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.

Easter 2013

I didn't get many pictures this Easter for some reason. We did color eggs and the Easter Bunny brought baskets of goodies, but mostly I was just excited to take my whole family to church for the first time in seven months. 

Here are the kids after church.

Here is my handsome boy in his little suit. At church he acted exactly as I expected him to, scowling at all of the strangers sitting around us (he has some pretty serious stranger anxiety, but he warms up quickly). He also danced every time we sang a hymn. I don't think I stopped smiling the entire time. It was wonderful!

Things have been very good at our house lately. Shannon is excited to perform in a cultural celebration at her school. Her first grade class is doing a Colombian dance. I'm not going to lie, I'm really excited to see it.
Leah is a great helper at home. She usually cleans when I ask her to, and she has learned to write all of her letters and even spell some words.
Christopher, at 17 months, is now a whopping 17 pounds! He is army crawling, sitting by himself, eating everything (all day long), and he talks all the time. He probably has 15 words of English and just babbles the rest. Spring has brought a slight illness in our home (the girls have runny noses and Shannon has a cough, but they are otherwise fine), and Christopher has developed croup again. He will have another bronchoscopy in May to dilate his larynx again and pop any cysts that may have come back. He is still on oxygen, but I take it off when he's really active so that he doesn't get so tangled in it. We also have a cardiology appointment at the end of the month, and I will be sure to update then.

A Couple of Surgeries

Christopher finally stayed healthy long enough to have a few procedures done. He had his left tear duct probed and flushed because it was clogged, he had a bronchoscopy to see why he keeps getting croup, and he was circumcised. Here he is in the cutest little hospital gown, as happy as can be.

  One last shot of the goopy eye. (Yes, I munch on those cheeks all day long)

The bronchoscopy showed why he was having problems with croup. He had a few cysts that had formed and what's called subglottic stenosis (an abnormal narrowing right below his vocal folds). The doctor said his airway was the size of a newborn. This is pretty normal since he was intubated for two weeks after his first surgery. He will have to have this procedure done again in a few weeks to make sure the cysts don't come back.

Here are some shots of his airway. The top left is a picture of his vocal chords. You can see that the left one is in a closed position, and is pretty much paralyzed like that. The next two show the cysts just below his vocal chords, and the last one is a picture of his bronchi (where the trachea branches off to the lungs).

Top left is just another shot of the narrowed airway, then a shot of the balloon they used to dilate the airway and pop the cysts. The bottom picture is his airway after the procedure. Quite a big difference!

 Here he is just a few days after the surgery. No more goopy eye! He reaches for me like this all the time, and I can't resist.

Leah's turn! When she was born she had a pretty good sized umbilical hernia, as you can see here:

 She was pretty excited to have her own day at the hospital and get some attention. Here she is all dressed and ready to go.

 Daddy got her a present to open after she woke up. She carried it the whole time.

 They give kids the option of walking back, riding a tricycle, or riding in a wagon. She chose the wagon and the doctor gave her a Tangled book. We told her that the doctor would put a mask on her face just like her nebulizer and she would just fall asleep. She didn't seem nervous at all! She even got to choose the scent of the gas they would give her. She chose strawberry.

 She was very happy when she woke up. She just gave me a big hug and wanted her slurpee. Then she opened her present from her dad. She got a Star Sapphire action figure! She actually asked for this. For those of you who aren't total nerds, Star Sapphire is a character in the Green Lantern comics.

 A sleepy smile. She went home soon after waking up and stayed in our bed for the rest of the day. I had her sleep on her mattress on our floor that night because I thought she would wake up needing pain meds, but she didn't! The next day she didn't do much, either, but by the third day she was back to her normal activity. They let her keep the gas mask that still smells like strawberry, and she shows it to everyone.

Christmas 2012

A few days before Christmas we braved the cold and went to see the lights at Temple Square. It was beautiful!

Matt's mom came up for Christmas Eve. Both Matt and Christopher spent the morning at the doctor. Matt needed a prescription refill and Chris had another case of croup that he needed some steroids for. We almost took him to the hospital, but decided to give him another day on the steroids to see if he could get over it, and he did! The weather was terrible, so it was a nice day to stay in the house, listen to Christmas music, play, and eat. After dinner the girls did their program:

And here they are Christmas morning:

 Ready to open presents!

 These are the Hello Kitty hats that I made them. I'm not sure why Shannon has crazy eyes.

 It was another perfect Christmas!