Piano Recital

Kyler had his very first piano recital on January 29. He has taken lessons since last summer but this is the first time he's had a recital. Greg and I were really looking forward to it so we could see him perform in front of a group.

The recital didn't start until after 7 pm so we got a babysitter for Caden. The kids' bedtime is 7 pm and we knew he couldn't handle being up that late and be rested enough for preschool the next morning. I was so glad we did that because we didn't end up getting home until almost 9 pm! 

 Playing the duet with his teacher

 Playing by himself

 All the kids who played at the recital that night

Kyler had chosen two songs to play. The first song, “Old Pig Donald,” played to the tune of “Old McDonald,” was played as a duet with his teacher. He did a fantastic job on that one! The second song he chose was “I Wish I Were a Fish” and he struggled more on that one. At home in practice he played it perfectly 100 times. But for some reason, he froze up and he told me later he got confused. Oh well, it happens. We are just proud of him for getting up there and doing it. It was a new experience for him and he did well.

Here he is playing his songs. :)

“Toofless”

I just have to say how absolutely adorable Kyler is with his top two front teeth missing! He pulled the upper left central incisor out on Friday night. It had been sticking straight out for the last week and I kept telling him I would pull it out for him. His teacher even offered to pull it out for him. But he wouldn't let anyone near it.

Then, Friday night, he kept complaining that it hurt and I told him the tooth had to come out and he needed to just pull it out. So, he wiggled it and twisted it around for a minute, then pulled down, and “POP!” I heard the root break and out came the tooth. He looked surprised for a second and then he was so proud of himself. It was so cute! And, how can you not love that adorable “toofless” grin?! 

Lucky, the Imaginary Dog

A couple days ago, Caden started telling me about “Lucky.” I asked him who Lucky was and he told me it was his dog who lives in our back yard. I find this quite adorable, especially considering Caden is absolutely terrified of dogs!

Every day he mentions Lucky and that he is in our back yard. So today I talked to him more about Lucky. The following are parts of our conversation. It was so cute!

Me: “Caden, have you fed Lucky today?”

Caden: “Ummm... Yes!”

Me: “Good, you have to remember to feed him and give him water. Is he still in the back yard?”

Caden: “Yes, he's still there. He's sleeping right now in his cage.”

“And, I have two other dogs too.”

Me: “What? There are three dogs in our back yard? What are the other dog's names?”

Some discussion follows...

Caden: “Their names are Burrito and Max.”

Me: “Where do they live?”

Caden: “Max lives in the front yard, and Burrito lives in the back yard.”

Me: “Do these dogs scare you?”

Caden: “No.”

Me: “How come these dogs don't scare you, and other dogs do?”

Caden: “Because these dogs don't get me.”

The conversation went on from there. But I think it is fascinating that he created not one, but three imaginary dogs because they don't scare him. I never had an imaginary friend or animal when I was growing up. And Kyler has never talked about any imaginary friend either. Kyler does NOT believe in Santa Claus or the Tooth Fairy also, even though we have never said they are real or they are not real.

It's just funny to hear Caden talking about these dogs in our yard. In fact, when we were in the hot tub this evening, Caden told me Burrito and Max got in the tub with us! Haha!

I think it's cute and I have no problem with him believing in his imaginary dogs. I'm sure it will pass in time. And maybe it will actually help him get over his fear of dogs in general. I can hope anyway! :)

Surgery Date

The results are in... Caden's open heart surgery will take place at LPCH on Tuesday, April 9. As of yesterday, January 18, everything is officially scheduled.

The cardiologists decided he didn't need any additional studies done prior to surgery. Before the cath conference on Wednesday, we were told he would probably have a perfusion study and a heart cath in the 2-3 days preceding surgery. But after discussing his case, the concensus was these studies weren't necessary. I am more than happy to not have to put him through anything unnecessarily.

Dr. Mohan Reddy, who did Caden's first surgery, and Dr. Teimour Nasirov, will be his surgeons. It is kind of a relief to have this scheduled and not be wondering anymore. But at the same time, I am left with a heavy heart because I know this is really going to happen. Thank you for your prayers as we prepare for this day.

