Dedication

As I mentioned in my last post, today, March 6, is the 1-year anniversary of Caden's discharge date from the hospital. He spent the first 8 weeks of his life inside the walls of Lucile Packard Children's Hospital at Stanford. What a great and glorious day it was for us to be able to take him home. And, I have to say it was a little intimidating as well. Our baby boy had so many health problems and had to have five surgeries in that time. We weren't sure if we would know how to take care of him. But slowly we became more confident. And he began to grow and develop in his own time and his own way.

During the past 18 months we have spent many hours on our knees asking God for strength to deal with Caden's life-threatening health issues. During my pregnancy, we had him annointed with oil (through me as the vessel). We placed the life of our unborn child at the feet of God and told him we would trust him. This is easier said than done and we often tried to take control back into our own hands with no success, reminding us once again to turn Caden back over to Him.

There are people around the world, many whom we have never met, who committed themselves to praying for Caden without ceasing. What a blessing for us to know that people were praying for our baby and for us. Throughout these many months, I have repeatedly been told, “you are so strong” in regards to how well we have weathered this situation. First of all I have to say, I am not strong on my own. All the strength I have comes from God. He gives me what I need. Second, I do not feel strong. Every day is a struggle. But I do what I have to do in order to fight for Caden and make sure he has everything in place to help him become the best person he can be.

With all that being said, I should get around to the purpose of this post. Today we had the most beautiful dedication service for him at our church. Our pastors allowed us to take up about 15 minutes of the service just for Caden. On this day, we dedicated him to God. It was such a wonderful program. First we played a slideshow documenting Caden's life. Most people do not really know what we've been through and what Caden had to endure. And, because we've kept him isolated at home for much of the time in order to keep him healthy, most people haven't gotten to know him either. After the slideshow, our pastor called me, Greg, Kyler & Caden to the front, as well as Greg's dad who is a pastor also. Our pastor said a few words and shared some scripture with us. Then, Greg's dad shared some thoughts and insights as well. Then the rest of our family was called up to join us as our pastor said a dedication prayer over Caden. At that point, we sat down and we had a friend sing “Bring the Rain” by Mercy Me whose lyrics are very meaningful to me. This song makes me cry every time I hear it. Here are the words in case you are not familiar with the song (you can also go to http://www.azlyrics.com/lyrics/mercyme/bringtherain.html and you can play the song):


"Bring The Rain"

I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray

Holy, holy, holy
Is the Lord God Almighty


When the special music was over, the praise team sang “He Knows My Name” which is another song we really like. It was a truly special day and Caden did amazing! He just looked around and took it all in. He's not used to being around large groups of people and I could tell he was a little overstimulated. He is usually pretty shy around new people and I was afraid he would cry when the pastor held him for the prayer. But he did great, Caden even leaned his head on his shoulder. It was so sweet!

I had a pretty hard time holding it together during the slideshow. It was kind of weird because I've seen those pictures a thousand times and I've lived through the experience, but there was something about the occasion today which caused me to be very emotional and the tears were falling freely. Thankfully I was able to pull it together before I had to go up front. But I could hear the reaction of the people in the church as they watched the slideshow. It definitely had an impact on them.

It truly was a special day and we are so blessed to be part of such a wonderful, loving, church family. Caden will be surrounded in love as he grow up. An amazing day filled with emotion. Sadness. Relief. Sorrow. Joy. Gratitude. Love. Hope. And so much more. Thank you all for coming along with us on our journey. It's going to be a long one and we've only just begun. Your prayers, love and support are what sustain us and help us get through each day. We love you all! Thank you!

I will post more pictures of the dedication later.

And, if you didn't already read my last post, it has lots of great pictures of our family. :)

Catch Up

It's been a long time since I've updated. Things have been really busy the last couple weeks. Mostly just our regular busy schedule but with some news which I will try to catch you up on now.

We continue to increase the volume of blenderized food Caden is getting through his g-tube. At this point, he is getting more than 2/3 of his volume from real food. The only formula he gets is at night and we are slowing reducing that as we are able to give him more food during the day. He continues to thrive on real food! His gross and fine motor skills and his cognitive ability have all improved drastically! In addition, he feels better overall and is retching less. What a huge blessing for him and all of us.

We also followed up with Caden's gastroenterologist. This was the first time we had seen her since we started Caden on the blenderized diet. I hadn't talked to her or to her dietitian about it beforehand. I was really nervous about how they would respond. I thought they would be more pessimistic about it and try to discourage me from doing it. I was pleasantly surprised by their reaction. I think they realized we were serious about it and that we were concerned about making sure he was getting the proper nutrition. I was really happy they are willing to support us in this process.

We had a follow-up appointment with the neurologist on February 18. It was a good meeting and left me feeling very positive. In his observations and exam of Caden, he said he was quite optimistic in how Caden was progressing. When I pressed him to see if there was anything in particular that concerned him, he said there were a couple minor things but he wasn't going to tell me what they were. He said that the things he saw didn't add up to any particular problem so he said there was really no point in mentioning them because he thought they were going to “move toward normal.” I thought that was encouraging.

