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!

Intensive Feeding Therapy

When we took Caden to see his GI doctor right before Christmas she told us she was going to refer him to an intensive feeding therapy program called Clinic 4 Kidz with Dr. Patel. This is a very expensive program and apparently it is not easy to get it approved through many insurance companies. But it is an in-home treatment with a very high success rate (96%) of getting kids to eat by mouth. Each treatment plan is tailored specifically to each child.

Once insurance has authorized services, Dr. Patel comes in and does her initial evaluation and give us “homework” to work on until our time comes up on the waiting list (there is currently an 8-month wait). Caden was put on the list the end of December, so by the end of August, hopefully we can get started. When the team of case workers come to start therapy, they come in for 5 days straight for 10 hours/day! Then, after that, they return for 2 days every month for 3 months, followed by 1 day every month for 3 months. And, over time, they reduce the frequency of their visits.

I started the initial legwork to find out whether our insurance will cover this or not. The initial response was a resounding “no.” They said they didn't think there was any reason why they would pay for us to have therapy to change how our child eats. Apparently they have never dealt with a child with feeding issues or g-tube dependency! This could save them money in the long run if we don't have to pay for the monthly feeding tube supplies. It's just really frustrating!

But I talked with insurance again yesterday and the person I normally talk to transferred me to someone else. I gave her the billing codes used for the program to see if they were covered. She said they weren't codes that were denied or ones with strict policies involved. From her perspective, she thought it looked like it would be something that would be covered without prior authorization. But she said the person I normally talk to would need to make final confirmation regarding medical benefits/policy. So, I need to call her again next week and hopefully we will have more of an answer.

In the meantime, I had asked our GI doctor to provide a letter documenting medical necessity for the intensive feeding therapy. They called me yesterday and told me I could pick the letter up. When I read it I was very disappointed in its content. I don't think it spoke to the therapy being medically necessary at all. I will not use that to submit to insurance. I am going to call the office back on Monday and ask them to do it again.

Another great thing about being referred to this program is I got connected with a feeding support group. This is an area I have felt very isolated in. Feeding issues are really emotional for me and the thing I stress about the most. So to be able to connect with other parents who “get it” is a HUGE thing! In fact, I talked to one of the moms on the phone on Thursday and it was such a relief! We have many of the same doctors and have experienced many of the same feelings. She also told me to have the GI doctor copy the majority of the letter of medical necessity that they wrote for her son to appeal their insurance. She said it was really well done. When I call their office back on Monday I will ask them to do that.

And, tomorrow, I am meeting up with another mom to talk about our kids feeding issues. I am just so grateful to have found this group. I have felt so alone in this area for so long and it's really discouraging. So things are looking up. I definitely would appreciate prayers that we can get this intensive feeding therapy program approved through insurance. We are really motivated to get Caden off the g-tube and eating like a normal child. I'll keep you posted.

Caden's Birthday Celebration

A week ago we celebrated Caden's 1st birthday. Reflecting on the last year is a little overwhelming. There are so many emotions, both good and bad! The immense joy of Caden being born followed by the incredible lows of him having 5 surgeries in a 5-week-period and spending the first 8 weeks of his life in the hospital. Then the amazing joy of bringing him home! The year continued with it's roller coaster ride of emotions. Caden had periods of great health followed by various procedures, surgeries or hospitalizations. And the cycle continues. Thankfully though he is doing amazing right now!

On Saturday, January 9, Caden celebrated his 1 year birthday! That is a milestone he wasn't expected to reach, according to almost all the doctors we saw during my pregnancy. We were advised to terminate the pregnancy because he would not live after he was born. They said he didn't have a chance at life. We are so grateful we trusted in a higher power and allowed God to intervene in Caden's life. Our faith in Him is what has gotten us through everything and will continue to sustain us over the next many years ahead.

On Sunday, we had a party with immediate family. Greg's parents, Greg's sister and her fiance were all here. (Most of my family was out of the country on a trip to India so they couldn't make it.) We put up a banner and had balloons, and I baked a cupcake for Caden and a big cake for the rest of us. I knew that Caden wasn't really going to be interested in eating his cupcake, but I was hoping we could at least get him to play with it and smear the frosting around.

When Greg set the cupcake in front of Caden with the lit candle on it, Caden reached to grab it and everybody in the room shouted and scared him half to death. Poor baby cried! It ended up being a little traumatizing for him because of that. But he recovered and ended up laughing a little bit. He really mushed the cupcake and frosting around and got the chocolate EVERYWHERE! With a little help, he got some on his lips, tasted it and gagged slightly. Oh well, we tried!












Caden had a good day. He enjoyed his new presents, had fun playing with family and smearing frosting everywhere. He is such a sweet, mellow, happy baby and for that we are truly blessed! I know the years ahead will not be easy. He has many issues which will continue to be a challenge for him and us. But I know that he is our special gift and I am amazed at how he has touched our lives and the lives of many others!

As I mentioned in my last post, I am working on a special book to honor this momentous occasion. I am compiling all the letters, notes and photos from everyone into a digital book that I am going to have printed. I am going to get two copies so that we can have one and Caden can have one when he gets older. This was the best way I could think to honor this wonderful milestone without exposing him to many germs by having a big party with lots of friends and family. If you haven't already emailed me something for this book, I would love to hear from you. It is not too late! See the post before this one for more details.

Thank you all for your prayers for Caden since before he was born. He is proof that God is real and present in our lives. What a testimony Caden will have as he grows up! I look forward to celebrating many more birthdays with him. :)