Skiing!

I can't believe both my babies went skiing for the first time on January 18! What is even more great about that is they both had such great attitudes. There was no whining, complaining or crying. If they fell down, they got right back up and tried again.

Kyler and Greg rode up to Ski Bluewood with some friends in the morning. Caden stayed and went to preschool in the morning and when he was done, I picked him up and we drove up to meet Greg and Kyler on the mountain. When Caden first heard Kyler was going skiing with Daddy, he said he wanted to go also. I was skeptical at first, but then figured that I know a lot of kids who started skiing when they were 3, so he would be fine. I told him it would depend on whether Daddy could take him or not. That meant it also depended on how well Kyler was doing and if Greg still needed to help him or not.

When we got there, Kyler was in a group lesson for an hour and a half, so Caden got his skis and boots and Greg took him right up the platter-pull. Every time he came down the bunny slope with Greg, he had a huge smile on his face! It was so adorable. The first time they came down, he said, “I want to go again!” 

When Kyler's lesson finished, he continued to go up and down the bunny slope all by himself. I could see him the whole time and enjoyed watching his confidence grow. He just goes straight down the hill in a snow plow. At some point he's going to need to figure out how to do turns. But for now he's happy and he's doing so well. He didn't stop skiing until they shut the lift down and he couldn't go any more. 

It was so fun to watch both the kids experience something new and exciting. I don't ski. I used to ski but I never truly enjoyed it. And with the chronic back issues I have now, I don't think it would be a good idea to start skiing again. However, I think it's great that the boys want to do it. It can be something they do together with Greg as they grow up. If I had started skiing when I was their age, I probably would like skiing also. We hope to get back up the mountain a few more times this winter for the kids to ski some more. 

Lost Tooth!

Kyler's top two central incisors have been loose for quite awhile. Over the last couple days, the right one had become so loose I told him he just needed to pull it out but he couldn't bring himself to do it. It was really bothering him though because it wiggled around so much it made eating quite difficult!

This morning, I woke Kyler up for school and he found the tooth in his mouth, loose. It had come out completely sometime during the night! I'm just glad he didn't swallow it or choke on it in his sleep! Isn't he adorable with his toothless smile??? The next tooth will be gone soon also. What a cute age and stage! :)

LPCH Cath Conference

I got a call the other day telling me Caden's case was going to be officially presented at the weekly cath conference at LPCH (Lucile Packard Children's Hospital at Stanford) on Wednesday, January 16. During this conference all the cardiologists and surgeons decide if any further studies need to be done and determine whether or not surgery is needed and when. They also decide which patients are more urgent than others.

I remember when Caden was in the NICU waiting for surgery, he had to wait more than two weeks because there were other kids who were more critical than him. This was both a blessing and a curse because it meant he was doing well. But it meant that we had to wait longer for surgery and that meant a longer hospital stay.

So now we wait to hear from the surgeon in regards to the decision.

Sledding

Saturday, January 12, we decided to take the boys to the mountains to go sledding after church. They had been begging to go ever since they saw the first signs of snow in the mountains this winter. This was our first opportunity.

We loaded up the sleds, gathered up all our warms clothes and boots and headed up the hill. When we got up there, it was snowing and it never stopped the whole time we were there. It was also really cold that day, somewhere between 10-15 degrees! The snow was quite deep and Caden couldn't walk on it because he fell down too far. So we had to pull him to the sledding hill on one of our sleds. 

When we got to the sledding hill, it was pretty steep on one side, especially. Caden went down that side with Greg and it was a little much for him and he didn't want to go again. But after awhile I convinced him to go with me on the other side where it was less steep. 