On February 19, we were finally able to get Caden's 1-year photos taken. We really wanted outdoor photos and originally had them scheduled for January 8 (the day before his birthday), but due to freezing cold, wet weather, we had to cancel them. So on the 19th, the weather cooperated and Greg and I were both available as well as our wonderful photographer! We got some of the most amazing photos that we will treasure forever! Here are a very few of them...














Then, on February 24, we had a home health nurse start working for us. She works 5 days/week, 8 hours/day and helps take care of Caden. I'm almost embarrassed to mention this because it seems a little over the top. I really don't need THAT much help but I am very happy to have some help. But, the way things work with the nursing care is that it is almost impossible to find nurses that want to work less than full time. So we either had to choose to have a full time nurse or not have one at all.

The nurse is a very sweet, caring person who loves children. She really seems to love Caden which I appreciate. It is just an adjustment for me to get used to having someone in my home ALL the time. I don't have a very big house! But the best part about having her here is that it allows me to get out with Kyler to do things. Caden is able to stay home and stay healthy. It also makes it easier to go to the store and run errands. These were things I had to wait to do until Greg was home from work. The nurse makes this so much easier! She comes to all his doctor and therapy appointments and is able to do his therapy “homework” with him more often than I had the time to do. It should really help him progress more quickly!

On February 26, we had a follow up appointment with Caden's pulmonologist. He didn't have too much to say but he said to discontinue all oxygen at night. For those that might not remember, we were given oxygen to use for Caden at night following his hospitalization in October for respiratory distress. The doctors wanted to make sure we had it at home for the rest of cold/flu season in order to keep him healthy. He was on a VERY low rate and was definitely not dependent on it but it did seem to help him breathe easier and he has remained very healthy. But in the last few weeks, Caden had started to fight us so hard when we put the nasal cannula on him, that we decided to stop. He has had so much negative touch in his life and we didn't want to continue contributing to that. So, the doctor telling us to discontinue was more of a formality.

Today, Caden had his next (and possibly last) Synagis shot of the season. This helps prevent him from getting the RSV virus. He has been getting these every month since November. They told me today they thought this would be the last shot. They do testing to see how prevalent it is in our community and if they don't find much, they stop doing the shots. For now they said to plan on not having another one. If that changes, they will call us and let us know. It would be great if he doesn't have to get anymore shots but I would rather him have the shot than have him get RSV. So we will see.

Tomorrow is a VERY big day for our family. March 6 is the 1-year anniversary of the day Caden was discharged from Lucile Packard Children's Hospital at Stanford. What an incredible day to celebrate! So, we have chosen this day to dedicate Caden to God at our church. I will post more details about it later.

For now, I think that catches me up. Sorry if this post was all over the place!

Blenderized Diet

Since Caden was about 8 months old, we have been asking his doctors at what point do we give him something besides formula through his g-tube. If he was a normal orally eating baby, he would have started solid foods at 6 months. But every doctor always responded with the same answer, “He gets everything he needs from the formula.” But Greg and I really felt he was missing something by not getting real food. It just seemed logical to us that his body would need to learn to digest it. But we didn't do anything about it.

However, after we were referred to the intensive feeding therapy program, I connected with another mom who is on the waiting list as well. She told me her daughter, who is a year and a half, is on a blenderized diet (BD). The instant she said that, I knew that is what I wanted to do. She told me about an online forum for a group of families doing BD. I was able to join that group and it has been a huge help to me.

I have been very happy to find a couple moms who have taken the time to work with me individually (online) and help me develop a plan to transition Caden from formula to BD. And, Greg is very knowledgeable when it comes to nutrition so we worked together on this as well. I started three weeks ago with butternut squash baby food since that is what I had on hand. For that week, I did VERY small amounts through his feeding pump mixed in with some formula. Then the next week I made peas for him and used a syringe to push it through the tube. This week we added in avocado, again giving it to him with a syringe. I am sticking with adding one new food/week as I would do with an orally eating baby so I can monitor for allergies, etc. So far, so good!

I am slowly increasing the amount of food he gets at each feeding as I reduce the amount of formula he gets. I have eliminated one formula feeding during the day as it is entirely BD now. And, I am working on the second feeding. Within the next couple weeks I am hoping to eliminate all the daytime formula feedings with BD. The main concern we have is to make sure he is getting enough calories to continue his growth in height and head circumference. We are working with a dietitian on this and she said she isn't too concerned with his weight because currently his height-to-weight ratio is 90th percentile! So we have some wiggle room to adjust calorie intake.

I haven't talked to Caden's GI doctor about this as I decided to do it after our last appointment with her. I don't think she will tell me not to do it, but I am not sure she will be excited about it. But if Caden is able to continue to grow and develop on BD I don't think she will mind.

