The Royal Ball

Last night we had the opportunity to go to an event put on by an organization called Hope Kids. It's a group that sponsors movies, zoo nights, and other fun things for kids with serious medical conditions and their families. Last night was the Royal Ball. The girls had been counting down the days, and they had their costumes all picked out and ready to go.

  I just love how cute and excited they look in this picture.

 Here they are making royal banners. Leah's hair didn't last long, but it was really cute while it lasted.

 Leah meeting her favorite princess.

 Snow White

 Mulan

 Aurora

 Belle

 Rapunzel! She was really fun.

 Making their wands

 The blue fairy (from Pinocchio)

 Leah's face says it all.

 Blurry, but a good picture of them dancing.

 Merida (from Brave)

 Peter Pan

 The Mad Hatter

 Tiana

 Dancing with Alice (in Wonderland) and Tiana

 Gaston

 Prince Naveen (from The Princess and the Frog)

 Prince Charming

You can also see the ugly stepsisters behind them. I didn't get a picture with them, but they were pretty funny.

 Dancing with Merida

 A little rap session with Belle and Prince Adam (the Beast)

 The girls with their favorite princesses (this was at the end of three hours of dancing and the girls were pooped, not sad)

 They each got a unicorn painted on their face.

 This was the venue. It's a reception center called The Castle in Layton. It was beautiful!

Shannon had a great time tormenting Peter Pan. She kept chasing him around the ballroom and pulling on his shirt, and he was a good sport about it. I think the Mad Hatter was putting her up to it.

Leah danced with Cinderella almost the entire time. Every time I looked, they were holding hands. I said to Cinderella, "She's really attached to you!" and she said, "I'm really attached to her!" 

It was a perfect, magical evening for my girls. They have dealt with some pretty serious stuff in their short lives, and it's sure nice to watch them just be kids.

A Very Sick Little Heart

**Warning! Once again, this post contains graphic images of a human heart. Don't look if you get queasy!**

The pathologist came to visit us today. He sat down with us and showed us the anatomy of Christopher's old heart, and after talking to him and a few other doctors, it is clear that from a medical standpoint, there is no reason for this little boy to still be alive. This is me holding his little heart. The blue arrow is pointing to a valve in the pulmonary artery that comes off the heart. The red arrow is pointing to his aorta, and the complete lack of a valve. I looked very closely and I could see a tiny little fiber that used to connect the valve, but any other evidence that there was once a valve there was gone. For those of you who don't know what this means, I'll make it as simple as I can. When blood is pumped out to the body through the aorta, the aortic valve closes to allow some of that blood to flow through the coronary arteries, thus feeding the heart muscle itself. There is nobody in this hospital who can figure out how his heart was getting any blood. In other words, he should have suffered from a major heart attack. Go ahead and try to tell me that God doesn't still perform miracles! Obviously, there is a purpose to Christopher's still being alive.

Here's a comparison of his ventricles. On the top is the hypoplastic (extremely small) left ventricle. The actual chamber is smaller than the tip of my finger. In a healthy heart, this is the bigger chamber, as it is the one that pumps the blood to the entire body. On the bottom is the right ventricle. Quite a bit bigger!

This last picture was hard to take with an unwilling baby. He just wanted to play! Your heart is roughly the size of your fist. This is a comparison of Christopher's fist to his old heart. It's hard to tell from the picture, but the heart looks to me to be about twice the size it should be. That's happens with heart failure.

I had to include a cute picture to finish the post. Christopher and his daddy. These boys just adore each other. It sure makes my heart happy to have moments like these! We are so grateful to still have our son.

Busiest. June. Ever.

**WARNING! I have posted pictures of actual hearts, so if you're squeamish, you might want to pass on this post.**

Last month Christopher was hospitalized with gastroenteritis for about 5 days, went home, and two days later got readmitted for pneumonia. He came home after four days, then two or three days later we were right back in the ER. This time his only symptom was that he was needing a lot of oxygen. They ran all of the tests they could think of, and discovered during an echocardiogram that a few of his valves that had been stenotic (much more narrow than normal--he was born this way) had suddenly opened wide and were leaking like crazy. These leaks were causing the blood in his heart to just stay in his heart and not get to his body or to the heart muscle itself, causing massive heart failure. The transplant team got right on it, and within 48 hours he was listed for a new heart. It usually takes about a week to get someone listed for transplant, but Christopher was so sick they did it as quickly as possible. During that 48 hours, Matt and I met with the transplant coordinator, a finance coordinator, a pharmacist, the cardiothoracic surgeon, a social worker, a nutritionist, and several nurse practicioners. We signed all kinds of forms and were given what has to be about 300 pages of information.  Then the waiting began. We waited for the first week in the ICU while they sorted out his meds and feeding schedule. This was our bed (Matt and I took turns staying at the hospital):

 Christopher stabilized on the IV meds, so we got to move upstairs to the third floor to wait some more. While up there, we got him on a good schedule with music therapy, occupational and physical therapy, and child life with lots to keep him busy. We even got to go for rides in a wagon, which he LOVED! Here he is being a good boy and wearing his mask for our walk. He kept saying "Weee!"