Making a snow angel

Looking at the steep side of the sledding hill

Trying to keep Caden warm

Greg, Kyler and I stayed warm because we were working hard by walking through deep snow and climbing up the hill after sledding down. But Caden wasn't doing much work so he was getting really cold. He was getting a ride down the hill on the sled and was being pulled back up again since it was too deep for him to walk on his own. His hands were freezing even inside his gloves and he was “done!” I ended up taking him on the sled back to the car so he could thaw out while Greg finished sledding with Kyler. We waited there until they were done and then we drove home. 

It was so beautiful to see all the trees covered in snow!

We tried to have a good time, but I wasn't sure Caden enjoyed himself or not since he got so cold and was crying. But when I picked him up from school on Monday, his teacher told me he couldn't stop talking about how much fun he had sledding! So, I guess we made some good memories, despite how it appeared at the time. Hearing her report encouraged me to do it again, since I wasn't sure it had been worth it. I'm happy to know he had a great time, even though he was cold. Hopefully we'll be able to go a few more times this winter.

Anointing

In our church, we believe in the power of anointing sick or ailing people with oil and asking God for healing. Sunday afternoon, after Caden's birthday party, our pastor came to our house and performed a short anointing service.

All that is involved in this act is praying over the person, in this case, Caden, and then the pastor anoints the head with a small amount of oil. Caden has been anointed twice before. The first time was when I was pregnant with him. Here is our blog post about that occasion. Greg wrote that blog entry and did a great job explaining the Biblical background for anointing.

The second time he was anointed was while he was in the NICU waiting to have his heart surgery. He was five days old at the time. I mention it briefly in this blog post from January 14, 2009.

It was wonderful to have my parents, Greg's parents, and my sister and her family all here for the anointing. It made it very special to have them all involved. We continue to put our faith and trust in God and know that whatever happens, He will provide for us. 

Thank you to my sister, Cheryl, for taking pictures. Caden was wearing a new hat given my parents brought him from Antarctica. He removed it before it was time for the oil.

Caden's Birthday Celebrations!

Caden ended up having three different birthday celebrations. The first one was on his birthday, January 9, at preschool. I made cupcakes and brought them in to share with his class. They all sang “Happy Birthday” to him and then I passed out the cupcakes. It was so amazing because this is the first time Caden has ever eaten any of his birthday cake (or in this case, cupcake)! This is the first year he has been interested in eating food. Pretty awesome! He even picked out the specific cupcake he wanted the night before his birthday. And he made sure he got that exact one at preschool and devoured the whole thing!

Caden in circle time on his birthday

The class eagerly awaiting cupcakes!

 Caden chowing down on his special cupcake!

--> That night we went out to dinner as a family for his birthday. This is something we wouldn't have even considered doing a year ago! But the fact that he actually wants to eat now and asks for food is awesome. So we went to Mexican food. He loves beans and rice, so that's what he got. It is truly amazing how much can change in a year. I look forward to many more birthday dinners together!

Excitedly waiting for his food!

Then, we had a short little birthday at church, on January 12. He got to come to the front of his class and have everyone sing to him. He put the number of pennies into the little church for the number of years old he is. And then he got to blow out the candles and pick out a small gift. It was pretty cute!

Getting his pennies to count his age

So excited to have everyone sing to him

Blowing out his candles

The last celebration was the biggest one, on January 13. We had a lot of family come into town to celebrate with us. My parents, Greg's parents, and my sister and her family all came from out of town. One of Caden's babysitters came with her boyfriend. And Caden had two friends from preschool come also. The kids made bookmarks and played for awhile before Caden opened his gifts and we had cake.

A couple months ago Caden told me he wanted a giraffe on his cake. So I talked to our friend, Angela, who makes cakes to see if she could do that for us. Boy did she come through! She created an amazing cake with an adorable giraffe on top. It was truly amazing! Thank you so very very much!!!

Isn't this cake amazing?!

Caden EATING his birthday cake!!!

Caden with Deklan and Julia

Caden with Cousins Melissa & Rylan,

Aunt Cheryl & Uncle Kent

Caden with babysitter, Kathryn and her boyfriend, Adam

Caden and Kyler with my parents,

Grandma Janie & Grandpa Charles

Caden and Kyler with Greg's parents,

Grandpa Dan & Grandma Mary

It was a lot of celebrating for a little person. But considering all he's been through and all he faces in the next few months, I'm glad we had the opportunity to enjoy some happy times together! Four years old! It hardly seems possible. But here we are...