One of the biggest reasons I wanted to start this is because I kept hearing over and over again by families doing this that their children stopped throwing up or retching once they were off formula. That would be such a relief for us as Caden retches so much and it is so hard to watch. In fact, his retching got worse once he was completely off the breast milk. The milk lasted until he was over 11 months old which is fantastic and he was receiving formula all along as we used it to fortify the calories of the breast milk. But he wasn't getting nearly as much as he is right now on 100% formula. He just seems to be having a harder time tolerating it and is having a lot of mucous come out his nose/mouth when he retches. Mucous is usually a sign that there is something that your child is not tolerating. So I think it is time to get rid of the formula if at all possible.

The other thing that I keep hearing is that many kids who have been sensitive to volume of feedings are able to take more BD than they ever did with formula. Caden has been sensitive to volume due to having the Nissen fundoplication on the top of his stomach. It decreased the size of his stomach so it makes it harder for him to handle a lot at once. But I am hoping that once I get him transitioned to BD with the same volume that he was on with formula, that I can start to increase the volume at each feeding and therefore increasing the total amount he gets in a day. The only thing I'm not sure what to do with is his overnight feed. He has gotten that because he needed the calories, but maybe once we are able to get him on more food during the day and on a more regular eating schedule, hopefully we can eliminate those feedings as well. But I'm not really sure what I'll do until I get to that bridge.

It also stands to reason that if we can reduce or even completely stop all the retching, Caden would feel better and maybe his oral aversions would decrease. If that happened, it might make him more open to accepting food by mouth which would hopefully lead us to eliminating the g-tube altogether. But I am definitely getting ahead of myself as Caden has proven to us over and over again that he does things on his OWN time table, NOT ours!

I appreciate all your prayers as I progress with this. I really think Caden will benefit from having real food in his body instead of only chemically produced formula. I'll keep you posted. :)

CHD Awareness Week

February 7-14 is Congenital Heart Defect Awareness Week. This is a week that really means something in our family. Both Kyler and Caden have CHD's. We have been very blessed that Kyler's pulmonary valve stenosis was able to be fixed in a heart catheterization and he didn't have to have open heart surgery. But he needs to be monitored into adulthood to make sure his valve grows with him as he grows. Here are a couple photos of Kyler after his cath in June 2006, at 3 months old.




Caden's coarctation of the aorta is relatively minor in terms of heart defects. However, in combination with the right-sided diaphragmatic eventration and hypoplastic right lung, it made for a pretty scary situation with uncertain results. He had his heart/diaphragm surgery at 2 weeks of age.

This is Caden immediately following his surgery.


4 days after Caden's surgery, he had a pulmonary hypertensive crisis which caused cardiac arrest and his chest had to be emergently re-opened. Due to swelling, the doctors left it open for 3 more days before they closed it again. It's a pretty creepy thing to be able to look into your child's chest. I couldn't do it in person but I am now able to look at the pictures. In addition to leaving his chest open, they gave him drugs to keep him completely paralyzed. That was probably the hardest thing for me to see. When his eyes were open, they were vacant. Something you can't understand unless you've experienced it.


But today we have two boys who are amazingly healthy considering their heart defects.



1 in 100 babies born in the US are affected by CHD. To find out more about CHD, you can go to: http://www.itsmyheart.org/chd-information/chd-facts/ or http://chdbabies.blogspot.com/2009/08/chds.html. They both give lots of great information.

There is no cure for CHD, but with research and time, more and more children are getting a chance at a relatively normal life due to the amazing surgeries that are offered. If you know someone who works in cardiology, please thank them this week for all they do for kids with CHD and their families!

Greg & I with Caden's surgeon, Dr. Mohan Reddy, at LPCH on the day of Caden's surgery.

Heart Surgery Anniversary

Today marks a big day in Caden's life. On January 24, 2009, Caden was taken to the OR to repair his coarctation of the aorta and have his diaphragm plication. We had been waiting for two weeks since his birth for this day. It had originally been planned for the 23rd, but when we got to the hospital that morning, they told us it had been put off due to more “urgent” cases. We were really frustrated because we didn't know when it was going to happen. But we had to trust that things happen in God's timing, not ours.

But very early the next morning (Saturday), Caden's primary nurse in the NICU, Irene, called us in our room at the Ronald McDonald House and woke us up, telling us his surgery would be that morning. We quickly got ready and over to the hospital so we could hold him and pray with him before the anesthesiologists took him to the OR. Then, we had to kiss our precious baby goodbye and watch helplessly as they rolled him through the huge double doors to surgery. The moment we had been waiting for, yet were terrified about, all at the same time. The mix of emotions is incredible.

We waited for what seemed like an eternity. But finally Dr. Reddy came out to tell us the surgery had gone very well and that Caden was doing great. What an amazing feeling of relief. But we still had to wait awhile before we could see him in the CVICU. When we were first able to get in to see him, it was a little overwhelming. There were so many tubes, wires, drains, machines, medications, etc. It was almost hard to see our baby underneath it all. We definitely cried tears of joy that he made it through surgery well and that we could be with him again. We didn't have any idea what was in store for us, but at least he had gotten over that hurdle.

Happy heart anniversary, Caden. We love you more than words can express!

What Caden looked like when we first saw him after surgery. It's almost hard to see a baby in there!