4th birthday party

This year we traveled to Wisconsin to have a joint birthday party with cousin Jordyn. Thankfully, Jordyn didn't mind sharing the spotlight and Adam and Sara were thrilled to celebrate with her! I am thankful Emily coordinated the theme and decorations. It was a great party with an awesome food spread.

Emily found a really cute idea for a cake and we decided to give it a try ourselves. I found a recipe online for how to make my own fondant.We split up the duties and I made the pigs. My aunt Robyn made the cake. I was so excited to see how it all came together. It was the hit of the party and everyone was calling for which part of the pig they wanted!

It was a cowboy-themed shindig and all three of these goofy kids were "wanted."

Sometimes it takes teamwork to blow out your candles.

Double the candles plus one for Jordyn...

Sara loved her new bead kit and Adam thought his new cars were totally cool!

This picture cracks me up of Adam looking over Sara's shoulder at the new book she got. Notice his hands in his pockets. It's like one of those moments where you blink and your child aged right before your eyes.

I can't believe how big Jordyn is getting. I still remember those giant brown eyes looking at me as she scooted around my hard wood floor 9 years ago.

This is the gift Sara got that is a reminder every day of how she isn't a baby anymore!

A rare photo of me and my aunt Robyn.

Meet my cousin Emily's new baby--Lincoln.

Four years as a family sure has passed fast!

I love how they love each other!

Finally...some good medical news

Let me rewind just a few days. Adam was scheduled for his post-surgical ultrasound last Friday. Sara's was supposed to be today but...the hospital tech actually extended a kind hand and did Sara's ultrasound while we were there Friday, too! Thanks!

After the ultrasound(s) we headed just down the road to the urologist's office. Hardly no wait and once we were in the room, he poked his head in and said "leave the kids here and come with me--I want to show you something." He pulled up Adam's ultrasound on the computer monitor and showed me a pre- and post-surgery shot. The dilation of his right kidney from the blockage was significantly less already. Initially the doctor said it could take up to a year for it to return completely to normal and it probably would never be 100%. We are well on our way down the healing path. In such a short time after surgery is very exciting. Another ultrasound in 3 months.

And then Miss Sara. He was a little concerned because both of her kidneys are dilated but then comparing the images to previous ones, they have been like that before. I asked if the 2 stones were still on the right and he said "they are all over." We also discussed the lab results from the stones she passed. I was told that they were infection stones, also called struvite. He said that was absolutely incorrect and the other doctor got the terminology confused. They are calcium phosphate, which means her pH is too high in her urine. All of her levels have come back fine, though, so that is another layer of confusion. The urologist wonders if the center of the stone was hard calcium phosphate and it was surrounded by soft struvite stone matter.

We got another x-ray today to have a comparison since she has been passing stones. The urologist called with the results--decreased calcification in BOTH kidneys! We thought originally the lithotripsy wasn't effective on the right but apparently it broke up the stones enough that they are passing, as well. Unless something major changes or she has a lot of pain, the urologist is going to leave her alone for a while.

This Thursday we have a visit with the nephrologist to check on her kidney function.

I think what I have learned is that I have to let go of the why's. Every appointment we have I learn that Sara is nothing like a textbook case. Her labs don't make sense with what is going on. Symptoms and levels of pain she has aren't common. A mixture of 2 different types of stones is rare. If the doctors are scratching their heads and have no answers, I need to just let go and stop pushing for an answer. She is who she is. God knows everything that is going on and I don't have to figure it out. I'm going to leave it in His hands. What I am going to do, though, is dance and celebrate!

Happy 4th Birthday

Up until yesterday morning we still didn't know what we were buying the kids for their birthday presents. One shared gift, two gifts, something small, something big. Thankfully, it all came together.

Shannon and I both worked partial days. Once the kids were up from afternoon nap, we headed to the hospital for our tradition of taking Cookie Shack cookies to the NICU staff as a thank you. We almost had a giant snafu when I learned that the Cookie Shack relocated and is taking pre-orders only with no store front. What?! How could this be? I talked to her on the phone this morning and explained it was our tradition for 3 years. Can you believe she agreed to make 2 dozen cookies and meet us at the hospital at 4pm? Her kitchen isn't even open yet for the new direction the business is going. But out of the goodness of her heart, she blessed us. It is such a wonderful family that owns that business - check them out sometime!

The kids got stickers from the receptionist and they chatted for a bit. Then one of the ladies took their picture and it was so adorable. They put their arms around each other and leaned their heads in--so cute! Here is the thank you sign we attached to the cookie box. It's amazing how many of the staff still remember the kids and enjoy seeing them.