4 Years Old!

Caden turned 4 years old on January 9. It seems impossible to me that he is this old already. Because we are mentally preparing ourselves for him to have another heart surgery, his birthday reminds me even more of how far he has come over the last four years.

I am reliving the days leading up to his birth and the 56 days he spent in the hospital fighting to survive. I remember how well he did at birth and how surprised the doctors were that he was breathing well on his own and they didn't have to intubate him immediately. I remember receiving the official diagnosis of coarctation of the aorta which required surgery. I remember the twice daily (or more) chest x-rays. I remember living at the Ronald McDonald House for three months. I remember him spending two weeks in the NICU before his surgery. I remember the pain of watching the anesthesiologists wheel him into the operating room for surgery and not knowing if I would see him again. I remember seeing him after surgery with so many tubes and wires coming off of him, I could hardly even see my baby. I remember the phone call from the doctor telling me Caden coded and I needed to get back to his room immediately (I had only left his bedside to go eat lunch). I remember them leaving his chest open for three days after resuscitating him. I remember finally being able to hold him again after they were able to get him off the ventilator. I remember finding out his left vocal cord was paralyzed and learning he would have to have a g-tube placed. I remember him spending five weeks in the CVICU. I remember finally getting to move to the step-down unit to get ready to go home. I remember spending a week there. I remember discharge day and the immense joy we had at leaving the hospital. I also remember the anxiety and fear of bringing such a fragile baby home. I remember being overwhelmed at the amount of care he required. And, I remember as things got easier to manage with the g-tube. I remember starting all the early intervention therapies: physical therapy, occupational therapy, speech therapy, feeding therapy, warm water therapy. I remember seeing the progress he made every week thanks to the amazing therapists. And I also remember friends and family alongside us supporting us and lifting us up throughout the journey. We couldn't have done it without all of you!

Caden has come an incredibly long way from where he started. He is a living, breathing, walking miracle. My heart hurts so much knowing what he faces in the next few months. I wish I could take that pain away from him. I wish I could take his place. But that is not an option. However, I know there is a place where he will have no more pain and his heart will be made perfect and whole. That is what I hold onto.

For now, I try to remember the miracle he is. He is such a blessing in our lives and I know he has big things in store. He is such a fighter and he will continue to do so. A lot has happened over the last four years. But I have a feeling it is insignificant compared to what lies ahead. I don't know what it is but I can't wait to find out.

Happy birthday to my “big” 4-year-old! We love you so much, Caden, and are so happy you are part of our family. 

Scimitar Syndrome

I finally got a call today with the results of Caden's MRI. We have been waiting for these for about 2 ½ weeks now. It turns out that Caden has “Scimitar Syndrome.” This is a well-known but very rare condition where the right pulmonary vein drains into the right atrium instead of the left. It is also commonly associated with hypoplastic (small) right lung which Caden has. In addition, his right inferior pulmonary vein drains into the inferior vena cava. And from what the surgeon tells me, this combination of defects makes things very complicated.

Normal pulmonary vein circulation carries oxygenated blood from the right lung to the left side of the heart. But in case of the Scimitar Syndrome, an anomalous vein connects between the pulmonary venous circulation and systemic venous circulation which creates a left-to-right shunt. Scimitar syndrome is a rare congenital anomaly in which a part of the right pulmonary venous blood return to the inferior vena cava. When seen in an X-ray the anomalous vein resembles the shape of a “scimitar” sword and hence the name scimitar syndrome.

I am unsure as to the statistical occurrence of this syndrome, but I have heard 1 in 10,000, and 1 in 100,000. Either way it is not very common.

At this point, the surgeons feel it is necessary for Caden to have some more studies done prior to surgery. At this point, that means a perfusion study and a heart catheterization. The perfusion study is non-invasive but the heart cath is not. Right now the thought is to do these studies in the 2-3 days immediately preceding surgery.

