Sunday, October 28, 2012

Out of the mouths...

A few days ago I heard Sara say something from the backseat of the car. What I heard was one of the strangest things. Apparently it is important to her because I heard it again tonight. It went something like this..."Mom? Some day I want to ride a racing camel. With boots on. And a helmet. And a seat with handlebars to hang onto. And a seatbelt."

Adam and Sara both have been into nurturing various stuffed animals lately and calling themselves mommy and daddy. I went into the basement and dug thru a box of preemie clothes today and brought up a pajama outfit, knit hat, and bib for each of them to use. Their eyes lit up! Adam woke up early from nap and went right to his "baby". He put him in his dump truck pajamas and sat him in a high chair. Then he put on his stocking hat and told me it was almost covering his baby's eyes. He went on "This is baby's bib for when he's eating. This is the hanger for when he isn't using the bib. I bought it on clearance."

Yesterday we had Trunk or Treat with the twins group. On our way home, we stopped at the neighbor's to show her the kids' costumes. Shannon and I were explaining how trick or treating worked and then we tested them. Okay, now what are you going to do when we get to Tammi's house? "Ring the doorbell!" That's right...and what are you going to say when she opens the door? "HI!"

Saturday, October 27, 2012

2012 Small Wonders Walk

Last weekend was one of our favorite events of the year - the annual Children's Hospital of Illinois Neonatal Intensive Care Unit Small Wonders Walk. It was started by a group of graduate parents as a way to raise money for the NICU to provide supplies and training and other things that will continue to make our facility one of the best in the country. We love seeing other graduate families. It's also the only time the kids have a chance to meet the doctors and nurses who cared for them as they are not allowed back in the NICU.

I would have to say in the 3 years we have attended, this was my favorite year so far.

First, the kids were old enough to get a balloon animal! Adam picked this awesome monkey climbing in a tree. Sara was visiting with a family with me so, in her absence, Adam chose a pink kitty on a leash for her.

Of course we headed outside and enjoyed walking together.

We beat the crowd getting back inside and went right to the face painting station. Sara selected the butterfly this year and Adam a spider with a web. She is so awesome!

What cracks me up is that while I am trying to take pictures of the kids, they are trying to glance over and see themselves in the mirror. First Sara...

Then Adam...

 We also enjoyed a concert by JulieK! I think their favorite song was The Lemon Shakeup.

Out of all the exciting festivities of the day, my favorite moment was just after we had a family photo taken. A couple pushing a stroller with a very tiny baby inside stopped us - "Excuse me, we don't mean to interrupt. Adam and Sara, right? We looked at their photos on the table of the Family Dining Room every day we were in the NICU last December. It helped us get thru the day and gave us hope." We had no idea who this couple was but they sure felt like they knew us. That is why we do the Walk, and that is why we volunteer on the Family Advisory Board, and that is why we reach out to mentor other graduate parents.

For those of you who supported us with prayer and financial support - thank you so much!

A mouse in our house!

And he knows how to fetch a ball and roll it back to you!

Sunday, October 21, 2012

Pumpkin carving extravaganza

The kids had been asking when we could go pick pumpkins to carve and my response continued to be "it's dark and we have to pick a pumpkin when the sun is out" or "dad's not home and we are going to do it as a family." Shannon spent a few days traveling with extended hours so he was off last Thursday - perfect day since it wasn't dark and we were having family time!

We chose an easy local option and drove just down the road to support a family farm. The kids thought it was so neat to jump out of the car and race to all the different groups of pumpkins. They had so many different kinds, they didn't know what to look at first--small ones, big ones, ones that were different colors, ones that had crooked necks like a goose, ones that had warts, ones that were big, and ones that were HUGE!

While Adam was busy picking between a big pumpkin and a HUGE pumpkin, Sara broke out into song and dance on the tent pole!

Adam finally decided his strong muscles could only handle a big one and Sara needed a "warty one." Shannon and I added 2 small ones--one striped that looked like a green pepper and one that looked like a cupcake with frosting. I chose a HUGE one that was green and orange because...well, because no one else had one that big!

We got home, chose our designs, set up our caving area, and started in. I got the top cut off my pumpkin and Adam's pumpkin. I tried to get the kids to just dig their hands in to clean out the gunk. Sara was all over it but Adam tried once and didn't like it. Instead he reached in and pulled out one seed at a time with a scoop!