Next on the evening's plans was dinner at a restaurant, kids' choice. Sara asked me this morning if I had made her a cake. Sadly, I told her no, because I stayed up too late working on her present...but she could pick to go to a restaurant that had cake. She got excited--"I want to go to Olive Garden and have chocolate cake!" I told her if Adam thought that was a good idea, too, we could do that. She ran into their room and explained to Adam, who was still groggy from just waking up "Do you want to go to Olive Garden tonight for dinner and have chocolate cake?" He woke up in a hurry and said "YEAH!" Then came the countless times of asking "Mom, do we have to eat food or can we just have cake for dinner?"

Not only did they eat their individual chocolate desserts that were free but then Adam picked up a giant fork and started digging into the Black Tie Mousse Cake that Shannon and I were splitting. Using the reverse camera on my phone, he is trying to clean himself up!

Finally it was time to head home and get their presents. Can we have them right now? Why do we have to put our shoes back on? I thought you said they were small? Why do we need to put our coat on? Why are we going outside? She is sooo my daughter...

It was fun to see how excited they both were.

Sara rode her motorcycle to the end of the cul de sac and back, waving at various things along the way and telling me all about her motorcycle. Shannon and Adam headed to the swingset area to scoop mulch. Adam didn't need any training on how to operate any of the levers. He even figured out how to unlock the seat and arm for the backhoe!

We ended the evening flying the kites they got from Grandma Marilynn. They thought that was pretty cool.

They kept saying what a great day it is and how thankful they were for their presents.

I am feeling pretty thankful for the presents that God gave me, too. I have never known what it's like to just have one baby to give my attention to or speak in generalities--I am constantly calling them by name so they aren't confused who I am speaking to. It was the plan all along to have a heart with enough love for two at once. I can't imagine my life any different!

To my son - you amaze me every day with how your mind works. You will grow to be a problem solver, I am sure of it. But you also have a side of you that is so compassionate, sensitive, and loving. You bring me such joy. I pray that you will become a man of great strength, tender-hearted, and of solid character.

To my daughter - when I look in your eyes, I see me. You are such a listener, taking it all in with wisdom far beyond your years. Your giggle is absolutely infectious. Keep me young and carefree--I would dance with you in the restaurant bathroom when the music strikes you again and again! You were born with a natural sense of knowing how to nurture. I pray that you will grow to be a woman with amazing wisdom who speaks her heart and uses her gifts to bless others. These past 6 months I have seen you go through things that some adults would not be able to bear. Your strength and perseverance amazes me!

I love you both and am so proud to be your mom!

Early birthday presents

A few weeks ago our favorite long-time friends were visiting and surprised the kids with early birthday presents! I didn't even know they had brought presents until Adam asked excitedly, "Mom, now that we are done with dinner, can we open our presents?"

Sure enough, Uncle Dan headed out to the car and brought in something for each of them. Adam was super excited to put together his airplane.

Then Aunt Ree whispered something in his ear and he headed upstairs...

Next we went outside. It was dark, cold, and we had flood-producing rains the day before. Why let that slow you down?!

 
Then it was back inside for Sara's present.

A princess puzzle! And a challenging one at that with curvy sides. What a great present for Sara - she loves princesses and we had been spending a lot of time on puzzles lately. Here she is posing with the completed project.

After looking at the preview of the picture I took, Sara told me I had to retake it because I was only supposed to capture the head of the puzzle! Oops...

A few days later it was time for a daylight flight. Over there, dad, fly it that way.

It flew all the way across the front yard and landed on the road!


You may be wondering about Sara's hat. She had a surgical procedure that morning and she wanted to wear the hat she had picked at the hospital.

Adam thought it was especially neat that every time the airplane landed nose down, the wings fell off as a safety mechanism.

Can't wait for their next visit!

This is what kidney stones look like...

WARNING: If you don't want a visual of what kidney stone particles look like and seeing something that has come out of someone else's body freaks you out a bit, don't read further!

However, if you have been following our journey and have a curiosity as to what these pesky things look like, below is a fascinating snapshot of our collection container that will be on the way to the lab shortly. We tried to drop it off at the hospital tonight but the doctor had not put the orders in yet so the lab refused to accept them. We are trying to get them analyzed ASAP because we don't know how long it will take to get results and we want them back by her next nephrology appointment on April 11.

It's crazy to me how many we collected. She probably passed about this amount, as well, before we started collecting. Some of the pieces are quite large. After not being able to get any results from what was removed in Boston, I am excited about the possibility of finding out exactly what the chemical DNA is and if it will lead us in any different direction for treatment.