I asked the surgeon how the repair would be done and he said they can either detach both of the pulmonary veins and re-attach them in the correct places. Or, there is another option of creating a baffle (tunnel) through the atrium wall by making a hole (creating an ASD) thereby directing blood into the left atrium. He said the decision of which option they choose is made in the operating room.

We were talking about having surgery at the end of March at Sutter Hospital in Sacramento. However, based on the new level of complexity, we aren't sure that is the right fit for Caden anymore. We may go back to Stanford or possibly somewhere else depending on what is best for him. We have full confidence in the surgeon at Sutter, but if we have surgery at Stanford, we are hoping he will participate in surgery there as well. We are just thinking since this is so rare, we should consider being at a facility that is used to dealing with more complex cases.

As I write this blog entry, I am taken back to the feelings of uncertainty and being overwhelmed that we felt before Caden was born. Even the first two weeks after he was born while we waited for him to have his heart/diaphragm surgery. It seemed that every day, or multiple times/day, the information we received changed. Every doctor we spoke to had a different opinion and it seemed impossible to get everyone together to talk about it at one time. It was very stressful as we were just trying to keep our heads above water as we struggled to hold it together emotionally.

Now that we are considering having surgery at Stanford, this brings back another rush of emotions. It brought back a lot of difficult memories just in the short time we were there in December for Caden to have an echo and MRI. And now to be discussing having surgery there brings back so many other bad memories. Caden coded and had to be brought back to life when he was just 2 ½ weeks old. That alone makes it hard for me to want to spend any time in the hospital. Thinking about living in the Ronald McDonald House for three months when Caden was born reminds me how much he struggled to survive.

It is so discouraging to come from a place of feeling like we were over the worst of things. That Caden was doing so well and had come so far. Only to feel like we are going backwards. In many ways this surgery will be much more difficult for us to deal with than when he was a baby. He is older and has more opinions about everything. He will be much more likely to remember this one and the pain he experienced. For these reasons alone (and there are many more reasons), this surgery is going to be very hard on our whole family.

I have been working on some ideas of how to prepare him for surgery. But for right now, we are choosing not to tell him or Kyler about because we don't want either one of them stressing about it. We want to wait until things are more concrete in terms of surgery date. And we want to get much closer to the actual date. So please don't mention it to either of our boys if you talk to them. And if you ask us questions about it when the kids are with us, don't be surprised if we don't answer you or change the subject. We just don't want them to worry about things before we have more details in place and before it's absolutely necessary.

Our “Diary of Hope” continues. We continue to put our hope and trust in the Lord Jesus Christ. He has sustained us throughout our journey so far and we know he will continue to provide for us no matter what happens. Thank you so much for your love and prayers! You have no idea how much it means to us to know that we have people around the world lifting us up in prayer. Thank you!

Happy New Year!

Welcome to Twenty Thirteen! It's hard to believe another year has come and gone. We have officially lived in Walla Walla for more than a year now. I can't believe that! Time is just flying by.

This year promises to be a year of big things in our house. The biggest of these being Caden's upcoming heart surgery. We are still waiting for results from his MRI to get an official diagnosis. But it does appear he will require surgery in the next few months.

I don't really make New Year's Resolutions, but I really feel like I should exercise more. Well, that's a little misleading because it implies that I exercise some, when in reality, I don't do it at all. So I guess I should say I need to start exercising so I can be healthy. What resolutions/goals did you make this year?

We have been on a journey over the last four years and it appears the journey is far from over. Just when we thought all the heart issues were behind us, we are facing more uncertainty ahead. If you pray, please keep us in your prayers. And I will do my best to keep you updated on the latest with our family, and especially Caden.

I am reminded again how appropriate the meaning of his name is: fighter. Boy is he a fighter! We praise the Lord for His blessings in our life and know that by trusting in Him, we will get through whatever we face, even if it is difficult.

I pray this is a year of many blessings for all of you who follow our blog.