Wednesday, January 22, 2014
My sister, Lori, was 12 years old when I was born. She got married when I was six, so I don't have many memories of her living at home. When my twin and I were learning how to talk and couldn't say our R's properly, Lowee, repeated over and over again, became Weelo. We called her that for years. I do remember seeing her in front of the bathroom mirror, putting on make-up (from what I hear, she did that a lot), and I will never forget when she played the part of Ruth in the high school's production of "Pirates of Penzance." I was five years old, and I thought she was the most beautiful woman in the world.
(She's the one in red)
I got to know Lori better when my twin sister and I went and stayed at her house in Texas for a few weeks during the summer of 1993. We were 15, and Lori was married, with three children of her own. She was going to school during the day, so we took the kids swimming and played until she got home, then we watched movies and made delicious food. The kids were hilarious, putting on dance shows to the soundtrack of "Cats" and just being goofy. We even found a baby bird that was injured and tried to nurse it back to health by feeding it applesauce. I will always fondly remember that time.
Of course I saw her at family gatherings, and she and her family lived in Colorado for a few years here and there, but I really got to know Lori more when I was an adult. I went to school to become a paramedic, and since she had become a nurse practitioner, we suddenly found that we had a lot in common. I remember visiting her once and playing a game to see if we could stump each other with difficult diagnoses.
I served a mission in Texas, and Lori lived just a few hours away, so after squaring it with the mission president, she came to visit on Christmas day. She brought my other sister, Amy, as a surprise. That was a really great day. They had made me a danish pastry wreath, fudge meltaways, and hershey balls (all Christmas staples in my family), and for that day, I felt like I was home again.
After I returned from the mission, I was driving somewhere with Lori and she asked me if I had met anyone that I "liked" yet. I told her I liked a missionary that I served with, but that he was three years younger than I, so it was out of the question. She just looked at me as if I was stupid and said, "Why?" For some reason, it had never occurred to me that I could marry someone younger than I was, but when she said that, I immediately felt like it was ok, and that he was the one.
Lori wasn't without her faults. She really struggled with a few things, but she never gave up. Every time she fell, she got up, brushed herself off, and kept on going. Even through her trials, she was a huge support to me. I still have all of the letters she wrote to me when I was a missionary. She encouraged me in my learning of Spanish, and she was very excited for me when I finally got married at the ripe old age of 26 (all of my sisters were married by the time they were 21).
(Lori is in green)
I really grew close to Lori when I had Christopher. She texted me almost daily during the first month or so to get updates. We kept up with each other on Facebook, mostly, but there were occasional phone calls as well. I am very comforted by the fact that the one of the last things I said to her is "I love you!" She died a week later.
I sorely miss my sister. I miss the sing-songy way she talked (she was very dramatic). I miss her quirky Facebook posts. I miss her beautiful face. Our family choir will not be the same again in this lifetime. I love you so much, Weelo! I can't wait to see you again!
Thursday, August 8, 2013
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.
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)
The Mad Hatter
Dancing with Alice (in Wonderland) and Tiana
Prince Naveen (from The Princess and the Frog)
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.
Wednesday, July 10, 2013
**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.
Thursday, June 27, 2013
**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!