A few less stones

Just a quick post tonight to say how excited I am to announce that Sara peed out some kidney stones today! I am certain that is what the unexplainable pain has been over the past week. They must have been moving. Twice tonight there were particles that looked like small grains of sand, some larger than others, in the toilet. I am hopeful that it is the ones from the left side that were broken up smaller. I will celebrate any step, no matter how small, that is in the direction of getting those things OUT!

Thank you is not enough to say to all of you who have been praying so fervently for my kids!

One stentless girl

Another excursion to OSF today to have Sara's stent removed on the right. As soon as the elevator doors opened and we stepped out, the nurse was waiting to take us back to pre-op! Kinda felt like someone was stalking me.

Sara removed her coat and shoes and weighed in - 27.8 pounds! Best news all day. One more pound and she will finally be caught up to where she was before her Boston surgery. She stepped off the scale so the nurse could check her height. They have a measurement chart painted on a mirror. Sara stood in front of it, flipped both sides of her hair back, and turned around to back up to the wall. Shannon and I just stood there dying laughing!

Surprisingly we went to a totally different pre-op room that we have never visited before. Sara meandered to the playroom for a bit and we found that the previous occupant had completely emptied the toy shelves and spread them all over the floor. Dr. Rhee nearly tripped over something while getting to Sara to mark his initials on the right side of her tummy. We expressed our concern over how Sara has been feeling over the past week. About 5 times she has run a low fever and complained of extreme pain, sometimes to the point of tears and curling in a ball on the couch. There has also been blood in her urine. Dr. Rhee asked if she has been pooping every day, thinking she could be constipated. He also said it could be from the stent. Call him in a few days if it continued.

Dr. Rhee was frustrated that I allowed Sara to eat breakfast, even though I was told she could eat as long as she was done by 7. He was running early today and could have moved surgery up if she hadn't eaten. He is going to schedule any future surgeries for first thing in the morning because he doesn't want her to go 8 hours without fluid as it's not good for her kidneys.

After he left Shannon and I both agreed that we know Sara better than the doctor does and her level of pain and other symptoms are enough for us to be concerned. I asked the nurse to call Dr. Rhee and say we wanted an x-ray today rather than waiting a few days and making another trip. I felt good about exercising my mom power and listening to my gut.


3:00 finally arrived and Sara told the nurse she wanted a piggy-back ride back to the OR instead of a wagon ride. The nurse said she was probably not the best person for that job and allowed Sara to go into a storage closet to pick any "ride" she wanted. I thought it was odd that she would turn a piggy-back request down from such a little peanut but appreciated her hesitation when the other nurses started teasing her about her ability to trip over imaginary lines on the floor!

10 minutes of putting in an IV and giving her sleepy medicine--peach this time. 3 minutes of removing a stent. 15 minutes of post-op discussion with the doctor. He said the x-ray showed that she did not have any poop in her so the pain definitely wasn't from constipation. Uh-huh. He isn't sure why she is having pain. Watch it for a few days and let him know.

Our biggest question is what do we do if faced with an emergency situation and one of the stones begins to pass, causing a blockage. He said there is only one weekend a year that both he and his colleague are out of town. Otherwise one of them is always available. And the emergency solution would be placing a stent to allow urine to drain while planning for what surgical option may need to be considered.

I asked what kind of time he wants to wait--1 year, 5 years? He really doesn't know. He wants Sara to get bigger. If another robotic surgery is needed down the road, the entry point at the opening of the kidney was already a very tight space for the surgeon in Boston. Now that surgery has already been performed, there is scar tissue there making a repeat procedure 3 times harder until some healing occurs. For sure we would not do both kidneys at once because it is too dangerous. He feels at some point we will need to get every last kidney stone fragment out to prevent recurrence. That will likely be either thru a repeat robotic procedure or by opening her up, removing the kidney, cutting it in half, and suctioning the stones out. A very risky procedure. He is unsure what effects the waiting will have on her kidney function.

In the imminent future, she will have an ultrasound in about 4 weeks. She also sees the nephrologist in mid April for another round of blood tests to check in on kidney function.

And so we wait. The waiting has become harder on me lately. Every time she runs a fever, every time she complains of pain, I am uncertain what I should be doing about it. Faced with no answers and nowhere else to turn, our faith is what remains to stand firm in all this uncertainty. It feels like the news we received in the NICU regarding Adam's Grade III IVH when we learned he had a 35-40% chance of CP but symptoms would not present for possibly a year or two. At that moment I couldn't even imagine how I could exist without the wondering being on my mind every single day. But it faded and we lived a normal life. That is what I will be working on now.