I tried to poke my knife in Sara's warty pumpkin. Uh-oh. This thing was as hard as a piece of wood! Shannon...we are going to need some tools for this job!

By the time we got all the pumpkins cleaned out, we needed lunch and a break for nap. Once we resumed, we got our patterns taped to the pumpkins. Once again, my pumpkin and Adam's was easy as pie to cut the pieces out.

Sara's needed some tools that were a little stronger.

Just a few finishing touches that needed the dremmel. We had to take it outside to avoid flying pumpkin shavings, safety glasses and all!

The finished masterpieces--the kids were so proud! Adam chose a monkey and Sara a kitty.

Mine was the ghost.

And because it was so HUGE I carved an owl on the back side, too!

Thursday, October 11, 2012

Happy Birthday, Dad

Shannon's birthday was last week and I knew by experience with the kids that I could not plan anything prior to the big day or they would let all the cats out of the bag!

So I woke up the morning of his birthday and made my plan for the day. After breakfast, we were going to get dressed and load up the car. A great birthday gift idea came to mind and that was our first planned stop - Bradley University for a baseball hat. Shannon had mentioned a few months ago that he had never had a Bradley hat and he did not have any red hats, which is his favorite color! Tragedy. Then we would go to Culver's for an ice cream cake, followed by Alwan's for steaks, and Menards if we had time. My route was planned.

Of course the kids took off their listening ears for the morning and it took an hour to get dressed and out the door. I found a cooler to put the groceries in and got the kids strapped in their car seats. 10am and the clock was ticking. I turned the key in the Expedition and nothing. Dead battery. My heart sank. Of all days when I was trying so hard to plan something nice for Shannon. Fighting back tears of disappointment, I called my neighbor to see if she was home. She was helping another friend in need but offered that friend's husband to come give me a jump start! My hero for the day!

Within 30 minutes the kids were strapped back in and we were on our way, hopeful I didn't have any more problems that morning. So many hats to choose from at Bradley, but I think we made a great pick. Off to Culver's. Turtle or Brownie Explosion? After a few minutes, the kids settled on Brownie Explosion, which was a big hit with Shannon. Then to Alwan's for a hotel steak cut into 1/3 thickness and put in a bag to marinate, a few potatoes for the oven, and carrots to steam. Sounded wonderful already!

The kids decided on the way home that they didn't want to put the present in a wrapped box and instead leave it in the bag and hide it on Adam's bed. Shannon got home from work and they were beside themselves with excitement! Sara asked if she could start singing the song she had created. Adam wanted to give him the present right away and came running out of his bedroom with the bag. "Hang on, Adam, go put it back and give Dad a minute!" As soon as Shannon came out of our bedroom, Adam ran up to him empty handed and screamed "Dad we bought you a hat!" Then he turned to get it from his room, pulled it out of the bag, and put is on his head. Shannon got a good laugh out of that.

The steaks turned out awesome, some of the best I've made. And the ice cream cake was a big hit - chocolate ice cream with a chocolate cake base, chocolate drizzle and chocolate candies on top - how can you go wrong?!

Not the greatest picture of everyone but what can you do?

Happy birthday, Dad. Hope we made you feel special on your day. And big thanks to Rick for saving the day with the jump start!

Thursday, October 4, 2012

Urologist consult for Adam

I was expecting to go into the Urologist appointment with Adam yesterday and tell the doctor we weren't interested in any further tests at this time. The Nephrologist had indicated Adam's labs showed kidney function was fine, there were no abnormalities in his kidneys, and he doesn't have a track record of UTI's. Shannon and I were comfortable and prepared to fight for the "let's wait it out" approach because the dilitation in Adam's right kidney doesn't seem to us like it was causing a problem.

Well, so much for expectations!

The first thing out of the doctor's mouth was You probably aren't going to like what I am going to say but Adam needs a VCUG. And I responded "No, I don't like that."

That is the procedure Sara had a few months ago which requires putting in a catheter and filling the bladder with fluid and taking x-rays to see if fluid is flowing backwards from the bladder and into the kidney (reflux).

He said there is a partial blockage in the area where Adam's right kidney drains. "What? The Nephrologist ruled that out." Well, there is a partial blockage. I'm just not sure if that is the cause of the dilitation. Normally I would be willing to wait and see but I am highly concerned about the function of the right kidney. "Have you seen Adam's recent bloodwork from OSF a few weeks ago? I was told it indicated his kidney function is normal." No, I haven't seen the results but I am not convinced the function is normal. If the left kidney is fine and the right is not, the labwork will reveal it is normal and that is skewed. I am very concerned because whatever is causing the dilitation has caused the "meat" of his right kidney to become extremely thin. "This is the first I am hearing of this. The Nephrologist said his kidneys were fine."