 Here he is playing in his exersaucer. It was really nice to get him out of that bed!

Here he is playing on a mat of the floor.

The child life specialist brings new toys and activities for him to do each time she comes. This time she put shaving cream and paint in a bucket and put some toys in there. He was really unsure at first, but he got into it and enjoyed making a mess.

While he was making messes in the hospital, the girls were busy at home enjoying their summer. I was home with them for a few days when they each got a package in the mail from my sister, Heidi. That was one of the most thoughtful gifts we have received. They squealed as they opened their packages and saw candy, toys, games, and even seeds to plant flowers that are said to attract fairies! Shannon is SURE she is going to catch a fairy in her room now. Here they girls are making cookies and donuts out of play dough. It was really fun!

Then last weekend I was at the hospital with Chris when he suddenly spiked a fever of 104. His heart rate went into the 190s and stayed there for about 6 hours. The nurse drew lots of blood for cultures and tests, and eventually we found out that he had developed a staph infection and C-Diff, a gut infection. These are both pretty common infections to get in a hospital, but they made it so that we wouldn't be able to accept a heart while he was still symptomatic. He was given some heavy antibiotics and by Sunday afternoon he was completely symptom-free again. By Monday his cultures were coming back clean again, so we were back in business to get a heart. I was home Tuesday night when Matt called me around 10:00 to tell me that we got a heart! What a shock! I can't believe this all happened within about 3 weeks. I went to the hospital and the girls went to their Aunt Kate's house. The first thing Matt and I did when we were alone together was get on our knees and say a prayer of gratitude. We I spent a completely sleepless night, then the following morning they took our baby boy to surgery. He went in at about 10:30, and we waited some more. It was easily the longest, most stressful day of my life. We got a few updates just saying that the heart was on the way and that they were cleaning out scar tissue in Christopher's chest. Finally, at about 7:00 pm we got the call we had been waiting for. His new heart was in and it was beating on its own. The transplant team came about an hour later to tell us that he looked amazing and that we could go see him in about 1/2 hour. They all looked as tired as we felt. What a great blessing to have such a team working so hard for our boy! We absolutely love them. One of these days I'll get a picture of them with Chris.

They took my camera into the operating room and got some pictures for me. Here is Christopher's old heart, ready to be "ex-planted."

All the tubes, of course, are hooking him up to the bypass machine.

I like that this picture shows you how small things are. The pictures above could be an adult, but this one shows that it is very obviously a little baby heart.

Here is the beautiful new heart. Soon we will be writing a letter to the donor family, but I have no idea what to say. "Thank you" just doesn't cut it. They allowed a surgeon to remove their child's still-beating heart so that our boy could live. It makes me cry every time I think about it, and all I can do is pray that they know how much this gift means to us.

Another view of the new heart.

 Finally, here is my PINK boy! He looks SO GOOD! His lips are red!

See the blue number near the bottom of the screen? His oxygen saturation is 97%!!! Amazing!

 Perfectly pink toes! 

 What an absolutely amazing thing to have been a part of. God still works miracles! Thank you all so much for your thoughts, prayers, food, gifts, and love. We really, really appreciate it!

Cultural Celebration 2013

As I have mentioned before, Shannon is in 1st grade in a dual language immersion program and last night they did their annual Cultural Celebration. Each class did a dance and a song from a different Latin American country. It was so much fun, and Shannon was beautiful! 

Her class did a traditional Colombian Folk Dance. The video is a bit wobbly, and Christopher is kind of loud, but you get the point. The boy who speaks first is a native English speaker showing off his Spanish and the girl is a native Spanish speaker showing off her English. It took me a minute to find Shannon since all of them look alike, but she's there!

The other classes did a wonderful job, and all of the costumes were amazing! It was such a fun night. Thanks, Aunt Jeny and Uncle Mark, for coming. She was very excited to have you there! 

My Kitchen

Almost four years after moving into our house, I am finally satisfied enough with my kitchen enough to post before and after pictures.Here is what the dining area looked like before. 

And here is is now: (The apple was painted by my niece, Taraya. I absolutely love it!)

 Before:

After:

 Here is the kitchen area before:

 Here it is now! I LOVE the color. My mom started getting these green dishes for me a long time ago, and I loved it so much I decided to go crazy. It is probably the happiest room in my house.

Here's what we did: TONS of painting. The cabinets were a little bit pink before and they are snow white now. I re-glued and grouted about 12 of the tiles that had completely come loose. We replaced the faucet, had cabinets installed all the way around the fridge, got a new counter top, put in a dishwasher and a garbage disposal, replaced the window, and made curtains.