her speech was placed at 11 to 12 months, she definately knows how to make noise with those vocal cords. As for words, she can say "momma" and "dadda" that's about it, but those are our favorite words.

Concerns and comments we were left with after her appointment
1.) Norah's still a lightweight, so we are now giving her Pedisure every night before bed.
2.) Norah's lumpy head, actually I think it has gotten worse since the appointment. Call into neurosurgery, not the best at calling back.
3.) Getting Norah to learn where she is in space and start building her muscles, swimming once a week was reccommended, we'll see if we can work something out.

After being Norah's mommy for 14 months now, this is what I know. Norah is Norah, her personality shines. She takes her time in all that she does. She needs time to warm up to someone or something new. We love Norah so much and will always be here to cheer her on, trying not to push too hard, and will always accept her with all of our heart.

Waiting For Daddy

Jason's project is taking off and with it came the hiring of an employee and renting office space. We have been spoiled for a year and half with Jason working out of our house 90% of the time. I was always impressed how on top of his work he could be, if I worked from home I don't think I would be very productive. Yet if the was a moment an extra set of hands could be useful or just wanted to share a cute moment with the kids, all he had to do was run up the stairs. 

This week we are missing are our Daddy moments, and waiting for him at the door.

We love you Jason.  

Finally a MRI

The day finally arrived, it has been just over a year since Norah had a MRI. I couldn't wait for a good peak inside that little head of hers. Norah last had an ultrasound in January that said her ventricles were shrinking and that's where we have been left hanging. In June she was scheduled to have an MRI and her doctors felt she was doing so well they postponed it until now.

Norah is doing great, I know, I see it everyday in her interactions with us, her babbling, and her crawling. Lately I find myself needing some reassurance, especially since Jason and Norah's tumble down the stairs leaving Norah with the cephalohematoma, which is nearly gone now. Norah's head circumference has changed little over the last six months, she has gone from 90th percentile down the the 15th percentile for age. That's a almost a straight line down the chart, not the nice little curve they tell you it should be. We've been told a decrease is normally after shunt placement, since the extra CSF is being drained off, but I still see no plateau in sight.

Norah also has a flat spot on the back of her head that we have been told would round out once she was sitting up. No change. In fact it almost seems to be getting worse, it looks like a dimple in the back of her head. That leaves us wondering if her shunt is over draining, not leaving enough CSF to cushion her head and let her head round out.

So today Norah and I head to Children's Hospital of Wisconsin and finally had a MRI. Norah was a trooper as usually, and as always a fighter. She fought the nurses putting in her IV and fought against the nitrous gas ripping off the mask. But after getting a fourth person to hold down my little 17 pound baby, an IV was place after the 3rd attempt and off to dream land she went.

Norah took almost two hours to wake up from her sedation. While I was waiting for her slumber to fade, I got a sneak peak at her images. Her images are still far from normal, but it was nice to see that black space that was previously filled with fluid that couldn't circulate was filed in with beautiful brain tissue. I sure we will not know what the report says for a couple weeks, worse yet until she sees neurology in November...what I know I told you before, Norah is doing great!

Life's Rollercoaster - along for the ride

Romans 12:12 Rejoice in hope, be patient in tribulation, be constant in prayer

This last year has brought many ups and downs for our family. Today I'd like to think that we stayed strong together, weathering the long ride, hopefully getting to be waiting in line for awhile. I truly believe that God won't give us more than we can handle, but I have definitely said a few prayers to help give me the strength to endure.

I have talked about Norah hydrocephalus, but haven't said much about some of our other stresses. Jason started a company with a few other men about 15 months ago, and starting a business is no easy feat. I make a long story short, there hasn't been any money for payroll the last couple of months. We have been living on an extremely tight budget. Also our insurance benefits that we have through COBRA are about to expire, and the subsidy that makes it affordable has expired. Thankfully I have been able to pick up extra hours at the hospital I work at which has helped out with out finances.


We have had a role reversal, most days Jason gets to hang out and play with the kids while I head to work. He still puts in time for his company, despite not being paid. In hopes of being paid in the future, the work must be done.


I feel so blessed to have Jason in my life. He is strong and steadfast, so patient with our children, he loves being involved with their little lives. He helps to keep me grounded and reminds me what our priorities should be, and not to worry about the what ifs.


Last week Jason's company received their first contract, and I increased my permanent FTE (hours at work), I now work two - twelve hour shifts a week. This way I work one day during the week and every other weekend. Jason works from home one day a week to care for the kids so it keeps daycare costs away, not to mention other people experiencing all these precious moments with our kids. Grant is now potty training and doing an excellent job. Norah's cephalohematoma is healing very well and she continues to amaze us daily with new accomplishments that we were told may never happen.


To put it simply, we are blessed.

Potty Training Success, at least stage 1

We have been working on potty training around here the last few weeks. We first introduced the potty chair in March after Grant turned 2, he was very interested in all things potty and bathroom related.

He would use his potty chair off and on since then, we never pushed training until a couple weeks ago, when Grant showed clear signs that he knew what was going on and just preferred his diaper. We started by having him run around naked at home for a week, and would use a diaper when we went out. He quickly mastered using the potty chair, for both #1 and #2.

The next step I was dreading, going out into public without a diaper. Our first few outings, it was as a family and Jason would take Grant to the bathroom, luckily enough there were urinals that were low enough for Grant to use. Then on Sunday we went to a starving artist show in which a port-a-potty was our only option, Grant put it best, "Eww, groody. No peepee." Yup. He's not a huge fan of the public restroom, but he has checked out the bathroom at every store we've visited this last week. He has at least been able to hold it until we have arrived back home to his singing potty.

He still is night trained and occasionally having accidents while napping, but we are getting there!!

In honor of one week using his potty, this morning was all things play-doh. Grant loves play-doh, I on the other hand think of the big mess of sticky little pieces that get tracked over the house. But I let those thoughts go and enjoyed our time together while little Norah napped.

White Chicken Enchiladas

Yum, yum, yummy, yum. Did I mentions these are yummy?

These have become a favorite in our house this summer after I discovered the recipe on another blog, Cassie Craves, worth checking out. Hope you enjoy.

White Chicken Enchiladas 
Souorce: Cassie Craves

8-10 soft taco size flour tortillas
2 cups shredded Monterey jack cheese, divided

2 cups shredded cooked chicken

3 tablespoons butter

3 tablespoons flour

1 can chicken broth

1 cup sour cream

1 7-ounce can diced green chiles

Cilantro for garnish, if desired


1. Preheat oven to 425 degrees. Mix together 1 cup of the cheese and the chicken. Place an equal amount of the mixture into each tortilla, roll up and place seam side down into a 9 x 13-inch pan.

2. In a skillet or saucepan, melt the butter. Stir in the flour and cook for 1 minute. Add the chicken broth, whisking until smooth. Cook over medium heat until thick and bubbly. Stir in sour cream and green chiles. Pour over the top of the enchiladas; sprinkle with remaining shredded cheese.

3. Bake for 20 to 25 minutes. Sprinkle with fresh cilantro.
 
**I have also substitutes shredded beef and pork from left over roast for the chicken, I think I may like shredded pork the best in this recipe. ~Jen

Bows!

Norah's hair is now long enough to wear these cute little bows, making her even more adorable.

We now need a place to keep them together and out of the hands of her 2 year old brother. That means it's time to get crafty!! This is what I made to hopefully keep her little bows together.

I love how it turned out, and it was super easy to make. Not to mention, it's a little piece of art for the wall. Now what to do with her headbands??