Yep, how many contradictions did you count in that conversation? This is the joy of having 2 doctors to coordinate with and not being able to get all of us in the same room. Frustrating is an understatement. The Urologist actually pulled up Adam's ultrasound from mid August and showed me what he was talking about with the thinning. From what he pointed out, the meat of the right kidney is about 1/3 of the thickness of the left. He also showed me a line graph of Adam's Mag 3 scan. The left kidney had a red line and the right was blue. You could see the two lines running parallel with each other straight across the screen as the fluid was entering Adam's body and being processed. But when the Lasix was pushed to flush the kidneys, the red line dropped down to show it flushed but the blue line started to climb drastically uphill, uphill, uphill, until it dove downward. The doctor said that either means the right kidney finally drained on its own or the left kidney drained into the bladder and then the fluid came back up into the right kidney before it finally drained. He wants to completely rule out reflux before moving forward with any kind of surgery. If Adam does have serious reflux, he will assume that is what is causing the dilitation and the thinning. At that point we have another crossroads of deciding to wait and see if his body corrects that or move forward with surgery. If reflux is not present or is minimal, he will shift the focus to the partial blockage and consider that the problem, which also requires surgery.

I agreed to the VCUG.

Then we had to have a lengthy discussion because he didn't order sedation and that is what I wanted. He said he never orders them with sedation because it can alter the results since the urinary function isn't the same under sedation. Another conflict of information. I know someone who actually does the sedation and they perform it that way for him all the time and the radiologist performing the test says it does not affect the results. I told him everyone I talked to recommends that. Well, I don't know who you are talking to. The people in the room administering the test! Well, of course they would want sedation to make the child easier to deal with. I just want what is best for Adam and to me, that is sedation. Honestly, I felt strong-armed when talking to him. He said it was my decision but he wouldn't do it that way. We left it that I would talk it over with Shannon and make a decision.

We talked to some men who have had catheters. I talked to my friend who does sedation. We talked about our comfort level. We are doing the sedation.

The Urologist and Nephrologist have their monthly joint meeting on Monday to discuss patients they both see. I spoke with the nurse this afternoon and she will be at that meeting and will bring my list of concerns regarding the conflicting information. Sure wish I could be at that meeting!

I am wired to seek out consistent data and not rest until I get it. I am wired to ask questions until I understand.

I am also wired to be a mom, which means I will fight for my kids until my last breath. Another example of an instance where I am their best advocate!

Let's end on a lighter note, shall we, now that I am all fired up!

This was the totally cool exam table at the doctor's office. Honestly, the best part about the visit! It kept Adam busy for 20-30 minutes! I think it would make a great idea for a toddler bed if we turned it into a fire truck and made a ladder on top for a bed rail!

Tuesday, October 2, 2012

Random oddness

Having 3 year old twins certainly keeps life interesting! You never know what you are going to run into. Like the night I came home from work and rounded the corner to walk down the hallway and came across this. It's a stuffed animal bear crammed in a doll's stroller with blue sunglasses on.

Or maybe the night I was walking by the dining room and saw this out of the corner of my eye.

Sara has really been into putting "pretties" on everything. I wish I would have gotten a photo of her work on Ariel the mermaid. Or should I say Adam's work? The front of Ariel was facing Sara with 2 pretties nicely placed in her hair. The back of Ariel was facing me with 7 pretties randomly located in a rat's nest fashion. I made the comment about Adam's handiwork and Sara jumped all over that - "No, I put those pretties in!" I spun Ariel around to show her the back and you should have seen the look of shock and horror on her face as she said "I didn't do THAT!"

And then there's Sara's latest infatuation. We attended a picnic over the weekend and both the kids latched onto some free toys that were being given away. For Adam, 3 cars. Sara? A dinosaur. A brontosaurus to be exact. Which she has warmly named "Diney." The past few days we have found Diney is strange places. Strategically lined up over a doll's miniature travel potty. Can you find him in this photo of the kids' wardrobe closet?

How about a closer view?

Apparently he had a snack at the table with the kids tonight but I didn't notice until after I had put them to bed and was cleaning up.

God only knows what I will find next!