Tuesday, February 9, 2010

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. :)

Sunday, February 7, 2010

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.